Livin’ The Sarcoid Life

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Living The Sarcoid Life

My 45th Birthday @ Amy & Nicole'sI had a realization just the other day, while on the treadmill at the gym. It was seven years ago this month that I started “Livin’ La Vida Sarcoid”. Well … I should be a bit clearer. It was seven years ago this month I started back at the gym … the first time around. At that time I was lookin’ down the double barrel of my 45th birthday. A momentous occasion, maybe. But something inside of me, it could have been all the fat, self loathing, or the depression, told me it was time to get my glutes to the gym.

I was never the athletic type. Even during my childhood. I was a soft spoken emo-boy at heart. A budding artist even at a young age. Though I must admit, I did start liking the routine of exercise, and the results. I had set a goal, another process, ’till then, I had never know about. My goal? To be under 200 lbs by January 20th, 2002 … my 45th birthday.

I can proudly say that I reached that goal. From a size XL to a M in five months. I lost 47 lbs, gained a lot of new muscle, and shopped for a lot of new clothes by my goal date. During that time I ate healthy, but never really changed my diet from what I was eating before. I slept better, felt better about myself, and was having mass quantities of sex. Why not! I looked the best I had ever looked since probably my twenties. And the flesh was willin’!

But sometime around February or May of March 2002 something insidious started to happen. Unexplainable things started happening to my body. I can’t remeber now, the order of the symptoms, but they were disparate, and flummoxed all my doctors at the time. I spent from March of 2002 to June of 2005 in the diagnosis desert. Needless to say my gym activity took a nose dive.

There was a period of time I felt nauseous for 6 months, with no explanation. I was having difficulty breathing while I was working out during the summer months. I was feeling dizzy for no explainable reason. My ankles were swelling, but not from weight gain. Oh … and there were more, but I won’t list them all. It wasn’t until some time in 2005 when I started getting lesions on my legs and the two pea sizes lumps on my forehead, that there were ever any outward expressions of the diagnosis to come … Sarcoidosis. I won’t bore you with the details. If you have interest, just go to the first post of my blog, read, and keep hitting the previous button, to read chronologically.

Sad to say this has all been a preface to the main event. I am back at the gym again. Within that statement is so much fear and trepidation. But on the other hand … there’s a fist … no … there’s the fact that I’ve come full circle. I can actually work out and shed all the weight I’ve put on from the onset of my Sarcoid symptoms. That may not sound like much to the average healthy reader, but to those livin’ la vida Sarcoid, it’s an accomplishment in and of itself.

I know the disease will be with me always. It’s the lodger that won’t move on … and should. But the one symptom I still have left (cystic lesions in the bones of both my hands) has subsided some and is manageable, and less painful than at its onset in August of 2007.

I’m taking the time to write this, for a few reasons. One is, it’s been a long time since I could work out, and control my weight on my own. The other is in the light of the death of Bernie Mac. I only found out on Friday that Bernie was livin’ la vida Sarcoid. My partner Chris eMailed me an article. I had mixed reactions to the press he was getting, but on the other hand (no fist this time) it was press about Sarcoid. The sad part was finding out that he died from Pneumonia a day after I found out. This could have been brought on by his use of prescribed immunosuppresents to help fight Sarcoid symptoms. It could have also been due to scarring in his lungs from Sarcoid. But not knowing his history, that is purely speculation. The outcome though … was terminal … no matter what the reason.

A friend asked me yesterday, if I belonged to any Sarcoid support groups. I said no I don’t. “Why is that Joe?” Because of the Bernie Macs out there. The ones that do have it worse than me. I’m sorry …  I can empathize …  but I can’t take on their suffering too. I don’t know that I’m that mentally strong right now. I’ve tried reading online stories in other blogs or support sites and got more depressed. Though it’s rare, people do die from this disease. And yes … I can be hit by a truck tomorrow. So in my eyes, I am livin’ la vida Sarcoid, on my own terms, like I’ve lived my entire life. On my own terms. When I’m symptom free, I do what I can in that day, in that week, in that month …  and when I’m not, I go to my doctor(s) and I deal with the current situation.

Though I’m feeling a bit sad right now, after writing all this, I’m still happy I’m back at the gym, and I’ve set another goal. Same one as my previous goal. To be under 200 lbs by my 52nd birthday January 20th, 2009. It’s a goal I can live with and live for.

And that my friends is how I’m “Livin’ MY Sarcoid Life”.

Joe Streno
artist . musician . photographer . apple computer consultant . residing in asbury park nj with his two cats rocky & rose & living to tell tales about it

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