Living with sarcoidosis has been one of the most challenging things I have ever faced. I have had cancer and this is much more difficult than dealing with that has ever been. Sarcoidosis is considered rare but many in the community are starting to doubt that. If you've heard about the death of Bernie Mac, you might be familiar with sarc. His death certainly gave those of us with the disease a scare and it just emphasizes just how deadly this disease can be.
My story actually began about 20 years ago when I was having kidney stones(sarc causes high levels of calcium which can result in kidney stones)and other problems. I had a biopsy done and as it turns out I had sarc back then but for some reason no one told us a thing. So unfortunately for 20 years the disease was left to advance and wreck havoc at will and did it ever.
I was sick way to much for someone who was supposed to be an example of health. I was a fitness director, group exercise instructor and a professional presenter. I was also sick, alot. No one could ever put the dots together and figure out what was wrong. I began to think I was crazy! As the disease progressed unchecked I grew more ill and slowly began to cut back on my responsibilities. By the time my husband was transferred to Alabama, I had quit working all together after a short time of trying to work one last time.
Once in Alabama, instead of seeing an HMO doctor, I saw an Internist and finally things began to happen. He literally referred me to 7 specialists to find out what was wrong. It was from a skin biopsy that I was initially diagnosed and from there other tests and another biopsy confirmed sarcoidosis. Now the really great thing about having had cancer and having sarcoidosis at the same time is when you find a tumor or growth, you have no idea which it is so lucky me gets to get cut open for a biopsy every time I find something"suspicious".
One of the most difficult issues with sarc, as it's an auto-immune disease, the fatigue is debilitating. There are some days it is almost impossible to get out of bed. For a fitness freak, this has almost taken me to the border of insanity (my husband would probably tell you I crossed the border a long time ago!). So to be honest, since we only lived in Alabama 18 months, I do not have a lot of memories from there.
My husband got transferred back to Florida(thank GOD!!!) and our first two years here my illness went from stage 1 to4, I was awarded disability and our third year back I was hospitalized 8 times. I am a difficult patient as having cancer puts a little different spin as a lot of the meds they like to give for sarc close down your immune system which can increase your chance for cancer. I tried to get into a government study but was told I was too sick and we conferred with the best sarc doc i n the US and he said he had no options for me.
So this brings me to this week. No one knows how you get sarc and their is no cure. Some people never know they have it and others are debilitated by it. There is no med just to treat sarc so docs usually use prednisone which I cannot tolerate and other auto-immune meds. They also use chemotherapy which is what I started this week. One of my biggest problems with these meds is you are not supposed to take them if you have an infection and I almost always have a kidney and bladder infection. But finally things have cleared up and I started them last week. Even though I am on two nausea meds, I am still struggling with terrible nausea. On Saturday I thought I was dying(OK, a little melodramatic), but come on, have to be well for the football games.
Last year we were blessed to be able to get season tickets to the Tampa Bay Bucaneers and it has done wonders for my disposition. It is so nice after so many years of dealing with illness and serious issues, to be able to go yell and have some fun. You should see us, we are real geeks. Although we do not go as far as to shave our heads, paint our face and wear a ship on our heads(my husbands friend does that)although I guess I could if I end up losing my hair!
So as the first week of football season approaches, I'm praying I will be well enough to go.
I guess that's it for now.
Peace
Melissa
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