The contents of this blog are copyrighted to the author, Missy (unless otherwise noted) and may not be used, reprinted, published or in any way copied without written permission of the author.

The medical information contained in this blog (when it appears) is not intended to provide medical advice of any kind. Any medical topics discussed here are as they pertain to the author and her conditions only. Do not make any changes to your medications, treatments, etc. without speaking to your personal physician first.

Tuesday, December 20, 2011

Weekend Away!

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!

Tuesday, November 29, 2011

I did it

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.

Monday, November 21, 2011

Little Things Really Matter & Finally feeling a bit better

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: 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?

Sunday, November 13, 2011

Pneumonia...a good thing?

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!

Sunday, October 23, 2011

Questions ...questions..questions

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

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

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

I am so tired

Friday, September 2, 2011

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

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:

  1.  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”
  2.  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”
  3.  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
  4. 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
  5. A very negative view of poor people and/or people without medical insurance
  6.  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
  7.  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.

Wednesday, August 24, 2011

This is what my depression looks like

trapped in my mind
looking out at my life
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!

Wednesday, August 17, 2011

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

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)

Sunday, August 14, 2011

Finally some good news

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

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. 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.

Sunday, July 31, 2011

Car Trip and Fear

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.

Saturday, July 9, 2011


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.

Friday, May 6, 2011

30 Years Of Chronic Pain

In pain..hiding from the world

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.


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.

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 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!

Tuesday, April 19, 2011


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. 

Sunday, April 3, 2011

Killing Myself

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 ( 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. 

Monday, March 28, 2011

Day Of Uselessness

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.

Thursday, March 17, 2011

Help Please

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 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 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.

Friday, February 4, 2011


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!

Thursday, January 27, 2011

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

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!

Tuesday at 11:19am · Privacy: · 

    • 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.

      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


      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.

      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.


      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!


      Tuesday at 11:47am · 
    • S****** C**** 
      Dear Mi****** H****l,


      Oh yeah?


      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!!

      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!


      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.

Wednesday at 10:18am · Privacy: · 

    • B***** C*****

      Dear M***** H******,

      BWAHAHAHAHAHAHAHAHAHAHAHAHAHA no. Pelvis was actually late snapping the bones at the joint, count your blessings.

      Don't cross us.

      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.


      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.)

      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.


      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?