02/04/2022
Where to start... Well let's start with Me and when, how and where my misadventures with Sarcoidosis has led me... I will try to keep it to the reader's digest version but this may end up very long!
July 2013 While at work my eyes began to burn, itch and become puffy. I have never really had an allergy but from those who do, it sounded just like what I was experiencing. My wife picked up some allergy eye drops and they seemed to help a little.However the next day my eyes were noticeably swollen and I began to get double vision. I went to my family Optometrist at the end of his day he stayed to take a look. He was very upfront in saying he did not know what was going on but he gave me some steroid eye drops and asked me to go to an adjacent town where his other office and partner was at the next day. I went and as he had me track a paddle in his hand with my eyes, he said something no patient ever wants to hear their eye doc say... "Whoa, that's not right!" I guess one eye tracked fairly well but the other one would track in a jerk and stop motion the entire time. He told us to wait in the waiting room while they made a few calls. He came out and said I needed to go to Billings, MT to see an Ophthalmologist. It was a Friday and by the time we got to Billings, it was going to be about 4pm. My grandson's first Birthday party was going to be at 1pm. I could not drive myself so my wife drove me. Both of us would be missing our grandson's very first birthday party... you cannot get those back. The Ophthalmologist did some checks, tests and measurements to discover my eyes were not just swelling but were also protruding as well and that my eyes were under incredible pressure. He said he was sending me over to get a MRI Scan. I looked at my watch and it was a few minutes after 5pm... on a Friday... He, continued and said he called in a few favors but if we don't get the swelling down your eyes may have permanent damage to loss of vision all together. This is truly when the panic set in on me. Through the MRI we discovered that it was my lachrymal glands that were swelling causing my eyes to be swollen and protruding. He put me on a pretty steep burst and taper of Prednisone a steroid that he felt would have the best chance in reducing the swelling quickly. It did and I had no vision change at all (Praise the Lord) but when I dropped below 30mg my eyes began swelling back up. He set up with a Eye Center in Salt Lake City for a Dr. there to take a look at my case but he told me then he believed I had Sarcoidosis. After several bouts of…Sarcoid what the heck osis, he gave me a rough description of what it was. My wife a long time RN had never heard of it and I most certainly had never. We did the thing that any sensible person would do and googled it. When we got to the point where WebMD said, "Usually the disease is not disabling; most people with sarcoidosis live normal lives. In fact, in the majority of cases, the disease appears only briefly and disappears on its own." We both had a huge sigh and thought OK this is no big deal. How amazingly wrong could we have been. What you miss when your read this is the "Ususally", "Most" and "Majority"... It does not say "Always", "In All" and "Every". The truth is that in many cases is true but not all. There is a rising percentage that have the chronic type which is debilitating, life altering and life threatening.
6 doctors later, enough blood tests to have fed a small colony of vampires, MRI's, CT's, a botched biopsy of my lachrymal gland (Dr missed the gland entirely), a specialized Eye Center the #2 Sarcoidosis Center in the nation at that time over 2 years of being on 30mg of steroids. So what did we find out? That an eye center really doesn't want to deal with you when it is a gland issue that is part of your lymph system. At the time the research and frankly the money for Sarcoidosis research revolved around lung issues which I have very little to none. Especially when your symptoms have been fairly to greatly suppressed by the Prednisone.
2 more Doctors and finally I had one whom took the information I compiled ran more tests and with determination and diligence, ruled out so many other possibilities and was left with one diagnosis of Sarcoidosis.
My eyes started me on this journey but I haven't mentioned all the other things I was unprepared to be hit with. The exhaustion which is hard to describe other than it is like having your entire body encased in cement. The weight, the cumbersomeness is unfathomable. There are times when I have to debate myself on if it is worth the effort to get up and even use the bathroom. The stabbing Chest pains, the liver pain where it feels like a knife being twisted off in your side, constant bouts of hoarseness, night sweats to the point you can wring sweat out of the bed sheets. How about trying to walk on feet, ankles and knees that feel as if the bones are broken. Or the nephropathy is so bad it is like standing on two sticks that are your legs that you really cannot feel. How about having red painful welts raise up on your legs or elbows. Or a hundreds of water like blister looking pinpoints that come up on your finger joints, elbows and feet that itch worse than any poison Ivy or oak I have ever had. Or maybe the fun part of having a red angry inflamed blister raise up that is half as long as your forearm that itches but if you touch it feels like a thousand wasps stinging you at the same time. Or how any little illness or infection causes my body to over react and attack not only the illness or infection but it attacks and damages itself. How it invites its other autoimmune and inflammatory disease buddies to come party at their house which is your body. My heart breaks for those who have lung involvement as they struggle for each breath.
The worst thing of all is this is for the most part a hidden disease. It eats away at the inside of us while leaving the outside looking mostly like it always did. You might ask why is this the worst part. It kills our self esteem our relationships with many of the closest family members. As I said earlier I missed my Grandson's first birthday but I was the cause for my wife to miss her grandson's first birthday. The countless other family events and outings where if I know if I go will be the cause of them slowing down avoiding doing certain things they want to because of their worry for me but in the end it was me that caused them to miss out. Or me just not going and them being mad at me because I didn't go but they enjoyed everything they wanted to do and yet twisting every emotion in me because I want to be there. The countless people, family and friends who say, "but you don't look sick". In the end, the constant feeling of betrayal of our body that is been eaten away but we don't look sick.
So my friends, This has been my life the past 10 years. My life because of this disease is frustrating, But I am alive! I can see! I can feel and I can love. Because of this disease it makes me "SEE" more clearly than I ever did before. It is the path I have been given and I will and have kept my focus on the positive. I will put the smile on my face even when I don't want to because each of us have trials and tribulations. Thank you for hanging out learning the down and dirty, readers digest version of how this monster inside of me and how it has affected my life both for the worse and for the better! 💜
~Ron