Poems From Pain

I wrote three poems the other night, one after the other. They're written on the back of envelopes because when the need to write them hit, it was extremely urgent and didn't want to wait until I found my poetry journal. I used to write a lot, but lost the desire during an abusive relationship in which I was ridiculed, yelled at, and physically "punished" for writing. Since then writing has become very difficult for me.

I realize I have been gone for a very long time from my blogs and I am sorry for that. I finally have some idea as to what happened with me and as my thoughts settle down, I will eventually write and describe what happened. I am sure I am not the only chronic pain patient who has reacted the way I did, specially those who have dealt with chronic pain for many many years.

Anyway, here are the three poems I wrote the night before last. These poems are copyrighted to me and can not be reprinted, re-posted, downloaded, or used in any manner by anyone else, without my consent.


The Bottomless Pit
© M. Hull Jan. 2, 2013

Lost in the depths of darkness
The bowels of despair
This bottomless pit...
How did I get here?

Stuck,at the bottom of a deep well
Looking up for any sign of light
  none to be seen

How did I get here?

                                                                                               
Praying, wishing, hoping to be saved
   prayers... unanswered
   wishes ...a fool's errand
   Hope...fades to nothing
   nothing left here
   a barren heart
   desiccated soul

As day after day..
   week after week
   month after month
   year after year
pain tears at my soul
    ripping it to shreds
   devours my heart
   destroys what little is left of me

still I wonder..
How did I get here?

I fought for years beyond counting
holding tight to hope
   ...all for nothing

Now here I sit, deep in this pit
   this pit of despair
   with pain my only company

How did I get here?

easy...
I got here through hours, days, weeks, months...years
   unending pain
   increasing disability
It took all I held dear away from me
all abilities...gone

until all that was left...

Is this pit of despair

END


Darkness of Despair
M. Hull © Jan. 2, 2013

I am lost
   blind
   deaf
   dumb
here in the dark

Pain is all I feel

Pain I fought for years
The fight in me is no more

                                                                                   
why bother?
  I can not win
   The pain always overwhelms me
   the dark always surrounds me
   until I am drowning
   the fight washed away


Blind
Deaf
Dumb

Nothing to see or hear
my cries for help go nowhere
   for there is no help, no succor, no healing
   this pain will never end

stuck forever... lost forever
drowning in the tears of pain
deep within the the darkness of despair
END


Grip Of Apathy
M. Hull © 2013

Cold fingers of apathy
reach out and grab me
pulling me down
   into the abyss

No struggle can beat this
no strength can break it's grip
try as hard as I can
..it always fails

falling
   falling
       falling

down
   down
       down
into the deepest darkest pit of despair

                                                                           
swallowed whole

Now I live there.

END


Basically what happened is pretty simple, and so dang common for those who live with constant pain or illness. With the Cymbalta came slightly lowered pain levels. This allowed me to begin to get an actual life back. A life where I could go to the store, go visit friends, go swimming, even go away for a weekend with my DH and have a blast. I was able to cook a few nights a week, do some cleaning every day. Pain crisises became rare as the medication removed the intensity, th sharpness of my pain. Yes I still hurt, but it wasn't as sharp or intense as without the Cymbalta. I got used to this , loved it and threw myself into it with great relief and happiness.

Then came a medication screw up thanks to insurance. So I had to go 2 weeks wihtout Cymbalta. As a result my blood level dropped and my pain went back to its usual 8-10 every day, with the same old sharpness and intensity (butcher knives stabbing the joints instead of a fist in a boxing glove..sharp pain instead of dull) and I ended up back in bed. It took 6 weeks to get the Cymbalta back up to proper blood level. But even then it was too late, I had lost my "new life" even though it was still at the beginning. This hurt soooooo much, to get some back and to lose it again.

I gave up. I no longer wanted to fight back. I was tired of the emotional hurt that comes with losing the new friends you made, losing the ability to do things, losing the lower pain levels etc. etc. So I stopped trying.

It took me until yesterday to figure out what was going on, and it didn't start bothering me until a couple weeks ago. Prior to that I was perfectly happy to be stuck in apathy and doing nothing. It is safer.

That's pretty much it. Hopefully I can write more in depth about it.

