And It's About Time There Was Some Support For Cushing's!
I've had a gut feeling I wasn't right for a long time now. I'd always been a high energy active kid but around adolescence I began to notice changes. First, there was the tiredness. I chalked that up to the "Developing teens typically require more rest that your average adult" statistic. Then I started getting depressed, but with a history of family issues and abuse it really didn't throw up any unexpected red flags, even though my family was and still is in adamant denial of my mental afflictions. I even developed the habit of cutting myself and drugs as ways to cope. I was always a thin girl, never gaining a pound, and I didn't even break 100lbs. till well after my 18th birthday.
I'd never had any serious illness, but my immune system has never been exactly strong either.
Around 18 I started to suffer from unexplained UTI's. First sporadically, but after 4 years they were almost constant, and my OB was no closer to figuring out why. So she just told me "Oh, some women are just like that. Take this pill every time you have sex, and I'll see you later." I never bought that excuse.
Also around this time the tiredness was getting worse, I had frequent headaches (and MRI determined they weren't migraines), I started getting terrible PMS, and I rapidly started gaining weight. I was an emotional mess as well. But I also had no health insurance because I couldn't seem to hold a real job (fatigue and emotional strain playing a big role in that) so I couldn't obtain proper care and ask the many questions I had swimming around.
Then around last year, March 2003, (I was about 22) I seemed to just fall apart. I got terrible upper back, shoulder and neck pain, to the point I would go into muscle spasm. I grew to live off of Flexeril and Darvocet, and even then it hurt to breathe. Not to mention I had developed crazy panic attacks and was/and still is extremely social phobic and withdrawn. Finally, I went to the ER where they set me up to do X-rays. Only I never got them, because they told me I was 6 weeks pregnant. Even though it was a big complication in every aspect of my life, I was overjoyed, having a family is very important to me. But, for one reason or another, I lost the baby at 12 weeks, and I had to have it removed via D&C because my body didn't take care of it naturally.
At that point, my back had me pretty much incapacitated, I had episodes of insomnia, followed by extreme fatigue for days on end. My family by now had dubbed me a hypochondriac and informed me that if I'd just eat right everything would dissapear. I was taking about 8 vitamin supplements, it was hard to believe that diet was the one and only cause. It seemed like everyone thought that I WANTED to be this way or something. I was so miserable physically, and mentally, I literally just wanted to die.
In November 2003, I went to a new doctor who ran every bloodtest in existence it seemed. I had a real high white blood cell count, my cholesterol was 340, and my liver functions were abnormal. However, I didn't have HIV, Hepatitis of any form, lyme disease or Mono, and my thyroid was just fine. Diagnostic Xrays of my back were normal, and ultrasounds of my abdomen were fine.
I started to miss my period and my OB rechecked my thyroid, and prolactin both of which he claimed were fine. He ordered a ultrasound of my uterus and functions and no abnormalities seemed to be there either. He was about to induce my period, it had been 3 months, when I finally got it. Meanwhile, I was sent to a rheumatologist who after listening to me and examining my back and such, became convinced it was an endocrine problem, and even narrowed it down to Cushing's. That was the first I had ever heard of Cushing's or any other hormonal imbalance mentioned as a possible cause. I scheduled an appointment with and endocrinologist and came home to bulk up on my knowledge of the adrenal gland.
I was astounded at what I learned. Technically speaking I had experienced almost every textbook symptom of Cushing's, right down to the hump on my back that I had overlooked but the rheumatologist did not. It was then that I came across this website, and started browsing thru the true life accounts of Cushing's. I felt like almost every story shared was a mirror image of the past 5 years of my life. And I had almost believed I WAS nuts.
I called my OB to get his opinion. He shot it down immediately, and told me that its too rare, and most cases are diagnosed as children. He also advised me to lay off the reading, because he didn't recommend his patients to that, because they have nothing to gain but assuming that they have the worst possible thing they read. Hmmmmmm....It was a good thing I had read postings on this website, and I wasn't surprised to be shot down, nor was I any less convinced that I could be on the right track.
I finally saw the endocrinologist last week. Lucky for me, she's also a doctor at NIH in Bethesda, MD and has dealt with more than a few Cushing's patients in her time. She is convinced that the only profile it fits is Cushing's, as far as endocrinology issues were concerned. I had blood drawn right there, and I finished my 24 hour urine sample this morning. I'm now waiting for results.
I'm relieved someone finally believed me, and that I feel like I may have found a real answer to the past 5 years of my life. However, I'm terrified that somehow I'll be told, "sorry, not Cushing's, try somewhere else" and I'll be back to square one. I'm torn between frightened uncertainty as to how this is going to affect my life from here on out, and positive relief that I can finally say I know what this is, and that there are things that can be done, no matter what the final outcome may be.
As for my family, I'm not surprised that I still have no support system there, no matter how much I need one right now. I have a loving boyfriend, who I am so lucky to have, but that doesn't mean it hasn't taken it's toll on our relationship because he is my sole support system, and he has a life long handicap to deal with himself (osteogenesis imperfecta aka "brittle bone desease").
I am thankful however that I've been able to read and draw conclusions from the postings on this site, and I sympathize with anyone out there fighting this themselves, and I always have an ear to lend, because I know the value of just listening, even if the problem has no solution I can offer.
Kristina
