It’s Cushing’s Awareness Day 2016. I keep thinking back to the beginning of admitting that I was physically ill – no small feat in my life. You see, my adoptive mother raised me to not be “weak”, a “hypochondriac”, or, God Forbid!, a fat woman who depended on anyone but herself – afterall, we all know that no one wants a fat woman wink emoticon .
In 1998, I was required to have a physical for employment. The doc said that everything looked good, my thyroid was a little high at 10 but, that he’d keep an eye on it, not a big deal. Two years and three properties later, I was officially diagnosed with Hashimoto’s hypothyroid with a TSH 103.8. To give you an idea of the severity, the range used at that time was .5-5.0.
Anyhow, my diagnosis date was July 5, 2000. I’d been told that the weight gain of 30 pounds would drop off of me quickly and that I’d need to find an endo. I saw Dr P at John’s Hopkins who weighed me, took my history, and ran some bloodwork. At my follow-up appointment 2 weeks later, I’d gained 20 pounds. He wheeled the stool that was near the scale down the hallway into his office, told me to sit on that, not his chair as he’d just re-decorated and didn’t want me to break said chair. I did as I was told. As I sat there, stunned and ashamed, he told me that no diet would ever help me, as I’d proven will all the diets I’d been on and that I needed gastric bypass surgery. I drove home in tears and never went back to that doctor.
I’d looked up my symptoms on-line, Cushing’s Disease. It was described as a rare disease. I thought that I couldn’t possibly have it if it’s rare, besides, it only described me 1/2 the time. (The other times – Addison’s Disease – not likely either as I was fat.)
May 1, 2004, I’d started a position that provided health insurance. During those 4 years prior, I’d kept off a 60 pound weight loss but, I’d have episodes of gaining 20 pounds within a week or two and then losing that and a bit more only to regain it again. July that year, I’d gotten really scared because I’d gained that 20 pounds again within 2 weeks while eating 3 protein bars a day. I did look up my symptoms and again found Cushing’s and Addison’s. And, again, I pooh-poohed, it couldn’t be me, it’s too rare.
The rest of my story has been told and retold and told again. It’s the beginning now that I want to concentrate on today. I don’t know if things would have turned out differently for me but, going forward it may for someone else.
Cushing’s Disease is NOT rare. Cushing’s Disease is rarely diagnosed. Fat phobia is toxic, it is dangerous, and on a very real level, it can kill.
Thank you Harvey Cushing. Thank you Pituitary Network (♥ Bob heart emoticon the man, not the tumour). Thank you Mary O. Thank you Cushie community.