Cartesian Model and Gate Control Model of Pain

Living with chronic pain is extremely difficult. With new research have come new ideas and understanding about how pain works. Sadly physicians, people in general, medical personnel etc. are still being taught an outdated model for pain. That model is the Cartesian Model of Pain. This basically says that all pain is a direct result of tissue damage/injury and every person will respond in the exact same manner to the same injury. In other words a broken bone gives a certain amount of pain and every person will have the same amount of pain as a result of that injury.

Research has proven this to not be true. PET scans and fMRI's have shown that the parts of the brain responsible for pain sensations light up even when no specific injury/illness can be found for that patient. The Gate Control Model Of Pain (by Ronald Melzack and Patrick Wall) says there is a gate, the spinal cord, which allows pain signals to travel to the brain. When that gate is closed, no pain signals get through. When it is open, pain signals get through. Further they have shown that the gate can be opened by injury, emotions, mood, thoughts and memories.

The Gate Control Model makes sense to me simply based on my own experiences with my pain. Most CP (Chronic Pain) patients know that stress, levels of high emotions, focusing mentally on their pain and more directly affect their pain levels. We often tell each other about how high stress levels, anxiety, depression and more will increase our pain. We say this because we have experienced it. I know that when I get angry, my pain rises. I recognize that when I am angry my body tenses resulting in my muscles tightening which leads to spasms, pressure on the injured areas and results in an increase in my pain.

Despite the research showing that psychological and social factors contribute to a patient's experience with pain, most physicians and other medical professionals, still work under the Cartesian Model because that is what they are taught in school. Most physicians do not receive training in chronic pain, or pain management. Instead they are taught the scientific method and as a result see pain as a cause and effect only so far as physical disease/injury (cause) results in pain (effect). Many do not realize that other issues also effect pain. This is not good as the result is that people who live in chronic pain are not receiving the optimal therapy for their pain. They are not being taught things that will help them manage their pain.

It doesn't help that most people also have outdated ideas of how to deal with chronic pain. We are not taught that chronic pain exists. Most people's experience with pain is acute pain. You sprain your ankle, rest it and allow it to heal. This works for acute injury, but does not work for chronic pain. In fact this method of dealing with chronic pain will make the pain worse. Included in the area of what works for acute pain but not chronic pain are "no pain no gain" and "push through it". These beliefs actually cause more mental anguish and suffering for chronic pain patients.

Chronic pain is affected by the original injury or disease (and progression of same), the people around you, your own thoughts/beliefs about pain, and more. So far the most effective treatments for chronic pain have included methods which include all these areas, rather than choosing one or two and ignoring the rest. Many do not believe that mood (for example) affects pain but consider this: You have had a bad day at work, your mood is not good, and by the time you get home you have a headache. Most people have experienced this. Part of the reason is that the area of our brains which control our emotions, is one of the areas that lights up in response to pain signals. In a person with chronic pain those stressful emotions can trigger pain signals and vice versa.

Ok, this entry has focused on factual information. Now I am going to write a more personal entry.

Yesterday's Doctor's Visit

Yesterday was my pain management doctor's appointment and since Ron (my husband) was home he went with me. When the doctor finally came into the room it started out as usual, him not really looking at me but focusing on signing the prescriptions the nurse had filled out. Though he was a bit surprised when he entered the room to see my actually laying on my side on the examining table.I usually do not do that, instead I tough it out sitting in the chairs and do my best to hide my pain level. I choose to hide showing it physically because  I am afraid of being accused of lying or acting it up to make it appear worse than it is. Both are things I have been accused of by doctors in my past and 2 different nurses in my current doctor's office. I was hurting a great deal, finally gave in and laid down to get the weight/pressure off my left hip. I couldn't stay laying down for long cuz the right side started to hurt even more, so I had to sit up for a bit and when that started to hurt too much (after a minute or two) I would walk around the room; rinse and repeat. This prompted some questions, which I answered honestly, but he didn't comment on my replies.

