Living With Chronic Pain and Depression

Changes and Getting Stuff Done

2012-01-24T18:06:00.000-06:00

As I have mentioned before my brother, Brian, lives with me along with his fiance, Stephanie, and their daughter Bridgette. Brian's eldest child moved in about 5 days or so ago. She is 17 and her name is Heather. She is a sweet, cute, lovable, intelligent person. I'm not sure why but since she arrived I have had more energy to do things than I've had lately. I've spent more time in the living room in the past couple days than I have in months. I've greatly enjoyed talking with her as well. Maybe this response in me is a result of having someone new in the house, which brings new energy. I had a similar response when Stephanie and Bridgette moved in 4 years ago, then again when Brian arrived.

I've been battling with my depression and the apathy it causes for a while now. Both got worse after the yard sale I ran in April 2011 because my pain got a lot worse. It is so hard to struggle against depression and the apathy it causes. It takes a great deal of energy and most of the time I just don't have that energy. I just can't summon the energy. Even worse, I can't summon enough emotion to actually care to do anything. I know this just makes things worse. I know that part of fighting depression is to choose to do things even when you don't want to because medication is not always enough to remove depression.

Well for the last 5 days or so it has been a bit easier to actually feel the desire to fight back and to do things. So I took advantage of it. Yesterday I went through the piles of mail that was sitting on my night stand and some on the desk in my room. Since I pay my bills online, I tend not to open the ones that have the same payment amount every month (Mortgage, car payment etc.). Since I now keep the payment information, including the confirmation numbers on the computer in word documents, I no longer write on the bill itself like I used to. (paid, date, amount, check #) So all the papers were piled up waiting to be filed. I went through all of that, filed every thing, then put all the stuff for 2011 into large manila envelopes ready for storage. I did some cleaning in my bedroom and some in the living room, including cleaning the interior of my desktop computer. I also did our taxes for the year.

Last night was a rough night, very stressful. I did not sleep well, kept waking up from pain. I also spent a few hours talking with Heather to help her deal with things that were bothering her as well as her own depression symptoms.

Today the weather is doing the "waiting to rain" thing. The sky is completely cloud covered, it is very cool and the air smells like rain.

As a result of those three things (doing stuff, stress, lack of sleep), my pain is very very high today. I've been sitting at a 9 all day. About 20 minutes ago my younger niece Bridgette stepped on my toes (one of which is infected and hurts) causing me to lose my balance and fall. As a result my pain is now rising and I am headed for a pain crisis. I took my breakthrough meds in the hope that it will keep me at a 9 and thus avoid the pain crisis, but I'm not sure it will work. It rarely works when it is a fall that causes my pain to go up, specially if I fall on my hip or buttocks as that causes intense jarring of the bones in my pelvis that are broken. Broken bones do not like being jerked around LOL

Despite the higher pain level, I still feel pretty good mentally. I felt very accomplished and proud of myself yesterday, and despite today being a very bad pain day, I still feel satisfied, proud, and like I accomplished something. Those are good feelings. :)

Another thing that made me feel really good today was a package that came in the mail. I ordered a Nightmare Before Christmas hoodie for Heather. Kind of a "welcome home" gift. She is really happy with it and it made me feel good to know she likes it.

OK I have to lay down. sitting is just hurting far too much.

I'm hoping that I can continue to find the energy to fight back, especially against the apathy.

Re-enactment of First Appointmet with Pain Management

2012-01-19T22:00:00.002-06:00

I made a little video of what often occurs when a chronic pain patient goes to their first appointment with pain management. This video is based on both my personal experience, and my recent research/reading into chronic pain.

Chronic pain patients are required to sign contracts with their pain management physician. Many of the stipulations in these contracts remove the patient's rights to privacy of their medical information as well as removing the constitutional rights that require law enforcement to obtain a warrant (meaning need to show probable cause to get such a warrant) in order to get the medical record. These contracts also often contain false information regarding what is drug seeking behavior, physical dependence, and tolerance to pain medication. Also they rely upon presumptive testing that is widely known to be inaccurate in order to deny treatment. Basically these contracts are set up in such a way that every chronic pain patient will eventually violate some part of the contract and lose treatment. Depression is NOT drug seeking behavior, it is a common occurrence with ANY chronic illness, not just chronic pain.

To learn more, including information about the so-called studies that the DEA rely upon to call prescription drug abuse an "epidemic" when the numbers don't support it. To learn more about chronic pain, contracts, and more:
http://www.dailykos.com/story/2011/04/06/963719/-Chronic-Pain-Patients-Lose-Their-Rights
http://pain-topics.org/ for updates on studies http://updates.pain-topics.org/

To learn more about Richard Paey, an example of the unfair investigation procedures and prosecution on chronic pain patients see here:
http://www.november.org/thewall/cases/paey-r/paey-r.html

National Pain Awareness Month?

2012-01-18T10:58:00.000-06:00

I had not heard of this before but apparently September is "National Pain Awareness Month". It shares the month with "National Alcohol and Drug Addiction Recovery Month". It does not surprise me that they combine the two into the same month, specially since the misinformed information they give out about opiod drugs, chronic pain patients and prescription drug abuse are heavily heavily skewed towards addiction.

Why aren't support groups such as American Pain Society and others, using this designation for the month of September to educate the public about chronic pain? Especially since, depending on which study you believe, there are anywhere from 50 million to 114 million Americans suffering with chronic pain.

Maybe those of us who suffer from chronic pain and also blog or participate in support forums (email groups, posting boards etc.) should spread the word and during September try to educate others through blog posts and facebook "notes" etc. about the reality of chronic pain.

Balanced Questioning of Opiod Use and Chronic Pain

2012-01-17T20:32:00.001-06:00

Because my doctor has found it necessary to hire a defense attorney to give him guidelines to reduce his risk of attracting the attention of the DEA and being prosecuted I started doing some reading. I have been apalled to see some of the things being reported, such as patients being arrested and sentenced to long jail terms (25 years) for taking needed pain medication obtained through a legal prescription (research: Richard Paey).

Anyway I came across a site that seems to be providing information that is not fear based, sensationalized, and presents both sides of the issues regarding opiod analgesics and treatment of chronic pain. Check it out:

http://Pain-Topics.org

Many of the articles are written by doctors, including practicing pain management doctors. They study and present the sensationalized reports put out by government and governmental agencies, pointing out inconsistencies and distortions of data. For example: more people died of alcohol related injuries than opiod overdoses yet the government isn't calling alcohol consumption an "epidemic".

Negative Effects Of War Of Drugs In Florida

2012-01-15T07:36:00.001-06:00

I understand the need to fight drug dealers. I understand that they engage in many illegal activities in order to sell their illegal drugs. They steal from others. They are violent and will commit assaults and murders. I understand they tend to be dangerous people, often associated with particular gangs or other organized crime groups. I understand that Southern Florida apparently has many pain clinics, staffed by doctors, who are willing to write prescriptions for narcotic pain medications for people who do not really need them, instead they sell the drugs on the street. I understand that some of these people are allegedly well aware of what they are doing when they supply people with prescriptions for these drugs. I understand that they allegedly will write prescriptions for whatever the person asks for, in whatever quantity they ask for it, in exchange for a cash payment for their services.

I agree that these practices are wrong and are contributing, in part, to illegal narcotic drug trafficking.

However I do NOT agree with how the state is choosing to fight these so-called doctors and drug mills. Their chosen methods of dealing with this is making it impossible for uninsured people to receive the medical care they need!

In order to gain public support for their actions, they present all pain management doctors and clinics as nothing more than "legal drug mills". They present all chronic pain patients as "drug addicts". They engage in mass mis-information in order to gain public approval for their actions. As a result honest chronic pain patients are discriminated against on the grounds that "all chronic pain patients are drug addicts".

What they are doing is harassing any doctor who treats chronic pain patients, and causing chronic pain patients to be treated like drug addicts. We are required to undergo drug testing every month. Our prescriptions are closely monitored and dated exactly 30 days apart. We used to get a bit of overlap so that the patient didn't run out of medication should their appointment need to be rescheduled. Now, when the office sets my appointment on a day that is after I run out of medications, I have to suffer with the withdrawal symptoms and rebound pain because if the doctor writes a script without the urinalysis they can go to jail. Also he is not allowed to write a small script to cover the days between the end of my 30 day supply and my appointment. The doctors are no longer allowed to decide what is the appropriate dose for a particular patient, instead they are cautioned against writing a prescription over a specific dosage amount in order to keep their practice from being "investigated". This leaves patients who need a change in dose unable to get it, meaning they end up suffering with higher levels of pain than they should have to.

As if this isn't bad enough Florida is now making it even worse. Their rules have now made it impossible for my daughter to receive the medical care she needs because she pays cash.

The state has decided to investigate every chronic pain doctor, whether they have reason to believe the doctor is engaging in illegal activities or not. As a result my doctor has hired a lawyer, to provide guidance on reducing his risk of being accused, just in case. On the recommendation of the lawyer, the doctor has to stop accepting Medicaid patients and any cash paying patient who wishes to see him for pain management. The reason for this advice is that the majority of drug addicts who doctor shop (see more than 1 doctor to get meds) are usually cash paying patients or on medicaid and the doctors who are willing to provide prescriptions to addicts (the ones who actually run drug mills in southern Florida) and dealers will only accept cash payments for the office visit. This means my daughter, who has been a patient in this office for 5+ years, can no longer see this doctor as she has no insurance and pays cash for the visits. So as a result of this "War on Drugs" (which we have already lost) patients who need treatment can not receive it if they are on medicaid or pay cash! Exceptions can NOT be made for patients who can show very obvious conditions or injuries that would require pain management, nor can they be made for patients who have already been with this same doctor for many years and have never shown any signs of illegal activity or addiction, if they're on medicaid or pay cash. It is a case of "too bad, so sorry, go somewhere else"!

My daughter has some major damage to her lower back from a car accident. Her vertebrae no longer sit correctly one on top of the other, one of hers has slid off of the vertebrae beneath it by 50% (this is called Spondylolisthesis ), she also has spondylosis (aka degenerative osteoarthritis), degenerated disks, a large herniated disk (that literally surrounds the sciatic nerve root at L3-4), nerve damage to sciatic nerve roots (L3-4, L4-5 and L5-S1) causing permanent sciatica, and suspected sacroiliitis. As a result they had to fuse her spine in this out of alignment position because the first attempted repair failed when the vertebrae slid off again despite the screws that should have held it in place. She now has rods, screws, plates, and posts in her lower back holding her spine together. As a result of these injuries she lives with constant pain and constant sciatica. She has been seeing the same doctor for pain management for over 5 years. She has never failed the drug screening. She has never shown any behaviors that are considered signs of an addict (such as losing scripts, constantly demanding an increase in dose or frequency, losing the medication itself etc.). Despite all of that, she has been discharged as a patient from her doctor just because she pays cash.

Not all pain clinics and pain management doctors engage in writing prescriptions for people they know are going to sell the drugs. My experiences with these clinics has been the exact opposite. It is very difficult to obtain prescriptions for pain control.

Every month I have to undergo urinalysis drug testing to ensure that I am not taking drugs I wasn't prescribed, doing illegal drugs (such as cocaine or pot) and that the level of prescribed medication in my urine is the correct level for the dosage I was prescribed. When or if my needs change (due to further injury or tolerance to current dose) it is extremely difficult to get my dosage changed as well. In fact, I was told a few months ago that no matter what they will not increase my dose any further and that I will just have to "live with" any increase in pain or new symptoms. Which I have been doing for the last 8+ months due to further injury caused by the yard sale I ran back in April 2011. This means I am now pretty much bed-ridden and will stay that way for the foreseeable future and my daily pain level stays around a 6 to an 8.

So the results of the war on drugs in Florida are that patients who need treatment can't get it if they are on medicaid or pay cash and patients who are receiving treatment can't receive proper treatment because the doctor can be arrested for doing their job.

This is WRONG!

Law enforcement agencies and lawyers (be they prosecution type lawyers or other types of lawyers) should NOT be the ones making medical decisions for patients, the doctors should be.

I am terrified of how much worse this is going to get when Obamacare goes into effect. My understanding is that with Obamacare pain management doctors will be given a limit of how many controlled substance prescriptions they can write in a month. If they go over that number they can be arrested and charged with drug trafficking. As a result of this, how many more patients will end up without treatment? Example: doctor has 31 pain management patients. Gov't tells him he can only write 25 controlled substance prescriptions per month. This means 6 patients will go without pain management.

Further, it is my understanding that under Obamacare a government panel will decide what injuries deserve pain management and what dose is appropriate for said injuries regardless of the medical history of the patient. My worst injury does not have a diagnosis code (permanent compound fracture of left SI joint) because it is extremely rare to have a permanent fracture, so it won't be considered when this government panel decides what the appropriate pain management is for me. If my doctor prescribes something different from what they government tells him to give me, he will go to jail and pay very high fines.

Medical decisions should be made by DOCTORS, not government officials and not law enforcement officials.

Weekend Away!

2011-12-20T15:24:00.000-06:00

A friend of mine, whom I have known for just under 15 years, has a time-share condominium in Florida. It is in the next city over from mine. He invites my DH and I to come spend the weekend with him. Some years he couldn't make it but sent a letter to the company allowing DH and I to use the condo in his absence. It is a beach front condo and the sound of the ocean is just so soothing!

It may not be very far from my home, but just getting out of my own house for a short while is nice. He was in town this past weekend (16 Dec thru 19 Dec). Ron and I were able to go for the weekend this year. We arrived Friday afternoon and came home Sunday afternoon. It was just wonderful!

The condo has a whirlpool tub in it and I got to soak in it many times. It is amazing how much help those tubs are! The moving water gently massages my muscles, which helps them relax better than a heating pad does. It really helped a lot.

The only drawback was they no longer allow smoking on the balconies. Instead they created designated smoking areas on the ground floor, outside of the buildings at maximum distance from the elevator. So every time Ron or I wanted a cigarette we had to walk to the smoking area. When it got cold we went and sat in our car to smoke. This was more exercise than I was used to and as a result I ended up in a great deal of pain. Oh but it was worth it! It was positively wonderful to spend the weekend with Jay (our friend).

We talked and laughed a lot. Just enjoying each others' company. Instead of going out to a restaurant for dinner, Ron cooked a steak dinner in the condo. It was positively delicious! On Sunday morning we stood on the balcony and just watched the ocean (Gulf Of Mexico). It was so smooth, no waves at all. It is not often that this happens, usually there are waves in the Gulf. So I took a picture with my cell phone, as I forgot the camera at home. Perfectly still, gorgeous shades of blue, and we could even see fish swimming by! The fish don't show in the picture, but you can see how still the water is.

Since we got home I've been in bed with a lot of pain, but despite the pain I am trying to keep up the exercise. This weekend showed me just how bad my muscles are and I know this is not a good thing. I need to build my muscles back up. With stronger muscles, my spine and pelvis will get more support and in theory this should lower some of my pain. However, doing the exercises hurts like hell and I am afraid of that pain, which is why I haven't exercised much beyond some gentle stretching. I don't think I have much choice now, so I've started walking to the end of my street and back home. So far I haven't made it past 3 houses down before having to go back home. I also have to sit down 2 or 3 times on this walk, but that's ok. When I can do this easily, I will lengthen the walk.

Having that short break has done a lot for my mood and I had a great time! I got the 3rd Reindeer done and started the 4th (stitching), but mostly I just relaxed and got to laugh a lot.

Thank you so much Jay for sharing the weekend with us, it was wonderful!

I did it

2011-11-29T07:05:00.000-06:00

I made it through Thanksgiving and I managed to cook almost the entire meal! Better yet, I did not hit a pain crisis to do it either!

We have a bar stool in the kitchen. It is for me to use when cooking or doing dishes, so I can do it sitting down. I haven't used it as much as I should have as I am more comfortable cooking standing up, the way I was taught. Well this year I realized if I wanted to cook the meal, I would have to use it. So I did. My sister-in-law Stephanie and my next door neighbor Diane both helped me with the preparation of everything such as cutting up celery for the stuffing, to basting the turkey, etc.

I had promised my husband that I would stop if my pain hit a 7 or 8, and let someone else finish the cooking. Well by the time it got that high, the turkey was done and everything else was in the oven needing 30 to 45 minutes and then it was time to eat. So I left that last bit for someone else to do and went to sit in bed.

I managed to spend the day mostly out of bed also and visiting with my friends who had come over to share a meal. This year I tried something new. We were all sitting around the living room (my dining room table won't fit that many people plus all the food so we ate around the coffee table in the living room) and each of us stated a few things we are thankful for. I know it might sound a bit corny, but I really wanted to add something special to the day because it felt special to me. I was pleasantly surprised when everyone agreed to it and participated without getting giggly, embarrassed, or anything.

It was a wonderful day!

My back has been more sensitive since then and I have returned to being unable to stand for more than 3 minutes, but I think I will be able to cook dinner more often if I use the bar stool.

Little Things Really Matter & Finally feeling a bit better

2011-11-21T16:49:00.001-06:00

Well the pneumonia finally cleared up. It took quite some time and 3 antibiotics. Of course, I was able to tell that I was feeling better, at first, because I started to feel my back pain more clearly. Now I am back to my usual pain levels and the rest of my body feels normal. I still have a bit of a runny nose and sinus congestion, but that's it.

I've met a new blogger. She found my blog and commented on a couple posts. She started her own blog in the hopes that it would help her to have a place to vent her thoughts and emotions. She also struggles with chronic pain due to a back injury which has caused depression as well. Her name is Leanne. You can find her blog here: http://depressionandpainsucks.blogspot.com Please visit her and welcome her to the blogosphere as she can use the support of others.

I am looking forward to Thanksgiving on Thursday. I don't know if I will be able to cook the meal and that is really upsetting me. Cooking Thanksgiving dinner has become something I hold on to dearly and look forward to all year. It has become very important to me, kind of as a way to balance out the things I can't do by providing a good meal. On the couple of occasions when I haven't been able to cook the entire meal, I spiraled into depression. This year I am very worried that I won't be able to cook it at all because I am pretty much stuck off my feet almost all the time now. I will do my best, push myself (like I do every year) and probably end up in a pain crisis for a couple days. I will do as much of it as I can sitting down and have others help me with preparation for the cooking (as I always do), but I am really hoping to get through this. I don't know, it seems to have become a major deal for me. Like "See I am ok, I can still cook Thanksgiving dinner!". One meal, even though it is a large one, shouldn't be an indicator of how good or bad a person is, but this meal has become exactly that for me.

I guess it is a good example of how a chronic pain patient has to find other ways of defining themselves and other things to hold up within their own minds as proof that they are still "good". Depending on what we are physically able to do, those important things can vary widely from participating in a hobby, to cooking a special meal, to just doing some laundry to any other action a person can take. These things become the ruler we use to measure our worth and value as a person. As a result, if further injury or advancement of an illness, takes those things away from us the effect is devastating. It hits us directly in the self-esteem. It hurts and is scary. It reminds us that we are not healthy or "normal". It brings worry about the future. It bring depression.

To a healthy person having something that seems so small, no big deal, be so deeply important to a person doesn't make much sense. They often dismiss our fears, concerns, etc. because they don't understand how such a normal activity is not just a normal activity to us. I've heard "it doesn't matter who cooks the turkey. It isn't the food, its the togetherness and gratitude that matter". This is true for most people, but for me it does matter because this is something special I can still do for my family. This is a way I can show how much they mean to me, how important they are to me, that I can still do it so I am not completely useless. To be unable to do it anymore is terrifying and emotionally devastating.

Please, let me cook this year ok universe? please?

Pneumonia...a good thing?

2011-11-13T12:02:00.000-06:00

I signed up for some stitching related things, so of course I got sick. Seems to be how my luck runs. LOL

3 weeks ago I was diagnosed with pneumonia so I've been pretty sick. Lots of coughing, wheezing, and congestion. But I have noticed something about being sick, when I am sick I don't feel the pain in my back as much (this is a good thing). I think it's because I feel so horrible all over that it just kind of blends in or is overshadowed if I feel extremely horrible. So I guess being sick does have it's good side!

Though body aches on someone who suffers from chronic pain seems monstrously unfair. It's like "Ohhhh give her body aches, she doesn't have enough pain!". LOL I try to find amusement in things, it keeps me from going too crazy.

I'm not feeling as depressed as I was, which is nice. I'm hoping this improvement isn't just because I'm sick. I don't think it is because I am finally starting to feel better and the overwhelming sadness isn't returning.

Other than being sick, nothing else is going on. I am feeling a bit better today so I am going to try and stitch a Christmas Ornament for the challenge I joined. I was hoping to have at least 2 ornaments stitched by now, but no such luck. I'm going to try a simple design because my concentration isn't as good as it normally is and I'm afraid if I try something more difficult I'll just end up having to rip it all out.

Just wanted to let everyone know that I'm still around. I hope everyone is doing well!

Questions ...questions..questions

2011-10-23T21:41:00.002-05:00

Chronic pain is bad enough on its own. Having pain all day long, every minute, no matter what just plain sucks. But no matter how bad the pain is, one's mind can always makes it worse. The never-ending questions, the constant comparisons of my abilities vs. someone else's abilities, the constant comparison of what I could do a few months ago vs. what I can do now. There is nothing that can't be made worse by one's mind's ability to point out every negative it can find, and it can find a lot of them.

My mobility is severely curtailed yet again. My new normal is pretty much spend all day sitting in my bed staring at stupid stuff on the internet. Cooking is no longer something I can do, neither is cleaning or laundry for that matter. I sit here trying to find amusing things to distract myself with and failing.

My brain constantly points out the things I could do just 3 months ago, that I can't do anymore. When it points those things out it includes the thought that I am "broken" or a "failure" or that my DH deserves better than me. It is amazing how debilitating these thoughts are. It doesn't take long before these thoughts bring me to a place where I don't even want to try anymore. Instead I just want to hang out and let each day run into the other until I don't even know what month it is, forget what day it is. I know that means I am depressed but my meds don't help.

I spend every day in my bed, reading stupid crap online and just coast through each day. I can't find the energy to even attempt to make things better for myself and those around me. The idea of even trying terrifies me because I know how I behave and react to things and I know that eventually I will get angry and then I end up saying something that can end up in a fight that causes yet another fracture like the one I got on X-mas Eve 2010 when I was deliberately shoved so I fell and caused another fracture to my SI joint as a result of defending someone from what I considered to be over-reacting abusive behavior. The idea of repeating that has scared me so bad that I hide in my bedroom, with the door locked, all day every day rather than risk a repeat of X-mas Eve 2010. Having my clothing ripped from my body while being deliberately knocked off my feet so my pelvis lands against heavy wooden furniture causing a new break terrifies me.

Am i depressed?? Yes

Am I scared? Yes

Do I hurt? Hell yes. I now live with a pain level between a 6 and an 8 every day, and tht is before I move around or even just get out of bed to go to the bathroom.

Do I feel worthless? yes

Do I feel broken? Yes

Do I feel guilty? Oh Hell yes

Do I wish I were dead? Sometimes

Am I terrified of dying? Yes because what if there is nothing after this life, nothing at all. Just *poof* ..gone. terrifying

I have little to not desire to do anything that has ever brought me pleasure; reading, stitching, etc. nothing. I just want to curl up hide and die somewhere.

I don't want to try anymore. I'm exhausted, broken, and so damn sad.

I feel like I am at the very end of my rope; grasping the tiny threads that are left at the cut end. I no longer know why I am holding on. I no longer know why I try to hold on. My future seems blank and empty.

The only good thing in my life are my children and my husband and I am terrified that with each passing day I am losing the brightness they offer me to hang on to; becoming paler and easier to just give up. The idea that their lives would be happier without me in them is now a very strong idea and that scares me even more. Yet, if I were to quit and die, they would a lot more than they currently hurt as a result of my condition. It is that thought alone that keeps me going. I don't want to hurt the people I love the most.

Sam, Kyle and Ron; No matter what, I love you very very much. You really are the world to me. You three are the only things left in my life (at least it feels that way right now) that bring me any pleasure or happiness at all. Please, do not hate me for my weakness and failings in fighting this pain every single day. Please know that you are NOT the reason or cause for my depression and negative emotions. You three are the only bits of happiness left for me. I would do anything, give anything, to be able to be everything you want me to be; to make you happy for more than 5 minutes at a time.

I am struggling.

I am not doing well right now.

I do not know if I will get better...

but I do still hope that I will.

Hope supposedly never dies...

but right now...
I wish it would.

I am tired.
I am tiny, scared, alone and
hurting.

Emotional and physical pain
combine
creating hell on earth
hell within my own heart and mind

emptiness
bleak
black
no real hope
just resignation that hell is all I get
wishing for release
even if release means death
anything..
to make it end.

I am so tired
exhausted.

Why many chronic pain patients will not go to an ER/ED

2011-09-02T03:32:00.002-05:00

I have had some nasty experiences in the emergency rooms/departments throughout my life. It has gotten worse since my physical condition deteriorated to the point where I needed pain medication daily to attempt to control my pain. I’ve written about this before and I have seen other medical patients who write about their experiences in the ER/ED on their blogs. Sadly many of them are far from positive experiences and tend to be the reasons why most chronic pain patients will NOT go to an emergency room unless we think we are dying (meaning: symptoms of a heart attack, severely injured etc.) And most of us would certainly not go during a pain crisis even if our blood pressure is sky high, or we pass out from our pain. Why? Because of the attitude of many people who work in the ER/ED. I was hoping that my idea that some ER/ED nurses punish their patients (and it is not just them) if the patient pisses them off was just an erroneous thought. Sadly I was wrong.

