When Chronic Illness Keeps Giving You More to Handle

Here I sit with smudged makeup that’s not for show. Smudged makeup cause no matter how hard I tried, I couldn’t stop the tears. I couldn’t shut my head up long enough to turn off the faucet to my eyes.

Fair warning: I am presently weaning off a medication due to the risk it may cause my heart, but weaning off the medication will cause me to be ridiculously real in my writing. So if you’re looking for unicorns and rainbows, you probably won’t find it here. But you will find me being authentically honest.

With that being said, I say I’m an open book. So here it is, the newest chapter. It’s been 24 days; 24 days since the cardiologist was honest with me. But even at that, he still didn’t tell me enough. He left me with a diagnosis and explained what it meant, leaving me with an animated visual in my mind of how my heart is functioning. But attending a medical appointment in a pandemic meant being alone and stressed about being there in the first place. And being alone, I failed to ask all the right questions, or any questions for that matter, despite him giving me plenty of opportunities.

But now I have questions, questions like: Can this be reversed? What is causing this? Will it shorten my life? I hear his words echoing in my mind, “Your heart is strong. But you have diastolic dysfunction.” And at first I simply thought, “Yes, I know that,” because I read my own echo report weeks before. And I had seen “Diastolic Dysfunction, grade two” but for some reason I focused on the “Left Ventricle Hypertrophy” when researching the results. But he broke it down and explained what it meant.

To be honest, I was at first happy he finally told me instead of skirting around discussing the report. Now as the days have passed, my heart has found itself in an emotional state of shock. So I thought, “I have two Hopkins appointments coming up. They’ll explain it better and I’ll ask for stronger treatments and that will make it better.” But what I got was an answer I didn’t want.

I’m still an enigma.
“Enigma.”
Sidenote: I kind of hate that word now.

They believe I’m already on possibly the best treatment for this autoimmune disease that is hopefully helping to slow the disease down. But at this point, that statement is simply theoretical. However, Hopkins now wants to do an entire genome sequencing on my entire family because whatever this rare disease is, is ultimately causing all the problems. They told me it seems to parallel scleroderma, yet it’s not scleroderma. And for my heart,  there’s two medications. One I can’t take because having POTS as well means regulating my fluids carefully, I need fluids for POTS. I need less fluids for diastolic dysfunction. The suggestion of a cardiac second opinion was considered, but again, there’s this thing called a pandemic sort of halting everything.

The lack of answers and lack of patience on my part has me progressing through multiple stages of grief. And currently, I’m stuck on guilt. Here I am sick, at no fault of my own. In fact, I’ve been pushing for answers, for treatment, for acknowledgement, direction for the last 13 years. I’ve pushed past the collection of doctors who insisted there was nothing seriously wrong with me. But my gut told me otherwise. My gut told me to not stop until I had my answers, until I was happy. And finally, after 13 years of the chase I am on a treatment and have a panel of doctors who believe me, which trust me means a lot.Except now this is one more thing and it’s kind of a big thing and I am kind of too young for this– which along with “enigma” I hear a lot.

So here I sit at 1 a.m. because despite benadryl and melatonin, I can’t sleep cause my body is exploring these stages of grief, and it’s currently overflowing with guilt. The guilt then shifts to anger because why? Why, one more thing? And freeness to speak please?
Here comes the statement/question that maybe we’ve all felt at some point in our life, “why me?” I truly hate thinking it, let alone saying it out loud because it doesn’t feel like me to say it, but … “Why do I have to be the sick mom?”

I’ve already lost so many opportunities with my girls. However, I had finally come to terms with that and was enjoying and thriving in the quiet moments at home with them. I have not just accepted but embraced the fact that it’s not about the things we do, it’s about the love we have. And I have so much love for them. If love alone could keep my physical heart going I could live forever. But in this life the human heart cannot survive on simply love alone (though it certainly helps).

So now it feels like my body has moved up my expiration date. And I’m not ready, not even close. So this is the storm. Storms come and go in life and that’s never going to stop. But after a storm, comes that beautiful smell of cleansing. And sometimes, the storm leaves behind a little gift, a rainbow. And that rainbow helps you to forget about that storm, at least for a moment. Hopefully when the thick of this pandemic lifts we’ll move forward toward a better answer than what I have right now.

I can’t stay stuck. I won’t stay stuck. There’s still more rainbows to see.