And It's About Time There Was Some Support For Cushing's!
Where to begin? I read many of the bios, and felt a bit of an outsider in that I don't pray, nor find any solace in any religious activities, *Atheist*. And, although I am a student of science, (veterinary), I'm not astute in my own illnesses.
I started in Boston, about 42 years back, and had IBS from the age of 3 to 19. I also had serious anxiety attacks, and the two were never considered partnered. (HEY boston, land of hospitals and research?)
Within years I had serious depression, to the point where I'd have major anger outbursts. So I got anger counseling. I also weighed in at 110lbs, although my entire life I had been chubby until I was in my 20's. Well, the answer was to take the anxiety and go into the Navy. It doesn't seem to make sense now, but wait.... it gets better.
I was in the navy from 82 until 85. Sounds like a short stint, because it was... too short. I have another genetic disorder that was diagnosed by a Harvard Med professor who watched me as I worked at Harvard Med's bookstore, the Coop. He came running over, and said he was in charge of Rheumatalogical Studies and Orthopedics. Guess that meant something to him, but not to me at the time. He asked me if I heard of Ehlers-Danlos and I said, in passing. So he asked me into his office, where I then became his test subject for a semester... He diagnosed me with EDS Type 3, and then when I was in the service, doing things like hanging off of sides of ships and painting them, and climbing up and down decks. It turns out when you have EDS and you do those sorts of things, you become a magnet to joint disorders. I had literally broken my back, and no one was even aware until an xray revealed I had two hairline fractures each in T1 and L3. All the ship thought I was faking the back pain. Right. I got an honorable medical discharge for a service aggravated illness. This is a good thing, later on.
Out of the navy, I lead a busy life, always working at least 3 jobs, stand-up comedy at night, and oh, yeah, earn 3 degrees, a bachelors, two a masters. I have continual just mental breakdowns. Just bad. Just awful. Just life destroying.
And I end up married to a guy who likes men better. I end up showing signs of more major depression and I finally find ONE doc who says, let's test you for other things. So it turns out the reactions I'm having aren't easy to figure out. And after the marriage ends for a myriad of reasons, (gee, guess?), I start having weird joint issues.
Not weird in that they painted themselves magenta and danced a macarena, but weird in that when I'd walk, they'd turn off, and I'd fall down, or drop something, or I'd have dislocations that never seemed to resolve. I gained about 20 lbs, and hadn't changed anything in my life exept divorcing the guy who liked guys. In fact, I was eating LESS, and exercising more, and took on 4 jobs.
I ended up on TONS of pain meds, and tons of steroids. I even moved to Vegas. The first few months here, I had NO health insurance, so no meds, and I dropped all my weight and was back to 123, and no matter if I had ice cream or salads, I'd stay at 123. My company laid me off to move to India, and I was having even MORE joint issues, to the point that I needed a cane to walk.
Then it got really weird. I couldn't stay awake during the day or sleep at night. I couldn't eat, and yet I was gaining weight, and went up to 130. Nothing at all really, and could have been due to my age.
Within a few months, I was unemployable. I ended up applying... and receiving the first time out... disability. It took two years, so I was on state aid. The state required me to have medical tests.
Shortening this up a bit. When Disability kicked in, and due to my work history, I have more money coming in than would authorize me state aid, (I made 12.33 too much). The disability agent said, Call the VA, and I was eligible.
See, navy good? Well, they took care of me all right. I was put on morphine, and steroids, and within 2 months I went from 130 to 181. The doc asked me if I was pregnant. I saw and endoc who said, eat less. My health advisor took my food diary and even came to my house to see if I was a liar, only to discover I eat NOTHING that could make me heavy, and certainly not enough to even gain weight. If anything, she thought I would be 111 lbs.
I am now on Morphine, Oxycodone for break thru pain, zocor, allergy meds, and oh yeah, chronic sinusitus means steroids too. They also had me on Depo. My gyno saw me and stopped it immediately, and ordered blood tests saying I had cushings, she knew it.
She called three days ago and said, YUP, but she'd give me details when I see her again, (JUNE).
The VA has me on braces, with a wheelchair, on meds for $8 30 day supply per med. Free surgery for the sinus issues, (more predisone), and anti depressive meds.... I'd be lost without them, but they JUST DON'T listen. They use their patter script. I've seen everyone.
Now I'm on the Medicare drug program with a company that is letting me see an OUTSIDE endo. So if anyone has ideas of someone in this area of the world, I'm all ears.
In the meantime, I am learning so much from everyone and I haven't even had to ask anything yet. I'm so deeply grateful Ms. McGraw was on that Discovery show. It may be saving me.
Boston born, and lived in Virginia, Florida, Illinois, Maine, NY, New Hampshire, (las vegas) New Mexico, Northern California, Southern California and I currently, for at least a few years more, reside in Las Vegas, NV.