I’ve been reading blogs written by medical employees (in this case I won’t say professionals because I do not see how this behavior is professional at all) over the last week or so. It started out by someone linking to a funny blog post and I read some funny replies in the comments and followed the links. I eventually ended up on a couple different blogs. Many of their posts were funny, some were utterly heart breaking, others were heartwarming and I chose to read a couple from their first posts. But some of these entries were infuriating to me, and made me feel not just sad, but scared as hell for my possible future treatment as I get older and the Obama-care goes into effect.

For example, in one blog post is the following statement: “I head to the cabinet that holds the STAT 16 Fr Punitive Foley Catheter, and Nurse Tinkerbell heads for the cabinet that holds the STAT 16g Punitive IV Catheter. It's called a "16 Squared" and it’s the first line treatment for ODs and fake seizures.” For those who do not know a Foley Catheter is placed in the urethra to get a urine sample or for other purposes such as surgeries and guage refers to the width of the needle or instrument, the smaller the number the larger the needle/tubing/etc. In the comment section the blogger is asked “Why do OD’s get a punitive 16g IV?” To which the blogger responds “ODs get the punitive 16g because if they're a real OD, they might need it, and if they're just looking for attention, it makes me feel better. I hate ODs. Use a gun, already.” Basically, one of the reasons a 16g needle is used is to punish them so the nurse who is angry at them for their actions “feels better” about having to deal with them. Another RN commented the following “Although an Ewald is perferred, where's the 16 fr. NG? 16 CUBED, my dear!” (An NG tube is a nasogastric tube, means through the nose, down the esophagus into the stomach) Another commenter Megan (who does not have a profile I can link) “They should teach it at our yearly mandatories- "Fake ER patients, and how best to make them wish they never came in"…”

Now I understand that this was not the focus of this post, the disgusting condition of the patient’s genitals and what was in her panties was the focus of the post. However, this disturbed me as I’ve been on the receiving end of one those those “16 squared’s” before. I had received a spinal tap and developed a spinal headache as a result. These headaches are HORRIBLE. After hours of vomiting, dizziness, blurred vision, and extreme pain I went to the ER on my doctor’s orders. This was back in 1992 or 1993, when I was not on daily pain medication. From the moment I was placed on a gurney in a room, I was yelled at and ridiculed by the nurse who called me a “big baby”, “Whiner”, and “bitch” and proceeded to give me a 16g IV and catheter then yell at me for crying (and I didn’t bawl or scream, just bit my lips, held my breath and had tears rolling down my cheeks) while she stuck me over and over again in both hands attempting to get this IV. The resulting bruises lasted over 2 weeks and looked like gloves on both hands. She did not use any skin numbing medication before jamming me with the needle over and over. I never understood why this nurse treated me that way as I did not sass her, argue with her or anything else. I was not non-compliant, combative, or argumentative. Now I know and it makes me sick. Apparently since my complaint was “severe headache”, I was seen as a “Migraineur” (one who pretends to have a headache to score pain killers) despite the fact that the headache was caused by a known side effect of a medical procedure; a spinal headache from the spinal tap given during a myelogram earlier that same day.

I tried to dismiss this as a one-time only thing and continued reading the blog because some of the posts were quite funny. But this same topic of punishing a patient kept cropping up. This entire post, entitled “Punitive Procedures” turned my stomach. The commenting replies were just as bad or even worse such as this one from ERMurse: “18 Foley – Dry Insert”. Or this one by Ambulance Driver “Do both. In the same place. 18 Fr in the urethra, 14 gauge in the corpus cavernosum. It's an easily accessed vascular space, it's non-positional and you only need one Betadine

One post was about a patient who died in the ER/ED waiting room because she was basically dismissed as a drug addict. The comments on that one ranged from some outrage to other medical employees saying it was no big deal, its her own fault, etc. The link given to the news story no longer works but I read it along with the link that showed the woman’s autopsy report. The autopsy report showed the woman had only two drugs in her system, her drug of choice crystal meth and Vicodin (hydrocodone) which was at therapeutic levels (page 13 “ Forensic Laboratories” of autopsy pdf file). This means that she was not taking the Vicodin to get “high” or enhance her addiction as was assumed by the commenters. It means she was taking it as prescribed because she was actually in pain. She died in the ER/ED waiting room when her bowels ruptured due to obstruction which had been made worse by the Vicodin (which causes constipation that can result in obstruction etc.). She was dismissed as a drug abuser by the ER/ED staff and died as a result. The nonchalant uncaring response of the supposed “medical employees” made my stomach turn. I knew that ER/ED departments don’t like people who take pain medication regularly or drug addicts, but the idea that they would shrug off a death so obviously caused by incompetence and malpractice just makes me sick.

I read the blogs of some of the commenters as well, especially the ones who identified themselves as nurses or other health care workers. Again, many of the posts were wonderful, many were very sad, yet many made me angry to read. Many posts showed how hard these people work, how much stress they are under, and how they struggle with low staffing and other issues. However, I found a few common threads in these blogs:

Derogative terms used to describe patients that are meant to dismiss their complaints as not real, made up etc. such as “migraneurs, fibromyalgeurs, and chronic paineurs”
Within the first 5 to 15 words a patient speaks to a triage nurse in an ER/ED that they make up their minds whether or not you are a “real” patient or just a “drug-seeker”
The use of large bore IV’s, catheters, and nasogastric tubing as punitive against patients who piss them off is NOT isolated to a few people, but common among these ER/ED personnel who blog and comment on blogs and they think it is appropriate and funny
A very negative view of anyone who comes to the ER/ED complaining of pain of any sort, especially if that pain cannot easily be verified by a test
A very negative view of poor people and/or people without medical insurance
A very negative view, as well as substandard care, of people on Medicaid or medicare who are often viewed as nothing more than lazy jerks sucking at the tit of hardworking martyrs such as medical employees
A complete dismissal of certain medical diagnoses as “fake” and thus making people diagnosed with such diseases “fair game” for “punitive procedures” and ridicule

To be fair, I do understand how many drug addicts go to ER/ED’s seeking drugs. I do understand, and agree wholeheartedly, that this is aggravating, annoying, takes precious time and resources from truly sick people, and infuriating. I realize and understand how upsetting and infuriating it is to see so many people taking advantage of the systems set up to aide people (food stamps, Medicaid etc.), such as people who show up in name brand fashions dripping gold jewelry and chatting on expensive smart phones who are on Medicaid. However I do not agree that such feelings give any doctor, nurse, or other healthcare worker the right to punish the patient by deliberately hurting them through the use of large bore IV lines, or unlubricated Foley catheters etc.

One of the major parts of the oaths undertaken by medical personnel is “do no harm”. This is why many doctors and nurses are very careful in their treatment of patients. However, people like these not only break this oath but shatter it as their first action is punish the patient for angering them, thus harming the patient.

I’ve been treated with the “16 squared” (spinal headache), and the ignoring of my symptoms (chest pain with abnormal EKG) solely because I am a chronic pain patient. The last time I went to the ER/ED it took me 30 minutes of arguing with the doctor and the nurses to get through to them that I was NOT there for pain medication. As soon as they see that I am on pain medication daily, it doesn’t matter WHY I came to the ER/ED as that gets completely dismissed. Instead I am immediately labeled an addict, drug-seeker and treated accordingly. This most often means I am ignored for hours on end, as I was with the abnormal EKG and chest pain when I truly was having an issue with my heart. I was just lucky it wasn't a heart attack.

I realize these are older posts but they clearly illustrate an issue that chronically ill patients (especially those whose illness includes chronic pain) have been talking about for years; that medical workers treat them poorly and many do it on purpose.

I am terrified of going to the ER/ED because these are the kinds of nurses and doctors that I've run into most often and I know how these attitudes can easily lead to my dying or being permanently injured because they refuse to act on someone they consider "beneath them", a chronic pain patient.

I am not alone.

This is why.

This is what my depression looks like

2011-08-24T15:35:00.000-05:00

trapped in my mind
looking out at my life
existing
not living

I've been suffering from a pretty severe bout of depression these last few months. I know it was set off by the increased pain, new symptoms, lack of mobility, and the improper care of my doctors. I recognized it a few weeks ago and despite knowing that I suffer from depression I still found myself trying to deny it. It still amazes me how denial can be my initial response to a bad depressive period. After all these years, you'd think I wouldn't waste my time and energy trying to deny my feelings. But nope, I still do. I am not sure if that results from a part of me that still wants to believe my depression is temporary, or if there is still a part of me that doesn't' believe I have clinical depression.

I was reading someone's blog. When I find a blog I really like, I will go back to the first post and read the entire thing. I don't usually read "mommy blogs" because my children are much older (only my youngest is still considered a kid at 15, my oldest is 23) so I don't relate to the constant running around with young children. However this blog also included discussing such things as the author's experience with depression and the past experiences in her life that probably caused it. When I found this blog last week I read the last few posts, then went ahead and started from the beginning. Her post entitled "This is difficult to write" really hit home with me. She kept repeating "This is what depression looks like", and I found myself nodding and agreeing with her. Our situations are different but some of our feelings are the same.

Reading that blog entry made me realize that I have been denying the truth for a couple months now. I am struggling once again with depression. My meds are obviously still helping because I have not reached the point of wanting to kill myself or harm myself, but the feeling sad all the time etc. is there. For me my depressive episodes look similar to hers in that I can't find much value in myself or my actions (specially when I am immobilized and stuck in bed, it's more like "What actions?").

There is a lot of blaming myself.

A lot of feeling guilty

A lot of worrying that others can't possibly want to stay with such a horrible person like me.

There is a loss of interest in anything that I normally find enjoyable such as writing or stitching.

There is a lot of feeling alone, even though I am not.

Being isolated, in part by my own withdrawal and in part by not being able to go anywhere or do anything (which is beyond my control).

There is self-doubt and self-loathing.

There is asking myself "why me?" and "What did I do to deserve this?".

There is minimal to no sex drive at all, and even worse no desire to cuddle, talk, or in any other way be intimate with my husband. (This is not his fault at all, it is all inside me and in part stems from the self-loathing, guilt, shame, and anxiety).

There is waiting every day for him to come home and say he wants a divorce. Irrational, I know this mentally, but emotionally the terror is there and no matter what I tell myself I can't make it go away. Even though he is happy to see my when he gets home from work, rather than feel relieved I feel and think "there's always tomorrow. I'm broken. He can't really want to stay with someone who is broken so, he'll do it tomorrow" and the worry starts over again.

There is no desire to go anywhere or do anything. The hopeless feeling that comes with knowing if I even try, a pain crisis is my reward, so why bother?

There is the non-stop pain that just makes everything seem so much worse. Makes me less tolerant of mistakes I have made and so damn tired. Fighting and dealing with the pain all day long leaves no energy for anything else. That lack of energy erases all desire to do anything, and that loss of desire and mobility increases all the negative emotions and self-destructive thoughts. It just goes round and round.

This is what my depression looks like.

It sucks.

I am considering asking for a referral to a psychiatrist, rather than continuing to get depression medication from a general practitioner or my pain doctor. Maybe a psychiatrist will know of a medication that will help more than the one I am on. Also, maybe a psychiatrist can help me find a therapist who deals with chronic pain patients and I can get some help.

I've dealt with depression caused by many things in my past (childhood trauma, divorce, abusive relationships and rape). I remember the tools I learned to help deal with those times, work through them and move on without depression or medication for depression. I've tried those tools with this situation and they don't work. I think it is because my mind knows that this is not a temporary thing. I know this is permanent and will get worse over time just as it has for the last 30 years. Knowing that there isn't an "end" to this situation seems to be sabotaging my ability to pull myself out of depression. Maybe there are other tools for dealing with depression caused by a permanent life change. I hadn't really looked into that before. But I think I have to.

I can't keep living like this.

I can't keep hurting the ones I love the most by making them watch me just scrape by and thus worry if I will eventually say "fuck it" and kill myself.

I want my life back.

I'm scared though. Every day is so hard and I already know that dealing with depression is hard also and I don't feel like I have the energy or the strength to deal with two hard things at the same time anymore. This makes me afraid to try because I might fail and if I fail my loved ones will pay the price.

This is what my depression looks like.

Thank you Melissa for having the courage to post what you did on your blog. You've made it possible for me to, once again, open my eyes to my own condition. You've made it possible for me to find a tiny piece of myself that wants to stop existing this way, so I will use that tiny piece and seek help. Who knows, maybe that piece will grow. So thank you very much!

WOW a post that doesn't sound like the end of the world

2011-08-17T13:56:00.000-05:00

Today is a pretty good day. I'm hurting but not too bad (around a 6 right now). I can actually move a little bit, which is nice, YAY!

I know that when I do write on here it tends to be depressing and very down. Sadly that is usually when I need the write the most, to vent. I probably should get in the habit of writing on days like today that are not too bad. Or at least write during the short periods of time that aren't too bad during any day. But when I feel decent, I am more focused on enjoying that feeling than on babbling into the ether. lol

I may need to have an adjustment made to my medication because the depression hasn't gotten a lot better. It was when I first started the medication but the energy etc. that I felt then is now gone. Maybe my dose is too low? I'm not sure. I will have to look the drug up to find out if my dose was meant to be a starter dose or what.

I just wanted to post that today is a pretty decent day so far and I am happy with it! Now to go start a load of laundry, whoo hoo! I get to do laundry! YAY (weird thing is, I am actually happy to go do something I normally dislike)

Finally some good news

2011-08-14T13:01:00.000-05:00

I had my monthly pain management appointment Thursday the 9th. My normal physician's assistant is no longer employed in that office so I had to see the other PA. I had already decided that I would try one last time to explain the situation, the new symptoms, and medication issue and give them that last chance to correct the error they made on my breakthrough meds 2 months ago. If he refused to return them to the appropriate dose then I would insist on seeing my actual doctor himself rather than one of his associates because I know he will fix the error. Luckily I didn't have to cause a scene because the PA agreed that the dose should have been returned to normal when the attempt to change me to a different medication failed. So....I got my regular dose back!! Woo Hoo!!

He also said that the new symptoms require a cat-scan but in the confusion of my meds he forgot to order it. I forgot too because I was shocked that he gave me back my correct dose. That's ok, I see my primary care doc soon and will ask him to order it. It's not like they'll be able to fix it or anything, I'm just curious to know what is going on.

I still can't fill it until the 30th. My medications ended up with different fill dates because of the failed attempt at a new drug. They had to switch it back mid-month, so now the breakthrough meds 30 day supply runs out two weeks after my maintenance medication. This means I have to be extra careful when I check the prescriptions before leaving the office, to ensure they do not write both meds for that date as it would leave me without maintenance meds for two weeks. This would be very very bad. So far I have had to correct them once. I think on my next visit I will ask them to just write for a two week supply and give me an appointment two weeks out as that would put my meds back on the same fill date. This would be easier for all of us and they'll be less likely to screw it up.

My DFIL is doing better. The doctor had to put in 3 stents during the procedure but when his pulse dropped into the 40's they stopped. So he has been rescheduled for at least 1 (possibly 2) more stents on the 15th. He handled the procedure very well! He did have to spend the night in the hospital but was home the next day. There were no complications! Thank you all for keeping him in your thoughts and prayers, the whole family really appreciates it!

He seemed more himself afterwards too. He had more color, more energy, and was behaving like his usual self. I am so relieved and so happy that he is ok! He has a great sense of humor. Like my DH, that humor is often sarcastic, which is cool because so is mine. He was teasing Marcia (one of my DSIL) and just before he started teasing he'd look at me and smile then get his serious face on and start making "logical" arguments for needing bacon, or biscuits and gravy. DSIL didn't see the smile so she would respond as if he were serious and then we'd all be laughing. We do tend to laugh a lot when we're together and I like that.

While there I pushed myself by sitting at the dining table for longer periods of time than I should have. Every time I had to go lay down for a bit I felt horrible. I felt like I was being rude on top of the guilt. On Friday night I was close to a pain crisis (I did hit a 10 [crisis] that afternoon) and had to use a walker to get to the bathroom or to bed as my legs felt very weak, shaky, and had sciatica symptoms real bad. As a result I did not attend the family reunion on Saturday the 6th because I knew, if I did go, that I would not be able to handle the 12-14 hour return trip that same night. I ended up crying for the first 30 minutes of the trip because I felt so guilty, sad, useless etc etc. DH was not upset with me for not being able to go, but I was.

Despite that I did enjoy seeing my in-laws again. I love them and am glad to be part of their family. :)

Back Row L-R: Ron (DH-light blue shirt), DBIL Jeff (black shirt)

Middle Row L to R: DSIL Marcia (glasses), DSIL Carolyn (Necklace)

Front Row - R: DMIL Sue (Yellow shirt) DFIL Ron Sr. (lighest blue shirt)

Pain, Depression and Guilt..My Triplets

2011-08-14T00:42:00.000-05:00

I live every day in varying intensities of pain. Some moments of a day are not too bad, others can have me curled up in a fetal position on my bed crying for mercy that doesn't come. Few people, if any, truly understand the toll this takes on me. Oh some say they understand, and some do. Those who have lived with pain for more than a few days, pain that interferes with their ability to function normally, pain that makes them want to find a hole to crawl into a hide (or die). There is a difference between a temporary pain that lasts a few days or a couple of weeks, to constant pain every single moment that you know will never get better, only worse as time wears on.

Some say that a positive attitude will make it easier. Others say it can't be that bad. Others say I'm making it up,that no one could live with constant non-stop pain every moment of their lives. They're all wrong. Can someone live with constant, non-stop pain? If breathing and having a beating heart is living, yes the human body can continue to function and thus live with such pain.

The mind, heart, and soul of a person however, takes a hell of a beating from that non-ending agony. It brings into the person's life the triplets; pain, depression, and guilt.

The pain is bad enough, but the depression it causes makes it even worse. The feelings of failure, not being good enough, missing out on so many things, sadness, loneliness, being misunderstood, erroneously judged/condemned, treated like a criminal and more. You draw into yourself, hide from others how you truly feel because no one wants to listen to how sad you feel all the time.

Guilt..my life partner. All the things I can't do no matter how badly I want to. All the times I am stuck in bed for trying to do something I knew I shouldn't have, but to not have tried (and paid the price, oh the price!) for trying would be worse sometimes so I try and hurt myself for a few seconds or moments of feeling almost normal. Inevitably I fail and guilt consumes me. Family reuinions I can't attend, trips I can't take, meals I can't cook and so much more.

I remember how I used to be and dream of those times now long past. I wish to be that person again, one who could take a simple daily task such as taking a shower standing up for granted, do it without thought or planning. Those days are long gone.

Depression, self-loathing, self-recrimination..."you could have gone if you really wanted to"

I really wanted to!

My body..couldn't.

I'm sorry.

Car Trip and Fear

2011-07-31T20:33:00.001-05:00

My FIL (Father-in-law), whom I love a great deal, has been having chest pain episodes. So far blood work shows no heart attacks, just the chest pain. During these episodes his blood pressure drops as does his pulse. DH and I are very worried. So we will be going up to Indiana to see him. We're leaving Wednesday evening and should be back on Sunday. It's about a 12 to 14 hour drive (depending on number of stops). With my doctors' new stance of "We're not going to do anything else for you, you're going to have to learn to live with it." I am terrified. This drive always kills me and the first 24 to 48 hours I am there, I am in bed most of the time. Usually I can then join in a bit. But now, I'm stuck in bed most of the time every day and I don't know what I'm going to do. We'll only be there 4 days. I would feel like crap if I had to spend most of those 4 days sitting in bed.

Even worse, our visit coincides with my DH's mom's side of the family's reunion. She passed away when DH was in his early 20's and he hasn't been to the reunion in many many years. (Military career) So we plan on attending that for a little while. It is set for Saturday and we're supposed to leave Sat. evening. So we'll go for an hour or two and then take naps and head home. I will be meeting most of his extended family members for the first time and I am so scared. They're all really wanting to see DH as well and I am so worried that if we have to leave earlier than we planned due to my back that people will be angry.

I could just scream at my doctors and the DEA for putting me in this position. For leaving me without adequate pain control. It was explained to me that adequate pain control is keeping one's pain at a 5 or lower. This is what my goal is. I'm not looking for pain free. I can function at a 5 or lower. But now, I wake at a 6-7 or higher and any activity raises that level with walking and standing being the worst. This leaves me unable to function. It sucks!

I am very afraid.

Withdrawal

2011-07-09T16:28:00.001-05:00

I know I have been withdrawn for a while and I have tried not to be, but it is hard when I hurt so much, can't stand up and can't walk around or do anything. When it is like that all I want to do is hide, lick my wounds (so to speak), and try to just get through each day's pain. I have been in bed for 3 months now. The radio frequency procedures for both sides of my lower back have been done, but I'm still having massive pain in both SI joints. An interesting new symptom has shown up and that is very sharp, very strong pain in the right SI joint. Usually I only have that level of pain in the left side (the broken joint) and the right side is a dull pain that only sharpens after a long period of time on my feet. Not anymore! Now, it is the sharp pain on the right that keeps me from standing for more than 3 minutes.

With the lowering of my pain medications by the lovely doctors, the wait for radio frequency, and now the discovery that they probably won't re-do the SI joint radio frequency, all I want to do is curl up and hide forever.

This sucks.

30 Years Of Chronic Pain

2011-05-06T01:26:00.004-05:00

In pain..hiding from the world
Alone...frightened..suffering
scared...exhausted

I have been having a real rough few weeks since the yard sale. I've been stuck in bed every day, with high levels of pain and unable to stand for more than 3 minutes. To explain what I mean, the other night I went into the kitchen to get a glass of water. My bedroom is 25 steps from my kitchen. When I pulled out the ice cube trays (the ice maker in the freezer is broken LOL) I noticed the top one had 3 cubes in it, so I decided to refill the trays. So I quickly emptied the four trays into the ice cube compartment in the freezer (total time maybe 1.5 minutes if that long, its easy to empty these trays??) I then refilled the trays (4 of them) with water at the kitchen sink, which is literally 4 feet away and directly across from the fridge. By the time I got the 2nd tray filled all the muscles in my lower back were all knotted up real tightly, my pain had risen from a 5 to an 8, sciatic symptoms started (shooting pains down my legs), and my legs started shaking. By the time the fourth was filled I was at a 9 and my legs were shaking real bad with the left going numb and I knew my legs were about to give out any second. I managed to put the trays in the freezer without falling and then I had to sit on the floor of the kitchen. It took me 5 minutes of sitting on the floor, laying on my back, before I could get up and limp back to my bed.

This devastated me, hurt me emotionally and mentally, and made me feel totally useless. Which caused me to start thinking back over my life. This looking back has focused on my experiences with back pain and it made me realize that I have lived with chronic pain issues for 30 years now. I started having intermittent back pain around 11 or 12 years of age and it was made much worse when I was raped and the guy threw me up against a radiator (a metal heater) which I hit with my lower back. After that, the pain became more frequent but still wasn't every day. When I started working at 14, it became even more frequent and by 18 it was daily. By that point the only thing that varied was the severity of the pain and whether or not I got sciatic symptoms (numbness, tingling, shooting pains down the legs). The weeks of my period were always the worst, as were days where I worked on my feet (which was a lot).

I honestly don't know how I've made it this far and I don't know how much longer I can do this. The pain gets worse every year and I've lost so much from it. I have very few friends in r/l. I almost never go anywhere. I spend significant amounts of time stuck in bed due to pain and being unable to walk. I'm just so tired of it and terrified of what my life will be like 2 years from now, or 5 or 10. The desire to just give up and disconnect from life completely (not suicide, but unplug my mind..catatonic) has been extremely tempting and strong these past couple weeks.

I've become something I fought against for so long...I've become a burden to others.

I hate it.

I want my life back, any life. I want to be able to clean my house (not heavy housework, just dust a shelf or do a load of laundry without a pain crisis as a result), cook dinner, watch tv in the living room, sit at my computer at my desk (instead of daughter's old laptop in bed), make love to my husband (without crying after or having to stop half way through because my pelvis snapped) hell or to just be able to cuddle with him for a while (just the touch of his body against mine sleeping hurts too much, so no cuddles which sucks), go grocery shopping or even just run to the Dollar General down the street to pick up milk when we run out. I want to be able to drive my car (My Mustang) even just around the block. And a million other things healthy people take for granted every day. I want to be able to take a deep breath and not have muscle spasms from it. I want to be able to sit up in a chair and not have my pelvis feel like it is full of broken glass.

Hell right now I'd love just being able to get into and then out of the bathroom by myself. Without my husband having to either carry me in and out (including putting me onto [and then picking me up off of] the toilet) or having to walk behind me holding my waist or under my arms to make sure I stay upright.

Today I took a shower (with hubby's help and my shower buddy [shower chair], of course) and when I was clean and dry I went to get dressed and he had to hold my underwear and shorts for me to step into and pull them up most of the way for me while I held onto his shoulders because bending over (even from a seated position) just was not an option (and with kids in the house neither was sitting around naked). I almost burst into tears from humiliation, embarrassment, and just feeling like such a burden to him. Feeling broken and hopeless.

I want to be able to fill 4 ice cube trays without having to lay on my kitchen floor afterwards.

