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.

Monday, October 26, 2009

The War On Drugs

I agree that we should fight illegal drug trafficking of heroin, cocaine and other drugs. However, the war on drugs focuses more and more on doctors and chronic pain patients. It leaves patients with no access to adequate pain control medication and doctors terrified of going to jail if they write a prescription for pain medication.

Having lived with chronic pain for many years now I have seen first hand how the war on drugs has changed the way doctors have treated me over those years. My current doctor told me that he is now required to follow a set of guidelines created by the DEA regarding writing prescriptions for controlled substances. Where I live a general practitioner is not allowed to write for any controlled substance medications period. Surgeons are only allowed to write for controlled substances in specific amounts, for no more than 3 months time, and not narcotic medications regardless of the surgery performed or the condition of the patient. They are now required to force all patients to undergo mandatory drug tests and there are ways to fail this test that do not conform to how one uses the medication. For example, a patient given a medication on a PRN (AS NEEDED) basis, if that patient comes up on the urine test without any drug in their system they are discharged as a patient under the belief that they sold or gave their medication away. Even if they bring the bottle to show they have all the pills they should have. All because they did what they were told and only took the medication when they really needed it badly, thus not every single day, as they were TOLD to do by the doctor. They then get puished for this.

The DEA guidelines my doctor spoke about leave no room for "as needed" medication, no room for the doctor's opinions. Flat out, everyone is assumed to be a drug addict and these guidelines are set up to label each person that way eventually.

The DEA should NOT be involved in managing patient's care. That is the province of the medical profession and not law enforcement. I am terrified of the day when I will no longer be able to get pain medication at all, and I know that day is coming. I live in severe pain every single day even with medication. I take as little medication as I need to in order to survive, which leaves my pain level higher than it needs to be and leave me unable to do the things I should be doing.

This video caused me to cry because I too have felt just like Mr. Redman. Pain that is not controlled properly, suffering every day, fighting for my rights with the very people whose job it is to HELP patients, and just wanting to die as my rights get taken away by out of control governmental officials with no real boundaries on their "control" such as the Drug Czar. (Wonder how fast the czar's tune would change if it was their spouse, child, or themself that was living with such life destroying pain)

Watch this video, it gives a true view of the effects of the drug war on the medical profession and their patients.

Saturday, October 24, 2009

Emotional and Psychological Responses

Last night I said I would write a little bit about how living with chronic pain has affected me emotionally and psychologically.

I was 24 when I was told that I could not work anymore. At the time I was working as a pharmacy technician in Children's Hospital, Boston. I loved my job and was finishing final preparations to attend Mass. College of Pharmacy to become a pharmacist. My job was so very rewarding to me and made me feel very good about myself. Like most adults I viewed myself in part based on my job and how well I performed at that job. My profession was very much part of who I was and how I saw myself. To have that taken away from me was devestating. I had been raised to be independent, to work and support myself. Suddenly here I was unable to do those things anymore. My self-esteem took a major blow. So I turned to being a good stay at home mother and wife. But I still struggled from time to time with feelings of worthlessness and frustration.

When my condition got worse after my second child, I ended up spending a year mostly bedridden. I had little to no pain control during that time. I could not walk, I could not drive the car or go anywhere and I was in constant pain. When they finally got around to doing the surgery I did well for a few months, until the fusion broke. Being bedridden took away what self-esteem I had been able to build up because I could no longer function as well at my job (what I considered to be my job). Cleaning, running around playing with the kids, running the errands, cooking and everything else were no longer things I could do at all. On top of this I had an infant, my son, to take care of. For months my bedroom had just the bed in it, to make it safe to have the baby in the room with me. His crib, high chair, and toys were all in the room as well. This way I could feed him, play with him a little bit and watch him from my bed.

After the second fusion attempt I had very high hopes to once again be able to function and do all the things I enjoyed doing, but it didn't work out that way. I am not stuck in bed all the time, but I do have many days where I can't walk very well or am in so much pain that I have to stay in bed laying down. This has wreacked havoc on my self-esteem. To no longer be able to do many of the things I enjoy, to no longer be able to do the things I needed to do to care for my family and even myself just tore me up inside. I've struggled since then with bouts of depression, and self-incrimination. To have so many things that made me feel useful taken away from me with nothing to replace them (such as changing jobs; lose one job but gain another so the identity as a worker changes but remains intact) but days of pain and increasing disabilities as the years pass, is enough to cause depression.

