Aside from telling my personal business to strangers across the globe via this blog, I
am have been a very private person. I began the process of opening up to others about 2 years ago. When I look back at all of the things that I’ve kept to myself, it seems a bit ridiculous. Even things such as my workout of choice (Crossfit) were heavily guarded secrets. I spent a lot of time and energy keeping my life private, and the truth of the matter is that probably no one gave a darn about my rather mundane life.
I’ve mentioned my history of autoimmune problems on this blog and how dietary changes have made a positive difference. What I haven’t done is mention my health history to people outside of my immediate family. (Perhaps it would be more accurate to say that I haven’t mentioned it outside of my best friend and spouse.) Until now.
The process by which I was officially diagnosed with sarcoidosis, an autoimmune disorder, deserves its own post. Basically, I discovered some growths, found out they were granulomas, diagnosed myself (by reading medical journals as this was pre-Internet), went to the doctor for confirmation, had an atrocious visit whereby the doctor told me he was too busy to explain sarcoidosis as he hurried out the door, was placed on large doses of steroids, was told I had mental problems and was not experiencing side-effects from the steroids (grrr), was casually told that I might need a lung transplant one day, did my own research, found new doctors who did not underestimate my literacy and/or intelligence, weaned myself off the steroids, made lifestyle modifications, and continued to learn and experiment. I consider myself to be in permanent remission. (Side note- anyone who is diagnosed with autoimmune disorders owes it to him/herself to try going gluten-free and with minimal-no grains. There is a correlation between gluten, grains, and auto-immune disorders. Oh, and apparently there’s a connection with sugar. I’m working on it, but I’m still addicted to sugar.)
Despite the rocky beginnings of my diagnosis, I have done my best to take care of myself (well, not always my best) and to stay informed about how to keep the condition in remission. Because a little knowledge is a dangerous thing, I’ve avoided learning much about the condition itself- specifically the course of progression. I’m prone to experiencing every symptom that I read about it, so I’m careful about learning more than I need to know. I actually often forget that sarcoid is in my medical history, and I never use it for an excuse at the gym- even if its the reason I have to take more rest breaks than everyone else.
Once in a while, I’ll read what others with sarcoid post on the Internet. I often quickly find the posts to be depressing, so I don’t spend much time reading about others’ experiences. Since I work in the healthcare field, I sometimes encounter other sarcoid patients, but I know that my perspective is off; I only see the worst cases- not the ones where people continue to live full, active lives. So, I carry on like I’m the most normal person and healthy person in the world.
Quick note about the gym-
The way I see it: Life always carries the potential for regrets. If I exercise myself into respiratory distress, I will certainly look back on the workout and regret that I pushed myself so hard. If I don’t end up in respiratory distress, I’m in better shape than I was before the workout. If I just wait for the condition to progress, I’ll certainly regret that I didn’t do more physical activity when I could. Which is the better regret? I’ll take doing something challenging and maybe fun vs doing nothing and wishing I’d have done something challenging and fun before it was too late.
I work with a rather brilliant colleague. She knows the human body like no one I’ve ever met. After seeing a patient with sarcoidosis, she began to discuss what an unfortunate condition it is. Just as she was going into the rather scary details about how sarcoid affects the lungs, I blurted out, “I have sarcoidosis!” It was not at all my intention to embarrass her or make her feel bad or even to announce my medical condition. It was just that I suspected that I was going to learn more than I wanted to know. Afterward, I felt bad because she felt bad because she thought I felt bad. I really didn’t. In fact, the whole thing was humorous to me because, really, what are the odds? (1-40 per 100,000 population, depending on the source of information.) I have such a healthy appearance that the receptionists in my pulmonolgist’s office often mistake me for a pharmacy rep and send me to the back right away (only to be returned to the waiting area once they find out I’m a patient).
This all means that today is part of my process of living my authentic life. Chronic conditions are nothing to be ashamed of or to hide. My goal is to be the face of all that can go well- despite diagnoses. I live without regrets, and I appreciate the moments that I have. Somewhere out there is someone newly diagnosed with Sarcoidosis who fears the future. To that person, I say: Don’t believe that this is how you will die. If the end is not here, then it’s not necessarily near. I cried myself to sleep many a nights when I was first diagnosed because no one gave me a good prognosis. Since then, I’ve accomplished many things- gotten married, started a family, crossed off numerous items on my bucket list, traveled overseas twice, gotten in the best shape of my life (thanks to Zumba and Crossift), studied photography, read original poetry at open mic nights, impersonated a lesbian college student to attend a posh local celebrity-filled fundraiser, performed in murder mysteries, sung solos, converted to and from several religions, bought a house, learned to bellydance, homeschooled my child, grown and cut off dreadlocks, danced on a bar in South Florida, learned to be an excellent baker, studied improv, delivered a sermon, inspired students to become musicians, sung with the Temptations, and more. Not a bad list for someone who was given a less than good prognosis 18 years ago.
I don’t think about Sarcoidosis very often. In some ways, that’s a good thing. In other ways, it’s a problem that keeps me from reaching my highest potential.
A lot of the things on this list would not have happened had I not quickly learned to accept my mortality. Many of these experiences were inspired by a single diagnosis. This diagnosis has given me a life of which I’m not ashamed. There is no need not to “live out loud.” I am not ashamed, and I am free.
Thanks for being open about your life with Sarcoidosis. I’ve known you for many of those 18 years since you were diagnosed without knowing all of the details. However, I’ve always looked up to you for your intelligence, achievements, ability to remain better in control of your emotions then me and fearlessness. I can relate to so much of what you said given my own medical history. But now you’re even more of a positive example of how to live regardless of your medical chart.
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I guess we have a mutual admiration club.
This book reminds me of you: http://www.amazon.com/Model-Patient-Life-Incurable-Wise-Ass/dp/0060957271
I read it quite a few years ago, and it really helped shape my worldview re: Sarcoidosis. It’s good for anyone newly diagnosed for any chronic disorder. It reminds me of you because the two of you share a similar sense of humor and unstoppability.