This is From the Introduction Board:
Well, I am glad there's this nice color thanks MaryO! My name is Adrienne, aka Adrie, and I first joined MaryO's last boards around 2000. I was incredibly active throughout my diagnosis process but got burned out in all things Cushings, so I was offline. For years. Then a doctor pressed on my back during a routine examination for the county medical program (2006) and I ended up on Methadone and Dilaudid for ten years for pain in my back and hips, which have avascular necrosis from steroids and need replacing. So I got back online about four years ago now. For good. There's no more pain medicine I can take as I had a major pulmonary embolism in April 2018 and am on Xarelto, and I have one kidney and kidney disease, so yup no NSAIDS at all they are death for me. Looking into SI Joint injections for a referring bursitis in my BUTT that hurts like...bleep.
I have missed being around people who know what it's like to suffer from something most people 'get over' relatively quickly (a few years compared to my 25 sounds quick to me). I am 47 now and I am learning some of the new research that happened while I was 'gone' and I am confused, shocked, amazed, and I could use some guidance. I know my medications well and can help peeps understand some of theirs through my experiences, but Korlym? Like, OMG, used to be only Keto and... well, I need to learn more. I LIKE learning more and I like to be of USE to peeps through that knowledge. I got a lot to learn again.
Point is, I can't really tell you what is wrong with me. I had my kidney out when I was 17, and THEY NEVER TOLD ME they also took my adrenal gland. I was given no steroids. I had a crises a week later, but it was chalked up to an allergy to Compazine. Yes. My family and I didn't know better because we thought I had both adrenals. By the time I turned 22 I was incredibly sick, a VIP at the ER, worked two full-time jobs, and ended up on steroids for recalcitrant adult-onset asthma (but in hindsight it was really bronchitis and pneumonia). I never got off steroids again. From just a Medrol Pak I was immediately cushie. I wasn't diagnosed until 2001 with Iatrogenic (doctor-caused)/Exogenous (steroids) Cushing's Syndrome.
Only now I am complete AI (adrenal insufficient). I mean, my one adrenal puts out mineralcorticoids, but I am believing it to be damaged from decades of kidney infections, as per symptoms and some research by Laws. More research needed! More testing needed. Doctors are not into researching with me. It is up to me to change their minds 🙂 (I recently learned about the Circadian Rhythm steroid dosing schedule from the UK peeps, and I have employed their formula. I went from 2XDay Hydro to 4XDay Hydro. Many things have improved, some have not, and my leg swelling is much worse...)
So, I am long-winded. I have a hard time being succinct. I'm almost impossible to piss off or take offense lol. I've developed a thick skin, but I am still basically empathic when it comes to peeps dying and suffering, and that's the hardest part of being around other sufferers. I still miss Sue, and reading the memories board just confirms how many young people are passing 😞 BUT I will keep my chin up!
I write on the side, not for profit, at a writing site I have enjoyed re-joining these last four years. I Blog about my illnesses, I educate peeps, I write poetry, and I fart around with graphics. I just finished my opus: a fully updated and reworked autobiography. I might put it up here to replace my old bio... it tells the progression and timeline of events medically, but also personally: because I think they're quite related (stress and stuff).
I left Southern California in 2003 and live in Southern Oregon now. In a forest 😄 You know, with trees? I like trees. And 2 acres. And 12 cats and 2 dogs. And rotten neighbors, despite the fence and property layout GRRR. All my private disability goes to my healthcare and I do not stint on it, but it's ridiculously high, no HMOs here just PPO plans.
So, happy to meet you again, or for the first time! I am on Facebook now *cringes* and it's possible it doesn't really hate me, as I learn to navigate it better... Adrienne Stevens. That's not my last name, it's a fake!
PS: I have some (what I call) brain damage; both from the 400+mgs hydro equivalent 2-month dexamethasone suppression test from hell (at the beginning of this diagnosis in 2001) and the ten years of opioid pain medication. Being succinct is one of the skills I lost, but I am trying, believe it or not... I also forgot how to cook, clean, and make decisions. Mostly back to normal now, but there's a few deficits I didn't have before. Not that I was normal before- I'm a little left-of-center I think 😄 Just sayin'.