Like a hilly narrow lane full of pot holes and dead run over animals, riding the road that is Sarcoidosis, has hairpin twists and turns. The pain and discomfort it brings often feels like an on coming 18 wheeler. Every morning you wake up, grip the wheel and hold on tightly, attempting the best you can to swerve and weave your way through the traffic of the day. A sour stomach. Aching joints. Chest pain. Coughing. And all you see ahead of you is more traffic. Headaches. A raging fever. Bone pain.
Just as you finally get cruising along, aches and pains dulled for now, the traffic jam safely in the rear view mirror, you suddenly hit a red light. Brain fog. Nerve pain. Leg pain. And this light lingers. You wait, at first patiently as you watch others cruise past you. And you wait some more, eventually realizing the light is not changing. Heart palpitations. Back pain.You creep forward hoping against hope to trigger a green. To feel better.
After what feels like an eternity, the light changes to green and you’re on your way once again. Now late for the rest of your day, the rest of your life, you pick up speed and try to make up for lost time only to be side swiped by on coming skin lesions, rashes and blurred vision. The car is not totaled but the engine is stalled. Fatigue. This time you must pull over for help.
When help finally arrives, it’s not what you had hoped for. No knight in shining armor to rescue you from the daily grind of aches and pains. Instead what arrives is a dilapidated tow truck with an inferior towing capacity that barely manages the mildest of symptoms. Prednisone. Maybe methotrexate. Or if you’re super lucky, both! But you’re told it’s the best that can be offered at the moment so you don’t complain. You hitch yourself up and chug along.
Arriving at the garage for repair, you’re told the engine has been damaged and some parts can be salvaged with some work but others might need replacing. The cost is staggering and you’re not sure you can afford it. Yet, if you don’t pay the mechanic for his work, your car will never run again. So you do what you’ve got to do and you dig deeply into your pockets for spare change nearly unable to scrap enough together for the cost of the repairs.
After a long delay, missing many days of much needed work, your car is back on the road. And even though the mechanic did what he could to repair it and make it look like new, as often happens after a wreck, the car never runs as smoothly as it used to. But it looks good again so no one notices but you.
Each morning now, since the wreck, you get up, go out to the car and hold your breath as you turn the key. Will it start this morning? When it does you are both relieved and nervous. Relieved because now you can get where you have to go. Nervous because you never know what you’ll find on the road that awaits you. Will the road be full of pot holes today? What type of traffic will you find? Do you have enough gas to get where you have to go or has it been siphoned without your consent?
Riding the road that is called Sarcoidosis, requires a steely resolve, fit for a race car driver. It’s a road only a dare devil can truly navigate. Someone unafraid of the dangers and unknowns that await. “Sarcoidosis Road” is not for the faint of heart and requires a driver looking for adventure as you never know what is down the next turn.
Those of us who are detoured down this road must remember to watch our speed limit, conserve our fuel and get regular oil changes. We must keep both eyes on the road and never look in the rear view mirror because what is past no longer matters. It’s the present we must navigate, dodging and weaving the traffic in our path, all the while knowing we will never know what’s at the end of the road until we get there.