Replies to 'Living with Chronic Pain'

Chronic pain sucks, but the inside does affect the outside, and attitude is everything.  I had my first knee surgery at 27.  For the first 3 days after surgery, I couldn't move my leg.  Scared the dickens out of me!  Doc said I'd be in a wheelchair at 35.  Two months later I was diagnosed with the same condition in the other knee, and chose to have surgery immediately.  I worked to strengthen that leg and had surgery a month after diagnosis.  I was out of recovery in 20 minutes, and doing straight leg lifts within the first 10 minutes.  At that point, the doctor told me he had no idea what would happen.  I blew his theory.  It went okay, until my legs started getting weaker and weaker, and my doctor kept telling me it was in my head.  Well, my head was telling me that I couldn't walk!  So he gave me a pill to help me.  I should have realized that if he didn't believe there was anything wrong, he wouldn't be picky about the pills.  I was allergic!  I awoke in the morning with a respiratory problem.  I touched my face, but felt nothing.  I looked in the mirror, and I was a monster!  I could have robbed a bank and they would never have found me, but since I couldn't breathe that seemed to be an unreasonable thing to do.  My eyes were indistinguishable and my neck was swelling, choking off my air.  I called my dad to rush me to the emergency room where they got me as I started to choke.  The doctor excused his actions, and I didn't know any better, so I believed him.  But I still couldn't walk.  Then I noticed something on 60 Minutes about a DMSO experimental program at a research facility not far from me.  I fit the patient description, but my doctor had to refer me.  He said he could do nothing more, so he did.  I was accepted and given the experimental treatment.  It was amazing.  It worked.  I smelled like a fish market and nobody wanted to be my friend.  But I could walk.  In fact, I enjoyed it so much that when I went back, I couldn't walk.  The doctor said, "Oh, dear.  I was sure this would help."  I told him what I had done in the two weeks since he'd seen me, and he said he would be more careful in his definition of "take it slowly."  It worked me through the pain to where I could strengthen my legs again.  But meanwhile, I was still falling occasionally, but mostly in the middle of panic attacks, which were increasing to frightening proportions.  I had enough of doctors telling me that I was having a nervous breakdown.  I would tell them I'd been through worse and didn't have breakdowns, this wasn't a breakdown!  I finally found a doctor who took his time, and I was diagnosed with bipolar disorder.  Finally, a name!  Of course, I was an outcast, because this meant I was crazy.  Funny thing was, that with the medication, it was the first time in my life I'd felt sane!  But I kept falling, and my right ankle kept breaking.  Tore cartilage, the doctors didn't look at that, and I spent months in a walking cast until I finally got fed up with my HMO and went to an HMO down the street.  They diagnosed me, so I went back to my own, telling them they had one last chance to find out what was wrong.  Of course, they stuck to their guns, so I went to the other guy for surgery.  The doctor performing the surgery said my ankle had been set for the clean break on the outside, but they had ignored the compound fracture on the inside, hadn't set the bone, and it would break again.  They asked to be allowed to break it and reset.  I told them that I'd been doing such a good job of breaking it for free that it didn't make much sense to pay them a couple thousand to do it for me!  I got the bill and then handed my HMO the bill.  They said they couldn't pay, so I asked them if they'd like to meet with my attorney.  I was bluffing, but they didn't know it, and they agreed to pay the bill.  But the pain kept coming back, and 9 months after the surgery, I broke it again.  I had to relocate for family reasons which seemed valid at the time, and I was transferred to the local facility of the HMO.  They took me out of the cast and I continued my life.  But I couldn't walk.  I went to an orthopedic who said to return to the doctor who removed my cast.  I had no insurance, so they wouldn't work with me.  And the clinic had removed the cast too soon.  The hardware they'd put in my leg for a minimum of 4 years, had not set and it was falling out.  By the time the HMO worked me in to remove the hardware, the pins were sticking out of my ankle!  Needless to say, I thanked them for the free surgery and told them what to do with the hardware!  This caused not only extreme arthritis, but it was affecting my bipolar.  I kept on, having no choice, then about 8 years ago, developed weird tics.  My doctor said it was dyskensia, then Parkinson's Tremors, then "I don't know."  Meanwhile, I was becoming a bobble-head doll!  It took over 1-1/2 years for them to figure out that I had blepheraspasms.  