Edited April 2014 from letter dated March 2011.
Good afternoon, doctors. I am sending you three this letter and diagram in a last ditch attempt to explain my health issues from my perspective. I feel that I am failing in properly describing my symptoms to you and I hope this chart will help a bit toward remedying this issue. It is something that is frustrating me to great lengths, so please take a moment to indulge my insanity.
I have attempted to graphically represent my activity levels versus various symptoms over the past nine years. The numbers in the chart are not based on any definitive value or calculation. They are simply an attempt to portray my interpretation of what I do and how I feel over time. 0% in most cases is no symptom evidence at all. 100% would be the highest I’ve experienced to date (or in the case of activity level, the highest intensity and regularly active I have been).
I fully understand that Sarcoidosis “waxes and wanes” over time. I have no problem with that statement whatsoever. I fully agree with it as my experience has supported such a statement. Over the past nine years symptoms bounce around with each month dependent upon stressors in my life and activities that I embark upon. Even the amount of sleep I get can cause them to fluctuate. I have no argument with this. However, that waxing and waning is constrained to a relatively narrow band. It is not wild fluctuations from feeling great to feeling horrible and back again. The delta of these fluctuations is relatively small.
In my opinion, there can be no denying that there is a direct and dramatic correlation between sustained, elevated activity levels and significant Sarcoidosis symptoms flare-ups (refer to chart). This entire poor health odyssey began with my exercise program in 2002. When I quit work and began exercising in 2008 things worsened dramatically. And finally, my health worsened once again in 2010 when cleaning out my grandmother’s house. Each of those three incidents was a significant increase in physical exertion higher than my baseline from 2001, and equivalent to what I believe a healthy 30-something should be easily able to handle. Each time, within four to six weeks afterward, I began experiencing a dramatic flare-up in symptoms, and/or additional symptoms. That is not just coincidence. It is a direct cause and effect in my opinion but nobody seems to believe it.
The result, of course, is that I’m terrified to do anything for fear of not only triggering a significant symptom flare-up, but also triggering a symptom proliferation. Things started with fatigue. The next significant flare-up I induced resulted in lung problems leading to the Sarcoidosis diagnosis. That’s an escalation I’m not comfortable with at all.
In nine years and counting I have not come close to living a ‘normal’ life. Any attempt to do so will cause my Sarcoidosis and other coincident symptoms to worsen. I have not received any indication from anyone that were I to press through my symptoms and try to perpetuate a “normal” live that I wouldn’t eventually kill myself via a complete attack of my body with Sarcoidosis. The only thing that has made things tolerable is rest and inactivity. Hardly a healthy solution as I thus run the risk of other dangerous health issues due to lack of activity.
It’s a catch 22 for me but inactivity remains my only surefire remedy, minimal as it may be, to calming and stabilizing my Sarcoidosis. From 2002 to 2008 I proved that rest and greatly reduced activity levels relieved my symptoms to a semi-tolerable state. The Symbicort and Alvesco had limited effect in my opinion because I was also forced to take it easy during that timeframe. There was no way I could continue with my elevated activity level, or even an activity level similar to 2006, so by resting I got “better”, regardless of the medications. Sure, you can turn that argument around 180 degrees, but I maintain my position, based on the experience of 2002 to 2008, that rest truly did, albeit slowly, lead to subsidence of symptoms.
And this leads to my one final frustration. The light sensitivity (eye pain) and back pain issue. Both came out of nowhere. Both seem to have no cause, nor remedy. And both greatly impinge on my ability to enjoy the few things I can do that do not require extended physical exertion. Driving, computer work, movies, TV, playing games at a table, going to restaurants, even work; all these are very difficult for me because of the discomfort due to the eye and back pain I experience. It’s as if Sarcoidosis has taken away my ability to live and these things are taking away the only things that were left! And I have not managed to get ANYTHING ‘fixed’. I’m beyond even expecting a normal life back, but can I not at least get one thing back to functioning without pain or discomfort?
I hope this helps explain things a little bit better. I appreciate your time in this matter.
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