There are so many similarities between chronic pain patients and patients who suffer from chronic illnesses (Dysautonomia, POTS, Lyme Disease, etc.) yet even amongst other chronic illness sufferers, chronic pain patients can be excluded, judged, or dismissed as drug addicts. I've had chronic illness sufferers tell me that they do not want to associate with a chronic pain patient because they are afraid that their doctors will think they are drug seeking. Or the other person will think we are an addict, or judge us for using pain medication. This really bothers me so much more than having a healthy person dismiss me in this manner because I stupidly think that people who suffer from a chronic illness should have a better understanding of and more compassion for other people who suffer every day from some medical condition or injury that causes permanent pain. I've had people who are chronically ill tell me to just "suck it up", "it can't be that bad", "you just want to get high", "you're not positive enough", "but you don't look like you're in pain" and the ever popular "you're just an addict". It is disheartening to know that there is so much ignorance out there and it is only made worse by the misinformation being disseminated by the government and media.

I've mentioned before about the statement that was in my son's 6th grade science text book for school and what one of my daughter's science teachers told her class in high school ("No such thing as chronic pain", "no existing medical conditions that require daily use of pain killers" and " anyone who takes pain medication daily is a drug addict") and that is just one source of misinformation. News stories (on television, radio, and in newspapers) that say things like pain clinics are nothing but free drug clinics for addicts and similar things make things so much harder for chronic pain patients. It utterly amazes me as well as disheartens me when those judgments are stated by someone who is chronically ill.

But the worst ones of all are those who suffer from a condition that causes pain and choose not to use pain killers to help them deal with their pain yet they can still function fairly well. As a result they believe that this *is* true for everyone, and it just isn't true for everyone. They can often be quite rabid about their opinions, similar to how some people get when they quit smoking. Once they've quit they jump all over someone who smokes, and dismiss the smokers statements of how hard quitting is for them by saying things like "If I quit, then you can too. It's not that hard!". They will often lecture the person who is still smoking. In a similar manner, some people who can manage their pain without drugs will say things like "I don't take pain medication for my bad back so you shouldn't need any either". I naively think that someone who lives with a condition that causes frequent, constant, or chronic pain should have developed more understanding of living with chronic pain, and have more compassion for other chronic pain sufferers. They should know that not everyone has the same pain tolerance, and not everyone has the same pain responses to the same injury. For example, some people have little to no pain with a herniated disc in their back, whereas other people can have intermittent pain and still others have constant pain. Then the pain itself varies from shooting pain, to throbbing, to stabbing, and more. Some get sciatic symptoms, some do not. Some people will even have their disc return to normal over time, while others' discs will never be normal again.

Being judged, dismissed, or outright attacked (verbally) by another chronically ill or chronic pain patient is the worst. It is more mentally debilitating than receiving the same treatment from a healthy person. It is completely isolating and causes so much self-doubt and damage.

Even 12 years later, I still hear the words of my ex-husband when he told my why he was choosing his girlfriend over me and ending our marriage.."she's not broken like you are". I don't think a day will ever come where those words never repeat in my mind again.

People assume that pain management means taking enough pain medication to get rid of all the pain and be pain free. That is NOT what pain management is. Pain management is using different methods (of which medication can be one of those methods) to help the patient lower the pain to a level they can live with and still function fairly well. The patient still has pain all the time, it is just lowered enough that they can still do things despite the pain. Not everything they want to do, but enough to at least function.

We use methods such as diet, exercise, acupuncture, massage, meditation, chiropractic care, procedures such as steroid injections or radio frequency ablation and more in addition to pain medications to try and achieve pain management. For many of us, we try many different things before taking pain medications or along side of medication. Also for most of us, when we do take pain medication, we take the lowest dose we possibly can that will lower our pain enough that we can still function despite the pain we still feel, enough to take the edge off the pain not to make it go completely away.

Think about the worst pain you have ever felt in your life. Think about how that pain affected you at the time you were suffering from it. All the things you couldn't do anymore while feeling that pain. All the things you now had to do just to function such as planning out every activity to make allowances for your pain (showering, cooking, seeing friends etc.), or figuring out a new way of doing something because you had no choice. Now think about feeling that same pain every minute of every single day for the rest of your life. Now think of how that pain will continue to get worse over time. Now add in times where the pain spikes up real high to a point that you can not function as a result. Wouldn't you want relief from that pain? Wouldn't you want something to help lower the pain enough that you could function better? Wouldn't you think you deserve relief from that pain, that you should not have to suffer every single day?

I am not weak, addicted, a hypochondriac, or crazy. I am a woman who has permanent injuries to two of the worst areas of the body to have permanent injuries in as far as pain goes, the lower back and pelvis. There are NO positions that I can sit or lay in that do not put pressure on the injured areas of my body, and that pressure increases my pain. Sitting, walking, kneeling, crouching, and laying down all put weight and pressure on the pelvis. Even being hung by the wrists or ankles will strain the pelvis by pulling on the muscles that support the pelvis. As if having multiple permanent fractures in my pelvis and a sacroiliac joint that is bone on bone are not bad enough, I also have injuries to my lower back and nerve damage. (ligaments and tendons are removed from the inside of a joint when a fusion is attempted, so if the fusion fails the natural cushioning is no longer there, leaving the raw bones to grind against each other whenever they move) There are absolutely no movements that my body can make that do not use the muscles of my lower back and/or my pelvis and movement increases pain. Even the simple act of breathing uses the muscles of my lower back, specially if I take a deep breath. Go ahead and try it. Put your hands lightly on your lower back and take a deep breath, you should feel your back muscles move as your lungs expand. You can even feel movement on your hips, and sacrum/sacroiliac joints which are on either side of your sacrum (triangular bone that ends in your tail bone [cocyx]). Now think about how that would feel if your lower back was in constant pain and movement makes that pain worse. Breathing causes movement of those muscles, thus increasing the pain. Breathing, soemthing we do thousands of times every single day; something that we must do just to live; causing pain.

I am not weak. I am not crazy.

But.......

I am tired.

I feel alone.

I am so fucking tired of hurting so much. I really really need my pain levels to go back down. Please Goddess, please I'm begging you. Please, please give me a break. I'm really at the end of my rope and I am trying so hard to hold on but I feel like I am starting to lose my grip.

Its just so hard.

Love
Helps With Everything

I know that this post is depressing, sad, and probably whiny. I know it sounds like I am in a complete full blown depression and that it looks/reads like I can't find a single good thing in my life. However, that is not true. Yes I am depressed, in a great deal of pain (currently at "do not touch me" mode, means pain level 9.9 and no touching my torso or legs because it will bring a crisis on). My daughter put Lidocane patches on my lower back and left SI joint. These do not help with the real deep down pain that the broken joint gives me, but when I'm in "don't touch me" mode, it does help a lot by numbing the skin a little bit. This decreases some of the pain and can sometimes prevent me from hitting a full blown pain crisis. I'm just so glad that she was awake at 3AM because I needed the help, though I am sad that she is awake at 3AM because I know she's awake due to her own back pain.

Anyway, I do know that I have good things in my life and the biggest and best good thing in my life is LOVE. I have the love and support of my family. My husband, daughter, son, sister-in-law, brother, and niece; all of whom live in the same house as me. My husband, Ron, is the best thing in my life. He is supportive, understanding, compassionate, so very helpful, and he doesn't judge me or dismiss how I am feeling. When it comes to the vow "in sickness and in health" of our wedding vows, he meant every word. In the past 10 years (June 21st will be 11 years living together, Dec. 4, 2011 will be our 11th wedding anniversary) he has always been there for me. He has helped me shower, dress, use the bathroom, cuddled me, massaged me, listened to me, held me when I cried, made me laugh, hugged me and every thing in between. He is often where I find the will and the strength to continue fighting my pain when I can't find any inside myself. I honestly did not believe that there were men out there who would not only be willing to live up to the "in sickness" part of wedding vows, but are capable of doing so without coming to resent or hate their ill partner. Ron has shown me, over the past 11 years, that I was wrong. That despite all the people who failed me, abandoned me, or replaced me due to my disabilities there are still people out there who truly know the meaning of the words "I love you" and "partner", "spouse", "best-friend". Without Ron I probably wouldn't be here today and I do not take him for granted. I am honored, grateful, and so very lucky to have him in my life. He makes everything better. I love you with every fiber of my being Ron and I look forward to every single day with you, no matter how much I hurt. Thank you for being who you are and thank you for choosing me to be your wife, lover, and best friend.

In addition to Ron, I have the greatest kids. Having grown up with a mother who suffers from constant pain, my kids tend to be compassionate of others. They are understanding of differences in people's physical abilities. They are helpful, kind, and supportive. I am so proud of my children and I love them so very much. I know how lucky I am to have such close relationships with my kids. My daughter, Sam, and I are the best of friends. We talk about everything! We help and support each other during pain crises, and (better yet) we do so during good days as well. Sam has already had to overcome so much in her life (she will be 23 on the 13th), yet instead of becoming distant, cold, and bitter, she healed and even thrived. I am so very proud of her! My son, Kyle, is 14 (will be 15 in June) so he has some of those teenager behaviors that arise from the normal pulling away in preparation to become an independent adult. However, we are still very close and there is not a great deal of rebellion, acting out, or arguments like can often occur during the tumultuous teenage years. I know this is a direct result of his being raised by me. He had to learn compassion, empathy, understanding and physical limitations at a very young age as it was my pregnancy with him that resulted in the permanent compound fracture of my pelvis (2 failed fusion attempts on left SI joint). I am so very proud of Kyle, he is an amazing young man.

So yes I do know that I have many good things in my life and I am blessed with wonderful people to love and who love me unconditionally.

I'm glad I chose to come back and edit this post to include this because I feel a little better mentally now. I guess I just needed the reminder that despite being in extreme pain and immobile right now, I still have the greatest gift any human being could ever ask for..and something every human being deserves...love and acceptance.

Thank you Ron, Sam, and Kyle for everything you do for me, for being in my life, and most of all for loving me through thick and thin. I love you all so very very much!

Sorry

2011-04-19T20:12:00.000-05:00

I've been real busy coordinating a yard sale to raise funds for my DS's best friend Matt, who was badly burned on March 13. For the last 6 weeks or so I have been putting up posters, putting out donation jars, and picking up donations of items for the yard sale. We held the yard sale this weekend and instead of just 1 day, we had to run it for two days because we ended up with so much stuff! We had to use a large u-haul truck and a storage unit for the items we were given. Then on Saturday, the day of the sale, people dropped more stuff off and basically doubled what we already had. By the end of the day Saturday, we realized we did not have enough space to pack what was left back into the truck. So DH spent the night in the parking lot and we ran the sale Sunday as well. We did manage to sell quite a bit of the stuff, but the total earned wasn't as high as I was hoping for. Matt's family was very grateful though. DH, DD, DSIL, and DS were all great helps and did a wonderful job! I am so very proud of them! I just wish I could have done more than I did and taken more of the actual "doing" on my shoulders like I wanted to.

My pain has been pretty high these last few weeks. Partly due to stress (I am sure) and partly due to the fact that it has been 7 months since the first Radio Frequency procedures (lower back ones) and its starting to wear off, which means the pain in my lower back is ramping up again.

I've been feeling very down lately, specially since it has become blatantly obvious to me that I can no longer do things that need to be done and just push through the pain to do them. This has greatly saddened me.

So basically I'm in a funk..hurting more, struggling with feeling useless, struggling with fears for my future, struggling with feeling like a failure etc. etc. So no stitching lately, hence no blogging.

I am sorry for my lack of updates, lack of stitching and lack of motivation.

This really sucks! I hate feeling this way but I don't know how to make it stop.

Killing Myself

2011-04-03T19:02:00.000-05:00

Ohman I am in so much pain right now and I don't see an end in sight.

I spent yesterday, a couple hours anyway, packing up the remainders after an estate sale. said remainders were donated to my yard sale. The yard sale is to benefit my son's best friend Matt who was badly burned (http://hopeformatt.blogspot.com) in the hopes of raising money to help with the medical bills which currently stand at $80,000 and this is just the beginning.

We had a bunch of stuff that was donated earlier sitting in our den. We had to sort it and repack it in boxes that would close. This took us 4 hours to do. Box of Christmas stuff, craft stuff, clothes, shoes, toys etc. We have loads of stuff for the yard sale, I just hope it all sells (or at least most of it).

Tomorrow I have to hopefully finish packing the estate sale house up. I don't know where I'm going to get the strength to do it. Today was supposed to be a rest day in preparation for tomorrow. With a broken pelvis, nerve damage, and a bad lower back I have to be careful and space out doing things like this. Instead DH wanted to sort the stuff in the den. I realize he didn't think it would be so much work, but I knew it would be. I don't blame him, nor am I upset with him because I knew it needed to be done. I also knew that doing this would hurt me quite a bit. But now I am worried that I won't be able to finish packing up that house tomorrow and after how nasty the lady was about it yesterday, I want to get it all done tomorrow and not have to come back again.

I'm stuck in bed and probably will be most of the week after finishing tomorrow, if I can.

Day Of Uselessness

2011-03-28T10:54:00.000-05:00

Today is going to be one of those days where I can't do anything. I woke up this morning and all the muscles in my back (from shoulders to entire buttocks and upper thighs) and pelvis (buttocks, hips, abdomen) feel like someone took a tiny tiny crochet hook and knotted all the muscles together so they don't move. For those who don't know what a crochet hook looks like, or how tiny they can get, here's a picture:

The one I marked is 0.75mm (the size of the hook at the tip). Itty bitty tiny little knots. Ohman. My muscle relaxers don't help much when the knots are like this either.

When my muscles are like this, and thankfully since I got my sleep number bed days like this are rare rather than common, moving in any way is difficult and doing things can be downright impossible. This causes my guilt to go way up, specially now that I am trying to raise money for my son's best friend's medical bills. I had planned to put out more fliers today and to try and get to Estate Treasures downtown and pick up the items she has for the yard sale (she says there are A LOT), but there is no way I can do that. I can barely make it to my bathroom without using the walker, so there is no way I can move boxes of items. I know I'm not the only one raising funds for the family, but I also know how badly they are hurting.

Sadly today is going to be a bed day when I can least afford one. Man I hate this.

Help Please

2011-03-17T18:49:00.001-05:00

I am asking for prayers, thoughts, well wishes, reiki (whatever it is you are comfortable doing) for my son Kyle's best friend Matt.

Please spread the word as well. Matt was severely burned. All the burns are either bad 2nd degree to 3rd degree burns with the worst being on his hands and face (3rd degree; entire right side of his face). His neck, chest, both arms and hands were also badly burned. He is looking at a year worth of doctor appointments, surgeries, procedures etc. to treat these burns.

I am doing fund raising in the hopes of helping the family through this time so they can focus on helping Matt rather than worrying about gas money, medical bills etc.

Please visit http://hopeformatt.blogspot.com for more information on how you can help Matt and his family!

Please post a link to his blog anywhere you want to so the word spreads!

If you want to send direct messages to Matt you can post a comment on the blog, email him at mattshope11@gmail.com or contact me and I can provide a snail mail address for cards or letters.

Thank you all for your well wishes! I have passed them all on to Matt and his family. Matt says thank you as do his parents.

Courage

2011-02-04T18:00:00.000-06:00

People talk about how living takes courage. I happen to agree because life can be quite messy sometimes. There are ups and downs in every life and it can take courage and determination to get through those down times. For many people it is the up times that provide the energy needed to push through and survive the down times. But what happens when the up times are few and far between? What happens when life throws at you something that doesn't go away and thus makes every single day a study in courage just to make it through the day? That is what happens when someone has a chronic illness and/or chronic pain.

People seem to think that chronic pain just means the sufferer has pain more often than not, but that they do have times of no pain at all. This is not how it is. A chronic pain patient is in pain every minute of every day. The only variation comes in the area of intensity. Some days the pain is less intense than on others, or it can change many times in a single day. But a chronic pain patient does not have days without pain, or if they do it is extremely rare. We have pain all the time, which is why it is called "chronic".

It takes a great deal of courage to get out of bed every day when you know that the physical act of getting out of bed will hurt. You then have to find courage to do whatever needs to be done during your day. Everyday tasks seem insurmountable and are both physically and emotionally draining. Doing the dishes can land you in bed for anywhere from a couple hours to the rest of the day. Laundry results in feeling as if you just ran a major marathon. Cooking dinner at the end of the day can often feel like it is just too much. It takes a great deal of courage to face these challenges every day and do what needs done knowing full well how much it will hurt to do them.

People insist on believing that someone who has chronic pain is somehow weaker than they are if they complain of pain. Some believe that we are making it up or trying to play it up for sympathy. The truth is completely different.

Do chronic pain patients lie about their pain levels? yes we do, but we don't play it up, we play it down. We are acutely aware of how our loved ones react to our pain and it hurts us to know they feel helpless, so we lie and tell them we are not hurting as badly as we really are. We are very aware of how other people feel about chronic pain and the use of pain medication thanks to the propaganda the government spills. As a result we are forced to lie to others, to hide the reality of our pain so we don't have to deal with others' ignorance more often than absolutely necessary.

Do chronic pain patients have a lower pain tolerance than other people? No. We tend to have a high tolerance to pain, we have no choice but to learn to tolerate pain because there is no other option.

We have to accept that our bodies have betrayed us, that life as we knew it is now gone, and that the rest of our lives will include pain all the time. These are major changes and affect every aspect of our lives. We have to find different ways of doing things that others take for granted. We have to think about what we want or need to do and figure out a way to get it done that will cause the least amount of increase in pain. We can't take anything for granted because everything is affected. It is mentally exhausting to be constantly having to find new ways of doing things, constantly weighing the consequences of even simple activities, and to know that this will not go away.

To make it worse, we then have to deal with other people's ignorance and biases about chronic illness, chronic pain, and medications. People who think they know the answers, people who believe we're lying, faking or somehow making it up. When we have to waste our mental and emotional energies dealing with insensitive people, it depletes our reserves for dealing with our daily lives and makes everything more difficult.

If we were weak, soft, or lazy we could not deal with our lives. We would give up. Instead we fight on, day in and day out, we keep going and doing the best we can. This takes a great deal of courage, fortitude and strength.

You want to see what a courageous person looks like? If you are a person with chronic pain or chronic illness, look in the mirror. The face you see is the face of a courageous person. For everyone else, look at someone who lives with a chronic illness or pain and you will see the face of courage. We are the people who have to chose, millions of times a day, to keep fighting, to keep going and not give in even when we want to. We are the fighters.

We fight just to survive each day.

Every day.

We fight!

Letters to Back and Pelvis & A Social Life?!?! Me?!?! WOW

2011-01-27T19:18:00.002-06:00

On Tuesday I put a letter written to my back and pelvis on my Facebook status. My daughter, smart alec that she is, responded and we went back and forth. She had me laughing for over 20 minutes with her posts. I thought I would share it here so others could laugh also.

I astericked the names for privacy reasons but Mi*** is me and S*** C**** is my daughter. I still have no idea what "I have a boat" has to do with anything *shrug*

Anyway, enjoy the laughs!

Mi H
Dear Back and Pelvis,
I realize that it is raining and neither of you like the rain much, but please (pretty please with sugar on top) don't let the pain go higher than a 5 so I can DM tonight. Thank you!

Love,
Missy

Tuesday at 11:19am · ·

- S****** C****
  Dear Mi****** H****l,
  
  I am sorry you are in a lot of pain and but I'm afraid I cannot just "stop" raining when any one mortal feels like. If you have a complaint, please feel free to take it up with the complaint department at 867-5309.
  
  Thank you for contacting us on this matter and we hope to hear from you with any other concerns!
  
  Yours truly,
  Back and Pelvis
  
  Tuesday at 11:23am ·
- Mi****** H******
  
  Dear Back and Pelvis,
  
  Yes I realize you can not make it stop raining and that is not what I was requesting. However, it is well within your abilities to stop hurting and that is what I was requesting.
  Thank you for taking the time to respond to my request and I would greatly appreciate it if you would seriously consider this new (clarified) request.
  
  Love
  Missy
  PS: I have the exercise CD and I'm not afraid to use it! Just saying!
  
  Tuesday at 11:26am ·
- S****** C****
  Dear Mi****** H****l,
  
  I understand your dilemma and I apologize for the inconvenience the pain has caused but please find the reasons below as to why your request has been denied:
  
  1) NYEAH NYEAH!!
  2) Life sucks, get over it
  3) I'm on a boat!
  4) Your luck has run out, sunny jim!
  
  Thank you again for contacting the department and we hope you will continue to be a beloved customer.
  
  Yours truly,
  Back and Pelvis
  P.S. Any more threats will be directed to the nearest mental health facility as what you are implying is a type of self-mutilation.
  
  Tuesday at 11:30am ·
- Mi****** H******
  
  Dear Back and Pelvis,
  
  I do not understand why you are full of such vitriol towards me as I have never done anything to you. Now here are some reasons why you should do as I request:
  
  1: I am in charge
  2: Calcium and Protein come from what I eat
  3: I have extra luck (luck +inifinty gem)
  4: I put a hole in your boat last month
  5: See #1
  
  Missy
  
  PS: The local mental health facilities will laugh in your face as exercise is considered healthy, not self abusive.
  
  Tuesday at 11:37am ·
- S****** C****
  Dear Mi****** H****l,
  
  I'll sick Matthew on you.
  
  Sincerely,
  Back and Pelvis
  
  Tuesday at 11:41am ·
- Mi****** H******
  
  Dear Back and Pelvis,
  
  And then he will find out what it is like to pick on someone who is meaner and nastier than he can dream of being. I am Sam's mother afterall.
  
  sincerely,
  missy
  
  Tuesday at 11:43am ·
- S****** C****
  Dear Mi****** H****l,
  
  Touche, miseur pussycat! (And I'm not French, kiss my ass, LITERALLY! MWuahahahahaha)
  
  Back and Pelvis
  Tuesday at 11:44am ·
- Mi****** H******
  Dear Back and Pelvis,
  
  If I start getting that particular area of anatomy kissed you both complain loudly, so don't ask for what you can't handle!
  
  Missy
  Tuesday at 11:47am ·
- S****** C****
  Dear Mi****** H****l,
  
  ,
  
  Oh yeah? Well...well...um...
  
  ...
  
  Yeah I got nothin
  
  Back and Pelvis
  
  Tuesday at 11:49am ·
- Mi****** H******
  
  Dear Back and Pelvis,
  
  I win. Now LOWER THE DANG PAIN already!!
  
  Missy
  PS: Thank you for the lively reparte, I enjoyed it!
  
  Tuesday at 11:50am ·
- S****** C****
  Dear Mi****** H****l,
  
  Yessah massah! :mumble grumble:
  
  Back and Pelvis
  P.S.: Glad my department could make you happy for once!
  
  Tuesday at 11:51am ·
- Mi****** H******
  
  Dear Back and Pelvis,
  
  Thank you! I am sure the players will appreciate your cooperation in this matter as much as I do!
  
  Sincerely,
  Missy
  
  Tuesday at 12:01pm ·

The game went well Tuesday night until the broken joint decided to snap real strongly which hurt like hell. So, in the hopes of similar laughter, I wrote a follow up message to "Back and Pelvis", this time my friend B chose to respond. His replies also made me laugh so that was good.

M* H**
Dear Back and Pelvis,

Thank you very much for controlling the pain enough for me to DM last night. I do appreciate it a great deal. However, I would have appreciated it more if Pelvis had not decided to snap the bones of my sacroiliac joint together very sharply. Could you please not do that in the future?

Thank you for your time.

Sincerely,
Missy

Wednesday at 10:18am · ·

- B***** C*****
  
  Dear M***** H******,
  
  BWAHAHAHAHAHAHAHAHAHAHAHAHAHA no. Pelvis was actually late snapping the bones at the joint, count your blessings.
  
  Don't cross us.
  
  Sincerely,
  Back and Pelvis
  
  Wednesday at 10:28am ·
- M***** H******
  
  Dear Back and Pelvis,
  
  So this was timed and deliberate sabotage of my social life? I see. Well then I think it is time to go see the orthopedic surgeon again to get that second plate and another 6 inch screw to stabilize Pelvis so he can't do that anymore.
  
  Sincerely,
  Missy
  
  Wednesday at 10:33am ·
- B***** C****
  
  Dear M***** H******,
  
  No, this was what you get for crossing us yesterday. As to the plate, no, you wouldn't... You're bluffing, right? You can hardly stand the quarterly procedure to make us shut up for months at a time, and is an injustice that you shouldn't be able to stand for, let alone after. Please stop bluffing, we *know* you wouldn't really do that... right?
  
  So yeah, blow it out your ass. (We'll happily bitch about that too.)
  
  Sincerely,
  Back and Pelvis
  
  Wednesday at 10:42am ·
- M***** H******
  
  Dear Punch and Judy (AKA Back and Pelvis)
  
  So this was payback for the exercise threat? I understand. No problem.
  ...
  ...
  ...
  
  No I am not kidding. I will more than happily see the surgeon and request the second plate and screw. I am calling the office for an appointment right after I post this letter.
  
  Missy
  
  Wednesday at 10:50am ·

Since I started playing D&D again I have rediscovered something I haven't really had in many years, a social life. It feels odd since I am used to not having much of a social life that requires me to go places or chat with people in real life.

Due to my disability I have a difficult time going places and being able to say for certain that I will be able to do something on a future date, so making friends hasn't exactly been easy for the past 10 years. Hence most of my social interaction has been through the computer. I have made many good friends through message boards, web sites, and blogs. I treasure those friendships a great deal.

Suddenly I have people texting me on my cell phone, which I only got in case my kids' needed to reach me while I was out running errands (this was before I further injured my back and lost the ability to walk long enough for grocery shopping or long errands), or if the schools needed to reach me. I don't usually carry my phone with me when I am at home, but I have been missing these messages when they come in and a couple were important at the time they were sent (but I didn't get them until the next day), so now I carry it with me around the house just in case.