I asked about the results of the cat scan that was done in January and was told there was nothing he did not expect regarding my sacrum and SI joints. He then said there was nothing exciting about my lower back either. Since I didn't get to read the report I don't know if that means everything is pretty much the same since the last cat scan (which showed the herniation at L5-S1 and bone fragments within the broken left SI joint) or  if it means that what new stuff did show up is what the doctor had been expecting to see. I like it much better when the doctor actually goes over the written results with me so I can ask questions.

Then the mobility evaluation was brought up. The doctor started to say that he didn't want me to have a power chair and that's when Ron started speaking up. The doctor had been getting ready to leave the room when Ron spoke up, instead he sat back down, crossed his legs and actually *looked* at Ron. He told the doctor that I've been in bed for months, that my pain has been real high, that I fall frequently and that I can't walk from my bedroom to the kitchen without having to sit down in the kitchen doorway or possibly falling. I said that I had been telling the doctor all of this for months, all about the new symptoms and how I can't stand or walk for more than 3 to 5 minutes. I went through it again, describing exactly what happens when I stand for 5 minutes. At minute 2 or 3, I get the sharp stabbing pain at the top of both SI joints and my lower back starts to scream and the sciatica symptoms start. By minute 4 my legs are shaking, shooting pains are going through entire pelvis, down both legs, and up my back. If I continue to stand after that starts, at minute 5 my leg gives out (usually the left, but sometimes both) and I fall. I've tested this many times, timing it as well, and that is the progression. I told him that I have been telling him this for months, which I had. But since I haven't been able to read my medical record, I can't say for sure if he put it in there. I'm pretty sure Ron, the PA, did though because I heard him speak into his tape recorder after a visit with him. (This was a few months ago, before the office stopped using physician's assistants)

The doctor looked down at my chart and started flipping through the pages and he had a slightly sheepish look on his face. Ron then asked me to tell the doctor how many times I fall in a week, so I did (the answer is 2 to 3 on average). The doctor asked if the injection they did helped, and I told him no, which it didn't help and I wasn't expecting it to. They haven't helped ever since I did that fundraising stuff for Kyle's friend, and suffered that fall on Christmas Eve 2010, when I landed on the edge of the arm of that heavy solid wood chair that Ron's dad built. The corner hit the scar over my left SI joint and my right SI joint hit the edge of the desk as I went down.

The doctor checked my reflexes by tapping on my knees and my ankles. My left leg jumped just a little, which surprised me. But when he tapped my right knee, it became obvious that my left leg did not respond the way it should have. It moved just a little, whereas my right leg jerked very noticeably. The same reaction occurred with my ankles, though my left foot barely moved at all. My right foot strongly jerked in response. I could feel the difference too. He didn't say whether he noticed it or not, just but the little reflex thingy back on the counter (it wasn't a hammer, it was a circle on the end of a handle).

The doctor ordered that I undergo the mobility evaluation for the power chair. This is GOOD!

 He then decided it was time to get the prep work done for radio frequency in June or July (when my year is up). He says my record shows I had radio frequency this passed summer, but I don't remember having it. I remember getting injections, but not RF due to insurance issues. I had been told my insurance would only pay for 1 RF procedure per year, not the 4 that I need (2 in lower back, 2 in pelvis). The doctor explained that the insurance company will not pay for more than 1 RF procedure to the same area in one year, but they will pay for more than one procedure to different spots and as long as they don't repeat any of the spinal levels, I can get all 4 sections done. He then said he wanted to go ahead and set up the diagnostics and filled out the order sheet for those. So I am all set for the diagnostic part of radio frequency in April. This way we can just order the RF in June without having to do the diagnostics and making me wait any longer than I already have. This is GOOD!

I mentioned to the doctor that I had purchased some books that are designed to help people suffering with chronic pain to learn techniques to help them cope with it. Some of these things I already do, such as meditating, deep breathing, visualization, and pacing myself but I figured it can't hurt to read them and see if there was anything new I could try. I told him that the book had a paper that lets the patient keep a pain journal and I would start doing that. A pain journal is a daily record of my pain levels. I will fill it out 3 or 4 times a day, writing down pain level by number, what activities I did that increased the pain, and what treatment methods/coping mechanisms I used to help me deal with the pain. This will give him a record of how I experience my pain on a daily basis. He seemed very pleased by both of these things. These are GOOD!