Right now I am mostly struggling with finding myself having no desire to do anything except sit around staring at the television. Part of this is I fear causing higher levels of pain. Part is having too many days where I am unable to do anything (pain crisis days, or days where my legs don't work). Part is the chemical imbalances that are created in a person's body when they live with constant pain. My doctors have told me that chronic pain reduces serotonin in the brain, which is believed to be one of the chemicals that controls mood and causes depression when it gets unbalanced.

I am waiting for my insurance company to approve the new anti-depressent my doctor has put me on. While I wait I am doing my best to fight that apathy, sadness, tiredness, insomnia, increased pain, and lack of enjoyment in anything. This blog is one way of doing that. I know that right now it doesn't seem that way since all my posts so far have been negative as I attempted to give some background for possible readers. I've also forced myself to participate in two cross stitch surprises for friends. I normally enjoy cross stitching a great deal and I am good at it, but since I no longer enjoy doing anything, I don't enjoy stitching. I've found though that if I force myself to do something, I will find myself enjoying it after a little while, or glad that I did it once it is over. After finishing the first stitched piece I didn't get that whole body fantastic feeling of accomplishment that I used to get, but I did get some good feelings which made me glad that I did it.

To help me recover my self-esteem when I was healing from abuse in my past, I would make lists of things that I did right that day. This was to train my mind to see not only those things I did wrong, but also those things I did right. It helped me to have a more balanced view of myself and my actions/activities. So I'm going to try something similar here.

I am grateful for having such a wonderful husband. He is so very supportive and loves me despite my physical disabilities and accepts me no matter what.

I am grateful for having such wonderful kids. My daughter, who also suffers from chronic pain and my son are wonderful, caring, loving people. I am proud of them and grateful for their assistance when I have needed it.

I went to the store today even though I did not feel like I wanted to go out I went anyway. I am glad that I did.

I continue to decrease the amount I smoke in a day.

I did wash some dishes today, finished washing the cross stitch square, straightened up the bathroom a little bit, and moved a load of laundry into the dryer then started a new load.

I may not have gotten as much done as I wanted to, but I did get some things done and that's better than nothing.

Now I have to pick a design for the other square and will hopefully start stitching on it tomorrow.

Ron, thank you for everything. I don't know how you put up with everything and remain as calm as you do. You are my strength. Without you I am sure I would not want to continue fighting to live despite everything instead of just existing like I have been. I love you with everything that I am and I feel blessed to know that you love me just as much.

Chronic Pain Affects Daily Life

I have had many people over the years tell me that my pain can't possibly be as bad as I say it is. That it can't possibly affect my life intensely enough that I can not work. That it can't impact me emotionally and mentally deeply enough to cause depression. Depending on who is saying these things (and past experiences between that person and myself) and the situation in which they are being said, is how I choose to respond. With those who repeatedly says things like the statements above, I just ignore it and change the subject while hiding how deeply hurt I am and hiding the self-doubts and self-incrimination that occurs as well. If it is someone that is a new friend to me (or new acquaintence) then I will take the time to explain my conditions and take it from there.

So I thought it might be helpful to others if I start giving examples of exactly how my conditions have affected my daily life. That way maybe they will learn just how deeply chronic pain can affect a person, regardless of the condition that causes the pain. Not all disabilities are visible, but that does not mean they have less of an impact on the one living with the disabling conditions. I personally think an invisible condition has more of an impact on the one living with it because people just can't accept that something they can't see can affect another person's life so drastically. Instead they look at the person and see someone who looks "normal" and they can't reconcile what they see with what they are being told. Whereas if you see someone who is missing a limb (for example), or carrying an oxygen tank around with them, or in a wheelchair people more readily accept that the person is suffering because it is visible.

I wake up (whenever as I don't have a set time due to frequent insomnia) and depending on my pain level upon waking I have to sit and think of all the things that need to be done and decide what is most important. Then I have to figure out a way to do those things with minimal impact on my pain levels. It is a very rare day when I am physically capable of getting everything that is on my "to do" list done in a day. More often than not I am lucky to get half of it done.