I remember going out with friends to the movies or out to dinner. I remember hanging out at a friend's house or talking on the phone. I remember getting together with my friends either at my house or one of theirs to play D&D and have fun. But I had long ago adjusted to not having those things in my life anymore because I had moved to a different state and my back got much worse, severely curtailing my mobility. I am thoroughly enjoying playing D&D again, but even more, I am loving having a group of people to hang out with, laugh with, and just be friends with in real life.

So now I have a social life. I still find myself wondering "How did this happen?!?" and thinking "WOW I like this!" and hoping and praying that I get to keep it because I also remember how much it hurt to lose it the last time.

A social life..WOW

Please Goddess, let me keep it this time. Please?

A Very Sad Painful Day

2010-12-05T23:09:00.000-06:00

Today was a very stressful day so my pain is up. One of my favorite cats was killed today.

Curled up in the baby doll car seat that Bridgette has for her stuffed Minnie Mouse Doll


On lay-z-boy with Stephanie talking on phone

playing on the bed when I went to get clean sheets

The above pictures are of my baby Pharaoh. We have cats. 3 black and white tuxedo cats (Calliou [9yrs], Blackbeard [6yrs] and JJ [5yrs]) whom we call the "black cat mafia" (there used to be 4 of them, but Romeo [JJ's brother] went to live with my daughter Sam in Wisconsin this past August), and one Siamese cat named Pharoah (2 yrs). I think I have the ages correct. We had a second siamese cat (female named Shinya) but she recently went to live with her favorite person (my step-daughter Rachel) in September, leaving us with just the 4 cats.

This morning my brother Brian was woken up by a dog yelping and what he thought was another dog growling etc. He assumed it was two dogs fighting in our side yard. When he looked out the window he saw a large dog (breed was Akita, apparently a breed known for attacking cats) attacking Pharaoh. Before he could do anything, the dog killed my cat by breaking his neck. Brian woke Stephanie (his wife) and told her, she came and woke up Ron and I to tell us.

I immediately went outside, not caring where the dog was (by that time the police had him in a yard across the street and were keeping an eye on him waiting for animal control to come get him). I was hoping that my cat was okay, just stunned or something, maybe unconscious, but not dead. But no matter how intensely I wished it, he was gone. I've been crying off and on all day. Especially after I found what was on my front steps because the story this evidence told is very clear and it hurts to know that when my baby really needed one of us, needed our help, we weren't there..I wasn't there. I didn't save him when he wanted and needed it. That hurts. I know its not my fault, but emotions are not always logical.

Animal control wanted to take him. They wanted to put him in a bag and "dispose" of him. I was appalled at the idea! No way! I would take care of my baby not some stranger. I lovingly wrapped him up in a soft towel and held him for a while, telling him I was sorry that we weren't awake and didn't help him and that I love him. A couple hours later, with my husband's help, we buried him in the back yard next to the garage. It was so hard and I cried a lot. I've been crying off and on all day because every time I do something I expect Pharaoh to be there like he usually is and it hits me real hard when I look for him and he's not there and I remember this morning. I want my cat back.

Pharaoh was one of my favorite cats. He really loved me, cared about me and I really loved him too. We got him when a friend of my daughter's joined the navy. He owned two cats, Pharaoh, and an all black female (American short haired) named Isis. His brother took Isis, so I took Pharaoh. He was only about a year old when we got him. Such a pretty, soft, sweet, and lovable cat. When I was stuck in bed due to pain, he would insist on coming into my room and laying on the bed with me. If I was in too much pain for him to lay right up against me or on my lap, he would stretch out and lay next to me without touching me. Or he would curl up around the top of my head, just above my head, on my pillow. Other times he would lay along my chest, with his head resting on my arm. When I was sitting up reading, he would lay on my crossed legs/ankles (I tend to sit with my legs and ankles crossed, Indian style) and put his head on one of my thighs and just go to sleep. He would sit with me on my computer chair too, either curled up on my lap, behind me, or stretched out beside me. When he wanted to be near me but wasn't in the mood for cuddles or petting, he would lay on Ron's side of the bed and sleep.

He was very playful too. He loved to chase this little red laser light we had, it would make a red circle. We'd turn it on and move it around on the floor in circles and he would turn in circles chasing it. We'd move it along the floor and he'd pounce on it, he'd even try to climb the wall after it! He loved it and we would laugh, it was a lot of fun. I would play with him with a long piece of embroidery floss, or a balled up piece of paper, or just my hand under a blanket or towel.

When I would make a sandwich or a bowl of cereal, he would follow me to the kitchen. There he would hop up on to my bar stool (That I use when I'm preparing a meal so I can sit down while working) and watch me carefully. Then he would meow, asking me for some. I would give a piece or two of my sandwich meat. His favorite was roast beef and he did not like pastrami when it was heated up for a hot pastrami sandwich. When I was eating cereal, he would follow me sit and wait until I was done eating because he knew that I would give him a small amount of the milk at the bottom of the bowl (amounted to a tablespoon, the rest I drank). It was so funny! His eyes would never leave the spoon and he'd move his head following the spoon from the bowl to my mouth. A few times I teased him by moving the spoon in circles, or side to side but he kept his eyes glued to it and just followed every movement. It was so funny!

I'm not the only one he would cuddle with, slept with, played with, or begged food from. He would also cuddle with Stephanie (my sister-in-law) and Brian; sometimes even Kyle and he would let Bridgette pet him. With Stephanie, he would lay with her same as with me, along her chest with his head on her arm or shoulder and his body under the blanket. When she was sitting in the lay-z-boy recliner, he would get into her lap, or lay right beside her and cuddle up, just like in the picture above.

He really was one of our favorite cats and I am really going to miss him very much.

WARNING: FOLLOWING STORY/DESCRIPTION COULD BE VERY UPSETTING TO SOME

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When I started to go back into the house after speaking with the animal control officers (who took the dog) I noticed odd lines on the concrete of my front steps. I looked closer and what I found tore my heart apart. Apparently the dog dragged the cat off the steps. Pharaoh tried to hold on and left claw marks in the cement on the steps as well as the cement that is on top of the little brick wall that is around a flower bed in front of the house, right next to the steps. (the second step actually meets the edge of the wall as can be seen in the first picture). Also on the steps we found two of my baby's claws which were torn off while he tried so hard to hold onto the cement step. I also found paw prints, drag marks, and claw marks dug deeply into the dirt of the flower bed. All I could think of is that my cat came to the door for help and since no one was awake, we weren't there and the damn dog literally dragged him from the porch, over the step and through the flower bed then into the side yard, cornering him where the chain link fence makes a corner. This left my baby with no choice but to turn and try to fight. A fight that woke Brian, but that Pharaoh lost.

Animal control took the dog. It seems that this dog belong to a neighbor on the next street and is a breed that is known to strongly dislike cats and to kill them. This is not the first cat in the neighborhood that this dog has killed, but animal control can't do anything until the dog hurts or kills more than one cat or attacks/harms a human being. I am so angry that the owner was negligent and allowed an aggressive dog to get loose in a neighborhood full of small children and many cats.

I took the pictures of my stairs to show how the animal behaved in getting my cat, should it be needed as I plan to do my best to get this dog either relocated to a farm area, or put down as he is very aggressive. He was aggressive with the police officers and animal control officers as well.

But mostly..I WANT MY CAT BACK!

top of brick wall around flower bed, to left of second step

beginning of claw marks, set of 4 but 4th isn't very visible

left side longer mark a few inches from first set, am guessing front paws

right side claw marks, inches behind first set of 4, am guessing right front paw

The dog looked almost exactly like this

Made It Through Thanksgiving

2010-11-27T15:28:00.000-06:00

Woot! I made it through Thanksgiving!

I am quite pleased that I managed to cook the entire meal. Ron and Stephanie helped me with preparation and such, but I was able to be there for the whole thing. Including Bridgette's assistance in making Eggplant Parmesan for my step-son Nathan. He is a vegetarian and since he doesn't eat meat, he would have no main dish. So I made the eggplant so he would have a vegetarian main dish to eat along with the side dishes. Bridgette's help was real cute.

My camera's battery was dead, so I had to take pictures with Bridgette's Fisher Price camera. So they're not great pictures, but they clearly show her dipping the eggplant into egg then breadcrumbs, ready for baking. She enjoyed it. Her dad helped her while I took some pictures.

Thanksgiving 2010

It was a good day. I was in bed by the time the meal was done, so I didn't get to enjoy the company we had over, but I was still glad that I was able to cook the whole meal.

Today I am already back to normal, with low levels of pain. The radio frequency definitely worked!

Poetry

2010-11-18T18:03:00.002-06:00

I wrote a couple of poems back in 1997 about what it felt like then to be living with constant chronic pain. I thought back then they were a bit over the top, but after 10 more years of living like this, they aren't. They are very honest and very real and very accurate.

These two poems have not been edited. They are exactly they way they came out of my mind when I felt this overwhelming need to write them. Maybe someday I will edit them, though I do not want to as their errors show the confusion and difficulty with mental tasks that are also inherent with living in pain all the time. Anyway, here they are:

Aug 13, 1997
by Missy H. ©

Every day is the same

each day filled with pain

can't do what I want to
can't do what I need to

I am forced to sit

sit and watch

my life fade away
my children grow apart
it tears at my heart

I wonder why
why does it have to be this way
I try to stay upbeat
to smile through the tears

inside I am dying
my heart cries for release
my mind aches to live again

to be able to walk, to run
everything on hold
as I watch my life go by

sitting, stranded

wrapped within this cloud of pain..

LIVING WITH PAIN I
May 1997
by: Missy H. ©

People say God never gives you more than you can bear
I have to wonder, as I sit here
wrapped in pain, my body throbbing
all day and all night
no end in sight

My mind struggles to ignore
Fighting constantly
My body wracked with agony
My heart cries for release
Cursing my weakness, the tears hot on my cheeks
How much more must I take?
What sin have I comitted, to earn such a fate?
The pain never ending
The fear having to yield to my body's shortcomings
The guilt of not meeting my role
I have to wonder, is this too much for one soul?

Struggling To Be Normal

2010-11-18T17:53:00.001-06:00

Most people sleep at night, get up at a certain time each day then go about doing their daily activities, be it work, school, play etc. For me, my days and nights are all mixed up. Due to pain I have a difficult time sleeping at night. By the time I manage to do so, it is usually early morning (4 to 6 AM). I may sleep 4 to 6 hours, sometimes less. This goes on for a few days until my body reaches pure exhaustion from lack of sleep and I end up sleeping 12 to 16 hours which means I wake up somewhere around 4PM to 8PM. Now I'm wide awake and there is no way I will sleep at night. This cycle of sleep disturbances can be triggered very easily. One single night awake due to pain, can take me 2 to 3 weeks to get back to sleeping at night. Each additional day/night of inability to sleep or stay asleep only makes it take longer to get back to normal, hence the 2 to 3 weeks.

Right now, I am struggling with trying to get back to sleeping at night since my pain is in good control. I am not doing very well because my body is used to being awake at night (from the weeks spent in bed watching netflix) and only sleeping when exhaustion hits. This means that I have a difficult time sleeping.

I started meditating before bed. Using breathing and visualization to help my body relax and feel sleepy. It helped a bit, but not perfectly. I still didn't sleep until 3 or 4AM, and woke between 10 am and 1 pm. But that at least gave me some daylight hours. Then came the last two nights when I just couldn't sleep until 6AM. (Today was 8AM). Yesterday my alarm clock woke me at 11AM like I had asked it to, and I did not take a nap. I was very tired when I went to bed at 10:30pm. I really thought I would sleep all night. No such luck. I was still awake at 6AM, and then at 7 and 8. Somewhere around 9AM I finally fell asleep. My alarm was set for 12:30 in the hopes it would be just a nap, so I could sleep tonight. No luck, I apparently turned it off in my sleep (when it went off) and did not wake up until 4:30PM. ARRRGGGHHHH!!

This is so frustrating because now I am wide awake and I KNOW that there is no way I will sleep tonight. I've tried forcing myself to stay awake until the next night, but it doesn't work. I end up falling alseep where ever I happen to be sitting (my lay-z-boy, my computer chair etc). So I end up going to bed trying to take a short nap of 2 to 3 hours. Nope, when someone comes to wake me up I just can not wake up and then I'm out for 8 hours or more and wake up that night or late evening.

I just want to be normal. Like I was before the additional break to my SI joint, back in 2000 through 2003. I want to be awake during the day, sleep at night, and do things. But no such luck, not for me.

Now comes probably being awake tonight and struggling to stay awake all day Friday, so I can maybe sleep Friday night like a normal person. Here's hoping I can do it!

It has been a while..Radio Frequency Follow Up

2010-11-13T17:08:00.000-06:00

I realize it has been a month since my last update and I will explain why. The first radio frequency procedure, which I blogged about on the 13th of October was done after I had already spent 6 weeks in bed. Sadly the insurance companies are who decides who these procedures are doled out. I don't understand it because it seems, in my case at least, that their way of doing it is a waste of money and saves no one any time or money. I've had these procedures 5 times, and they have worked every time (this one included thankfully!). Yet the insurance company insists that I have to have the diagnostics done at two week intervals, followed by the radio frequency procedures (also at two week intervals). Before these can commence I have to return to a condition that requires these procedures. What this means is I have to return to being pretty much unable to function due to pain. Since I live in a part of the country where prescription abuse is pretty high, raising my pain medication during these times is not an option. This leaves me in extreme pain, all day long, for at least 2 months before they will even schedule the diagnostics. After the diagnostics I have to do a follow up with the doctor, who will then schedule the radio frequency. All told this means I was stuck in bed for almost 3 solid months, most of it spent in extreme pain without adequate pain control. All so I could go through hellaciously painful procedures, to control the pain. I get to repeat this process every 8 or 9 months or so because the insurance company demands I allow the radio frequency procedure to wear off completely, to see if my pain is as bad or worse than it was before.

The weeks spent in extreme pain are depressing, debilitating mentally and emotionally, and cause muscle loss due to inactivity, which can also increase the chances of a blood clot and other diseases. This is NOT good. Then comes the multiple appointments of painful procedures that increase the already high level of pain. These procedures cost in the thousands of dollars each time. There is no exception made for patients like me. Meaning patients who have a history of successful radio frequency ablation in their pasts, no new injuries and the same pain caused by the same conditions to just skip the diagnostic steps and save the insurance company 5 thousand dollars per test. (this is the amount listed on my EOB, explanation of benefits) for each diagnostic procedure. The radio frequency itself comes in at around 15 thousand. By demanding these diagnostics every time the insurance company is billed for 40 thousand dollars at the end of each cycle, when they only NEED to be billed for 30 thousand. (Trust me, they don't pay even half of the billed amount!)

Anyway, what happens when I am forced into such extreme levels of pain, and pain increasing procedures is I withdraw. All my mental and emotional energies are focused on making it through each day, and on many days making it through the next hour or even the next 5 minutes. I have no extra energy for anything else. Of course this triggers a depressive episode, which does NOT help the situation at all. End result, I get real quiet. This is why I was not posting here or on my stitching blog. I did manage to keep up with some emails, read a few blog posts from others, but not much more than that. I did do some stitching, but mostly I watched Law and Order on Netflix with my son's laptop and just withdrew from everything.

This time, after the radio frequency was done the Dr. decided to do toradol injections in the SI joints. I wasn't expecting it to help much. I was hoping to do radio frequency on both joints, but he preferred these injections. They use toradol on me as I can no longer do the steroid injections. Surprisingly this has brought decent results. So far they have only done the left side, but it has made it possible for me to get back to cooking dinner, doing some housework and laundry. My pain is A LOT lower than it was and I am out of bed.

However, coming out of that shell that I retreat into is more difficult. It becomes a matter of forcing myself to do things, whether I want to or not. Eventually the excitement and happiness of being able to do those things without paying for it with extreme pain, makes me realize that I am, once again, back to myself. Oh not the self I was years ago, but the self I was a few months ago. That realization and those wonderful feelings make it possible for me to continue to do things without as much mental effort of forcing myself.

But I have noticed that this gets harder every time I have to go through it. I am tired of having to return to a place of severe suffering every single day, just to satisfy some stupid insurance "rule" that really doesn't make sense in my case. I'm tired of having to live with extreme levels of pain, all day long, because I live in an area where prescription drug abuse is higher than in other areas. I have proven, over years and years, that I do NOT abuse my medication. That I am no addicted to it. Yet no exception can be made in order to try and control my pain better during those months that the insurance company demands I suffer through before they will allow the cycle of procedures to start up. I have a lot of anger over this and it is difficult to let this anger go because I am not the only one who suffers. My entire family suffers right along with me. They don't get the attention they usually do. And let me tell you a 3 year old child does NOT understand that pain is what is preventing her aunt from playing with her the way she usually does. To a 3 year old, I'm just ignoring her. My husband doesn't get the cuddling, discussions, support, etc. that he would normally get because I just don't have any extra energy to give to him. Same for my son, who also suffers in his school work because I can't sit at the table and teach him. Instead he is stuck pretty much learning on his own. My sister-in-law is stuck doing all the cooking, laundry and housework that is generated in a household of 6 people and 4 cats.

I resent that my family members have to go through this. I struggle with guilt, shame, fear, and anger..all of which combine into depression. Thoughts that if I weren't so "broken" I could be a better Mom, Wife, Aunt and Teacher. I struggle with fears that they will get tired of this and leave me. It gets harder every time I have to go through this to recover from the emotional and mental aspects, as well as the physical.

But I am still around and I am still fighting. Right now I am focusing on getting back to where I was 5 months ago. Here's hoping I can do it.

Radio Frequency Procedure

2010-10-13T11:00:00.002-05:00

Warning: Graphic Image and Specific Language about a medical procedure. If you are upset or bothered by reading about or seeing a picture of said medical procedures being done! then please do not view this post.

For those who may not understand what radio frequency procedures are, I asked for a picture from the flouroscopy (almost like an x-ray) view so that I could scan it in and explain about how it is done and why it sends me to bed for a couple days after it is done, as well as why it helps so much making me willing to keep repeating such a hellaciously painful procedure. As well as to discuss it and other topics with my son.

I will be referring to this picture:

You may need to click the picture to view it full size and read the labels.

You can easily see the main part of the 6 inch screw that lays horizontally through my left sacroiliac joint. It starts near the hip (I can actually feel the screw head under my skin if I press the right area) and goes through the entire illeum, across the broken joint and ends about halfway through my sacrum. This screw was supposed to hold both sides of the SI joint together while it fused to solid bone. It did not fuse so the screw now acts to stabilizing my sacrum so it can't move as far as it is capable of. The area underneath the ridges of this screw is my sacrum itself.

In the lower left area of the picture it gets pretty dark. This is because the surgical steel plate and screws cast a shadow on flouroscopy (they do the same on x-ray and cat-scan). The plate can be seen though, along with the screws that go back to front holding the plate in place.

For background knowledge, the plate and all the screws are loose. (so not only am I permanently screwed, all my screws are loose too! ROFLMAO) There are visible spaces around the threads and length of all the screws on cat-scan review. It is these spaces that have allowed the affected bones to be mobile again. When I walk they grind together and you can sometimes hear them pop, crack, or snap very loudly. Also, the second attempted fusion resulted in pseudoarthrosis which is a thin bone covering over an attempted fusion. An uncommon side effect that results instead of a complete solid fusion that would have removed the SI joint and left the illeum and sacrum connected as one solid bone. This thin covering makes it appear the fusion is solid on an x-ray, but the spaces of the original joint are still visible on cat scan {as cat-scan takes slices, that can see behind the bone covering}. When this covering broke, and a subsequent fall was endured (which caused further fracturing of the bones), the end results is a permanent compound fracture of the left SI joint and bone fragments are floating around. It is the plate and screws that make it possible for me to continue to walk, but since they are loose the bare bones do grind together and new bone fragments can be chipped off if I were to further injure the area through falling or a car accident or something.

Ok..radio frequency step by step.
I am brought into the flouroscopy room at my local outpatient surgical center. I am laid face down on the table and prepped. A grounding pad is placed on my right thigh when they do the left side. (everything is the opposite when they do the right side) Iodine is wiped over the area to be treated and sterile drapes are placed over my body with the opening in the cloth showing the lower back and pelic area on the left.

I had an IV for the first time this was done, with mild sedation using versed. In some people versed makes them very emotional. That is the reaction I had. When I started crying from the pain, I could not control it or stop even when the procedure was over, and instead of just crying for a moment or two I was sobbing (I hate crying from pain btw). This caused a nurse (who was later let go) to insult me and call me names. As a result the next 3 times I went through this procedure I did it without an IV or even mild drugs as that nurse (who was still there for the next 2 out of 3) told me only Versed could be used (Which was wrong by the way). However the last time I had this done (Aug. 2009) the nurse assigned to me asked me why I did not want an IV and medication. I told her how versed affected me and that I was told it was the only medication they could use, so I chose to suffer through it rather than be humiliated. She was the one who told me that versed can do that to people and that they can use a different drug instead. She told me to give it a try with the different drug and see if that helped at all. It did. The procedure still hurt like hell but it was not as bad as it is when I am not medicated. So this time I was again given an IV and a low dose of medication right before the procedure started.

For the first part of the procedure only my skin can be lightly numbed. The doctor then proceeds to place each needle with the assistance of the flouroscopy. This is to help ensure proper placement of the needles, and to ensure they are not going into areas known to carry nerve roots for a mobility nerve (sciatic nerve and its roots which are present at all lower lumbar disc levels).

The needles for L4-5 and L5-S1 hurt the most because it is those areas that have a degenerated disc and a herniated one (in that order). There are areas of scar tissue and bone fragments which make it difficult to just slip the needle in. This is further complicated by the presence of the surgical steel screw. One needle goes above the screw, but the other one has to go underneath the screw. This takes some maneuvering on the Dr's part. While these needles were being placed all I can do is cry and try to breathe through the very sharp pains that are shooting across my entire lower back and pelvis. It hurts a great deal.

Once all the needles are placed, they must test each one. This means they send the waves through the needles, one at a time. This stimulates the areas and thus exacerbating my pain. This is the part that gives the reason for not numbing the entire area first and the reason I must be awake for these procedures. As each needle is tested, it is my job to feel the waves and where they cause pain. If I can't feel the waves, they adjust them until I can. In addition to that I must be able to tell them if I get any sciatica type symptoms. This means any numbness, tingling, sharp pulling sensations, or sharp pains going down my leg. If those symptoms are there, the needle must be withdrawn and replaced because those symptoms mean the waves are hitting the sciatic nerves.

Once all the needles are in the correct places and tested, they numb me. But it is not completely numb. I can still feel the waves as each needle is activated, run for a little while, then move on to the next one. The only difference is it is nowhere as intense and sharp a pain as I feel during the testing section. Part of the reason is that I am numb, but because the waves are now at the correct frequency (thus stronger) I can still feel it. Again, L4-5 and L5-S1 are the worst. Once the proper time has passed for each level, the needles are removed and a dressing is placed. I am moved back onto a gourney and into the recovery area. This is where I am watched for about 20 to 30 minutes, then sent home.

Radio frequency procedures damage the nerves around a painful area, thus preventing them from sending pain signals to the brain and lowering how much pain the patient feels. I call them middle nerves because I can never remember their proper names LOL. These are not the surface nerves that allow you to feel sensation through your skin. Nor are they the nerves that lay near your bones and handle movement, bladder and bowel control etc. (Sciatic nerve in lower back and pelvis). The nerves being deliberately damaged lay in between those two areas (surface/skin and mobility nerves near bones) hence I call them the middle nerves and usually explain them to people as the filling inside a sandwich. This scarring interrupts the pain signals that, in a chronic pain patient like me, are constantly being sent to the brain.

The longer a person is in pain, the better their nerves and brain get at feeling that pain. (I guess practice makes perfect is just as apt for the human body) The nerves become overly sensitive and send pain signals to the brain constantly. The brain gets better at reacting to the pain signals received from those areas because the more often it works, the better the brain gets at noticing it. In a chronic pain person what this means is that they will feel pain constantly, and even minor fluctuations in that pain are perceived as more intense by the brain. This can also distract the brain from noticing minor pain relayed from different areas. This is part of the reason I do not always feel the muscle aches that accompany doing too much right away. Instead I only feel those after I have stopped doing whatever it was, sit down and relax for a while. It is while I relax that my brain starts noticing the signals from other areas, as well as from the injured ones. This is why I clean house in 10 to 15 minute bursts, alternating with sitting down for 10 to 15 minutes. It is those resting minutes that allow me to guage my pain level and realize that I am reaching my limit and must stop even if I am not done.

The scarring/burning of the nerves lasts for quite some time. I get about 9 to 10 months of lower pain levels out of it. Some patients can get up to 2 years from this procedure and apparently a few lucky people get permanent results. But for the majority of patients these nerves do regenerate and when they do the original levels of pain return. For some it happens quickly, for others it happens over a period of time. I am one of the latter people.

Side effects vary but for about 2 weeks after the procedure I experience odd sensations, which are signals the damaged nerves are sending out. I get pins and needles sensation throughout the affected area, these little zinging shoothing pains that shoot every which way a few times an hour, a burning or heated sensation in the treated area, or a sensation of tingling as if I had a tens unit on. These sensations start out frequent for me and lessen over time, usually stopping within 2 weeks. They can be greatly alleviated through the use of medications such as Lyrica or Neurontin during those two weeks.

