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Donna Camp


            As some of you may know, I have had problems with my joints for years... decades even, if I start with the torn ligaments in my knee in high school.  A few years ago, I took a bad fall, tripping on some broken sidewalk.  At that time, I started using a cane to get around.  Eventually, I developed enough pain that I also began to use a wheelchair whenever I had to cover a significant amount of distance.  Because my hip began to "go out on me," my primary care doctor got an MRI of my hip, but it didn't show anything significant except the arthritis.  For the most part, this covered all the contingencies for a while. 

          In the past year, however, I began to develop pain in the shoulder of the arm I use the cane with.  Finally, at the urging of my doctor, among others, last October I went to a rheumatologist.   At that time, I was told I had fibromyalgia.  The treatment plan for that did a lot to alleviate many of the various frequent low-grade aches and pains I have had all my life.  However, the pain in my hip and shoulder were not relieved.  In addition, I began to have weakness and difficulty using my arm.  It got to the point where I had to use one arm to move the other.  Finally, I mentioned to the rheumatologist that I was getting concerned about the loss of range of motion in my arm.  So, he examined my shoulder again, and noting that it was "quite dislocatable", suspected I had a torn rotator cuff caused by the arthritis.  He ordered an MRI of the shoulder.  I had that done on the 9th of March.

          In the meantime, walking has become increasingly difficult, and climbing stairs often impossible.  Marc asked me what was causing the difficulty and in describing the problem (needing to consciously make sure all my leg joints were lined up properly before I could put any weight on my leg) I noticed that my hip was collapsing with much greater frequency.

          I am fortunate in that I have a friend who is a physical therapist. so I spoke to her about some of the problems I was having, to see if she had any suggestions.  She suggested I try an exercise to see if the source of the problem could be narrowed down.  To my dismay I could not do the exercise at all...I could not lift my leg.  I reported  this to her and she suggested a couple more exercises which I could barely do.  Thus I learned that I had lost significant range of motion in my leg.  It was a thing that had happened so gradually that I had compensated for it without ever noticing what was happening.

          In a visit to my primary care doctor, I told him about the possible torn rotator cuff and about the loss of range of motion in my leg.  He then ordered a follow-up MRI of my hip.  I had that done on the 26th of March.

          The report of the shoulder MRI took two weeks.  I had been bugging the rheumatologist's office for the results, since my next visit was much later in the month.  Against policy (you are only supposed to get information from the doctor) the receptionist told me that the doctor had told her she could tell me the report showed "a tear and a _lot_ of arthritis."  Since the same facility did both MRIs, I haven't yet gotten the report on my hip.  However, on my next visit to the rheumatologist, he said that he expected that it might show avascular necrosis (AVN) since there was already "some" of that in my shoulder.  He said he wanted me to see an orthopedist.  (My primary care doctor had been looking for AVN in the first MRI of my hip, but they hadn't found any of that at that time.)

          Thinking I would be seeing the orthopedist for repair of a torn rotator cuff, and anticipating some period of immobility following that, I decided to see about getting treatment for the problem in my hand, which I have been referring to for years as "Nintendonitis".  (My rheumatologist had said that he would suggest getting it treated with a splint, but since that was the hand I used the cane with, that wouldn't work.)

          Yesterday (4/9/01), I planned to make a day of it by seeing the orthopedist and the occupational therapist at the same time.  (They all work out of the same office at various times.)  Expecting to be making plans for repair of a rotator cuff, I went in the morning to see the orthopedist.  At this time, I learned that the problem in my shoulder was not primarily a torn rotator cuff after all, but a collapsed head of the humerus from avascular necrosis.  It turned out that the MRI report had said the amount of damage was so great, there were probably a few tears in the rotator cuff.  He told me that the grinding noise that could heard in my shoulder when he moved it was from bone grinding against bone due to the complete collapse of the joint.  The treatment offered was a total shoulder replacement.

          In some degree of shock, I then went to see the occupational therapist.  Given that the proposed surgery had changed and no date was set, she was at a loss to know quite what to do for me.  She confirmed what the rheumatologist had told me, which was the changes in my thumb were arthritic and thus the treatment was basically palliative.  Unfortunately, the pain in my left thumb has begun to show up in my right thumb, as well.  She determined that arthritic changes were occurring in that thumb also, though the damage was not as severe.  Firm splints would be best, she said, but since we didn't know what was in the future of my shoulder, she decided to fit me with soft splints.  Also unfortunately, it turned out she only had one splint in stock at the time, so she could only give me one for my left hand.

          In the past couple of weeks, I have begun to have pain in my other shoulder.  I thought it likely that it was because I have been using it a great deal to compensate for my other immobilities.  That still might be the case, however, I'm concerned that the process is not so benign.  The orthopedist said it was possible that it was AVN also, though he suggested that I worry about one joint at a time.  And, though I have not yet gotten the hip report, the same creaking noise is in that joint.  It is also in both my knees.  So, currently, I have a primary care doctor, a rheumatologist, an orthopedist, an occupational therapist and a referral for physical therapy (for gait training and range of motion exercises), and joints that are worse than a 96 year old lady’s, since they seem to be dead, and I am about to start the round all over again to get a second opinion.  But more and more it looks like the more I know the worse it is going to get

          This zine needs a conclusion, but at this point I can't come to one.  I don't know what will be happening, and I don't know when it might happen.  I'm just sitting here watching the wheels go round and looking for the cream soda.


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