Ron then mentioned this blog and the doctor wrote down the URL. I don't know if he'll actually read it or not. If he does, I hope he isn't expecting daily postings with multiple reports of pain numbers throughout the day etc., like a pain journal. This blog is more for me to get out my thoughts, feelings, and experiences as it pertains to my constant pain (I still think that is a better descriptor than chronic pain). Even though it doesn't give the same day by day accounting as a pain journal does, it can provide the doctor with a better idea of how my pain has been affecting me and how I've been stuck in bed for months and how I am coping with it. So this is GOOD also!


I was saddened by the fact that everything that was said yesterday has been said by me alone for the past 9 months, yet it wasn't taken seriously until Ron was there and said the same things.

I understand that doctors, specially pain management doctors, have to be very very careful now thanks to the DEA's war on doctors and chronic pain patients. I understand that they have to be watchful and careful so they don't give a prescription to someone who turns out to be an addict. I understand that they are working under the threat of not only going to jail and losing their license to practice medicine, but also under the additional threat of losing everything they own. I understand where the doctor is coming from, I really do. But I can't help but feeling upset that (it seems) I was not believed until my husband talked to the doctor.

I think it is very wrong that doctors now have to assume their patients are exhibiting drug seeking behavior when all they are doing is what they should be doing, describing their symptoms to their physician, especially if those symptoms have changed. I think it is wrong that a patient has to bring in a witness to be believed. I am sure that this must frustrate the doctors as well because it interferes with their ability to develop a respectful and trusting relationship with their patients. All these new regulations and rules interfere with the doctor's ability to help people, which is usually why a person becomes a doctor in the first place.

Don't get me wrong, I like my doctor a great deal. He is understanding and genuinely wants to help me control my pain. If I didn't like my doctor I wouldn't have remained a patient of his office for the past 9 years. It is just frustrating to see how pain management has changed over those 9 years, to what it has become, as a result of the war on doctors. I can only imagine how much this must upset my doctors as well as it upsets me.

It has been a while..Radio Frequency Follow Up

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

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

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

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

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

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

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

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

Rain, Rain, Rain

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

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

Addiction vs. Dependence

When you talk about opiod pain medication more and more people have the instant reaction of "anyone who takes thsoe medications is a drug addict". There is no compassion. There is no understanding. There is no leeway for medical conditions that might require long term use of opiods. As I have said before the US War On Drugs has become a very bad thing. It focuses more and more on doctors and chronic pain patients. More and more people in our society believe that anyone who takes opiods is a drug addict, regardless of the reason for the medications.

A few years back (while in high school) my daughter came home from school one day extremely upset and crying. Her science teacher was covering illegal drugs, alcoholism, and addictions in class that day. The teacher told the class that anyone who takes prescription painkillers on a regular basis is a drug addict, no exceptions. Further she stated to the students that there are no medical conditions that require taking such drugs on a regular basis, not even end stage terminal cancer or AIDS. My daughter told me that she had to leave the classroom because she was crying and so very angry. The next day she went to school with my cat-scan and x-ray films (with my permission) and asked the teacher if she could address the class about the issues of chronic pain and narcotic drug use. The teacher allowed her to do so but wasn't too enthusiastic about it.

To make the story a bit shorter (yeah I know..I'm long winded LOL) she showed the class the x-rays (which show the plate and 6 inch screw very clearly). She told them what my diagnoses were and then asked them what they would expect the symptoms or long term effects to be. Of course pain was one of the things the students mentioned. She then asked them if they were having to deal with a broken pelvis on a daily basis, did they really think they could do it without any pain medication at all. End result, the teacher apologized and told the class that she was wrong and that there were people out there who obviously did need such medications. My daughter then went on to teach the class the difference between addiction and dependence.

I am still very proud of my daughter for standing up to her teacher and classmates on this issue, specially since their belief that chronic pain patients are all drug addicts was so intensely, blatantly, and vocally stated. She told me that a few of the other kids still believed the addict line, but most of the class seemed more open minded to the idea that not everyone who takes pain medicine is a drug addict.