This is what was done to me on Monday the 11th. It will be repeated on the right side on the 25th. In addition I will be scheduled to have the procedure repeated two more times, this time to the sacroiliac joints themselves, which I erroneously thought was already being done and it wasn't. I'm not looking forward to the procedure on the left SI joint, which is the broken one, because I am expecting it to hurt even more than the left side of my lower back does. I am expecting that because it is the part of my body that causes the most severe pain. But I will get it done because I know how much relief these procedures do give me, and by adding the SI joints it is possible that I will be able to lower my pain medication for the first time in the many years I've been stuck having to take such medication on a daily basis. Ohhhhh I am really hoping and praying that this will be possible!! It is also possible that with the pain of my lower back and pelvis under much better control, that I will be able to do a lot more physically and thus rebuild some of the muscle tone I have lost due to immobility. (and maybe lose a few pounds too!)

I originally had the picture printed out to show to my son and give him a little science lesson on nerve conduction, bone structure, and the issues facing a chronic pain patient such as dependency, tolerance and the differences between those two things and addiction. There is a lot of emphasis being placed on prescription drug abuse. As I have stated in older posts, these political views even showed up in his science text book for the 6th grade. The book flat out stated that anyone who takes pain medication on a daily basis is an addict, that there are no medical conditions that cause chronic pain. With those messages coming from so many different sources (friends, family members of his friends, teachers, school books, television, newspapers and radio) I was expecting him to eventually have doubts and start wondering if I was an addict or not. So I took the opportunity of homeschooling and the time to explain these things in detail to him.

So we spent some time discussing tolerance, dependency and addiction and the differences between them. We spent some time going over the behaviors that are present with an addict and how they differ from a non-addicted chronic pain patient. The biggest one being: no addict would put themselves through the hell of such painful procedures as radio frequency, steroid injections or more because their goal is not pain control, it is to get high. Whereas a chronic pain patient will attempt those procedures (and repeat them if they work) because their goal is pain control, not to get high. I didn't even have to point that out to him, he got it on his own. He understood that I continue to suffer through these procedures because they help me and they make it possible for me to deal with my pain without having to increase my medication every year or so. (I took the same dose for 6 years before the pain got so bad that I had no choice to but to increase my medication, even with the injections and RF.

So that is how radio frequency is done on me. For more information about this procedure here are some links:

http://www.spine-health.com/treatment/injections/radiofrequency-neurotomy-facet-and-sacroiliac-joint-pain

http://www.medscape.com/viewarticle/718292

http://www.neurotherm.com/

http://www.webmd.com/cancer/tc/radiofrequency-lesioning-for-chronic-pain-

I do feel lower pain in the treated area, but since it is only 1 area out of 4 it isn't enough to affect my ability to move around or to be out of bed for more than a couple hours at a time. Still it is nice to have a lower pain level in that area and I am looking forward to how it will feel when all 4 sections have been done.

For now I am still stuck mostly in bed because it is the most comfortable place for me to sit, and still stuck with pain levels at a 7 or 8 on a daily basis. This high level makes it a lot easier for me to hit a pain crisis simply by doing normal every day things. So for now I am still having to take it extremely easy with small windows of freedom (freedom meaning I can sit at the dinner table for an hour or half an hour, or sit in my recliner and watch tv for an hour or so, or take a shower without my shower buddy [read hubby] and more.

I hope this long rambling disjointed explanation of radio frequency helps you understand things a bit better. If you hung in and read it all, thank you!

Doing the Bed Dance Again..(sung to Timewarp from Rocky Horror)

2010-09-26T11:15:00.000-05:00

Well here I am stuck in bed this weekend. My back is hurting more today than yesterday thanks to the rain today. I ended up in bed due to my pain level being too high all week and a pain crisis Thursday when the broken bones popped and grabbed the sciatic nerve. I really hate being stuck in bed. Though since I have Kyle's laptop I can at least do blogs and stuff, which helps.

Bridgette is really upset that I am in bed. She hates it when I am stuck in bed because I can't play with her. She will stand outside my door and scream for me.

Starting tomorrow I undergo the diagnostics for radio frequency. I hate having to do the diagnostics every time, but apparently the insurance companies now demand it. So tomorrow afternoon I get 6 or 8 needles in my back, to numb the nerves and see if it helps my pain. If it does they'll do the other side next week. Then over 2 weeks in October they'll do radio frequency on both sides including the SI. It is a painful procedure but once it is past the 2 week point it really does help control my pain. Sadly not enough that I can come off the medication, but enough that I can do more around the house, like cook dinner without ending up in bed. Now that I have to sit at the dining room table to teach Kyle and Stephanie, I need something to lower my pain so I can sit there without hurting myself too much.

Kyle had a rough week with school work this week. He was real slow, just didn't want to do it. He gave me a real hard time Thursday, which is what led to the pain crisis and a weekend stuck in bed. He did much better on Friday after driving me to bed, but by then it was too little too late. Hopefully he now understands that his farting around with schoolwork (ex. 20 math questions takes 4 hours) does hurt me and he'll stop doing it so much. He was so good for a while. I think my mistake was giving him his September game early. I won't make that mistake again. And yes I took the game away.

Invisible Illness Week

2010-09-13T14:25:00.000-05:00

It is Invisible Illness Week. I was so hoping I wouldn't miss it this year and I didn't! YAY!
This week is to help educate people about illnesses that are not visible to the eye, like Chronic Pain. Though, I do not believe that chronic pain is completely invisible because there are signs which are very visible if a person bothers to look for them. I wrote an essay/post about that a while back and you can view it here.

First couple weeks of school, rain, and pain

2010-08-30T14:00:00.000-05:00

Well the first two full weeks of homeschooling have passed. So far so good! Kyle has gotten a lot of work done, and I have a pretty good schedule set for his work. The hardest part is finding a balance between "enough work" and "too much work". That always takes a bit of rearranging until I find what works best for us both. He is learning a lot so far this year and surprisingly he is enjoying it! Unlike last year there have been almost no arguments, which is a major relief. I have been sitting with him and we do a lot of talking about the different subjects, specially history and science. He really enjoys those conversations and so far he is even learning to think about it and make some pretty good comments when I ask him to compare something from the history book to something that is going on in current times.

I have also found that I am enjoying these conversations with him and the time spent with him every day. Homeschooling him does put a lot of work on my shoulders, but so far this year I am enjoying it. However, sitting at the kitchen table, even with a cushion on the seat, is very painful. My pain has been up as a result. Add to that the rain that we've been getting almost daily for the last week or so and my pain is pretty high. As a result today had to be a short day. He did spelling, cursive, and took his math test (he got a 70, which is better than I expected. most of his errors were caused by not paying attention, simple basic math errors). After the test I just couldn't sit in the chair any longer, so gave him the rest of the day off. We could sit in my bedroom, but he gets drowsy sitting in the bed. It is difficult to teach someone who is falling asleep LOL We will figure something out I am sure.

That's pretty much it for me. I am trying to catch up on blog reading. I have 743 posts that I need to read, which is better than the 900+ I started the day off with. So I better get back to it!

Damn Rain

2010-08-27T12:13:00.000-05:00

Rain rain go away..come again another day!

We've had thunderstorms off and on for the past 3 days. This, of course, has caused my pain to rise considerably. Which, as a result of the increased level of pain, causes me to not be able to sleep. Last night I got 2 hours of sleep, but had 3 hours between each of those 2 hours. We've had a heavy downpour this morning with thunder and lightning. Here it is 12:11 PM (central US time) and it is still raining (not as heavily though) and the sky is fully overcast, so it will probably rain off and on all day. Ohman that stinks!

Both sides of my pelvis are just throbbing and screaming. My lower back feels like there is a hot rock in it making the muscles all very very tight, lots of pain and sciatica symptoms.

My son has finished his school work for the day, so I'm going to go to bed and try to sleep. Good night all!

Sometimes it is nice to be wrong

2010-08-17T08:06:00.001-05:00

I don't usually like to be wrong, but then not many people do like being wrong. LOL

However, in this case I am quite happy to have been wrong. I am not alone and the person I had been relying upon did not really believe that I was faking my back. I misunderstood what was said, and one of the things was said the wrong way ( which woke the fear). I have this fear because I have been replaced by my ex-husband as a direct result of my back. In fact, when he told me he chose his girlfriend over me he said it was because she wasn't broken like I am. I've gotten much better about it, but it is a still a sore spot.

Thank you for your support, I really do appreciate it. specially when I am being an idiot... :)

I am so glad to have been wrong though!

Losing Support

2010-08-12T12:49:00.000-05:00

One of the most important things a chronic pain patient needs is someone who believes them that they are in pain. Someone who emotionally supports them, and is there for them. Having someone like that is invaluable. It keeps the person from feeling alone, like the entire world is against them.

There is nothing more devastating to a chronic pain patient then finding out the person they have been relying upon for support as well as strength and courage to keep fighting day after day, really doesn't believe them about their condition. That all the supposed support has been a lie, an act.

I really am alone.

Try Try Try

2010-08-11T05:54:00.001-05:00

If at first you don't succeed...try...try again.

That's a good saying for situations where a person is trying something new, or starting a new job or school or many other situations.

What happens though when that becomes your very life? When it becomes the way you have to handle every day little things that other people take for granted? Things like getting some sleep, using the bathroom, taking a shower, fixing a meal, washing clothes, running to the store for milk and every other little thing. How long can one just keep trying all the time while watching others do things so easily, without thought and hearing from people who should know better (doctors, therapists, friends, and family) that they just aren't trying hard enough? Where do they get the strength to just keep going with little or no support and understanding?

The answer is different for every person in a similar situation. For some it is pure stubbornness, for others it is anger at their mistreatment, for some it is a combination of both, and for others it is the belief that suicide is a sin and will send them to hell, leaving them no choice but to muddle through somehow. For some it is the love of their family and friends that gives them what they need to go on. The reasons for going on, day after day, when everything is a struggle, vary from person and person. Whatever those reasons are it is a good thing to remind yourself of them from time to time, specially when things hit a rough spot.

For me, it is a combination of reasons why I continue to struggle through every day. I am stubborn and don't like to lose, if I give up then I have lost to my conditions. This does not mean that I do not give in to it when I have to (bed days, taking things carefully and within my limits), it just means that I refuse to let my conditions take over my life completely. When I feel angry at my condition, I try to channel that anger into a more productive way be it housecleaning, writing, stitching, or something else. I try not to let that anger take over, instead I try to vent it in a positive manner. The same goes for guilt. There is a lot of guilt with a chronic condition, specially as a parent.

For me it comes down to this, I don't really have a choice. If I want to live some kind of life and not be stuck in a padded room or dead, then I have to keep trying. There is no other option. So I keep trying. It is not easy.

------------------------------------------------------------
Tomorrow starts the first day of school. I homeschool my son and this will probably be the last year I do so. I am nervous because I know that my conditions have affected the homeschool process before. He learned a lot last year, don't get me wrong. I believe he learned more than enough to pass the 7th grade, and I will be having his work reviewed which I have to do by law. I am hoping to catch him back up to the grade he should be in due to his age, which would be 9th grade this year. I'm hoping by the end of this school year he will test at 10th grade level for the 2011-2012 school year and start High School back in the 10th grade where he should be. It was the school system that decided all the work he did at home for 6th grade did not count and made him repeat the year.Granted I agree he did not do enough for the whole school year. I think he did half a school year, and that was always enough to promote my other kids in this school system, but not for my son. Anyway, I have his work set up for the rest of the week and am hoping it works out well. I am nervous though and hoping he doesn't give me the same arguments he gave me last year over doing the work. The hardest part is finding a way to make it interesting. Here is hoping I can do so!

As if chronic pain is not bad enough I can now add Hypothyroidism to my list of problems. I knew it was starting a few years back when my blood test came back off. The chemical my brain was putting out to tell my thyroid how much to make, was three times normal levels, yet my thyroid T-4 (I think it is) was just barely over the low end of normal. They chose not to medicate it at the time. It started to work for a while, then stop for a while. I could always tell when it had entered the "not working well" phase because my skin would dry out real bad and my hair would fall out. Over the past year I have put on weight (that I can't lose), my hair has been falling out pretty heavily (I now have 1/4 of the hair I had 2 years ago), my skin has gotten real dry and many other symptoms. So the doctor redid the blood tests and now the levels were low enough to start medicating it. I started Levothyroxine (synthroid) 125mcg a couple weeks ago. Here is hoping it works.

Choosing Not To Work...Excuse me?!?

2010-08-05T22:06:00.000-05:00

Someone said to me that they find it very unfair that people who "choose not to work, like you did, get services when people who need them can't get them because they have a job". I have not responded to this email yet because I am angry and very hurt by this. The only services I receive is social security and it is nowhere near enough for me to live on my own.

I did not CHOOSE not to work, injury chose me. At the time my back first blew out, I was working full-time and had just been accepted to pharmacy school to become a pharmacist. I was so excited because I wanted to be a pharmacist so badly and I loved my job so much. I did not choose to have a disc in my lower back herniate and press on the sciatic nerve root at L4-5. Nor did I choose to have a crappy doctor refuse to test for a herniated disc (or anything else for that matter) and force me into an exercise machine that caused the disc to first rupture (easy way to explain that is: it exploded) embedding pieces of it in the sciatic nerve root, then herniate again hiding the rupture.At the time I was on an HMO and needed approval to change doctors, and my insurance company refused to let me change doctors, leaving me with no choice but to deal with that crappy doctor who caused more damage to my back.

I don't know anyone who would choose to have permanent nerve damage to their lower back, complicated by an additional herniated disk (L5-S1) and the permanent compound fracture of my left sacroiliac joint. I guess you could say I chose the damage to my pelvis because I chose to have children. Since I chose to have children, and it was having those children that damaged my pelvis so badly, an argument can be made that I chose that particular injury. But saying I had a choice implies that I KNEW the injury was possible (or in my case, probable) when I had no idea that such injuries could occur. I love my children more than anything, but I can say this much I would not have chosen to have them if I had known that doing so would cause so much damage to my body. Not because of the pain and mobility issues, but because of how those same children have suffered as a result of having a disabled mother. I would rather not have them have to live the way they have, watching me suffer and not getting the same physical things other kids get. I see other parents taking their kids to ball games, the zoo, running around with them, or riding bikes and I feel guilty because I can't do those things with my kids. It seems unfair to me that my children got a mother who can't play tag with them, or chase after them to teach them to ride a bike, or play ball with them in the back yard. My children love me, and I love them, but I also know they have had to deal with disappointments because of my back and pelvis that are not fair to them.

OK I'm down to wanting to curse and scream..so I'll stop.

Pain, Stress and Hope

2010-07-16T07:30:00.000-05:00

I've been doing a lot of reading about my diagnosis. What I have been finding is not very encouraging though. A benign Phyllodes Tumor (aka philloides tumor), when it recurs, is usually malignant. There is a study going on in New Hampshire that is showing radiation to have some positive effect on these tumors, so there are treatment options. However the best treatment still appears to be complete surgical removal, preferably with a clear margin of healthy tissue. Everything I have read agrees that even a benign phyllodes counts as a positive cancer diagnosis. So now I am doing daily breast self exams because I want to catch any new growth as quickly as possible.

I have an appointment to see an oncologist on August 4th, one who was trained at the M.D. Anderson hospital in Houston TX. Since I had already been recommended for a prophylactic mastectomy but couldn't find a surgeon willing to do it. I want to see what the oncologist has to say. My hope is that he will agree a mastectomy is necessary now that I have a cancer diagnosis and he will know a surgeon willing to do the surgery. Removal of the breasts is my best chance at not growing another tumor, this one malignant.

My primary care doctor is putting in prior approval paperwork for the genetic test (BRCA I and II genes), but test results still takes 6 to 8 weeks or longer. I am hoping that if the oncologist agrees we can get the mastectomy done before that. Though I seriously doubt it will happen.

Dr. Idiot, the surgeon who did the lumpectomy, told me that if I had cancer he would do a mastectomy. Despite phyllodes tumors counting as a cancer diagnosis, he still won't do the surgery. He still wants the damn genetic test. This just ticks me off. With my family history and now this tumor, it should be enough for him to believe that a mastectomy is the right choice.

My back still isn't back to normal since the surgery last week. My lower back still has much higher pain than it usually does and the SI joint is also very unhappy. I will probably spend today in bed again trying to get both back to my normal by resting them completely. There really isn't anything else I can do.

Ron has been truly wonderful through all of this. He has stood by me every step of the way. He also spent the afternoon and evening reading about these tumors after we got the diagnosis. Like me, he wanted to know everything he could about them and what treatments, if any, would be best for it. He is behind me on wanting the mastectomy. I have been so grateful for his love and support through all this. It is wonderful to have a partner who believes in and will love up to the vows he took when we got married.

Ron, thank you for everything! I love you!

Biopsy Results

2010-07-13T06:05:00.001-05:00

The biopsy results are a good and bad kind of thing.

Good news first: BENIGN (not cancer yet)

I do not have cancer yet, but it was a tumor called Phyllodes Tumor. This is a rare tumor (counts for less than 1% of all breast cancer diagnosis). It is a connective tissue tumor rather than the more common ductal or lobal tumors. It is very aggressive (it grew 3cm in 9 days..2.4 at ultrasound..5.4 when removed 9 days or so later, it weighed 25grams), does not respond well to chemo or radiation. It counts as a positive breast cancer diagnosis even if the tumor is benign at the time it is found. Unlike other breast cancers it is not classed by stages (example stage 1-4), it is classified as benign, borderline, or malignant (cancer) based on the number of irregularly shaped cells in the tumor and how fast cell division is occurring.

I am glad that I insisted on a full lumpectomy for this biopsy because these tumors ALWAYS give a false negative (remember Dr Idiot said false negatives never happen?!?! IDIOT) on a needle biopsy, in fact they usually come back with a misdiagnosis of fibroadenoma (very benign type growth). Had I followed the surgeon's idea of a needle biopsy, I would have been misdiagnosed. They are also very hard to diagnose by mammogram, ultrasound and MRI due to the fact that they look very similar to fibroadenoma. Though an MRI can give the best view of the tumor and thus be helpful in planning surgical removal. Surgical removal is the usual choice for treatment of these tumors, sometimes requiring full mastectomy.

Next step will be genetic test (Dr. Idiot said if I come up with one of the genes, he will do the mastectomy I asked for) and bilateral mastectomy as this is the best way to prevent a new tumor (which will be cancerous) from growing (the less breast tissue I have, the lower my chances of growing a second tumor (this one cancerous) of this type.

You can find out more here:
http://breastcancer.about.com/od/types/p/phyllodes_sa.htm"

http://www.cancer.org/Cancer/BreastCancer/DetailedGuide/breast-cancer-what-is-breast-cancer"

Due to the type of tumor I will be seeing a couple different surgeons in the hopes that one of them will do the mastectomy without the genetic test, though I plan on getting blood drawn for the test in case all the surgeons I see demand the test.

Leave it to me to get a rare type of tumor that is difficult to treat and difficult to diagnose.

Scared, Antsy, and No Sleep

2010-07-12T08:42:00.000-05:00

It is 8:17AM here (US Central Time) and I have been awake all night. I tried to sleep a few different times but I kept dreaming about the idiot surgeon telling me I had cancer. I understand why that is showing up in my dreams. Today (this morning in fact) is the day I get the biopsy results from the surgeon. Despite trying not to get my hopes up too high for a benign result, I know my hopes are sky high and if the results are malignant I am going to be crushed. I slept a total of less than1 hour (20 minutes, separated by 4 hours in between).

I've been through a lot in my life. Neglect, emotional and physical abuse as a child and an adult, sexual abuse, rape, bouts of severe depression, injuries to my back resulting in severe chronic pain. I should be able to handle this without feeling like I am coming unglued shouldn't I? I am trying so hard to keep it together and not lose it, mostly for my son's sake. He doesn't read this blog so I can vent it all here. Though my daughter does read it and I don't want to upset her either. But she understands about venting a lot better than he does as she is older and has her venting moments too. People expect me to be strong, to keep it together and not lose it, but I think on this issue I'm going to and I pray they understand.

I am so flipping scared! I just want to find a small, dark place, crawl inside, curl up and hide. I don't want to face this. I want to forget it ever happened and ignore it. I'm sitting here typing and watching my husband stand up, pace a bit, sit back down and try to concentrate on his game only to stand up and pace a bit. He's been doing that for the last 15 minutes. I can see his worry and fear in his eyes. But I can also see his love for me and his determination to be there for me every step of the way, no matter what the diagnosis is and that just amazes me. I am counting on it too. I know him. He will keep his word. He has been here for me every moment of the past 13 years (since we've known each other), even when we did not live together if I needed him, he was just a phone call away. If I needed him to be there, he would get in his car and come to me (an 8 hour drive I think it was). It is a lot nicer to have him right here in the same house as me and boy do I need him this time.

I cried last night. I tried watching a movie to distract myself. I did pretty good distracting myself most of the day, but as the house quieted down (a friend went home and Bridgette went to bed) I had a harder time of it. So I put in a movie we got from Netflix called "Lovely Bones". It is based on a book that I really loved. However, last night was not a good night to watch such a sad and emotional movie. I made it through the first 25 minutes or so then started bawling. I turned the movie off, went into the bathroom and cried. I pulled myself together and decided to go to bed and read. Ron (DH) said he could see by the way I sat on the bed for a minute before laying down that something was wrong so came over and hugged me. As soon as his arms went around me I just started crying. I couldn't help it, but it is ok because I know he doesn't see my crying as a weakness or an attempt to manipulate him. I do not cry very easily but I did last night. In Ron's arms I am safe and it is safe for me to let go because he will hold me up and be there for me in those vulnerable times. I can't begin to tell you how wonderful that is and how great it feels to know beyond a shadow of a doubt that he will not harm me in any way for having times when I need to cry.

I know I am rambling but this is all I want to do right now, just ramble and vent while I wait for the time to go to the doctor's office. My appointment is at 9AM, the office is less than 5 minutes from my house, and it is now 8:35AM. My mind is whirring, my heart is pounding, and I can't concentrate to read or stitch or anything so I'm doing what I used to do when I had such emotional worrisome moments before; write it all out.

I know this is going to sound stupid but part of me wants to hear the doctor say it is malignant, just so I can look him in the face and tell him he is an idiot and that I hope he learned something from this. That I hope he learned that not all his patients are unintelligent idiots, and that he should LISTEN to his patients more often. I also want to tell him that he needs to go back to medical school and retake the courses where they cover cancer, specifically breast cancer because the information he is giving his patients (the information he gave me) is WRONG WRONG WRONG!

I wish this was over. The only other times I have felt this worried, this scared, vulnerable, tiny, terrified etc etc were when I was giving birth to my children and those occasions when my children had to go into the hospital for one reason or another. The times I had to be on suicide watch for my daughter, hide all the sharp items in the house where she couldn't get to them, a constant litany of "please God help her. Please God Please God Please God" running through my head. The time my son had pneumonia (both lungs) and an asthma attack, his oxygen saturation in his blood was in the 70s, as soon as they got that reading the nurse ripped him out of my arms and literally took off running with him into the actual ER treatment rooms (we had been in the triage/check-in area). For a second I was stunned and could only watch as this woman took off with my baby (he was a year or so old) before it dawned on me that I need to follow her and I took off after her. The same litany of please god please god going through my head.

It is time to go. please God, let him say benign.

please

Surgery Is Done

2010-07-09T00:50:00.000-05:00

The surgery is over. I'm sorry I did not update sooner but I've been in the middle of a pain crisis and spent Tuesday and Wednesday in bed. Tuesday was because of after-affects of the surgery and Wednesday & Thursday was because I was in a LOT of pain.

For those who do not understand what a lumpectomy is I will explain. It simply means the removal of the entire lump and possibly some surrounding tissue. This way they have the entire lump to biopsy. I wanted this method of biopsy because I did not want to take the chance of getting a false negative which can occur with a needle or core biopsy (they are RARE [false negatives]).

The nurses and anesthesia people were all wonderful and supportive. One gentleman held my hand and talked softly to me while I fell asleep. I was deeply touched by them saying a prayer that the lump turns out to be benign (non-cancerous), it was really sweet. I was a tad annoyed that the surgeon did not speak to me at all except for saying hello when we passed each other in the hallway (he going to speak with another family and me going to give a urine sample). Every other surgery I have had, the doctor has always come to me while I was in pre-op being prepped to talk to me, answer any questions, and tell me what to expect. He was also very quick when speaking to my husband when the surgery was over and I was in recovery. Ron said he talked quickly and left quickly just saying "the surgery went well and she's in recovery". No time for questions or anything else. I really dislike doctors who act this way. It is like they forget we are people and see us as nothing more than an object or something.

If it turns out to be cancer, I will not be letting this surgeon handle the mastectomy. I would much rather have a surgeon that cares dealing with me for such an emotional operation. It is a big deal for a woman to lose her breasts and I don't want some guy who is in a rush and can't talk to his patients being the one to remove mine.

I now have a 3 inches (or so, didn't actually measure it) cut on my right breast that is held together with super glue. It is tender and sore but not too bad. I CAN stitch, which was really nice! My return appointment with the surgeon is on the 14th but he did say the results may be in Friday the 9th, or Monday the 12th, so I will be calling the office to see if the results are in and they'll give them to me over the phone. I seriously doubt they'll give them to me over the phone, but I figure it can't hurt to ask.

