Living life with Sarcoidosis. What a strange name for a strange disease. I guess it’s kind of fitting that even the name is strange and out of the ordinary. Even the name makes people scratch their heads and go “What?” What, indeed! I mean what is Sarcoidosis anyway? An inflammatory multi-system disease? What does that mean? Truth is I’m still learning that myself. Hard to believe this journey started just 4 months ago. 4 months ago!!! The longest 4 months of my life………..
I have had so many X-rays, CAT scans, bone scans, PET scans, ultrasounds, MRI’s, Pulmonary function tests, bone marrow biopsies, Lymph node biopsies, stress tests, echocardiograms, EKG’s, ECG’s, Endoscopy’s, Colonoscopy’s, hospitalizations, IV’s, surgeries, doctor appointments, blood draws, medications, inhalers and whatever else my “brain fogged” brain can’t think of, it is almost unbelievable! And people wonder why I am so fatigued and exhausted that some days I can hardly get out of bed?
Oh yes the fatigue. My new “best friend.” With me every day of my life. Follows me wherever I go. I can’t seem to shake it. Relentless in its hold on me. Everyone gets tired I am told. Ha! Tired. That’s funny. I long for the days where I just got tired. When I just needed to lay down a while and I could be fully charged again and ready to go. Not like this. Not where I can sleep 12 hours and wake up and still want to sleep 12 hours more and then 12 more after that! Where does it end? When does it end? Does it end? Your guess is as good as mine. Truth is nobody really knows. Really? Nobody knows? Really! Nobody knows!!! This disease is so confusing, frustrating, downright maddening. Everyone is different so there is no magic formula for getting better. What works for one may not work for the next. Plain, simple, and UGLY truth. So at the end of the day I have 2 options. I can fight it or I can embrace it. Depending on whom you talk to I suppose both are viable options. Fighting only leaves me more tired. Since I can barely function as it is right now, I guess that means I embrace it. So embrace it I shall.
Ready or not, Let’s go!!!…………….Time for my “exciting new adventure” to begin!