In 2007, my son brought home his science text book (6th grade) for a homework assignment. The chapter was about addictive substances such as caffeine, nicotine, and of course drugs. The textbook itself stated that anyone who takes opiod based pain medication on a regular basis is a drug addict. I was utterly flabbergasted to find such a skewed (and obviously wrong) statement in a middle school science text book! I was also very hurt when my son (who is a very literal person) proceeded to try and convince me that I was a drug addict because I take pain medication every day.

I showed him my x-rays and we talked about broken bones, nerve damage and opiod medications. Thankfully he understood that the text book was wrong but it still hurt like hell to have my son think I was an addict because of some stupid politically correct crap in a text book!

Many chronic pain patients like to blame media hype and the government for the widespread incorrect belief that all such patients are drug addicts. I agree but I've also seen that it goes further than that. Our schools, under the guise of trying to teach our children not to take drugs, are teaching this same misinformation. Many churches also teach their followers the same thing. Instead of true understanding, this lie is becoming more entrenched in society every day.

They teach this lie but they don't teach the difference between addiction and dependence; there IS a difference.

Addiction includes a psychological need that drives the person's behavior to acquire the substance they are addicted to in any way possible. This includes alcoholics, street drugs and prescribed medications. Addiction includes a psychological aspect that dependence does not. For one's need to be classed as an addiction there has to be both the psychological and physical aspects. The psychological aspects includes the firm belief that one must have the substance to survive. It is also accompanied by compulsive behavior to attain the substance and to maintain supply of the substance. If the substance is taken away the addict has not only physical withdrawl but mental withdrawl as well. An addict can not control their need for that substance, they absolutely have to have it even though they know there is no medical reason for taking the medication. An addict has the physical dependence on the drug, but in addition to that they also have a deep psychological need for the drug.


Dependence is NOT addiction. Dependence is solely when the body gets used to having a substance in it and goes into withdrawl without it, such as the nicotine in cigarettes. Narcotic medications are not the only medications that people can become physically dependent to. Anti-seizure medications, sleeping medications, anti-anxiety medications, even some anti-depressents can have dependency issues. (many other meds as well) Many chronic pain patients become physically dependent upon their medications without becoming psychologically addicted. If their physical condition were resolved they would no longer need the medication and would willingly stop taking it. Heck I would GLADLY stop taking opiods if I could! Someone who is only physically dependent on a drug *can* stop taking it if they have to, or their condition improves to a point where it ins't needed anymore.

Addicts WANT to take those drugs. People who are dependent but not addicted, don't want to take those drugs and would prefer not to take them. Their medical conditions make the drugs necessary, not some irrational psychological compulsion.

Is it possible for a chronic pain patient to become an addict? yes I believe it is. But having experienced first hand the failure of our medical system to treat chronic pain I firmly believe that for many chronic pain patients who become addicted, the medical system is partly responsible. A person who is in pain all the time, yet can't get adequate treatment for that pain (and is often ridiculed, judged, sneered at, insulted, humiliated etc), will eventually become desperate for relief. That desperation would make the person do things to get the medications that they wouldn't normally do and thus help create a psychological addiction.

However for those who develop an addiction in this way, the addiction can be treated by providing the patient with consistent and adequate pain control. Once their pain is better managed on a consistent basis, that fear driven desperation based addiction will fade. This would of course take time and consistency, something our medical community (and society as a whole) is not willing to do. We want quick results, instant gratification and medical things as well as psychiatric illnesses are not resolved instantly.

I think if more people were educated about the differences between addiction and dependence we would see a more humane response to chronic pain patients. I also believe that if more chronic pain sufferers were treated properly from the start (rather than needing to see many different doctors, suffer misdiagnosis etc for years before finally being treated) we would see fewer addicts within the chronic pain population.

I have felt that desperation for relief in the past. It caused me to consider smoking marijuana or buying painkillers on the street if I could find a seller. I didn't do either one out of fear of being arrested, but feeling that desperation to a point that I was even thinking about turning to street drug dealers, made me understand that some people (who doctor shop or get prescriptions from more than one doctor) do it because they have no other option available, not because they want to get high. Thus the resulting addiction is just as much the fault of the medical community as it is (possibly, I think it may be more the medical community) the possibly addictive nature of the drugs.