As to the pain crisis, I think it was caused by the surgical bed/table I was on and the hospital gurneys. None of them were comfortable and I had to lay flat on my back, which is painful to me anyway, for a few hours. I was out for about 2 hours. The table/bed thing (not sure what they call it) in the surgery suite was not very wide and they strapped my legs down out straight which really hurt. When I woke up in the recovery area there was a pillow under my knees but I don't know how long it was there. So I got 2 days stuck in bed due to pain, but I did manage to do some stitching yesterday, which was nice. Mostly I slept off and on, a few hours here, a few hours there and read or stitched when I was awake.

I woke up at 11:45PM Thursday night so now I am awake. Most likely I will not be able to go back to sleep and will have to try and make it through all of today (Friday) without a nap, specially since I have a 1PM doctor's appointment to discuss my thyroid blood test results. Yay fun ..not. LOL

Well that's it for me. I'm going to try to finish catching up on blog reading as I have 282 posts in Google Reader.

Rain, Rain, Rain

2010-07-05T19:04:00.000-05:00

It has been raining almost every day for the past three weeks here. Rain always makes my pain go up, most likely due to pressure changes in the air. So I've been hurting but dealing with it for the most part. I have felt rather odd for the last week, in limbo, just waiting for the next thing. I can't focus on anything and just feel antsy. I know why, it is because I am waiting for the lumpectomy surgery (tomorrow) and the biopsy results to follow. Since I don't know for sure what the lump in my breast is, I am left unsure of what to do next or what to expect. I really hate this part of any medical diagnosis, the waiting for results part. Once I know what is going on, I can figure out what to do next, research the diagnosis, learn as much as possible and start moving forward. But during the time period where I don't have a diagnosis, all I can do is wait and feel antsy and a bit lost. It sucks because I can't focus on anything, not stitching, reading, or anything else. I start and in a few minutes I get up and try to find something else to do. Oh well. Tomorrow is a step forward. I have to be at the hospital at 11:40AM and should be sent home around 6:00PM or so. Then comes another week of waiting for the biopsy results while letting my breast heal. Ohman that will be a hard week!

That's all that has been going on for me this week. Just...waiting.

Saw The Surgeon

2010-06-29T15:15:00.002-05:00

I think this guy got his medical license from a Cracker Jack box or something.

What a most wonderful visit!! (NOT)

He started out wanting to know why I take the medication I take and I told him. He proceeded to tell me they never should have attempted to fuse my SI joint because "everyone's sacrum moves like that" (over 30 degrees of movement, very unstable)

According to him family history does not count in breast cancer, neither does the changes to my breasts, the calcifications noticed in 2006 should have been biopsied (no one mentioned it). No mastectomy because my reasoning for wanting it isn't good enough, and the above statements.

Lumpectomy only on Tuesday the 6th.

Would consider a mastectomy if a genetic test shows I have the gene (even though the gene and family history don't matter re: chances of developing cancer as he said earlier in the visit), and if lump is cancer then they will do a mastectomy.

According to him needle and core biopsies never have a false negative either.

Not a fun visit. Doctors really hate it when a patient comes in with ideas of their own and he is, apparently, one of those.

End result after crying from pure frustration: July 6th, complete lumpectomy to biopsy whole lump (which I requested and he didn't like but followed along on this point at least). That's pretty much it.

Came home, cried, went to bed. Apparently wanting my best chance at preventing breast cancer is not a good enough reason for mastectomy, the American Cancer Society lies to people, and everything I know is wrong. Lovely visit with a doctor *sigh*

So today I called one of the local oncologist centers and spoke with their nurse (the one who answers patient questions and such). After the way the surgeon so adamantly refuted everything I had been told, or read about breast cancer, I was confused and wanted answers. I wanted to be sure that my information was correct just for my peace of mind. So I called an oncologist office, I figure since they are the cancer treatment doctors they would have accurate up to date information regarding cancer. Yes family history does matter. If you have a first line relative (mother or sister) who had breast cancer, it increases your chances of developing BC. For me, my chance is very high because ALL female relatives had BC diagnosis, before menopause, and all died of BC on both biological mother and father's sides. The gene does count in increasing BC chances but apparently there are several additional genes that are being researched as possible contributors as well as the BRCA I and II. Yes enlargement, thickening of tissues (making it harder to diagnose possible spots on mammogram etc.), and calcifications in a person with family history can be "pre-cancerous changes" and/or precursors to cancer. (all of which I have) The nurse I was speaking with called this surgeon an "idiot" and I laughed. She then told me that despite prophylactic mastectomy being my best chance, I probably won't find a surgeon willing to take the chance on doing it until cancer actually shows up. She also recommended having the genetic test done because it would carry more weight with a surgeon and might tip the scales in favor of mastectomy since the surgeons are refuting an extensive family history are "not enough".

My primary care doctor's office called this morning to set an appointment for me to come in and discuss my thyroid test results, so while there (Next Friday the 9th) I will ask them to order the BRCA genetic blood test.

So at least I know that my information is accurate, even if my surgeon doesn't believe it to be. It is nice to know I'm not nuts LOL

All this stress, and today's lovely rainy weather, is driving my pain levels up pretty dang high. So its been a rough couple of days and it doesn't look like its going to get any better for a little while.

(This post will be duplicated on my stitching blog)

How stress affects chronic pain

2010-06-27T16:26:00.000-05:00

Having pain every minute of every day is not a lot of fun, but what makes it worse is knowing that every day things can make it worse. Changes in hormones and regular body changes before during and after menstruation make the pain worse. Stress also makes the pain worse. Stress often causes people to tighten up their muscles, without being aware they are doing so. This tightening can cause muscle spasms in some people (people like me with nerve damage or back issues for example) and just the added tension of tight muscles will increase the pain. The mental aspects of stress (such as whirling thoughts etc) lower my ability to deal with or pretty much ignore pain that is between a 2 or 5 on the pain scale. Instead, because my mind is so overwhelmed and I am mentally/emotionally exhausted, my coping skills are low and pain that is at a 2 might feel like it is at a 4. My pain tolerance goes down. This seems to be true for most CP (Chronic Pain) patients that I know.

Fighting pain, dealing with it, and/or just ignoring it every minute of every day takes a great deal of energy. If my energy is focused elsewhere (by whatever stressful situation is going on) then I have less energy to deal with my pain. This can cause me to feel more pain than usual, or even other symptoms such as all-over achiness that I do not normally have. I find myself napping multiple times a day and still sleeping for a minimum of 6 hours (or more) at night, I am tired after being awake for just a couple hours.

Facing a possible mastectomy and cancer diagnosis is extremely stressful, and it is affecting my pain levels. The fear, the unknown, the being left in the dark right now isn't helping either. My pain is higher than usual, my tolerance is lower, and my skin is now sensitive to touch. Even a light hug with arms around my shoulders causes my entire back and pelvis to throb. This doesn't usually happen unless I am in a severe pain crisis. I know most of this is caused by the stress and worry I am feeling. I am trying to keep myself from going nuts, doing deep breathing, meditating, stitching, cleaning (My bedroom looks MUCH better now!) and other means of stress relief, but it isn't making the stress go away. These things are simply keeping me from going insane and just running away somewhere.

So how does stress affect chronic pain? It makes it worse.

Stream Of Consciousness Writing

2010-06-25T18:17:00.002-05:00

This entry is a stream of consciousness writing, which means whatever pops into my head will be written down. It may not make much sense, but it is not meant to. This is just to relieve myself. In the past I've done this in written journals when a situation that was causing extreme stress was going on and I found that such writings did help to alleviate some of the stress. What surprised me about it was also finding that doing this occasionally made the whirling thoughts either slow down a bit or stop completely. These are the thoughts that are running through my mind since I was told the lump in my breast was not a cyst or infection and a biopsy would be needed. Having lived with this time bomb waiting to go off inside me (due to family history of breast cancer) I did not expect to be this upset, after all I knew this would happen sooner or later (and probably sooner than later). Despite this my reaction has been intense, very emotional, and very convoluted which surprised me. So I'm going to try this here to see if it helps. (Family history: every female on both biological mother and father's sides died of breast cancer, all before age 50. my mother at 44 [I think] and her mother at 31. none survived 5 years from diagnosis) So here it goes...

OMGOMGOMGOMGOMG a lump..shit..fuck..its cancer..I know it, its cancer..it has to be. omg omg omg omg I can't deal with this..my kids, what about my kids? my son..he's just 14, too young to lose his mother. no I won't die, I can beat this. but no one in my family has ever beat it, none lived longer than 5 years from diagnosis. shit shit shit fuck fuck fuck NO think positive, its just fibroid growth, think positive think positive. can't oh god oh god please, please just fibroid please god ok? please? my niece, she's 2, sees me almost like a mom to her, this will devestate her and sam, oh my god sam..my baby girl..sam..ohshit..this will kill her she's already very stressed...god please just a fibroid come on god give me a break please. what the hell am I going to do? calm down missy calm down, you can handle this..no no I can't ..can't I just run away? run away from it and hide somewhere? I am so fucking scared. why am I so scared? I've known for many years that this would eventually happen. god that pissed me off when marty said that on Monday "you knew this was a possibility" like that made it any better..know he didn't mean it negatively but shit that hurt and pissed me off, like I wasn't supposed to be upset, like it is no big deal, like I shouldn't be scared, worried or anything....but he's right, I have been expecting this for years, I knew this would happen eventually I knew breast cancer (for me anyway) wasn't an "if" it was a "when" and apparently "when" turned out to be at age 41..I should be stronger than this..so scared, so fucking scared...want to hit someone..so fucking scared and hurt and that always makes me angry..don't want to be angry, it doesn't help god please, please god don't let it be cancer, please god give me a second chance..I thought I would be able to handle this better but I can't, I'm failing Ron, my kids, my friends because I'm falling apart. They all expect me to be so strong, so capable..able to face anything and just deal with it..but I can't. so fucking terrified..so small...so weak and useless..so fucking broken...so scared..vulnerable.. Ron! this is going to devestate Ron, ohmygod I never wanted to hurt Ron and I know this is hurting him..he's so clingy now..he's not sleeping well..so upset..so scared..I can see it in his eyes..never wanted to hurt or worry him like this..ohgod I'm failing him, failing myself, failing everyone..please make this go away, please please please...Ron, ohgod I need Ron..I love him so much and I know after his mother's death from cancer this will be flashbacks for him. he told me years ago that he didn't know if he could go through cancer treatment for someone he loves again. he's already had a heart attack..what if the stress of this causes another? oh god please no. please please please give Ron the strength to deal with this..please don't let him die or have a heart attack. ohgod I can't believe this..why now? isn't a lifetime of massive pain enough? Isn't knowing that the pain will just get worse every year, eventually needing a wheelchair and probably ending up in some shitty nursing home unable to care for myself due to pain enough punishment for whatever I have done that was so fucking wrong? what the hell was I in a past life, Adolf Hitler or something? what did I do wrong to deserve chronic pain and now breast cancer? think positive missy, think positive it could still be a fibroadenoma, it may not be cancer. you have to think positively. yeah right, come on you idiot you know its cancer..you had pre-cancerous changes back in 2006 and after those type of changes a cancer diagnosis often follows within 5 years and this is the 4th year. the damn thing is 2.4cm long almost an inch and wasn't there 2 weeks ago. it grew fast..does that mean it is a very aggressive cancer? ohman please no. so scared..so tired..can't do this I just can't. this is horrible so horrible. I hate not knowing..why isn't there a simple blood test to detect breast cancer so people don't have to wait days or weeks and drive themselves insane? I don't even know when the biopsy will be done. why didn't I get the mastectomy in 2006? why didn't I push for a second opinion? why was I so stupid as to believe that surgeon that there were no other surgeons that do mastectomies in my town? stupid stupid stupid bitch. I should have done more, I should have been willing to go to pensacola or tallahassee or anywhere else to get a second opinion. I shouldn't have just let it go. I should have done the stupid genetic test he wanted despite the difficulties of life insurance and all that shit, just to get the mastectomy and lower my very high risk for breast cancer. stupid of me so damn stupid. why did I just let it go? why didn't I push harder? oh god this is horrible. breathe missy breathe..it will be okay, stop freaking out...<breath > <breath> <breath> <close eyes and breathe for a minute or two>

tumor..solid palpable mass..biopsy necessary. shit shit shit so fucking scared. will the surgeon do the mastectomy..it is my best chance at beating it if it is already cancer or preventing cancer if its not cancer yet. but will he do it? God please, make the surgeon do the mastectomy, please god please please please..give me a chance here, for my kids' sakes..please don't make my kids go through losing their mother...please don't make Ron have to relive the worst time of his life..please god. chemotherapy, throwing up ohman I hate throwing up..losing my hair and being bald ohman ohman ..I can do this..I'm strong..I've come through a lot in my life..abuse..sam's abuse and her intense long struggle with ptsd, severe depression, d.i.d all of it..divorces..crap with my so-called family..this should be easier..but its not..its not any easier..this is so fucking hard..this is more terrifying than going homeless with an infant relying on me..ohgod pleasepleasepleaseplease make this go away..please can we do the last 10 days over again ..no lump no nothing..I swear I'll demand the mastectomy I should have gotten in 2006..please god make this go away. come on missy stop being a blubbering baby..just stop this doesn't help anything going round and round like this..STOP IT..I can't..I wish I could because this is so stressful..I keep crying in the bathroom so no one hears me, so I don't upset anyone or make them any more scared than they already are..Kyle's statement when I got home after the mammo.."you're going to die?!?" keeps going through my head..the fear on his face..ohgod I can't do this to my baby..I can't promise him I will live because I might not and then he'll be even more pissed that I lied to him in addition to so hurt and angry that I died..shit shit shit shit..this is just horrible. <deep breath> OK enough of this shit..I'm going to go stitch something and force my brain to stop this round and round..tumor..cancer..its cancer, I know it is..my instincts are screaming that it is..what if its not instincts and just fear..I've been scared before but never like this. now I know what goes through a person's mind after they hear they need a biopsy..this is something I think I could have lived without knowing..I don't like feeling this way..my body has betrayed me again..hell after my back and pelvis I should be used to it, but I'm not. I should have been able to handle this much better, but I can't. I can't handle this with the calm I thought I would. I'm not strong like everyone thinks I am. I'm weak, vulnerable, terrified and small. ENOUGH MISSY! ENOUGH! STOP IT! GO STITCH OR CLEAN OR ANYTHING STOP JUST SITTING HERE DRIVING YOURSELF NUTS IT DOESN"T HELP. GO!

-----

And that is how I finished "Frogging Around" the other day. This crap is still going through my mind off and on today and I've taken 3 naps so far to escape from it. I've done laundry to escape from it. My back is killing me so I can't do housework and vent the nervous energy that fills me. I don't know what to stitch now, I can't make up my mind. I feel like I am alternating between spinning in circles and being lost alone in the dark. This sucks.

I am trying so hard to be strong, to be there for my family and friends so they don't get more scared when all I want to do is run away or hide. I feel myself closing in on myself and withdrawing from others, curling up to lick my wounds. I know it is okay to do that when one needs to, so long as it doesn't last for too long, but I am not sure I can pull myself out of it. This really does suck.

I'm not sure typing that stream of consciousness helped or not, I will probably have to keep doing it until Monday when I find out whether the doctor will do the mastectomy or not. I am really hoping that he will, that he will realize it is the best option regardless of the biopsy results. His nurse called to remind me of my appointment on Monday and blew my mind. She asked me if I was okay and handling this okay, then listened to me babble for 15 minutes. She did not interupt me or tell me she had other things to do. She just listened and told me she understood and that it is okay to be scared. She assured me that Dr. Wong would listen to me and help me make the best decision and he is looking forward to seeing and helping me. She told him everything I had said when I called on Wednesday afternoon. This surprised me but also made me feel better. Is it possible that I really have found a doctor who is a doctor because he cares about people? I hope so because it will make this all a lot easier I think.

Ok I am going to work on Christmas Dreams I think, it is the wip I have that is closest to being finished. I am sorry if this post upsets anyone. Please realize that this was not my intention, I just needed to get it out of my head. I do feel a bit calmer, so that is good :)

Not A Cyst

2010-06-23T13:03:00.000-05:00

Diagnosis from Mamo and Ultrasound: Solid Palpable Mass

Next step: Biopsy to determine if it is malignant (cancer) or benign (fibroid type growth or other non-cancerous mass)

Thank you all for your thoughts and prayers, I appreciate it.

I'm going to go hide for a bit, cuddle with hubby and see if I can get my mind around this, get past the fear and shock and in to the "fight it" mindset.

Terrified and needing strength

2010-06-23T09:14:00.000-05:00

As if a broken pelvis and chronic pain are not enough, I found a lump on my breast this weekend. I saw the doctor on Monday and she confirmed the lump. They are going to do an ultrasound and mammogram today. On an ultrasound a fluid filled thing (such as a cyst) will appear gray, a solid growth (like a tumor) will appear black as the sound waves can not go through them. I am praying for gray on the ultrasound.

Approval code paperwork has already been started for the surgeon in case I need a biopsy, this way I won't have to wait for approval codes.

I am terrified as breast cancer runs very strongly in my family and my chances are very very high (95%) to contract breast cancer in my lifetime.

I would appreciate any thoughts, prayers, well wishes or anything. Due to this I just haven't been stitching as I am too nervous to pay attention. Heck I haven't been doing much except praying for a cyst or something easy to take care of and not a cancerous tumor.

I'm sorry

Depression Messes With Everything!

2010-06-21T05:43:00.001-05:00

Depression hurts those who suffer with it in so many different ways. First there are the emotions involved, feeling sad all the time, feeling down, anxious, overwhelmed and so many more. The loss of energy is also a major pain in the neck. Even if you manage to drum up the desire to do something, you are just to dang tired to do it. Body aches and pains are a nasty effect for anyone but especially so for someone who already lives with pain everyday. I am not trying to say that the aches and pains a non-chronic pain patient who is depressed feels are somehow less annoying or anything like that. I just mean that for a depressed chronic pain patient, the aches and pains from depression increases their overall pain level which makes it very difficult to manage the extra pain. Complete loss of sex drive also stinks. This can result in your partner wondering if you have lost interest in them, or no longer find them physically attractive or other negative thoughts. The complete loss of caring about anything is also a horrible effect of depression.

As I tend to be the kind of person who genuinely cares about other people, their situations and more. Losing that made me feel even worse. I am very happy with my compassion and empathy for others. It is, to me anyway, a good way to be.

These, and a few others, are all symptoms of depression that I have dealt with before and which feel "normal" to me, at least normal for when I am depressed. But recently I realized I have another symptom that really bothered me. Though I'm not sure if it is a symptom or just a side effect as logically it could be a step or two further down the "nothing matters at all" path that I wandered through with this bout of depression. Anyway I found myself once again able to enjoy my cross stitching hobby. Picking a chart, getting together the floss colors for it, picking out a fabric and getting a piece big enough for the design plus a bit extra for framing/finishing, then the actual process of stitching the design and watching it come to life on the fabric, each stitch bringing forth more and more of the design on my fabric; the whole process is just a great deal of fun and very satisfying to me! I may not have a job, but I know I am not useless or worthless because I can create beautiful stitched pieces of art! (leave my delusion alone please ROFL)

I have started a few different projects and picked up an old one. There is the Quaker piece, Frogging Around, the Delft Card (which is now finished!), Christmas Dreams and the Anniversary Sampler for Ron (DH) and I. As I got close to finishing the Delft Card I got scared! I kept picking it up, putting in a stitch or tow, then getting terrified and putting it away. Eventually I stopped even trying. This of course made me feel silly, sad, angry and more. I didn't talk to anyone about it because I was afraid they wouldn't understand, or think I was making it up to get attention, or think I was over-reacting and there really wasn't anything wrong.

But feeling my heart race, sweat break out on my skin, my hands shake and my breathing speeding up were all quite real symptoms and the emotion was also quite real; I was afraid to finish. I think the fear may have been two-fold in nature. The whole fear of failure/success so just don't try thing, I know I felt afraid of finding out that I couldn't finish it. Then there was fear of screwing it up real bad and having to start over. With all those doubts rolling around in my head and the fear knotting my stomach, it just became easier to put the design away rather than continue to try and stitch.

Last night I finally told my DH about how I have been failing, asking him to help me push past this. I also told my friend Angi, who is also a stitcher. I sat down, determined to finish the Delft Card I started at beginning of month to send to someone in the UK so they could sell it and raise money for cancer research. Angi and I sent text messages back and forth and both of them kept reassuring me that I could do it. I did ask both of them at least once if I could stop. The last time I asked I was 47 stitches from done. They both told me no and Angi's DH (Dan) piped in with a no as well. Thanks to their support I did finish the card. At first I felt mostly relief that it was done. Then came disbelief, I kept staring at it thinking "It's done?? How did that happen? Is it really done?" and checking for any missed stitches. I just couldn't believe I had done it! Then after a few minutes the wonderful rush of joy filled me and I got to experience the wonderful rush that accompanies finishing a piece and it FELT GREAT!

When I got on my blog to post the "done" I found 4 comments awaiting approval. They were all very supportive, understanding, and encouraging. No one laughed at me either. It made me feel so much better!

Still this was a rather odd experience as it is not something I have had happen before, I have had something similar but the reason for it was very different as it was the result of an abusive relationship and it affected my ability to write. Heck I couldn't even write in my journal, though I have finally gotten over that and am writing again. So here is hoping that this is gone also! I did some more stitching on Frogging Around and should have it complete tomorrow I hope!

Being able to write all of this stuff down (so to speak) on this blog has been so very helpful to me since I started it. The comments I receive make my day and better still I have met other people in similar situations as myself. This has been very helpful to me! Just knowing that I am not alone helps a great deal!

The right person appears at the right time

2010-06-17T18:34:00.001-05:00

I went to the doctor today for my pain management appointment. I was assigned to a new physician's assistant (PA) named Denise. After finding out yesterday when the office called to remind me of my appointment that I would be seeing someone new (this has happened for my last 3 appointments) I was worried. But since I knew it was a woman I was also hopeful that she would be as good as my old PA (also named Denise). In my experiences I have much better luck with female doctors or PA's than I do with male ones. Anyway she is a really nice lady, who actually listens to her patients. She did a physical exam, which I was expecting since this is the first time we've met. She also told me that the reason I am scheduled for an appointment every 3 months instead of every month is because I am listed as not being at risk for addiction, diverting my medications, or anything like that. I already knew this about myself because I am very careful to follow all the rules and only take my medication as prescribed, but it was still nice to know that my doctor's office knows that I am not a risk as well. So it was a great visit just for the new PA, but something happened in the waiting room that made it a truly wonderful and touching visit.

I was stitching in the waiting room like I usually do. Usually the wait can be a couple hours so stitching keeps me occupied and helps keep me from getting annoyed that I have such a long wait time. This lovely older woman came over to me. Her name is Grace. She asked to see what I was stitching. I was working on the Delft Card for a friend in the UK to sell and raise money for cancer research. She said it looked wonderful then asked to see the back. I knew right then that she must be a stitcher because only a stitcher would know that the back of a piece is important. So I showed her the back and I was nervous! With her age I knew that she had most likely learned from her grandmother and mother, add in her accent and I knew she had learned from an older generation in a different country. The older generations, when teaching younger people to stitch, emphasized that they do it correctly, including making sure the back is as neat as possible. Knowing all this I was nervous to show her the back of my work, that it may not be up to her standards but she told me my back was perfect! She started complimenting me on how neat my stitches were, how neat the back was and complimented my grandmother and mother for teaching me. I had to tell her that they did not teach me, that I taught myself. She was surprised but said I obviously learned well.

She then told me how her mom and grandmother taught her to stitch when she was a little girl, back in Panama. She told me she used to stitch a lot and tried to teach her 3 daughters, but none of them were interested. She asked me to put some pieces in the County Fair in October and mentioned how sad she was that there was so little needlework being shown at the fair now a days. I told her about the ribbons I got in the Cochise County Fair back when I lived in Arizona. She said she wasn't surprised because my stitching is so neat.

She went on to tell me that she still had many patterns that belonged to her mother and how she kept them because they were her mother's. She talked about how much they meant to her and had tears in her eyes while talking. Then, she blew my mind! (i'm still very pleasantly surprised!)

She wants to give me those patterns! Can you believe it? Some of her most prized possessions and she wants to give them to me! I still can't believe it.

She said many of the patterns belonged to her mother and grandmother, but since she doesn't stitch anymore and her kids aren't interested, she has held on to it all hoping to find someone who would treasure them to give them to, someone who would use them as well. I almost cried! I will certainly treasure every single chart! I am so touched that she would give me the patterns that obviously mean so much to her, specially since we literally just met! I started to cry a little and couldn't thank her enough. I know how much those patterns mean to her because they were her mother's and her grandmother's. She said that she had watched me stitch for a few minutes before approaching me because she wanted to see if I was really enjoying the stitching or just doing it to get it over with. She said that I appeared to be a true stitcher, one who stitches for the joy of stitching. I told her how much I enjoy stitching, that it is very important to me because I can't work, so stitching gives me something to work for. I kind of see stitching as a job almost, I may not be able to work but I can make beautiful pieces of stitching for people. She understood. So we talked for a little while about stitching, her coming to the U.S., friends, family and lots of stuff. She gave me her phone number and took mine. She said she will call me in a couple of days, after she gets the patterns together. Her husband asked for directions to my house and we talked about being transplanted Yankees living in the south (He is from Maine and I am originally from Mass.) They were great people and I really enjoyed talking with them. I am hoping this is the start of a friendship.

I am hurting pretty good after the poking and prodding, but I wanted to share this story before taking a nap. :)

Busy Day

2010-06-10T00:59:00.000-05:00

I realize it is Thursday June 10th but I am going to write about Wednesday Jun 9th.

