Medical Update
My jaw hurts today. I’ve been clenching my teeth through the abdominal pain while doing my best to study and pay attention in my zoom Uni lectures. Today, those go from 10am to 5pm. I have been in insurance/transfer/records and testing limbo, in some capacity, since I was 18. That’s three years ago now. Mom has been fighting as best she can by my side to switch to a hopefully successful treatment (Entyvio) ever since I asked for it when I turned 18 and insurance wouldn’t let us try it. We’re just waiting for a call to get my first dose scheduled, but as of right now I have been without really any formal treatment. I am at about a 6-7 on my pain scale, and have been steadily resting there for a couple of days now. I’m needing the bathroom more and more frequently and am having an increasingly difficult time sleeping, sitting through (let alone participating in) a lecture, or studying for extended periods of time.
It’s getting more difficult to eat without pain, and my hands are once again constantly dry, my fingers and toes are cold all the time, and I’m often overall shaky or weak. My hands shook so badly while making breakfast this morning a jar of jam slipped from my fingers and shattered on the kitchen floor.
I say all this, because UC, and IBD is generally called an “Invisible” Illness, and I find that to be entirely incorrect to us who live with it and those who love us. I think “Private” or “individual” or “Isolating” are better words. I can’t be there for my family, my friends, my boyfriend, or any of the people in my life who I love and care about. Not because I don’t want to be, but because my body betrays me. I am gritting my teeth and pushing through, sleeping when I can, eating what I can stomach. These things take all of the time and energy I have. I am tired, exhausted beyond the capacity of the word, and I have no more to give to the people I love. They sit by helpless, unable to ease my pain. That is not invisible. It is illness. It is Autoimmune Disorder. It is disability, by definition.
I am not asking for pity or sympathy. I am asking for empathy from those who understand living in a failing body, I am asking for prayers in the process and success of new treatments, and above all, I am asking for grace. I am doing the very best I can, and I am sorry that it is so often not enough. I am also asking you to VOTE and vote for Biden, as otherwise, the healthcare and medical system will continue to fail me and my family and it becomes more dangerous and more difficult for me to receive any form of treatment or care. Yes, it really does impact me on that personal a level.
All my love, and thank you for reading this far/supporting me along my journey.
- Jay