That this occurs is extremely sad and shows quite clearly how the medical community continues to fail patients on a regular (and ever widening) basis.

It is official, I am sick! (well sicker anyway)

Woke up in the middle of the night with those lovely symptoms of acid reflux disease (which my meds gave me by the way). That nasty taste in the back of my throat, gagging on it, difficulty breathing and the entire length of my esophogaus, trachea and throat all burning as if someone spilled gas down there and lit a match! Oh what fun! Added to this my nose was running and I was congested in the chest so bad I was wheezing loud enough that I could hear it despite the fact that my ears are blocked up and I am now more deaf than I usually am!

So here comes fun..need to cough to clear lungs...cough causes gagging and stomach acid to enter mouth..burning ensues which causes nose to run and eyes to water..which drips into my throat and makes me want to cough more..rinse and repeat (in this case..gag and repeat) FUN!

I'm the only one awake, not wanting to wake up my husband so I hide in the bathroom hoping the bronchial barking and gagging noises won't wake him up, then I go hide in the living room. We're out of Mylanta btw so I can't kill that burning in my esophagus.

I take mucinex to help thin the mucus in my lungs, find out I'm running a 101.5 fever, yet am freezing cold so put on sweatshirt..immediately start sweating and feeling suffocated so take it off..repeat over and over. Finally I use an asthma inhaler and feel a bit better after my stomach empties itself a couple times.

It is now almost 11AM and I go back to bed. I have this sinking feeling that I am actually sick and this isn't just my run of the mill acid reflux flare. Despite being on Nexium I get those once or twice a month. FUN!

I wake up a bit past 5PM and yup, I am definitely sick. My lungs are full so lots of bronchial barking going on when I cough, loads of wheezing when I breathe..its almost musical! Anyone care to dance? Very productive cough. My sinuses are plugged up and my ears are under waterm so my head feels like I am stoned and I can barely hear. Which of course means I am yelling because I can't tell how loud my voice is. Of course the fever has to show up just to add my favorite friends in the world, brothers Mr. Heat Miser and Mr. Snow Miser battling it out inside me as to who is better and who gets control of my body! FUN! (Right now Heat Miser is winning.)

Never thought I would be thankful for the overactive sweat glands my medications have given me. Between Mr Heat Miser and my standard sweating from my meds, I am currently fairly comfortable temperature wise. Tylenol brought the fever down to 99.5, which I am sure helped as well.

There is one good thing about being sick and feeling like crap...my pain is buried under the illness so I don't feel too badly in that department! lol

Why the fusion failed-Mar G

I have been asked to answer the question why my fusions failed. The reason is different for each fusion so I'll separate the two of them.

The first fusion was done in Nov. 1997 I believe. It was done by a military doctor. Come to find out, after the fact, this surgery was not done correctly. I believe this contributed to why it failed the way it did. Here are the errors:

1. The incision was made in the back
2. No hardware (plates or screws) were used

From what I learned (after the surgery) the best way to fuse the SI joint is on an angle from the front. It usually requires an incision in the abdomen or one starting at the belly button and going around the side to the sacrum in the back. That's a large incision. I do not know why the original surgeon did not do it this way. The SI joint is one of the hardest joints in the body to fuse because of its shape and angle. From everything I've read and every surgeon I talked with afterwards a fusion of the SI joint requires hardware. The use of plates and screws, to hold the sacrum to the hip bone while it heals. These were not used at all.

What broke this fusion was quite simple, I fell. My son, then 2 years old, hugged me from behind. He was just tall enough to hug my knees from behind and when he did my knee gave out (as it will when hit from behind) and I went down. I landed on one of his little wooden alphabet blocks. This resulted in a perfect L shaped bruise and it hit exactly at the base of the incision.

My second surgeon believed that I may have had psuedoarthrosis. This is basically that the body grows a thin bone covering over the area. On x-ray this covering looks like solid bone, but on cat scan the space behind that covering, the original joint, is visible. As no cat scan was done post-op I don't know if this contributed or not. All I do know is that I was 6 months post op and all x-rays showed solid bone (no joint) yet it broke from a small fall that shouldn't have done it.