I had a fairly busy day today. I did a spot of yard work because someone on my street turned us in to the city for our yard being overgrown. The code enforcer guy showed up yesterday and took pictures. He then told me that we needed to clean up the yard including any and all overgrowth. My yard did not look like a jungle or anything and we had raked the front yard for leaves a couple weeks ago, but those dang trees just kept dropping leaves so the front yard doesn't look like we raked much at all. So now we have until June 22nd to get the entire yard cleaned up. This is not going to be easy as Ron (DH) will be gone all next week at a symposium for his job, Stephanie (DSIL) just had surgery removing her gall bladder, I have a broken pelvis, and Brian (my brother) has issues with his legs that cause a great deal of pain. The only one in the house who is healthy enough to do yard work is my son who just turned 14.

So we are doing a little bit every day. Already we have a very large pile of branches. vines etc sitting at the edge of our front lawn. We have to pile the stuff at the edge of the front of the house for a truck (with an automatic scooper on it) to come by every couple of weeks and pick it up. It can't be in bags or anything, just piled there where it can easily be distributed all over the yard by wind. Ron went to pull out the lawnmower (we don't have much grass, but we do have weeds and the easiest way to remove those is to mow) and mow down the weeds, vines and such that are growing, but of course the stupid thing doesn't work. He did everything he knew how to do (replace spark plugs etc.) but it still won't work, so we have to buy a new one. In the meantime Kyle (DS) and I worked on cutting back some of the overgrown bushes. Ron asked me to stop when my pain hit a 6 and I did. I did get most of this really ugly palm type plant next to the air conditioner unit all cut down.

When Ron got home from work he started doing some work with Kyle and Brian (DB). It is looking better. I don't see us having a problem getting it cleaned up by the 22nd. However, this whole thing really annoys me. Whoever it was that turned our yard in to the city as in violation could have just come to us and told us they would like it if we did some work. (We did some a few weeks ago, I posted about it I think) Or even bothered to ask why our yard was overgrown. Apparently whoever it was never bothered to consider that we may have some kind of issue that makes keeping the yard looking perfect difficult for us. Nope, instead they called the city to get us in trouble. I would love to have a yard with thick green grass, pretty flower beds and always have it neat and tidy. And its not like it was badly overgrown or filled with trash. Sadly we don't have much grass, most of what grows in our yards are weeds, one of which is a vine of some sort that grows over the ground until it reaches the wall or the back deck, then it grows up those things. Oh well, we'll get it done.

Anyway, I stopped when my pain hit a 6 and of course the rest of the muscles in my body are sore because they aren't used to me trimming hedges with manual clippers. But I am proud of myself because I took care of the palm type plant and got it cut down (it will grow back, the root bulb is too big to remove) without going in to a pain crisis.

I also cooked dinner tonight. So today was a productive day. Of course my pain went up, but it was not real bad most likely because I stopped at a 6 instead of a 7. With my back and pelvis sometimes if I stop at a 7 the pain continues to rise after I sit down and relax. Often I go from that 7 to a 9 in a matter of seconds. So Ron told me to stop at a 6, in the hopes that once I sat down and relaxed, it wouldn't shoot up to a 9. It didn't. It shot to an 8, but came back down to a 7 once I took my meds. I'm still at a 7 now. So I'm guessing my new limit for doing things is a 6. This sucks because there are many days where I wake up at a 5 and getting to a 6 only requires walking to the bathroom. LOL

Stephanie had her gallbladder out on Tuesday and came home the same afternoon. They did arthroscopic surgery, rather than a standard incision on her abdomen. She has 4 1 inch incisions that were glued rather than stitched or stapled. She is hurting but nowhere the same amount of pain she had after her c-section. Arthroscopic surgery is less-invasive and seems to make it easier on the patient. We are making her take it easy, not that it is difficult, she is good about following doctor's orders. I am hoping this takes care of the pain she was feeling from the gallstones she had, since they are now gone.

Well that is pretty much it for me. Thank you all for reading and leaving comments. Your comments brighten up my days and mean a lot to me! I hope you are having a good day!

Rain rain go away...come again another day

2010-06-05T21:54:00.000-05:00

We've had some thundershowers move through off and on today and as usual this increases my pain level. Both joints are swollen which really sucks. Of course this happens during my period, which raises my pain level anymore. But I keep noticing how different the pain is since my intense depression has gotten so much better. Even when I hurt a lot, I don't feel the need to curl up and hide, or lay in bed and cry. I seem better able to deal with the pain I do feel, and the pain seems lower even without the radio frequency. I expected some improvement, but not this much. I am amazed. I know I keep repeating myself but I just can't help it. Every day it hits me again, specially on days like today when my pain has hovered around a 7 and 8 all day, that I am dealing so much better with the pain.

I've continued doing chores around the house, which is nice. Tomorrow will be a fun day. It is my DS's 14th birthday. Where did 14 years go? Wasn't he just a tiny baby yesterday? He has turned into quite a handsome young man and I am so very proud of him. He wants to go to the roller skating rink for his birthday. So we will probably do that for him.

I did some stitching today, working on that card. It is now over half done. Well that is it for me so far :)

I hope your weekend is going well.

Another Painful Night

2010-06-03T02:38:00.000-05:00

Tonight is not a good night for me. As usual my period has increased my pain and even though I have spent the last 45 minutes laying in the dark trying to sleep, I just can't. The pain is keeping me awake. I wish it wasn't because I want to sleep, I am tired. Oh well.

So far this week has been pretty good. I've been able to do household chores every day, which makes me feel good. I've also been able to stitch every day, which is really nice, especially since I am once again enjoying the process of stitching as much as I used to. It really is nice to have my emotions back and my ability to enjoy things as well.

I packed up all my old D&D (Dungeons and Dragons) books, box sets, maps, and everything. My friend came today to pick them up. Since I do not play D&D anymore and I needed the shelf space, I decided it was time to get rid of all my gaming stuff. Since my friend still plays regularly, I offered them all to him. He lived with us for a few years but he moved out 18 months or so ago. So when he came over today to pick up the boxes of stuff we got to talking. Poor guy ended up staying for 3 hours (or maybe 4, not sure which) but he seemed to enjoy the conversation. We talked about the campaign he is currently playing in and some of the funny things his character has done. We talked about his apartment, old games I used to run (as the dungeon master, the one who writes or sets up a prewritten adventure), WOW and lots of other stuff. It was great! I really enjoyed the visit, it was a blast. Though I think I talked his ears off. LOL

On old friend of mine sent me an email today that made me laugh. It is a list of jokes that only people from the Boston area of MA would completely understand. I got all but 3 of them and found myself nodding while I was laughing because so much of it is very true, hysterical but true. For your amusement here is the list. Enjoy!

Any Red Sox World Series win was, and will always be, one of the greatest moments in your life.
The guy driving in front of you is going 70 mph and you're swearing at him for going too slow.
When ordering a tonic, you mean a Coke.
You went to Canobie Lake Park as a kid.
You actually enjoy driving around rotaries.
You do not recognize the letter 'R' as a part of the English language.
Your social security number starts with a zero.
You can actually find your way around the streets of Boston.
You know what a 'regular' coffee is.
You keep an ice scraper in your car year-round.
You can tell the difference between a Revere accent and a Dorchester accent.
Springfield is located 'way out west.'
You almost feel disappointed if someone doesn't flip you the bird when you cut them off or steal their parking space.
You know how to pronounce the names of towns like Worcester, Billerica, Gloucester, Peabody and Haverhill.
Anyone you don't know is a potential idiot until proven otherwise.
Paranoia sets in if you can't see a Dunkin Donuts or CVS Pharmacy within eyeshot at all times.
You have driven to New Hampshire on a Sunday just to buy alcohol.
You know how to pronounce Yastrzemski.
You know there's a trophy at the end of the Bean Pot.
You order iced coffee in January.
You know that the Purple Line will take you anywhere.
You love scorpion bowls.
You know what they sell at a Packie.
Sorry Manny, but number 24 means DEWEY EVANS.
You know what First Night is.
You know at least one guy named Sean, Pat, Whitey, Red, Bud or Seamus. Bonus: You know how to pronounce Seamus.
McLobster=McCrap
You know at least 2 cops in your town because they were your high school drinking buddies.
You know there are 6 New England states, but that Connecticut really doesn't count.
You give incomprehensible directions to tourists, feel bad when they drive off, but then say to yourself ,'Ah, screw them.'
You know at least one bar where you can get something to drink after last call.
You hate the Kennedys, but you vote for them anyway.
You know holding onto the railing when riding the Green Line is not optional.
The numbers '78 and '86 make you cringe.
You think the rest of the country owes you for Thanksgiving and Independence Day. (...and they DO).
You have never actually been to 'Cheers.'
The words ' WICKED' and 'GOOD' go together.
You' ve been to Fenway Park.
You've gone to at least one party at U Mass.
You know what a Frappe is.
You know who Frank Averuch is.
ADVANCED: You know Frank Averuch was once Bozo the Clown
You can complete the following: 'Lynn, Lynn ......'
You get pissed off when a restaurant serves clam chowder, and it turns out to be friggin' Snows.
You actually know how to merge from six lanes of traffic down to one.
The TV weatherman is damn good if he's right 25% of the time.
You never go to Cape Cod,' you go 'down the Cape '.
You think that Roger Clemens and Johnny Damon are more evil than Whitey Bulger.
You know who Whitey Bulger is.
You went to the Swan Boats, House of Seven Gables, or Plymouth Plantation on a field trip in elementary school.
Bobby Orr is loved as much as Larry Bird, Tom Brady, and Ted Williams.
You remember Major Mudd.
You know what candlepin bowling is.
You can drive from the mountains to the ocean all in one day.
You know Scullay Square once stood where Government Center is.
When you were a kid, Rex Trailer was the coolest guy around. Speaking of which.... You can still hum the song from the end of Boom Town
Calling Carrabba's an 'Italian' restaurant is sacrilege.
You still have your old Flexible Flyer somewhere in your parents' attic.
You know that the Mass Pike is some sort of strange weather dividing line.
The only time you've been on the Freedom Trail is when relatives are in town.
The Big Dig tunnel disaster wasn't a surprise.
You call guys you've just met 'Chief' or 'Boss.'
4:15pm and pitch black out means only 3 more shopping days until Christmas.
You know more than one person with the last name Murphy.
You refer to Savin Hill as 'Stab 'n Kill.'
You've never eaten at Durgin Park, but recommend it to tourists.
You can't look at the zip code 02134 without singing it.
You voted for a Republican Mormon as Governor just to screw with the rest of the country.
11 pm? Drunk? It means one thing: Kowloons!
2 am? Drunk? It means one thing: Kelly's Roast Beef! The one on Revere Beach not the one on Route 1.
5 am? Drunk? It means one thing: You wish you had a blanket in your back seat.
You know that P-Town isn't the name of a new rap group.
People you don't like are all 'Bastids.'
You've called something 'wicked pissa' or 'ballsy'.
You'll always get razzed for Dukakis.
Saturday afternoons meant Creature Double Feature with Dale Dorman.
After school or Sunday mornings meant the Three Stooges on Channel 38.
You've slammed on your brakes to deter a tailgater.
No, you don't trust the Gorton's Fisherman.
You think Aerosmith is the greatest rock band of all time.
Your town has at least 6 pizza and roast beef shops.
You know at least three Tony's, one Vinnie and a Frankie.
20 degrees is downright balmy as long as there's no wind- then it gets wicked cold.
You were very sad when saying goodbye to the Boston Garden.
Thanksgiving means family, turkey, High School football, and the long version of Alice's Restaurant.
You know the guy who founded the Boston Pops was named Athah Feedlah.
You know what the Combat Zone is.
You actually drive 45 minutes to New Hampshire to save $5 in sales tax.
You've pulled out of a side street and used your car to block oncoming traffic so you can make a left.
You've been to Hampton Beach on a Saturday night.
Playing street hockey, basketball or football was a daily after school ritual.
Hearing an old lady shout 'Numbah 96 for Sioux City !' means it's time for steak.
You remember Jordan Marsh, Filene's, Grants, Bradlees, Caldor, Zayres, Woolworth's Riche's or Ann & Hope.
You actually get these jokes and pass them on to other friends from Massachusetts.

One Word Meme

2010-05-31T19:10:00.001-05:00

This sounded fun, so I thought I'd do it.

The only rule is:
You.
Can.
Only.
Type.
One.
Word.
No.
Explanations.
Not as easy as you might think…
1. Yourself: hurting
2. Your boyfriend/girlfriend husband: playing
3. Your hair: upswept
4. Your mother: wonderful
5. Your dog: n/a (no dog)
5a: Your Cat: outside
6. Your favourite item: stitching
7. Your dream last night: scary
8. Your favourite drink: water
9. Your dream car: Mustang
10. The room you are in: Living room
12. Your fear: alone
13. What you want to be in 10 years: Healthy
14. Who you hung out with last night: DH
15. What you’re not: uncaring
16. Muffin: blueberry
17. One of your wish list items: fabrics
18. Time: evening
19. The last thing you did: ate
20. What you are wearing: pajamas
21. Your favourite weather: Autumn
22. Your favourite book: It
23. The last thing you ate: sandwich
24. Your life: Good
25. Your mood: down
26. Your best friend(S): wonderful
27. What are you thinking about right now? pain
28. Your car: Mustang!
29. What are you doing at the moment?: Blogging
30. Your summer: hot
31. Your relationship status: Married
32. What is on your TV?: Elmo
33. What is the weather like?: overcast
34. When is the last time you laughed?: today

Another Week Gone

2010-05-28T19:15:00.000-05:00

Well here it is Friday the 28th of May. I can't believe May is almost over already! It seems like yesterday was May 1st. Damn I am getting old. LOL

I've done pretty good this week about doing chores around the house. I've done laundry, washed a couple floors, vacuumed, emptied trash, cleaned the bathroom and a few other chores. I am proud of myself for doing them. They did, of course, increase my pain level but I didn't care. Everything increases my pain level and doing nothing in the hopes of not increasing my pain is not a good thing. It just isn't healthy and leads to me thinking badly about myself. My back and pelvis are what they are and there isn't anything I can do about it. It is time to start getting on with my life and the things I enjoy. Keeping my house fairly organized, clean, and bills all paid is something I prefer to do. I can't say I really enjoy doing it because housework isn't all that fun, but I do feel proud and satisfied when it is done. I can relax easier in a house where I don't see a hundred things that need to be done every time I look around.

Today was a focus on laundry day and I have gotten a bunch of loads done. Then I made DS bring his dirty clothes to the laundry room, which of course makes it look like I did no laundry at all LOL

DH took the day off so he would have a 4 day weekend. It was nice to have him home today. We did some cuddling and talking. Last night we had a great conversation and lots of laughs about Terry Pratchett books. He has wanted me to read them for years. I had tried a few years back but just didn't enjoy them. However, I tried again this past week. I read Reaper Man first and found myself laughing out loud at parts of it. Reading parts out loud to DH (like he does to me) so we could laugh together. I really enjoyed the book. I finished it in 2 days and started another. I am enjoying this one as well. This made me wonder if it was the depression that kept me from enjoying the books? It probably was since I mostly stuck to re-reading old books (usually Stephen King) most of the time. Books that are old friends, instead of being open to new authors. I have always loved reading and was always willing to try a new author. But I realize that for the last few years that just wasn't true anymore. Amazing how much of a person's life depression eats.

I am so grateful for the return of my enjoyment in writing, thinking, and reading the way I used to. I feel more like myself than I have in a long time.

Acceptance, Rage, Grief and Mental Maelstroms

2010-05-24T13:14:00.000-05:00

My mind is running in circles (in a good way), something it has not done in at least 3 years I think. I used to be very introspective, thoughtful, insightful and all that stuff. My mind used to run constantly, causing me to write long rambling journal entries that just followed those thoughts, asking and answering questions while I delved deep inside myself to figure things out. Many times those thought marathons and diarrhea of the pen were focused on others; my children, my spouse, friends, and people in general. I loved it. From those times came many essays about many different topics and those essays would help others understand a topic better or see it from a different point of view and thus understand it even if they didn't agree with it.

I could fill one of these in 3 to 6 months or less
hence the hundred or so I have for a 12 yr period of time.

I have written some essays recently, but none of them were preceded by that whirling mind thought process of before. Before what you ask? Before my condition got worse when I re-fractured the already broken joint and caused more damage thus more pain. Which in turn, caused decreased mobility and serious grief and rage. Grief for what amounts to the death of who I used to be and couldn't be anymore. Rage for the accident, my increased pain, unfairness of it all, at the person and situation that caused the accident, rage for the fact that the injury did not have to happen at all, and more.

I have realized that I turned my mind off and stopped being who I really am. I shut down a little and have refused to accept what happened and its results. Instead, my mind has focused more on what I can not do anymore, what I have missed out on (like teaching my son to ride a bike), and how much I hurt. This, of course, was made worse by depression.

This whole thought process was started by asking Ron a simple question "Do you think I have accepted my condition?" and his answer was "no".

He is right.

So now comes trying to stop the anger and self-defeating habits (both behavioral and mental) that have become my "norm".

I get very tired of constantly having to put myself back together again. This will be the 5th time (I think) in my life. At least this time I am not completely gone, just a little scattered.

But You Don't Look Sick

2010-05-19T21:02:00.005-05:00

Here is one of the 4 essays I mentioned in my last post. I did the rewrite tonight.

But You Don’t Look Sick
M. Hull © May 19, 2010

Chronic Pain (CP) patients hear a lot of things from other people. These statements run the gamut from slightly annoying to downright hurtful to dismissive to humiliating to derogatory and everything in between. There are two such statements that seem to be pet peeves for most CP patients. They are “Anyone who takes pain medication regularly is really a drug addict” (there are many variations on this theme) and “But you don’t look sick/in pain” is the second one. Is there an official face, costume, clothing or body language for people who are sick or in pain? No there is not, yet people insist on judging our condition and pain levels by the way we look. Just because you can’t see it does not mean it is not there. Though there are not any universal appearances for CP patients, there are signals people can see if they’d bother to actually look for them. CP patients often try to hide their pain for self-protection, but there are clues.

“The eyes are the windows to the soul” is a saying we have all heard. In a CP patient, the eyes are often a window to seeing how bad the pain is at any time. Sadness, frustration, anger, weariness, wariness, and other emotions can be recognized in the eyes. If it is someone you have known for some time, reading their eyes will be a bit easier for you. But for those who don’t know, some cp patients will widen their eyes when they get a sudden sharp pain or a sharp increase in pain level. The pupils will dilate in some people. Also a cp patient will often close their eyes for a couple moments as they mentally prepare to deal with an increase in their pain (often accompanied by slower deliberate breathing). Many of us have signs of being tired such as bags or shadows under our eyes all the time. Those bags or shadows can appear larger or darker during tough times or flares. This is caused by a lack of restful sleep due to pain. Sometimes our eyes will be red and or swollen from crying because the pain was just too much and caused us to cry (pain crisis). Some try to cover these signs with makeup, causing the amount of makeup itself to become a sign of how they are feeling. For example, if a friend suffers from CP, but doesn’t usually wear a lot of makeup, shows up with concealer or foundation under their eyes, it is most likely to cover up the physical results of pain induced insomnia or crying and thus a clue to their pain level. Our medications or unshed tears can often make our eyes appear glassy or dull, which also serves as a clue.

A CP patient's breathing can also be a very obvious signal of their pain level. Many of us try different breathing techniques to try and control our pain. Long slow breaths in through the nose then blown out through the mouth are just one technique. Many CP patients will automatically start doing these breathing exercises when their pain reaches a certain level, or we are hit with a sudden unexpected burst of pain or increase in pain level. Another is when the patient starts paying attention to their breathing and deliberately takes deep breaths, releasing them slowly (sometimes with eyes closed).

A person’s face shows multitudes of emotions with both obvious and subtle changes. A big happy smile is an obvious indicator that a person is happy or in a good mood. For CP patients our faces also give clues to how much we hurt. In response to pain some will press their lips together (the tighter the pressing, the higher the pain), draw their eyebrows together causing wrinkles to appear between them, close their eyes and focus on breathing, frown, or other signs. For some the more pronounced those wrinkles are, the more they hurt. Some will clench their jaw tightly and possibly grind their teeth, again how tightly they clench or intensely they grind their teeth serves as a signal of how much they hurt.

How a CP pt moves also belies their pain levels. The higher our pain levels, the more carefully we move. Depending on what injury or disease causes the pain you can notice limping, taking stairs one at a time (with both feet on same step, like a toddler), using the non-dominant hand, trembling, twitching or jerking of the affected limb or torso. The person may start flexing their fingers or stretching/shaking an arm or leg to relieve pressure, numbness, or pins & needles sensations that come with nerve damage. People with back issues will often try hard to not slouch or bend over, sitting or carrying themselves as straight as possible and doing their best to not bend their backs at all. People with knee injuries will sometimes walk without bending their knees, lean against a wall rather than sit down or other things that will keep them from bending the painful joint. A CP patient may start holding or rubbing a painful spot, sometimes without being aware of it. A CP patient who is in a high level of pain will find a comfortable (or as comfortable as possible) place to sit and stay there; only getting up if they absolutely must. Many, when sitting, will shift positions frequently trying to ease some of the pain. How a CP pt greets you or says good-bye will change depending on their level of pain. Someone who usually hugs you in greetings or farewell, won’t hug the same way, if at all, when their pain is real high. They may not stand up for an introduction or to say hello when you arrive. Movement often increases pain so when their pain levels are high, the CP patient moves around less often. There are many other clues through body language if one bothers to look for them, they can be found.

The tones in a CP patient’s voice often change with their pain level. Some may talk louder, others talk softer. Their voice may become more tense or hesitant. Some may even snap at you without realizing it. They often get an undertone when they speak that can reveal their pain level or anxiety.

Even the clothing a CP patient wears can give clues to their pain level. CP patients tend to wear clothing that will be the least restrictive, apply the least pressure to their body, and have the least impact upon their pain levels. Most often they are items that are easy to put on and to get off and do not apply pressure to the parts of our bodies that hurt. We often wear low heeled or flat comfortable shoes that will properly support our feet. When at home we may stay in our pajamas because they are usually the most non-restrictive and comfortable clothing we own.

Most of us try our hardest to hide our pain levels from others, but our bodies give us away. If you have a friend or relative who suffers from CP you can learn to interpret their signals and thus realize how much they are hurting. The signs I mention within this essay are only a few and meant to give a general idea of things to look for, thus disproving the “you don’t look sick” statement. Each person is different, so each person’s signals will be different. I tried to include fairly common signs. If you pay attention and take the time to learn the tel- tale signs of the pain your loved one is feeling, you will be in a better position to help or support this person. It means a lot to a cp patient to have someone say something like “your pain is really bad right now, what can I do to help?”. By taking the time to learn the signals you are showing your friend or family member how much you care.

CP patients may not look as badly as we feel sometimes, but to dismiss us with such a statement as “But you don’t look sick” is unnecessarily cruel; especially since the signs that show how much we hurt are actually there. Just because our conditions are not as obvious as a cast, wound, crutches or wheelchair, does not mean that our pain is not there. Diabetes, cancer, Alzheimers, chronic pain and more are all conditions which do not always have obvious appearance related symptoms, but that in no way changes the fact that the person is suffering.

We have all heard “Don’t judge a book by its cover” at some point in our lives. It certainly applies to CP patients; do not assume that just because we do not overtly show our pain that we are not hurting. Having a friend or loved one dismiss our pain hurts more than the pain ever could. Sadly many people who respond with the “you don’t look sick” statement either have not paid attention to the signs, or just don’t care enough to see it. I find it sad that any person can so easily dismiss the suffering of another human being this way.

A Few Decent Days and WRITING YAY!!

2010-05-18T21:23:00.000-05:00

The last few days have been pretty good. I recovered fairly well from the travel and did not have a pain crisis when we got home, which was nice. I've focused on trying not to do too much, while still doing a couple things a day. So laundry has been done daily, I cleaned the bedroom on Sunday, cooked a great dinner (new recipe) last night (which everyone liked) and today was a restful day.

I have 4 essays now that need their final re-writes before publishing. I was amazed to be hit with the *NEED* to write again so quickly and wrote two more. They all focus on some aspect of living with chronic pain and depression, which seems to be what my mind is wanting to focus on.

I added a blogoversary counter to both my blogs, but its counting is off. My stitching blog was started on Oct 17 2007 and got a 133 day countdown (yesterday). This blog was started Oct 19, 2009 and got the same 133 day countdown when it should be 135. I've left it for now because the code is correct (the date is embedded in the code) but for whatever reason it is counting wrong. Oh well, such goes life I suppose. LOL

Ron and I were talking the other night about how much of a difference this anti-depressant has made vs. how I responded on Zoloft. I re-read my stitching blog and there were quite a few entries talking about my depression and that they started me on Zoloft. There were a few happy posts about feeling better, but there were weeks or months between posts, and more posts about depression with 2009 being the worst. The difference is quite visible to me after looking back. Ron and I are once again cuddling more often (with me initiating it), talking and laughing together a lot more, just generally enjoying being with each other a lot more, the way we did the first few years I was here. I honestly did not realize that the Zoloft wasn't working as well as it should have. I try not to spend too much time playing "what if" about it and just enjoy the fact that I do feel ever so much better! I still have days where I'm a bit down or don't feel like doing much, but there are many more good days than bad ones now, which is just wonderful!

Well that is it for me. Talk to you all soon!

