Friday, November 21, 2008

My personal health challenge: SARCOIDOSIS

In January, 2004 I was feeling very lethargic and fatigued. This was certainly not my usual vibrant self. I figured that I was tired and had things on my mind and basically tried to get more rest and thought a short vacation would do the trick. In a week or so, Mike had noticed a series of bumps on my left shoulder which had been itchy and raised. I made an appointment with a dermatologist and immediately he had a look of concern on his face. When I inquired as to what he looked so concerned about he said he wanted to do a biopsy and rule out some things. He told me not to worry, but I remembered the look on his face.. It's interesting that I didn't ask any further questions at this point. I made a follow up appointment for a week. He did the biopsy and I left.

I went back to my follow up appointment and he told me we have good news and bad news from the biopsy. I asked for the bad news first. He said I had Sarcoidosis. Now, remember I have worked in the medical field for over 20 years at this point in my life and I had never heard of this disease. I then remembered that Reggie White, a pro football player with the Philadelphia Eagles, had recently died from this disease. Now , I was concerned, so of course I immediately asked for the good news! He said that he felt it was early in the disease process and may be limited to the skin being the organ that was under attack from my immune system. Of course, I went right to every resource I could find to learn about my malady. I learned that Sarcoidosis is an immune disorder that affects different organs of the body and atttacks them somehow thinking that the organ is a foreign body it must destroy. Strange, huh? It is similar to Lupus and Rheumatoid Arthritis in some ways. The problem was, for me, that it was incurable and there are no treatments for it that prolong one's life for any great length of time. I realized why I hadn't heard of it as well. When people die from this disease they die from complications of the disease such as heart disease, pleural effusion, or pneumonia.

Now, here is the upside to this sad tale of woe. Statistically, only about 60% of those presenting symptoms on the skin end up with internal Sarcoidosis. So , I figured I will be in the 40% group. In fact, I promised myself I would be! (Those of you who know me well know I always keep my promises). I had to immediately get a chest x ray and heart x ray to make sure that these two organs were not filled with immune attack cells as these are the two organs most affected by this disease(heart and lungs). I was clean and clear. Whew....! I have to continue x rays on these two organs as well as receive an occular exam every 6-12 months.

I began to have to endure weeks of extreme fatigue. This is a common symptom of Sarcoidosis in it's infancy. It was terrible, yet bearable. I had about 8 episodes lasting about 2-3 weeks at first. Eventually these episodes were lasting for smaller periods of time. I was getting better. My doctor had wanted me to go on a medication called Metatrexate(a chemotherapy agent) for prophylactic purposes for my internal organs. I declined after hearing of the side effects such as moon face , severe acne and weight gain. In addition, the liver would be effected as well.

It is now almost 5 years since my diagnosis and I am well overall. I have a very annoying problem with getting what I call "red face syndrome"( a Crewism), which is very painful, causing burning and itching on my face, ears, eyes and nose almost each day, but, this I can deal with. I have had no more lesions nor fatigue since 2005. I take excellent care of my body and health even more now. I believe these healthy habits are the main contributor to my not being extemely symptomatic.

I worry sometimes about my disease and I worry more about how my death may impact those who love me dearly, especially my Michael. However, I know there are many more horrible things and situations that people have to live with and deal with so I try to always keep this in proper perspective. I feel really well at this point in my life and I most of the time think positively and take each day at a time trying to live it to the fullest. It was difficult recently when one of my favorite comedians, Bernie Mack, died from complications to his lungs brought on by his Sarcoidosis. But, he is not me.

So, this is my cross to bear and thorn in my side. If you see me having a red face or looking like I have a sunburn or windburn now you know why. Just try and be patient with my wanting the room cold and needing air so often! It makes my symptoms easier to deal with. Thanks. Bright light from computer screens or overhead flourescent bulbs bring on symptoms as do strong perfume or cologne smells. Smoking near me is the worst in terms of the syndrome being set in motion. My plan is to be here for a very long time.

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