Cleaning: I am not supposed to mop floors, move or lift anything over 10 pounds, I can not stand for more than 15 minutes so I have to work in stages by cleaning for a few minutes then sit down for a few minutes to guage my pain level. Many times I have to stop before the cleaning is done. Moving laundry is very difficult because carrying baskets of clothes is hard for me to do. Instead I have to push the basket accross the floor using my foot, or kick the clothes themselves into the laundry room. I can not kneel down and scrub a bathtub. I can not move the couch, chairs or tables to vacuum underneath them. Heavy cleaning (such as Spring cleaning) has to be done with other people to do the majority of the work.

Playing With My Children: I can't hold a bike and run behind them to teach them to ride the bike. I can not run around so baseball, basketball, or any other game that requires running is a no-no. The inability to stand for 15 minutes also affects many games such as board games, or sitting and reading, or watching a video. Children love to run around, play tag, hide and seek, and other physical games. They quickly get upset that we have to change the "running" part to "walking quickly", its not as much fun. Playing catch is done with both of us sitting down, so I don't have to bend over or chase the ball. Board games just require that I get up and move around for a few minutes. Anything that requires a lot of running around, someone else has to do it leaving me on the sidelines cheering them on.

Cooking Meals: For me my pain is simple, the more I move, the more I hurt. So by the time to cook dinner rolls around ( 4:30 to 5:00) I am often in more pain than I was when I woke up that day. More often than not someone else has to cook dinner. The only way I can guarantee that I can cook dinner is if I do little to nothing all day (no cleaning, or moving of laundry, or running of errands). This results in ordering take out food at least once a week on average.

Driving: I am banned from driving a standard shift (manual transmission) due to the fact that my left leg can just stop working without any warning. This means I can not move the leg or even wiggle the toes on my own. To move that leg I have to grab it and pull with my hands. Getting into and out of a car causes one to twist their back which is painful for me. I have to get out of a car every 30 minutes and walk around, so any car trip takes a lot longer than it would if I were normal. The vibration of the car often increases my pain because it causes my pelvis to vibrate.

Sexual Intimacy: For me, because of my injuries, sex is sometimes painful during the act itself, but it always results in increased pain levels after. After I make love and my body returns to "normal" my pain level goes up. There are many times where the day after I have had sex I am stuck in bed because my leg won't work or I am in a pain crisis. (pain crisis: uncontrolled extreme pain) This results in fear of sex. Constant pain is very tiring and it lowers the sex drive anyway so it is not a frequent thing for me to desire intercourse anyway. Even things like cuddling with my DH or spooning (laying with my back against his front) to sleep can be painful. When my pain is real bad just having that added little bit of pressure of his body touching mine hurts too much.

Running Errands: This is affected by my inability for stand too long, walk too long, and drive/ride in the car. When I do run errands I have to carefully plan how to get as much done with as little walking as possible, as well as doing the errands with as few instances of getting into or out of my car as possible. Pushing a cart that has a lot of items in it is difficult for me to do as the cart is heavy and thus it hurts my back to push it, though having the cart to lean on does help if my legs start to tremble.

Before the two fusion attempts failed, my pain level was fairly low and instances of intense pain were not as frequent. I could still do most things that a non-disabled person could do. After the two fusion attempts failed however, I ended up with greater restrictions on my abilities. So I went from being able to run errands, play with my children as much as I wanted, cleaning the house, cooking the meals, doing the grocery shopping etc. All the things other stay at home mom's would do, with only occasional interruptions or days where I had to stay off my feet. To where I am now, unable to do most of it unless I am willing to deal with the increased pain that will result from any of those activities.

When I need to do something, I have to weigh it against how much mental and emotional energy I have to deal with the increased pain (or outright pain crisis) that my activities will give me. Knowing that I can't do most of the things I want to do on a regular basis is very depressing.

This is already very long so I'll get to the emotional effects tomorrow.

Friday, October 23, 2009


Another side effect of chronic pain is insomnia. It is horrible when it shows up in the manner it has shown tonight. I'm tired and sleepy, but the pain running accross my lower back (at waist height) and the pain in both SI joints (deep throbbing ache with shooting stabbing pains down both legs) keeps me awake. Laying down hurts after a few minutes as does standing, sitting, leaning against a wall, any position. Being awake in the middle of the night just throbbing with pain and wishing it would go away is very demoralizing, disheartening and depressing. Being like this in the middle of the night is the hardest to deal with for me. It's lonely and the dark is opressive. Sometimes it makes me feel like I am the only person in the world and that is terrifying.