Home and Thoughtful

2010-05-12T01:40:00.000-05:00

Well we made it home. Being with family was great, getting to see my daughter and her apartment was also great. Meeting her BF's parents was great. Having a wonderful meal with them was also great. But all the travel sucked!

First, the drive from where I live to Indiana where my in-laws live usually takes 13 to 14 hours. Thanks to severe pain and a line or tornadoes, we had to stop in Decatur Alabama the first night. I had spent the day before we left packing up my daughter's stuff to take to her, and my back and pelvis were not happy, so I was not surprised we had to stop. My pain level maxed out at the same time my FIL called the cell phone to warn us about severe thunderstorms, heavy rain, and tornadoes just north of us in TN. So we stopped. The next day was Sunday and we only made it about 2 hours. Just as we reached Nashville, between two sets of nasty storms, they closed all the highways that go through Nashville. ARGH! Now we had to find a hotel room. We managed to get one of the last 4 rooms at the second hotel we stopped at (the first was full and we had passed two that had no power so we didn't stop to see if they had rooms) and spent the rest of the day sitting in that room. DH and DS occasionally helping one of the employees sweep water away from the door to our room to try and minimize flooding. It must have worked because the carpet was only wet at the door and about 3 feet into the room. Day 3 we wake up to find out they have re-opened I-65 North, but many of the roads going there are still closed, yet we find a way and get going. On our way out of Nashville we got to see some of the areas that were severely flooded. It was pretty bad. So a normally long, yet not too bad, trip took us 3 days. I was in a lot of pain but it wasn't as bad as I feared, probably because of the longer stop in Nashville where I spent most of that stop sitting or lying in bed reading, thus resting.

Seeing the family was great. By Thursday I was feeling pretty much my normal self. Just in time to get back in the car for an additional 6 hour trip to Wisconsin to see my DD and her OH. My back was not happy with me for getting back in the car so soon, but I stuck it out. I managed to go to dinner and then the book store.

DD"s OH's parents are wonderful! I really liked them a lot! His mom and I talked all through dinner about all kinds of things. She is just so very sweet! Sam seems so very happy as well, which made me feel good. I was very glad that I pushed it a bit and went to dinner anyway. I look forward to spending time with them again in the future.

Friday morning we got back into the car for the 6 hour ride back to Indiana. That ride was too much and by the time we arrived I was in a full blown pain crisis. As soon as we got back to the house I had to limp straight to bed. I curled up on my side a pillow between my knees, left leg occasionally kicking or twitching, severe pain shooting through my lower back and buttocks and down both legs, the muscles in my left buttock and thigh doing the cha-cha with each other, (with the left being a bit worse than the right, as usual) and an ice pack stuck to the broken joint. I laid there crying for about an hour before I could make it stop.

On top of the pain were the usual roiling emotions that come with a pain crisis. I was scared, guilt-ridden, and terrified. Scared because I hurt so much. Guilt-ridden because I could hear everyone sitting at the table talking and sometimes laughing, but I couldn't participate. I was afraid people would be angry with me, specially if they knew I was crying. I was terrified because I knew that we were getting back in the car the next afternoon to head home again. I felt guilty that I could not sit with them and provide comfort to those I love during the days immediately following my DH's aunt's death on Wednesday morning. I tried hard not to give into those severely undermining thoughts that always hit during a pain crisis. The thoughts that I am weak because I can't just "grin and bear" the pain. That I make everyone's lives harder by being disabled and always in pain. And other thoughts in a similar vein. I felt so alone and angry at my own body for failing me yet again. I really hate it when my pain puts me in bed like that.

Saturday morning I woke up feeling a bit better. Still hurting more than usual, but no longer in crisis stage. DH and I took a nap that afternoon in preparation to drive home to Florida. We left about 6:30PM Indiana time. DH and I discussed how to help me through the trip and we decided to try something. We stopped at a liquor store and he bought a few of those tiny bottles of Crown Royal. Something I had not drunk before, but he assured me had a very mild taste. I can't handle strong alcoholic tasting drinks. With the bottles being small, they could be discarded right after using them so there'd be no "open container" in the car. Since I wasn't driving, DH couldn't get in trouble. So I drove for about 4 hours and then we switched. I drank some Sprite and Crown Royal, then laid my seat back and curled up on a pillow on my right side to take all the weight and pressure off the broken joint on the left side. I spent a lot of the ride that way. It worked. We had a flat tire when we were about 3 hours from home and it took a couple hours before we were back on the road. I slept for some of that time, waking up just as we were real close to home. I managed to keep myself out of a pain crisis, though I am still in higher pain than usual.

I figure it will take me a couple more days to return to normal. I certainly do not want to repeat that kind of travel again real soon!

I continue to read blogs written by other people with chronic illness or chronic pain. Many of them talk about accepting their restrictions and learning to do as much as they can despite them. They talk about having hope, learning from their experiences, and feeling an inner peace that was not always there before they got sick. I can relate to a certain point, but now I find myself wondering if I have fully accepted my own condition. I don't think I have accepted it since it worsened a few years ago when I re-fractured the joint by falling on a marble topped end-table. I find myself struggling with anger, resentment, and thinking alot of things I can't do anymore. Then my mind throws at me the things I do manage to accomplish despite the pain and I think, maybe I have accepted it and am doing better than I realized. It is very confusing. Right now, I find myself with whirling thoughts going back and forth on this issue. I wish I could say that I have that inner peace, hope, etc., but I don't feel it so I can't say if they are there or not.

Though, one good thing has occurred over the past week or so. I write, but writing became very difficult for me for a long time. It used to be that an idea would come to me and an essay, story, or poem would pop into my head, almost completely written and very insistently demanding that I find paper and write it down RIGHT NOW. I love that feeling! It has been a long time since it has hit me with the same strong intensity that it used to, and when it did hit it fizzled out quickly, usually before the item was completely written. Like the thoughts just vanished. Well, twice during our trip (once in Indiana, and once on ride to Wisconsin) that need to write hit and it hit me real hard! I wrote two essays with that same quick almost feverish intensity that I remembered so well. Ohman did that feel wonderful! One was inspired by a sentence I read in Stephen King's book The Stand about anger and resentment, and the other just showed up while we were traveling to Wisconsin. I look forward to cleaning them up and completing them soon. When they are done I will post them.

Well that was pretty much my week. I am home now and I have been taking it easy trying to get my pain back to its normal levels. Once I do, I should be able to play catch-up with the blog entries I have missed reading and stuff like that.

Thank you all so very much for your support and condolences. My DH also thanks you. He was very touched by everyone's thoughts and concern for him and the family.

See you all later!

In Indiana

2010-05-04T20:15:00.002-05:00

We made it to Indiana. It was a rough trip thanks to the weather in TN. We ended up having to spend a night in AL and another in Nashville because as soon as we got half way through Nashville they closed all the major highways and lesser highways and we couldn't get through. So we spent the night. We arrived yesterday. DH's aunt is still hanging in. We went to visit this evening and it was so very sad. It reminded me a great deal of when my oldest brother passed away. He was comatose for over 2 weeks before he passed, with everyone sitting around him in the room. We had been told that she would not make it through the night, but she has. From everything I have heard she is a very strong person. I wish I had been able to get to know her.

I should be home on Sunday.

A death in the family

2010-04-30T09:39:00.000-05:00

I just wanted to drop a quick note and let everyone know that I will be away for the next week or so. My DH's aunt passed away and we are going to attend the funeral in Indiana. We will be leaving tomorrow morning and driving there.

We will also be bringing my DD's belongings with us to drop off in Wisconsin (6 hours from my FIL's house) for her. Today is going to be a busy day getting everything all packed. We were planning on going to Indiana to visit family and bring DD's stuff to her next month anyway, this just pushed it up a couple weeks.

If I can manage to get online while we are in Indiana, I will try to post a quick hello, but I can't promise. I will, of course, be bringing my stitching with me and I might even get some done, who knows. LOL

See you next week!

Not surprised and Busy Day!

2010-04-23T14:45:00.002-05:00

I thought this was hilarious. I know I have an odd name and it is very rare. I've never been able to find anything with my name already on it. You know like cups, pencils, key chains or stuff like that. Occasionally I can find my nickname, but not my real first name. I came across a link to "How many of me" are there and out of curiosity I clicked the link and put my name in. Apparently there is only 1 person in the USA that has my full name (first and last) and I'll bet that single person is myself. LOL There are supposedly 1545 or so who have my first name, and 47,728 who have my last name. I found it very funny that there is no one else in the USA with my full name. I wasn't surprised either as I am quite used to having an unusual name LOL

HowManyOfMe.com

There are

or fewer people with my name in the U.S.A.

How many have your name?

I'm still giggling over this. LOL

Well today has been a busy day. Right now my pain is at a 9 and I will be taking a nap after I finish this entry. Lets see I did lots of laundry, washed , dried, folded and put away. This included 3 blankets (2 queen size and 1 twin size), 1 lap blanket, and 6 sheets (5 queen size, 1 twin and 1 crib size). I emptied all the small trash baskets and replaced their bags (wal-mart bags come in handy for these LOL) and Bridgette insisted on helping me carry the larger bag I dumped them all into around to each trash can then out to the trash can outside. I took in all of Bridgette's new pants, shorts, skirts etc as we had to buy size 4T for her height, yet she is so skinny she fits in a 3T. So I took all the bottoms in a little bit. I went over all my son's math work and found that he hadn't done the things he told me he had done, so today has been a math marathon for him to make him do everything he skipped. I did some picking up in the kitchen and my bedroom.

A few days ago I went back on the cross stitch forum that I loved so much. When my depression got really bad after my adopted father's funeral last summer, I withdrew from everything. No boards, email lists, or blog entries. Now that I have been doing so well in keeping up with my email lists, facebook and blogs I decided it was time to add that posting board back in. I really like the people on the board, they are so friendly, supportive and just wonderful. I was a bit nervous as to how they would react to my having been gone for so long, but no one seemed angry. Instead they were all very warm and happy to see me back again! They were very understanding of my depression and how it affected me. I am really glad!

Ok time to go lay down, sitting here hurts too much.

Screw The Pain

2010-04-14T18:52:00.000-05:00

Today I decided to say "F*** the pain!" and do some chores anyway. I emptied trash (bathroom, laundry room, kitchen, and bedroom), cleaned the litter boxes (6 cats dontcha know LOL), put away a box of my biological mother's journals, cleared a shelf in the hallway closet and put our extra blankets on them to get them out of the laundry room, picked up the books off the floor on my side of the bed and took a one hour nap. I still feel really tired, which is not surprising since I haven't been sleeping well. I keep waking up every hour or two, then I'm up for anywhere from 15 minutes to an hour before going back to sleep only to wake up an hour or two later. I've been doing this every night for the past couple of weeks. It is really getting annoying and causing me to feel tired all the time. Eventually I will hit a point where I sleep for 8 or more hours from pure exhaustion. I'm just hoping that when that finally happens, it will happen at night. In an attempt to try to make it happen at night (instead of during the day) and thus help straighten out my sleeping schedule, I am refusing to lay down even though I am sleepy. When I finish this entry I'm going to go work on the Christmas Dreams cross stitch. Because it is on 14 count Aida fabric, with large blocks of one color, it is easier to stitch when I am tired, hurting, or both (like tonight).

Right now my pain is at a 7 with sciatica going down my left leg, deep throbbing in the broken joint and a sharp pain at the top of the joint on both sides and my lower back. But my mood is real good, which is nice. I got some stuff done today, including taking my son a doctor appointment. Having that feeling of accomplishment (no matter how minor the tasks were) feels great and I am enjoying it.

Ron and I have been doing something daily that we don't do often. Not the he doesn't want to do it often, but I usually don't because of what I went through when I lived in Arizona. I used to love to cuddle up, laying my head on my partner's shoulder and just cuddle. I used to love to fall asleep that way, though I couldn't stay asleep that way for long because it gets too warm. But I learned to not want to cuddle like that anymore after being repeatedly told that it was smothering, overly needy etc. So I've been working on trying not to smother that desire and to act on it when it shows up. As time has gone on the desire to cuddle like that shows up more often and I no longer worry that Ron will resent it or me which is really nice. So we've been cuddling a lot the last few days and it just feels wonderful! Last night we were cuddling and I fell asleep. Sadly I was on my left side, which is not a good way for me to lay down and is partly why the SI joint hurts so much today. So tonight he will lay on my side of the bed so I can cuddle up while laying on my right side and I am really looking forward to it!

Ron brought home watermelon so we've all been eating it. Bridgette loves to sit on my lap and help me eat my fruit (fwoot as she says it lol). She will eat a piece herself, then spear me one with the fork and feed me. She'll even tell me I'm doing a good job and that it is yummy for my tummy, basically repeating what we say to her. It is so very cute and so very sweet!

Well that's it for my day, so I'm going to go stitch for a bit. See you all later!

Laughter is the best medicine

2010-04-10T21:14:00.001-05:00

My back pain has continued to be pretty high these past two weeks and the cold (or whatever it is) has returned. I woke up this morning with a lot of back pain to find that my ears were blocked again, my sinuses are congested and I just feel achy all over.

Yesterday I did dishes and then lay down to take a nap. I was hurting when I finished the dishes and figured I would sleep for only an hour or two. It was 2:30pm when I lay down. I was very shocked when I woke up to find out it was 11:30pm! Ron said he tried to wake me up but I kept asking him to let me sleep, so he did. He figured I needed the rest because I had been struggling with insomnia for the last two weeks. Between being sick and increased back pain my sleeping schedule was all screwed up. Since I woke up at 11:30pm I figured I would be up all night, but by 4AM I was ready to go back to sleep, which I did and I slept until 11 AM or so. Thanks to the cold coming back I spent most of the day feeling sleepy despite all the sleep I had gotten.

The last two weeks have also seen a comeback of my depression. I know it was mostly because my pain is higher than usual and I was sick on top of it, so I couldn't get much done. I recognized that I was feeling down and apathetic again pretty quickly. I see that as a good thing because the quicker I recognize it, the quicker I can do something about it. It was because of my recognizing my down mood that I made myself do the dishes yesterday, take a shower today, stitch today, and do some general picking up around the house. I also focused on playing with my niece, son and sister-in-law. We all sat on the living room floor and played with Bridgette's new ball (it is a very large blue ball). I remembered an old game from when I was a kid and started singing "The magic ball, goes round and round etc. etc." and turned a simple game of catch into a game of magic ball. Bridgette loves music and she had a blast. After that we did the hokey pokey, the chicken dance, and played London Bridge and duck duck goose. The four of us were laughing the whole time and just having a blast! It was a lot of fun! I had to stop after duck duck goose as my back was really unhappy, but I don't care about the pain. The shower, stitching by myself, stitching with Bridgette, then playing games with Bridgette, Kyle, and Stephanie were all very much worth the increase in pain. I feel more emotionally and mentally awake and happy than I have for the last 2 weeks. Feeling this way is definitely worth my pain being at a 9. While we were playing and laughing I didn't notice the pain as much either. Laughter really is the best medicine! It can lift your mood, brighten the whole day, and decrease pain by releasing endorphins and adrenaline into the blood stream.

Depression is difficult because even with the medication's help, I still need to consciously fight it. I have to repeatedly pull myself out of the "blah" hole I find myself in occasionally. The Pristiq is still helping me a great deal, but like chronic pain, depression has its ups and downs. With the medicine though, it is easier for me to pull myself out of a funk. It is also easier for me to notice those times when I get down.

Most of what was going through my head was how many things I used to do on a regular basis, that I can no longer do. These thoughts start a vicious cycle in my head that causes me to feel overwhelmed, useless, and erases my desire to do anything at all. I really hate having to constantly fight depression and pain just to function on a daily basis. It gets frustrating. But I will continue to fight it because if I don't, then I will have let myself down and let the pain & depression win. They are not allowed to win!

I may not be able to do as many things as I used to do, but that doesn't mean I am useless, worthless, or anything like that. I am still me. I am still a good person and there are a lot of things in my life that are good. To let the two bad things take over would be unfair to myself and those who love me. So I will keep fighting. I will keep doing my best to live my life the best I can.

Well Bridgette has gone to bed so that means I can go to bed and stitch some more, YAY! Talk to you all later!

Having someone who gets it

2010-04-07T08:12:00.000-05:00

Last night was not a good night with my back. The pain started ramping up around 12:30AM. This caused a sleepless night. After a few hours I left the bedroom (3:30 or so AM) to come read blogs as a way of distracting myself. I am currently (8:08AM) at an 8.

When I find a blog I really like, written by someone who is in a situation that sounds so similar to my own, I end up going back to the first post and reading every post on the blog. In some cases this can take a few days, in others only a couple hours, depending on how old the blog is and how frequently the author posts.

Anyway, while reading I was struggling with nausea due to my breakthrough medications. I piled pillows behind me in my chair to hold the ice pack in just the right spot on my left SI joint and forced myself to focus on every word I was reading. Every time a thought such as "ohgod I hurt" surfaced in my mind, I deliberately forced myself to think of something else like my daughter's smile, my son's sleeping face (for some reason he is asleep on my recliner LOL) or my niece's giggles. Doing this did not stop the pain in any way, but it did keep me from focusing on it which does help control it somewhat.

I kept reading and purposely distracting my mind as needed for the last 4 hours. I heard my husband Ron's alarm go off, then him moving around the bedroom getting ready to go to work. He opened the bedroom door (which is right beside my computer desk) took one look at me and told me to not worry about housework or chores today, to just rest and take it easy.

One look. That was all it took and he gets it. No anger or resentment, just an honest desire to see me feel better. He then gave me a kiss, told me he loved me and left for work.

That one look, followed by full understanding, it is truly priceless for someone who lives with chronic pain.

Is it any wonder that this man means the world to me?

Distraction is a cure?

2010-04-06T16:10:00.002-05:00

I have read many articles online and in print about chronic pain. Some were written by doctors, some by social workers or therapists, some by journalists. I have also read blogs written by people who live with chronic pain. Sooner or later the topic of distraction shows up.

What amazed me was this one article was posted with a title that misrepresented the contents of the article.The title is "The Most Powerful Pain Reliever Revealed". It made it sound like someone had found a cure for chronic pain, yet when you read the article it simply states that distracting yourself cures pain. The example it gave was not one of distraction, it was one of a person in full fight or flight mode, full survival mode complete with a major adrenalin rush. The example was of a woman going back into her burning house to save her cat from death and not noticing that she sustained 2nd and 3rd degree burns while doing so. It used this example as proof that by being distracted one doesn't feel pain. It was a doctor who posted this article. You can find the article and the comments generated here.

The responses to this article ran the gamut from agreeing that distraction works in controlling pain, to anger that anyone could think that such a life and death situation counts as mere distraction.

There were a few things that bothered me when I read this article. First, the title. I agree with the opinions stated that the title was in fact misleading. It is misleading. When I read the title, had I not known better, I may have felt hope that finally something to truly help me had been discovered. I may have felt that finally I might have a chance at leading a more normal and active life with little or no pain. Luckily, I knew that there is no miracle cure for pain so I did not feel those things. What I felt was curiosity and wondered what wonderful so called powerful thing the author would espouse as such a great treatment for pain.

Second, the example provided in the article really bothered me. I agree that the example provided is not one of distraction. It is, in fact, one of a person in full survival mode. Science has shown that when a person is put into a position by a life threatening emergency that their body goes into fight or flight, survival mode. To do this, non-necessary bodily functions shut down such as digestion. The brain sends commands to increase adrenalin and endorphins and these chemicals are released into the blood stream in large quantities. These chemicals cause many different physical responses, but one of them is the inability to feel pain or the dulling of pain so it is easily ignored while the brain is focused on surviving the situation. You can find many examples of people ignoring serious painful injuries while in a situation that could have easily taken their lives. There is a difference between being distracted and being mind-locked into truly surviving when your life is threatened.

Distracting yourself through hobbies or other activities does not cause the body to dump massive amounts of adrenalin and endorphins into the blood stream. It can cause some release of these chemicals, such as during sex, but it rarely happens with fairly sedentary activities such as reading, or other hobbies. Hobbies such as running (marathoners often experience "runner's high", which is a result of such adrenalin and endorphin release into the bloodstream) may cause these chemicals to be released but not many severe chronic pain patients can run or do marathons. They simply hurt too much and the cost of such activities in increased pain is just too high.

Thirdly, the response of the doctor who posted the article to the comments really bothered me as well. The people who posted positive things about how distracting themselves with hobbies can provide some relief of pain were praised as survivors, having heart, being beautiful and other positive things. Whereas the ones responding with anger or disbelief were judged as having "negative thought viruses" and worse. The doctor who posted the article states she has lived with chronic pain for 10 years, at the time the article was posted. I understand that this person has obviously chosen to try to stay as upbeat and positive as she possibly can and that is fine. But to be so derogatory towards those who took offense with the way the article was presented was exclusionary and wrong. To hold those people who commented only with positive things up as "survivors" and beautiful people, to lord them over the ones who were angry at being mislead and then belittled is very wrong in my opinion. Especially from a doctor. Chronic pain patients get mistreated and misunderstood by doctors far too often as it is. We are judged as drug addicts, drug seekers, attention seekers, as having mental illnesses and worse, far more often than we are believed when we describe our pain. For most of us it takes years to get a doctor to listen to us and start exploring possible reasons for our pain. For those who are harder to diagnosis, they often have to see many different doctors over periods of years to finally get one who will seek an answer and then treat them even a little bit. Even after having a diagnosis (or more than one) of a condition that causes severe pain, we are still seen as weak, drug seeking addicts who just want attention and dismissed by many doctors because we can't be easily "cured". To have another doctor, publishing articles that just add another reason to dismiss chronic pain patients as weak minded is, in my opinion, counter productive and wrong.

Many chronic pain patients try very hard to stay on the positive side. To see the little things in their lives that are still good, the things that make it worth getting out of bed every day. But they also have every right to be upset, offended, and angry when an article such as this one is presented as the cure to chronic pain.

Distraction is not a cure, nor does it give the same physical response as a life and death situation. Distraction merely takes the conscious mind and focuses it on something other than the pain your body is feeling. It does not make the pain go away, nor does it really lessen the pain. It just shifts your focus so the pain becomes secondary to whatever you are focusing on, but you still feel the pain. And when the pain gets bad enough, it distracts you from whatever you are doing, it takes over your mind.

I agree that the mind is a wonderful tool that can be utilized to help one control their pain in different ways. Meditation, relaxation techniques, distraction, visualization techniques and more can all be used to help manage pain, but they can not get rid of the pain completely, they are not a cure. To present it as a cure is, in my opinion, wrong and belittling of those of us who live every day with severe pain by making us out to be weak minded, psychologically inferior or somehow less than other people. To teach other doctors (as this article purported to do) that distraction will cure pain or cause a patient not to feel it, is to make being properly treated for pain even more difficult than it already is.

Think about it, you are in severe pain and have been for months. You finally break down and go to the doctor, hoping for some kind of relief, any kind of relief. The doctor then tells you that you merely have to distract yourself with other activities and the pain will go away. How would you feel hearing that? Yet, this is the exact scenario that this article and the presentation (to doctors no less) that it describes is teaching doctors; to cure pain all a patient has to do is distract themselves.

Pain Affecting Life

2010-04-05T10:50:00.000-05:00

I hear it a lot and I see it on every website or blog devoted to chronic pain (no matter what the underlying cause of the pain is): "Don't let the pain rule your life" or "Don't let the pain take over your life". Sometimes my response to that is as follows:

WTF?!?!?! are these people nuts? How can I *NOT* let it rule my life when it does rule my life? It is present every moment of every day, no matter what. The more I move around, the more I hurt PERIOD. OH man and speaking of periods, that time of the month is just excrutiating! Washing dishes puts me in bed for at least a couple hours. Vacuuming the floor in 1 room (without moving furniture to get under or behind it) can put me in bed for at least a couple hours if I can even finish the room. Taking a shower without my trusty shower buddy (chair) takes my life in my hands because my leg gives out without warning now. Cooking a meal can be pure torture with the standing, bending, stirring, lifting, stretching etc. Putting sheets on a bed hurts like hell. Moving laundry hurts like hell. How can something that is affected by every tiny thing I do, as well as my emotions, hormones, thoughts and stress levels, NOT run my life?

It is the pain that decides how many household chores I can do in a day. It is the pain that has decided I can not go grocery shopping, or clothes shopping or run errands in my car. It is the pain that has decided I can not work anymore. It is the pain that decides whether or not I can go on a date with my husband or make love with my husband. It was the pain that decided I can't teach my youngest child, my son, how to ride a bicycle. The pain gets to decide if I can go to his belt ceremonies at Tae Kown Do (I've been to exactly 1 ceremony, with my walker and was in bed the next day). When I am invited somewhere it is the pain that decides whether I can go or not. It is the pain that decides whether I can even get out of bed on any given day!

The pain is the deciding factor in EVERY decision I make and everything I do.

Living with chronic pain. The truth is, the pain does rule your life. It forces you to make adjustments, choices about every day things that normal people take for granted and just "do". It forces you to learn to coexist with it, to do things despite the pain or in many cases in spite of the pain. It becomes a factor in everything you do, think, feel, consider, desire etc. It does rule your life. There is no "not letting it" rule my life.

For me there is only, doing the best I can and hurting like hell at the same time. If that is "not" letting it rule my life then I guess I have succeeded, but considering that pain becomes a major factor in every decision or choice, it sure doesn't feel or even look like the pain doesn't rule my life. It feels and looks (to me anyway) more like the pain does rule my life and occasionally it gives me a break long enough to get something done or I defy it (like a teenager does their parents) and get punished for it later.

But it definitely does rule my life.