(Preface: I wrote this back in January of 2014 before I had a blog. This was one of the very first things I ever wrote about what life is like living with sarcoidosis. I posted it on my blog back in June of 2014 well before I had any regular readers but I’ve changed the title so that I don’t offend some of my current readers. In honor of April being sarcoidosis awareness month, I thought it might be appropriate to share this again.)
I don’t know a nice way to say this, probably because quite simply, there isn’t one but I find this disease to be a sneaky little demon.
Why do I say this?
So many reasons, but let me start by saying that it’s unpredictability is nothing short of maddening. The path it takes twists and turns like a dangerous mountain highway. And sometimes it feels like the oncoming traffic is going to smack you squarely to your core.
First there is the path to diagnosis. Since Sarcoidosis is a disease of exclusion and a mimicker you can be told you have anything from lupus to MS to Cancer to name a few. You are poked and prodded and x-rayed and scanned. You are biopsied again and again. And then finally after you’ve been terrified out of your mind with worry that you’ve got the big “C”‘ you are suddenly and abruptly told…nope…it’s Sarcoid.
Then you get told that having sarcoidosis is a good thing. Really…you are! How about that. A good thing. A few months of treatment and you should be on your way back to a normal and healthy life. Hope soars that you will easily go into remission.
But you quickly figure out that your symptoms are not in fact easily managed. And the drugs they put you on have wicked and evil side effects. You either become a bloated monster, or in my case, a shrinking violet losing strength by the day.
The symptoms begin to mount. At first it was just a little shortness of breath. Now you cough all the time, get wildly unpredictable fevers, night sweats that make you want to call the fire department for relief as you feel the flames shooting out of your pores. And a fatigue that makes you feel like every single step is like trying to slog through a muddy field but the mud is waist high. Then a range of other weird difficult to describe aches and pains creep up on you like a child playing a prank you didn’t see coming. Headaches, joint pain, back pain, nerve pain, numbness, cold extremities and on and on.
Your doctors can’t explain these strange symptoms and sometimes they look at you like they don’t even believe you.
Then everyone tells you how great you look. They say well meaning things that actually cut to the core. Things like, “Gee, you don’t look sick”. Or my personal favorite, “Wow but you look great. How sick can you be?”
You begin to withdraw. Not because you want to but because the disease is having its way with you. You simply no longer have the energy to participate the way you once did and you realize people think you are faking it.
This is when the loneliness really sets in. You are entirely misunderstood by your doctors, your family, your friends, your co-workers, your neighbors, your pets….you name it…no one gets you anymore…some days you don’t get yourself. You wonder where you’ve gone and if you’ll ever be back.
Then suddenly you have a good day. You slept well, no night sweats keeping you up tossing and turning with covers on and covers off and covers on again after the sweat finally dries and you are left freezing like someone left you out in the cold without a coat or gloves. You have energy as a result of sleeping well so you decide to tackle a long overdue project around the house.
One of two things happens next; Either you get through it without incident and are as proud of yourself as you would be by your child bringing home their first A grade from school. Or half way through the project you realize that you bit off more than you can chew and yet another home improvement project only gets done half way. It starts to feel like your house might fall down around you. You never lived like this before this monster crept into your being.
If you managed to complete the project and are beaming with pride you start to, ever so subtly, fool yourself into thinking you’ve got this nasty disease licked. You start planning for the next day’s “To Do List” full of high hopes.
But when the next day comes, you wake up feeling like you were hit by an eighteen wheeler and realize how wrong you were. You tell yourself that you won’t ever let yourself get fooled again. Resolve in the knowledge that this disease is actually bigger than you are, you tell yourself that you’ve got a handle on it. You readjust your expectations.
More loneliness sets in as you realize that life is a house of cards…at any moment it could all come crashing in. You fight off depression determined not to let it take hold.
Then again, out of the blue another good day. This time it’s a trip to the doctor where you are told your CT scan or x-ray or whatever test it is they decide to give you that day looks good. You think, maybe I will beat this S.O.B. after all! After all, you are doing all the right things. You have changed your eating habits, you are taking your medications as prescribed, you are trying to exercise as much as you can. You have learned to listen to your body. You begin to feel like you are the master of the ship once again. Remission looks to be around the corner. Brighter days ahead for sure.
In the meantime, what you desperately fail to realize is that you have only grown accustom to your new normal. You are in fact short of breath all the time but you no longer notice it. You are fatigued all the time but you have learned to rest and begin to think normal means an afternoon nap for everyone! You have unknowingly put on those waist high boots and are in fact pulling yourself through the mud and the muck every day. It has just become normal. But you think you’re doing great and you’re so proud of yourself for overcoming the beast.
Yet when you go to your next six month follow up, take your pulmonary function tests or whatever tests you are given that particular visit, you learn just the opposite. You learn that despite a clearer x-ray, your lung function continues to worsen. Your goals haven’t actually changed at all. You are still in the same place you were when this sneaky little demon took hold. Now the most you can hope for is stability. Remission is no longer discussed. You can only hope to stay off oxygen as long as possible. The damage is done and it is significant. It cannot be undone. There is no healing in sight.
So eventually you realize that life goes on and so it must as should you, but this time you are sure that you will never let this sneaky little demon get the better of you again. You know once and for all this is serious stuff. You know once and for all life as you know it has changed forever.
This disease is a sneaky little demon!