 |
 |
 |
 |
||
 |
||
 |
||
 |
||
 |
||
 |
||
 |
||
 |
Intro
I
For some years now I've been having chronic arthritis in some of the joints in my body. For years I have pretty much gutted it out and have continued to play on days where my shoulders, elbows, wrists and hands are concerned. I've also been lucky that none of the serious attacks have occurred on days when I have big gigs.
Until lately that is. Over the past 10 months the problems have been getting a lot worse and I've been unable to play for the last month or so. For years I have kept my condition a secret, however that's not really an option anymore since it is obvious to anyone who looks at me that I am not right. :)
However the situation is not completely grim. I am taking action on several fronts and I have a team of top-notch air Force doctors who are helping me develop a plan.
What I thought I would do is to begin blogging my situation in the hopes that others who run into the issues that I have can avoid the pitfalls I have fallen into and possibly take advantage of other things I have done, and most importantly that they can take heart and not let debilitating chronic diseases dictate who they will be and what kind of life they will have.
So it makes sense to go back and tell the whole story...
2001-2003: Feet & Knees
During this time I would occasionally experience small, quarter-size spots of intense pain in my feet and knees, right where a tendon attached to the bone. These spots would generally show up after I had run or done some vigorous exercise; I therefore classified them as tendonitis.
However there would also be times that these spots would show up for no reason at all. These "spots" were quite painful and they would get warm. They would hurt so much that I would not be able to move the joint or flex it or push off of it without extreme pain. So needless to say when I got these I would have a ridiculous limp and it was very inconvenient and definitely put a crimp in my lifestyle and activity level.
I suffered through some pretty substantial low back pain in my 20s and early 30s (pretty normal stuff for a male my age to go through I suppose) so I had developed a pretty high pain tolerance, and it definitely served to get me through these episodes.
One time I went to a civilian podiatrist for a spot on my heel that was intensely painful and driving me crazy. He looked at it and couldn't see what was causing it. however he had me go to a lab and get blood panels done, which is the first time I was told that I have an elevated "R Factor" which is a possible rheumatoid indicator but in and of itself is not conclusive of anything. He recommended I see a rheumatologist.
This was back in the day that I did not want anything in my Air Force medical record that might counter indicate me for my job or any clearances, so I went to a civilian rheumatologist. She did my bloods again and basically stated that the elevated R Factor could be a pre indicator of a rheumatoid disease however it and the pain I was having was not conclusively indicative of anything they could help me with.
Of course this emerging pattern of specialists looking at symptoms and tests and concluding that whatever was wrong with me is not covered in their field is particularly unhelpful. However based on western medicine and the way the western medicine world is structured it is completely understandable, and I think these people were all good people and good docs.
2004-2006: Neck & Shoulders
In late 2003 I began having serious neck pain for no apparent reason. I went to the Air Force doctors and they did X-Rays and said it looked fine.
In 2004 I began having the same types of pains in my shoulders that I had been having in my knees and feet. They would show up for no reason at all. At this point I had been appointed Music Director of the Airmen of Note, and while these shoulder issues were not yet impacting my trombone playing, they were impacting my conducting.
The pain would come and last for about 24-36 hours without warning, and then leave completely for periods of a week or even weeks. They would often happen at night. If a full-blown attack happened at night the pain was usually so intense I could not even remotely sleep. I would take lots of Motrin and Tylenol, ice the spot down and wait it out.
In 2005 I finally broke down and decided to bring the Air Force in on my situation. I went to my Primary Care Manager and had him refer me to Rheumatology at Walter Reed Army Medical Center. The doc there did my bloods and gave me a physical and neurological exam, and his conclusion was that he could find nothing wrong with me.
Needless to say this was becoming very frustrating. I mean, here I was battling chronic pain symptoms that bore no observable outside manifestations whatsoever and yet were (it seemed to me at the time) quite debilitating, and essentially the answer that I was receiving from the medical world was that "there was nothing wrong with me."
I think back to this time, and I'm sure to many of my friends, families and the doctors I was seeing I might have seemed like I *wanted* a diagnosis, like I wanted something with a label to be wrong with me. However I think what I was really feeling during that time is that people weren't sure that they believed there was anything wrong with me. Maybe I was making it up. Maybe I was exaggerating for some reason. In any case what I was feeling was a crisis of credibility, and regardless of my understanding of the nature of the western medical "machine" the final result of the machine was that I was dealing with my disease alone, without any agreement or plan or assistance from the medical world.
That's a really bad feeling.
I would still have weeks where I was essentially pain free. So I would say that my primary M.O. during this time was to gut it out through the attacks, and generally ignore the fact that I had a problem. Seeking medical help had proven nothing; by this time I had been through the litany of what western medicine offered; I had been given acupuncture, chiropractic treatment, body work, I had altered my diet many times, I had tried every herb and supplement known to man with no results WHATSOEVER. Whatever was going on inside of me was completely unconcerned with anything I would throw at it.
So I got completely off the endless treadmill of seeking help and seeking treatment and seeking relief, and instead worked on accepting what was going on with me. This approach was not popular with people close to me who knew what was going on. My darling wife Linda, who has always been my best friend and my truest ally during the hardest times of my life was particularly troubled by my unwillingness to seek treatment.
But I have to say that this approach was a viable one based on the circumstances and the level of my disease. During this time I achieved acceptance and peace with what was happening to me; the lesson here was mortality, and Buddhist teachings tell us that the keys to wisdom and peace are to embrace suffering as a "sign of life" and a day-to-day understanding that we are mortal. I was at peace during this time; I would say I achieved a greater appreciation of my life and the people around me. I was filled with gratitude.
©2003, Joe Jackson. All rights reserved.