I have always been an enthusiastic worker; sweat and blisters never scared me. Almost five years ago I was working two jobs. One was five hours a day and the other depended on the work load, so some days were brutally long, but I enjoyed it. My husband and I split up and it was ugly. Four police officers and a tow truck got involved because he had sabotaged my car in the process of agreeing to disagree...that's life.
I moved on and I had more time to devote to work as a result. I was building a nice little bank account, had GIC's and was in want of nothing. My life was mine again to control, that is, until I started a nagging backache along with a headache and flu-like symptoms that fluctuated on and off. I figured it must be a flu; no biggy, take a few remedy pills and push on. Only, I got worse. In the meantime, the stalking and harassment that I was enduring from my now estranged husband, but did not respond to, were starting to wear on me.
I was always worried about what would happen next, so I attributed my symptoms to stress even though I had never physically reacted to stress before. Mind over matter. He didn't matter so I didn't mind. I was using all sorts of stress-reducing techniques, but still I was getting worse. So was the harassment. Finally, I broke into tears on the morning of December 15th, 1998, from the pain that had started growing six weeks ago (and I'm a tough cookie). I took myself to emergency. The doctor there (let's call him #1) tried to get me to say ANYTHING that would make it a W.C.B. case. "Was there a pop or snapping sound?" Sorry, I didn't really believe that to be a fact. What ever happened to honesty anyway?
Finally, he gave up and said I need time off work and physiotherapy. Ok, guess I must've hurt myself somewhere along the line and it was catching up to me. Maybe I deserved it for being a workaholic. Without any x-rays being done, my physiotherapist started me on an exercise program that was incredibly painful to do, and the more I exercised, the worse I got. Instinct was telling me I was doing more damage than good so I stopped going to her. I also started gaining weight very slowly.
Finally I went to see my own doctor (doctor #2) in February of 1999. He gave me Tylenol 3's which I used very sparingly because of my borderline allergic reaction to codeine. He referred me to a massage therapist who was excellent, but once again, all I did was get worse. For months I was using painkillers, going for walks, going to massage therapy and a chiropractor while still trying to work. I was laid off from my first job, but I still had my second one which had turned full time. I was told "it" can sometimes takes up to two years to recover, but still I continued to get worse. (Recover from what? My injury that nobody can identify?)
Now I was finding that I couldn't sleep through the night without waking up moaning and groaning in pain, sometimes even in tears. It was that bad. When I went to make an appointment, I was told that my doctor #2 had left the country (ironic?) and would I be willing to see his replacement (doctor #3)? I wasn't happy about having to explain my whole story again, after all, I was getting tired of hearing it myself, but unfortunately it was going to be a necessary evil. Having listened to my soap opera, he gave me a prescription for 50mg tablets of Demerol, referred me to another physiotherapist and sent me out the door.
The new physiotherapist was much better but it wasn't helping much and I was finding it necessary to use my pain killers more frequently. The weight I was gaining was getting to be embarrassing. I had gone from a size five to a nine and had to buy bigger jeans. Needless to say I did not enjoy the comments that came with this! Anxiety came and went anytime it wanted to, and on occasion I would feel a sharp pain in my chest. The heart palpitations were pretty scary as well and I began to think seriously about quitting smoking. I never did tell a doctor about those symptoms. Why would I? I couldn't get help as it was.
Sometime later, the numbness, tingling, burning, aching feelings in my legs started to increase until finally I had a total loss of feeling in my lower left leg from the knee down. That scared the hell out of me, yet my doctor #3 said, "Sometimes when I sleep, I pinch a nerve and wake up with numb tingly arms and hands, but if I shake them around for a few minutes, it goes away." My rebuttal was, "Yes, I find that too, but you may have noticed I have never come in here for that!"
My menstrual cycles were getting worse as well and I felt there had to be a connection here, but he disagreed. After all, what do I know? Ponstan of the highest strength didn't even come close to touching the pain. He did, however, send me to a gynecologist whose answer was to do a hysterectomy without an explanation as to why. Right. My thumb hurts so we should amputate at the knee. Not going to happen. When I asked my doctor #3 to refer me to a back specialist, he replied, "That will take time." I looked at my watch and said "So? Get on it!"
His efforts were apathetic and non-productive. Two weeks later I went to see him again and I was wide-eyed with shock when he said, "I guess I should finish filling in this form and get it sent off to the back specialist." I stood up and walked out without saying a word. My way of saying, "You're fired!" Those weren't the only words running though my mind either!
