Having realized my body hates itself. Not just a little but a lot!. It is not pain so much as the unknown condition. There isn’t a diagnosis called “undiagnosed”. Undiagnosed is nothing. The inflammation. Too; nothing. Sleeplessness & sleeping 18 hours daily; both zip, nadda, nothing. My body has been screaming at me years, actually 50 years. Yes, I am 62.
The year was 1972. I was a 12 year old girl with ambition to be just like my older sister. We shared a tiny bedroom in an old farmhouse. Of coarse I was a pest being the little sister. There is something to be said for that? I was third out of 7 kids. My parents were
good GREAT Catholics. We piled into the station wagon to attend church weekly. We had to go on Saturday night because Sunday services were too crowded. I realize exactly where I learned to hate crowds! Same with malls, fairs, anyplace with crowds! Thanks Mom!
My sister, Mary, died at age 14, leaving me as an unexpected oldest daughter. Get this; she died from inflammation caused by a heart virus. The rest of us had strep throat, Mary did not. Oh she definitely had the strep virus but it went to her heart. My mother never brought any of us to the doctors, ever. This was her fatal decision she has to live with. Thanks Mom. I really missed out on being a little sister tho.
Along with inheriting a fear of crowds I also inherited other hidden defects. OK not defects but chromosomal defects. Each was discovered accidentally. 1. Factor V Leiden is a blood clotting. Funny thing thing about that… my pathological liar daughter said she discovered she had 2 Factor V Leiden genes but later she said “What is that?” Just taught me to never, ever believe her. Currently, (as of the last time we spoke 1.5 years ago) she is pushing her narrative of “I have Hypermobile Ehler Danlos.” (Also know as HED) Naturally she picked an illness which does not have a blood test to confirm. It is also the top ten on Reddit’s https://www.reddit.com/r/illnessfakers/ sub.
GREAT Munchausen-like originality!
Yet, her lies have changed how I view all medical. I JUST DON”T CARE! I ignore her complaints by ignoring her. She IS litterally a pathological liar. (Bit of advice- personalities are inherited. Her father was the same. That’s a whole blog unto it self…. The title should be the jerks I met in life.
NOW. I can’t ignore symptoms especially at my age. What age is actually right to finally complain about an invisible chronic illness? It’s not as if at the magical age of 62 I suddenly had an epiphany and decided to get tested for lupus. Over the years I’ve been tested for every single illness which was causing inflammation. Not a single one was positive. Had I remembered when I was in my 20’s I had the butterfly rash at the same time I was covered head to toe with a rash so itchy, i could have scratched my skin right off!!! Finally found time off work to see a dermatologist. His words “you are allergic to the sun.” went away as fast as the rash as soon as I took prednisone. In my brain I thought; ‘seriously who is allergic to the sun?” ME. i am allergic to the sun. Why not? Feels like I am allergic to everything anyway.
12 years ago I was referred to a rheumatologist at the Brigham & Woman’s hospital in Boston. Naturally all my bloodwork except inflammation. As always those were always off the charts. He treated me with prednisone. For 2 years the inflammation was kept away. Until he found the genes for hereditary hemochromatosis. The symptoms can overlap or cause what I was experiencing.
Getting cancer soon afterwards stopped all the wonder drugs he had given me to slow the inflammation. He was correct stopping the medications even though they were helping because hemochromatosis can damage the liver. My liver was already in trouble. (Currently my liver is in best form! 😎)
Ever feel so tired nothing matters? 10 years passed in an instant. Suddenly there’s a pandemic with a stay home order. I already stayed home. No biggie. At the same time I knew it was time to request the same testing as before. YES!!! I HAVE LUPUS!!!!! Should it be as large as life or even deserve 5 exclamation points? BUT I feel defined, given purpose and mostly just a reason for feeling like shit 24/7. I can reason sleeping 12 hours a night is because I have Lupus. Same with arthritis and hair thinning. Yet I can also blame the same symptoms on the prednisone. My hair is thicker that ever from prednisone!!! Sleep? Who need sleep? Arthritis should never have begun in my late 20’s tho. 😖
Wait a second.. I have what? Lupus? What exactly is it? I mean other that the butterfly and the color purple?
I try to keep my blog, especially the ones about me to 6 degrees but as usual I ran over, again. 🤗 Today I might be Lupus but tomorrow? Who knows? Love always wins!