Second Look Sunday: “How I Live My Life With Sarcoidosis”

Originally posted June 7, 2013

Someone recently wrote to ask me how I live my life with sarcoidosis, and it stumped me. I never really thought about it. Although I have a blog devoted to my life with sarcoidosis, and a Facebook page and a Twitter feed, I really do not dwell on the fact that I have sarcoidosis and the conditions it has invited into my life without asking me first.

I have always been one to live in the present. I never planned too far ahead. I am not one of those people with a five year plan outlined in detail. I don’t even plan my day. I could be on my way to go out to a movie and will end up having dinner at a restaurant instead. I go with the flow. I let life take me where it needs me at that moment. I don’t let my life control me. Instead, I control it. I do what I want when I want.

20130607-011432.jpgLearn to embrace the elephant in the room

When I first learned I had sarcoidosis, I had no idea what it was, or the seriousness of the disease. As the disease progressed over the years and I developed other conditions, I still never thought of the seriousness of my conditions individually, and even less about them combined. Even as doctors have told me that I am a miracle and should technically be either dead or gravely incapacitated, I still did not, and do not dwell on my conditions.

With that being said, I am not in denial. I know that I am in very serious way. I live on [seven*] different prescription medications each day. I take tablets [twice] a day. I take a total of [9*] tablets a day, (which is not much compared to a lot of people) and I also use two different steroidal inhalers. I sleep with oxygen and am supposed to use oxygen when I am active (although I don’t as much as I should).

My life has changed drastically in the past [fourteen*] years, but still I strive on. I have accepted that I have sarcoidosis of the lungs and heart, that I have heart failure and live with a defibrillator under my skin in my chest. These things combined is a prognosis of doom to most. I however just see it as a hiccup in my life’s journey. And I have accepted it all and even embraced it. I don’t curse my life how it is now. I don’t dwell on it. I don’t ponder it. I have accepted it, but I live my life as if I don’t have it. I don’t go through my day thinking in the back of my head about it.

When my alarm goes off to take my medication, I don’t bitch about and complain that I have these medications to take. Every time I take my medications, I put them all in my hands and look at each tablet and silently thank them for the job that they do of keeping me alive and I ask them to continue to do their job for me without any adverse effect. Then I silently tell my body that the medications are coming in and to please accept them and allow them to do their work. I know, it sounds like a bunch of new age crap, but I am firm believer of intention. And I don’t get adverse side effects from my medications. As a matter of fact, I have improved. I no longer am on the edge of the heart and lung transplant list.

To say how I live my life with this disease and conditions is to just accept it and live like I don’t have it. I have accepted that I have all this stuff and I have accepted that I can no longer do a lot of stuff, but I still do stuff within my current capabilities, and I do push the envelope at times. And even though I have accepted it, I don’t live like I have it. I don’t go around preaching to anyone that I have the disease. No one knows about my conditions other than my wife, my immediate family, and my boss. Of my friends, only three know. I again believe that if you go about telling people you are “sick”, all you are doing is affirming that to your psyche. And when anyone asks me how I am doing that knows about my condition, even if I may be feeling like crap, the first thing that will come from my mouth is “I am fine”, because in reality, I am fine. I am not in a box six feet under a headstone. I am not in bed unable to feed or care for my self. It is a positive statement and I am planting that positivity inside my psyche.

Also, when you tell people that you are fine, they think you are fine, and the energy that comes from them is a positive one because you are fine to them. If you tell people that you are sick, the energy that comes from most people is one that you are sick, and all that does is confirm to your body that it is sick, and it will continue to be sick because you say so and other people believe so.

Although I do take a lot of medications and supplements, the one thing that I can truly say is the reason I have done so much better is that I only allow positivity into my life. Try it sometime and you too might see a difference in the way you feel.

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