During that time, my face contorted until it hurt, I couldn't see because I couldn't open my eyes, my entire body would shake until I ached all over.  I became a hermit.  I tried to work, but there was nothing I could do.  I always lost my job.  Kindest reason was, "We can't have that face in this office."  Boy, talk about losing self-esteem!  When the diagnosis was made, I started the treatment, 6 injections of medical botox into the bone surrounding each eye, every 4-6 months.  It seemed to work and I continued on with my life.  Then I fell while putting a piece of furniture together.  I laughed, thinking I'd just hurt my pride, but about a week later I couldn't stand up.  I thought I just needed a little adjustment, so I went to a chiropractor.  Xrays showed that I'd slipped 2 disks, but it was a good thing.  Turns out my spine had been weakened by adult onset scoliosis, which apparently had come on with the spasms, a neurological condition.  I couldn't afford to keep the treatments up and the back got worse.  I plugged down pain pills and went on with it.  A few months later, I tripped while walking through debris that had piled up after a hurricane (my timing has always been off) and I landed on both knees on concrete.  I didn't have a doctor or insurance, so kept going.  I finally went to a doctor a few weeks later when the pain became unbearable.  Xrays showed I'd shattered both kneecaps, but they could do nothing short of replacing them, which they would not do because I had no insurance.  They said to keep going until the pain got so bad there were no other choices.  The pain just got worse, but at least I knew what I was fighting.  In a way, I was blessed to have had so many things go wrong, because I'd learned the importance of strenthening.  The bipolar was what finally did me in.  But the arthritis had spread from my feet to my middle-back.  Ouch!  Now on top of the torn cartilage which remains, the shattered kneecaps, the arthritis, scoliosis, temperamental disk, spasms and bipolar, I developed a tear in my rotator cuff.  Again, no insurance, no doctor.  But I had gone to a doctor about 2 years ago who prescribed pain pills, good old Vicodin.  I took them for 2 days and returned the rest after having spent the day returning those first two!  When the mood disorders came on, and I learned I had developed hypothyroidism, I went to a doctor.  He was lacking totally in bedside manner, and accused me of whining and moaning when others had it worse!  Boy, did I know that.  So I had another fight on my hands.  He wanted to charge me a phenominal amount for the abuse, and I was now on a fixed income.  I won.  Then I went to my old doctor, thinking he could help me adjust.  He wanted to put me on heavy-duty prescription pain pills, and I told him no.  He said I couldn't hurt much.  I explained my feelings.  First, I am in 24/7 agony, and when a pain pill wears off, it only makes it feel worse.  I don't need to feel worse.  Second, I tried a pain pill and I could do nothing that didn't involve a bucket and a cold rag!  Third, I have enough wrong that I don't need to add addiction to prescription medication to it.  Then I watched my mother die from cancer.  She was an antagonistic old gal, full of fight.  Then I realized that fight is what she gave me!  So I changed my plan of attack.  I now use over-the-counter pain meds, such as generic Alleve only if I must do something which could be affected by the pain.  I changed my diet (the hardest part of this) and am working to keep only healthy foods in here.  I started meditation which actually works extremely well.  I removed as much stress as possible and work out in a swim pool at least 3 times a week.  It is not only increased mobility, but the water is relaxing and soothing.  Once I get in, it's hard to get out!  I walk whenever possible, and have a little portable cycle that I use when I'm at my computer or watching the boob tube.  I've just started with resistance training at the local Y to strengthen my muscles.  I haven't fallen down in almost a year now, which is a record.  I now take regular steps instead of baby steps.  I still hurt, sometimes horribly, but I have to remember that I'm aiming for a healthier body which should result in less pain.  My right cuff is still a bear, but I try to remember that I'm here!  And nothing lasts forever.  I will get it fixed when the insurance is here.  Meanwhile, it trying to manage the pain my life is becoming so much better.  It's forcing me to look at all of me and everything in my life.  So when it hurts, I try to remember the good things it's done.  It still hurts, but it doesn't make me feel quite as sorry for myself.  I still believe that if I keep up with this regimen, the pain will lessen in time.  Meanwhile, I laugh a lot and try not to take myself too seriously.  I love music, and that centers me.  I am my project, and I bless the pain because it's making me a better person.  See, there's always a better way to look at things.  But the word, "OUCH" is still very much in my vocabulary!