Many feelings and thoughts that occur when I am stuck in a period of high pain levels do not make sense, they are not logical. Trying to force them to make sense doesn't work sometimes, though speaking those illogical (even crazy sounding) thoughts and emotions does make it better. The release of putting them out there, getting them outside of my head and heart, outside of *me* somehow ..that does help a great deal. Like the pain, these thoughts tend to repeat themselves over and over and I am sure that my depression is only making this cycle worse.

It is only 12:15 AM (central time USA) but I can already tell that I will not sleep very well tonight. I really do want to find a hole and just crawl in and hide if I can leave my pain outside of the hole. 15 minutes pain free would be marvelous! F*** I would settle for 5 minutes without pain.

Sitting here typing through tears is not fun at all. Lets see..positive..something positive...hmmmm..

I am grateful to have a husband who loves and supports me even with my physical issues.

I am grateful to have children who love me.

I am grateful to have good friends who love and care about me.

I am grateful that I can still walk even if it does hurt me to do so.

I am grateful that I have surpassed the doctor's statements about needing a wheelchair by 5 years and counting (in 1999 I was told I'd be in a wheelchair within 5 far I can still walk).

Ok time to try to sleep again.

Thursday, October 22, 2009

Anger and Frustration

There is one side effect that chronic pain causes and that is the feelings of anger and frustration. Anger that the pain interrupts your life. Anger that it is there all the time. Anger that it gets worse sometimes for no reason at all, it just does. Frustration because you can't do all the things you used to do and worse you can't do everything you want to do right now. Things that used to be important to you, have to become less important or it will drive you crazy because you can't do those things.

My pain level is pretty high today and it feels like it is going to get worse before it gets better. Right now I am at a 7 (2:45 PM central time) and both joints popped a few minutes ago leaving me with that deep throbbing pain and occasional stabbing pains shooting out from the joint. The muscles in my left buttock and the back of my left thigh are jumping around and twitching with spasms, occasionally causing numbness and tingles to shoot down my leg all the way to the ankle. Though I do find it rather amusing when my leg kicks out without my telling it to.

I try to find it funny and think of things like the Rocketts and how they all kick in synch with each other. When the bones pop I will mumble "snap crackle pop..riced missy" or "snap crackle pop f*** you too". I do find it amusing that my body makes such weird noises and how others can hear it and then give me funny looks. Once when I was in Wal Mart and as I walked I could feel the bones grinding against each other and popping and snapping. I noticed someone doing a double take as I went by so I turned my head and looked; there were 5 or so people just watching me with these "WTF?" looks on their faces. I asked the closest one why and she said "you sound like Rice Krispies or something". I explained what it was and was a bit shocked to realize that it was loud enough for other people to hear. But that is where I got the rice krispies jingle from. It is not easy to keep a positive outlook though.

I'm tired. I am so tired of fighting this every day. I'm tired of looking around my house and seeing all the things that need to get done and not being able to do them. I just want to scream, throw things, give up; but I can't. I'm tired of not being able to do all the things I want to do for my children and now my niece. It rips my heart open everytime I have to tell her that I can't hold her because I hurt too much. This also reminds me of having to tell my son the same thing when he was little. Luckily though, children are adjustable and they usually adjust to being cuddled and held only when I am sitting down rather than when I am standing up. This is the compromise I had to make so I can still cuddle the little ones, and not increase my pain too much by doing so. There are days where I can't even do that much, though I will do it anyway.

It has been a rough couple of days and its going to get rougher as that time of the month has started.

Wow..being able to write that out has helped. I'm still frustrated and upset, but not as intensely as I was when I first sat down. This is a good thing I guess.

I need to go lay down for a bit, get the weight off my butt.

Btw: I have been responding to comments in the comment section. I read every comment and I really do appreciate them, thank you.

Tuesday, October 20, 2009

Doctor Visit Day

Today was my doctor's visit for the month. As usual I ended up sitting in the waiting room for quite a while (hour and a half) in those very uncomfortable chairs. I brought a small cross stitch piece with me, but I can't say much about it as it is going to be part of a surprise for someone. I got the main part of it done while waiting. Then I got called back. No urine test this time, which was surprising as I haven't had one in the last few months. My doctor decided that he was going to give me 3 months worth of prescriptions so I wouldn't have to come back until the end of January 2010.

