The last few posts, while on a subject close to my heart, were just TCB. If you don’t know what that stands for, don’t take your youth for granted. I’ve not been well enough to write for the better part of a week. And I’m learning a lot, seemingly all over again, about my body and my health now that I am older. I can no longer get away with plowing through like I did the first several decades.
Those closest to me know that a few months ago I was told that I have a rare genetic disease, called ADA (or Adenosine deaminase deficiency) which destroys the immune system. I’d gone through another bout of Lyme and two sets of blood tests, and the doctor’s office called me in for a “consultation.” They wanted me sitting down to explain this anomaly. Apparently they had never heard of ADA either until getting the results back from Mayo and they were quite stumped by my response when they told me: I laughed out loud. A big guffaw. It wasn’t that I don’t take it seriously, but think about it – I’m halfway through my 71st year and they are telling me that I have a rare, life-threatening disease that might kill me – AND that I was born with it! Helllloooooo…..I WON!
Honestly, I suddenly felt like I had superpowers. But it did explain a lot, and I am just beginning to grasp the consequences with this last week, because what I am experiencing may be no more than your common cold. I tested negative for Covid and influenza, which is great to know; I’m not contagious. I was told it probably began as allergies and became a sinus infection, and I was prescribed antibiotics. But the past few nights have been pretty scary. Incessant violent coughing keeps me from sleeping, so I count the minutes on the clock adding them up to make hours, in an attempt to get to morning without having to call for an ambulance. The validating part of this diagnostic information is that I know that I am NOT exaggerating the pain or the seriousness of the symptoms. I record every medication I take at what time. I line them up on the dresser just in case I’m making a mad dash for help, or worse, that my son would be.
And for the record, I freaking hate drama. I do not want to be this person who is always sick and needy. I’m far less afraid of death. So that’s the other thing I do – I write love notes. I document my thoughts and feelings. I’m getting my things in order. I updated my will fast, and bought a final wishes planner called I’M DEAD, NOW WHAT? to record instructions for my only child. Last year my brother died in his sleep after a few days of “feeling under the weather”. He was 62; I was 70 at the time. It is entirely possible he also had ADA, and that a seemingly minor cold or flu was not taken seriously. We’ll never know.
Here’s what I do know: I’m not afraid of dying. It certainly wouldn’t be my choice at this time, but que sera sera…I AM, however, afraid of losing my sense of humor. It’s been elusive this past week. That’s when I know I’m really in trouble. When I become snarky with the people I love. Because when all is said and done…
Get a new toaster already! This one looks good from my Amazon affiliate link: https://amzn.to/46BPdDg, and for God’s sake, get yourself a final wishes planner: https://amzn.to/3LOyp26 Don’t leave it to your loved ones to have to figure out. That isn’t fun or funny.
A Painterly Home 