After the fall the x-ray showed a fracture line in the fusion and my pain, which had been easily manageable, went through the roof.

The second surgery was done in 1999. This surgeon explained the errors made in the first surgery and was not a military doctor. He explained about the possible pseudoarthrosis as contributing to it breaking the first time. He also told me that this was the last time this surgery could be attempted. Due to instability in my lumbar spine he chose to go through the original incision site. He said the risks were too high to do the larger incision. He also made a similar incision on the right to harvest bone from my sacrum on the right to pack the fusion with. He used a plate and screws, one of which is 6 inches long and lays horizontaly from my hip to half way through my sacrum.. (This screw is the reason I can walk today).

This fusion failed for a group of different reasons. I believe that the failure of the first attempt was a contributing factor but I have no evidence of that. I was unable to follow doctot's orders for recovery after the surgery. Then I got kicked exactly on the surgery site and x-ray showed there was a fracture. After that I spent a few weeks in a wheel chair for a month, hoping it would heal anyway as it was still only 3 weeks post op. The surgeon said it might anyway. After that month an x-ray showed solid bone so the surgeon ordered a cat-scan to rule out psuedoarthrosis. With that x-ray result I was forced to get out of the wheel chair and continue activities (such as walking without crutches and bearing weight on my left leg) that I shouldn't have been doing (its a long story). The cat-scan verified pseudoarthrosis. The surgeon told me that it was just a matter of time before that thin bone covering breaks and when that happens I will be walking on a permanent fracture of the SI joint. He also said that it would be a matter of time before the plate and screws break also and when that happens I will be in a wheelchair. (He gave it 5 years till I was in a wheelchair..it's been 9 so far)

So that is why my fusions failed.

I have had bonescans done and bone density tests to see if I have early osteoporosis or some other explanation for the pseudoarthrosis, but those tests came back normal.

Due to another fall where I landed on the edge of a marble topped table, the fracture was made worse (becoming a compound fracture and leaving bone fragments floating around) and I blew a second disc somewhere between 1999 and 2001/2002. With the worsening of the fracture my formerlly indented left hand scar filled in due to swelling. This swelling has pretty much stayed since that last major fall. Prior to landing on the table that scar was indented along its entire length. Now the indent is only visible near the top of the scar and only the width of my index finger (1/2 inch maybe), whereas if I were on hands and knees that indent would hold a small cup (like a cup-holder). When other things cause increased swelling (moving around too much, weather changes, falls, my period) that little bit of indent goes away and if the swelling is bad enough there will be a raised lump the length of the scar that is visible through my clothing. Lately the swelling has increased to form the shape of the letter C with hard nodules/spots at the top and accross the bottom where it hurts to touch it at all. This now causes visible swelling around into my hip and half-way accross the sacrum.

I have visited the local orthopedic surgeron (the only one who does spines and pelvises). He told me that at the very least, they needed to go in and add a second plate (for increased stability) and remove the bone fragments that are floating around; basically to clean it up. He ordered a cat-scan (this is how I found out about the second disc) and after that he told me he never said anything about a second plate etc. etc. I was in tears. He then told me that when my pain is no longer manageable without invasive procedures that he'd go in and clean it up.

Well when it became necessary to start multiple injections and radio frequency procedures (which also use needles, at least 6 on the left side) to control my pain I went back to the surgeon. My understanding is that an invasive procedure is anything that breaks the skin and enters the body; cutting, punctures (needles!) and such. He was very very rude on that visit! He told me that those are not invasive and there is nothing wrong with me then walked out of the room while I was trying to talk to him. I followed and continued to try and speak with him. He totally ignored me and entered a different treatment room closing the door behind him. I went home in tears. A few months later he was arrested for posession of cocaine with intent to sell, so in hindsight I am glad I've never undergone surgery with this man despite his reputation of being a great surgeon.

Mar G, I hope that answered the question of why the fusion failed. Just be aware that a spinal fusion is different from an SI fusion and my experiences are not typical, so please don't panic yourself worrying that this will happen to you also. I do not know if pseudoarthrosis can occur in a spinal fusion, though it probably wouldn't hurt to ask your doctor about it. I hope I did not scare you! I hope your recovery continues to go very well!

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.