As I promised my daughter I did talk to the doctor about changing my anti-depressant because I know the Zoloft wasn't working anymore. Considering I have been on it for many years, I can't say I am all that surprised. So he switched me to that new medication Pristiq. I've never had an SNRI before and from what I've been able to read about it so far, there aren't any interactions with my other daily medications. That's good because I need those meds.

The visit went well and for once there was no piking and prodding just to see if my back and pelvis still hurt. Usually I get poked and prodded every month and asked "Does this still hurt?" while the doctor presses deeply into every painful spot in my lower back and pelvis; occasionally I end up falling because it hits the sciatic nerve and my leg just gives out. After I get home for the appointments I am usually in a great deal of pain and have to go lay down for a while to make is stop. Today I arrived at the doctor's office at a 4 on the pain scale, and left at a 7 so not so bad as usual.

For anyone that doesn't know what I mean by giving numbers for my pain I will explain. Some doctors (mine included) rate pain on a scale of 1 to 10. 1 being very little to no pain and 10 being extreme agony/worst pain of my life. So the lower the number, the less pain I am in and vice versa. Right now my pain level is a 5, which is not too bad.

I did not manage to meet all 3 goals for yesterday, but I did get 2 of them so that's better than nothing. I did manage to shower today, go out (to doctors and ran a small errand) then I needed to lay down.

I can't write right now as my niece is up and wanting my attention. I think she is upset that I went out and didn't take her with me earlier because she's being a tad clingy now. That's ok though, I love the cuddles. They feel so good and I know she'll grow up quickly and not want to cuddle so much.

Later all

Monday, October 19, 2009

A New Beginning, I Hope

I live with chronic pain due to issues with my lower back, sciatic nerve, and a failed fusion of the left sacroiliac joint (which means I live with a permanent compound fracture of the joint to the left of my sacrum, in my pelvis). This pain exists every single moment of every day of my life for the past 13 years. Before that the pain was more intermittent. I take medication for my pain on a daily basis, without these medications I would not be able to function at all.

The injuries to my back and pelvis affect my mobility and what I can physically do or not do. They affect every aspect of my life from my relationships, to my moods, to doing simple chores, to dealing with stress, and everything in between.

Right now I am struggling (and failing) to overcome the depression that has become so much worse over the last year. I find myself having no desire to do anything or go anywhere. This is not good and I have to accept that my anti-depressent medication has stopped working. Until today I did not want to accept that and refused to even think about it. I get so tired of having medical issues all the time. I just want it all to go away! But, it won't, and the time has come to get off my ass and deal with it rather than continue trying to hide from it. So when I see my doctor again on Tuesday I am going to request a change in my medicine and hope it helps.

I will be using this blog in many different ways.

  • Motivation to get on a schedule and stick with it
  • A place to vent my feelings
  • A release for all the thoughts and emotions that run through my head all the time
  • A way to reach out and connect with others in a similar situation to mine
I don't really know if this blog will do any good, but it can't hurt. I used to keep a journal (many notebooks that I still have) and it used to be a major help for me when I was dealing with other major problems. As my back got worse and my pain got worse, I stopped using journals as much and now I almost never write in one. I thought maybe doing a blog might work.

I will write whatever comes to my mind on this blog so be forwarned, cursing will occur, as will adult topics such as how chronic pain affects my libido; this is why I listed it as adult content. I'm not going to post porn or anything like that, but I may post about how fear of increased pain and deep depression have caused me to lose desire for sex and even fear it if that happens to be the topic that is bothering me.

I hope to use this blog as a way of helping me get into a schedule, to motivate me back into some kind of a real life, rather than just existing and vegging all the time. I miss going places, doing things, being active, taking care of things..all things I have stopped doing because my pain levels got so bad and went improperly treated for so long. I'm going to start off real slow. It may seem silly to others but its not silly to me. I am going to start out trying to do the following every day

  • shower
  • do laundry (at least 2 loads washed, dried and folded)
  • take niece for a walk or play outside for a little while
It doesn't seem like much, but considering I have little to no desire to do any of that at all (or anything else for that matter) it is a lot. I will add more things as it gets better. I don't expect this to be easy. I expect this to be very difficult and I expect to backslide, get angry, etc. But I will try real hard to stop letting depression and pain rule my life.

I want my life back.