Into my 18th month of this pain game, I was developing bladder control problems. I could live with the diarrhea and constipation, annoying as they were, but partially peeing my pants was not amusing to me at all. Back into emergency I went. I described all my aches and pains, the irritated bowel and chronic diarrhea and constipation, the numbness, tingling, burning sensations that would migrate at any strength they desired, the weight gain (moved up to a size twelve), and the embarrassment of bladder control problems that had started. I really dislike sounding like a broken record.
I almost fell off the bed from a sitting position when doctor #4 said, "We don't worry about this unless you have lost bladder control completely." (Just what do I have to do to get help anyway?) "Ok," I said, "what you're telling me then is that if I completely pee my pants, that is a problem, but if I only partially pee my pants, that is acceptable?" (I'm in my mid 30's by the way). After a long stare down doctor #4 suggested that perhaps he should find a neurologist. Good idea! What a genius!
The neurosurgeon (Doctor #5) who arrived in due time took all of my information and then asked. "After eighteen months you're complaining about this now?" I almost hit the roof. "I have been complaining about this non-stop since it started, but I keep getting more hoops to jump through and some of them are getting to be pretty repetitive! I can't get any help for some reason and I don't understand why!"
I was into the CAT scan within a half hour, but while I was waiting, doctor #3 showed up and asked why I was there. I told him the whole story of why I'm so damn frustrated at the lack of effort he'd put into my case and that I need help from someone who is willing to try. He gave me some sort of a weak apology, said he had done all he could, had arranged for me to see the back specialist (sure you did) and hoped that my CAT scan would be negative or he'd feel pretty stupid! Of course! How dumb of me! This is all about him! No wonder I couldn't get any help. Moments later I was in the CAT scan.
A few days later, I visited the neurosurgeon (doctor #5) in his office and once again we had no answers, so a decision was made to book an M.R.I. The waiting list was only nine months long! He suggested that in the meantime I should lose some weight. Sure, one problem though. How am I supposed to do this when I'm not eating much anyway and am unable to exercise? Oh my God, please, I'm not able to take much more of this. Help me.
Now I needed a new doctor and I needed someone who was good, not some flake. A few of my friends had recommended one and upon my first visit I repeated (sighhh....again) my entire story to doctor #6. He promised he would try. Even if we missed it fifty times, he'd keep trying. Thank you, that's all I can ask of anyone.
During the next six months I went for x-rays, a bone scan, and several tests that I asked for. I saw several more specialists. At one time it was thought that maybe I had MS. I researched it and found that some of the symptoms match, but not enough. After two years I finally broke down crying uncontrollably. The real gut wrenching sobs. I had reached the end of my rope and I just couldn't take any more.
I was ready to commit suicide as that would be by far a better alternative to this hellish life I now lead. My new regular doctor (#6) was gone for the day but his replacement put me in the hospital for a week. The only treatment I got there was more pain killers than I had ever allowed myself, and a test for MS by a different neurosurgeon (#7) who would not point me in another direction once he had determined that it wasn't MS. In fact he was rather rude about it too, most likely because he felt I had wasted his time. I would've gladly traded his wasted half hour for my wasted two years.
My regular doctor (#6) had recommended a book called Taking Charge of your Back. It had gentle exercises that I kept trying--mainly the stretching as I felt very stiff all the time. While I ate pain pills, an anti-depressant to help ease 20% of the pain and help me get to sleep at night, and cried and prayed for an answer, I stretched and walked as much as I could tolerate. By now I was lucky if I could walk an entire city block. A nurse came in and saw me sitting up straight in bed, with my knees out, my feet bottoms together while I was gently pulling them in towards me. Because I was doing this, I was told that it was all in my head. I just needed to put some make up on and go shopping! Then she labeled me a drug seeker--all because I was still trying!
If I had found the strength to do so, I would've dragged all 350 pounds of her up to the roof of the hospital and thrown her off with the idea of doing a splatter test from seven floors up! Given my state, I'm sure a plea of temporary insanity would've been more than adequate.
The next morning my doctor (#6) discharged me while telling me I wasn't getting anymore pain killers. "You're a strong person, all you have to do is exercise and you'll be okay." He bought into that nurse's opinion of me and yet she knew absolutely nothing about me! How dare she not only judge me, but dare to turn my doctor against me! I couldn't speak. All I could do was cry and cry for hours I was so insulted, hurt and angry as hell!
I should have turfed that ignorant, high and mighty, braindead body right out of my window yesterday. If I had known she was going to do what she did, I would have! Here I was eating anywhere from two to four 50mg tablets of Demerol with alcohol and it hardly took the edge off of the pain. It was that bad. This is the help I got? I had to shop in a wheelchair, for God's sake! There has to be an answer! There just has to be, please God.
Part 2 Friday.