Monday, April 2, 2012

Day 2 of the Cushing's Awareness Challenge: Vituperation

I want to re-post something I wrote June 30, 2008.  It is as true today as it was then.  And I still feel as strongly about it as I did then.  

Vituperation [vahy-too-puh-rey-shuhn, -tyoo-, vi-] is.......

...what I want to spew when I think about how long it took me to be treated by doctors for the Cushing's Disease I had for at least 25 years (probably more) before anyone even checked to see if I had it. My problem is I don't know to whom I should spew! Medical schools? Doctors? God?

I had problems keeping weight off even in college. Well, even before that, but college was the worst. I did gain the freshman 15 but waited 'til my sophomore year to do it. I was always a late-bloomer. ;) In my junior year, I started running daily during the week (5 times a week) with a group from my dorm. Why was it so hard for me and it got easier and easier for them? It never got easier for me. I followed this trend with exercise for many, many years. Periods of exercise followed by periods of pain. What I didn't know then but know now is that I probably had cyclical Cushing's even then. In case you don't know, high cortisol (which causes Cushing's Disease) also causes muscle wasting.

I got pregnant with my first daughter at the age of 24. In the 7th month of pregnancy, I had terrible pain and she quit moving. I had a non-stress test and was told she was "ok". At 7.5 months, I went into labor. My daughter was premature, but healthy. She got to come home at the huge size of 4 lbs. 15 oz.

After the birth of my daughter, I had a hard time losing the weight. No, I wasn't as active outside the home as I had been, but I sure was a lot more active inside. And I thought I was supposed to lose weight when I nursed. That didn't happen. I remember a period of time when food was actually abhorrent to me, too. Eventually, I tried every decent diet under the sun including counting calories. I went to a nutritionist. I went to Weight Watchers. Topps. Tried the Atkins diet.

I went to my doctor. He laughed at me and told me that was what happened when one had a baby. "Eat less and exercise more." Yes, I know...but.... And there were no "buts" as far as he was concerned. And I didn't know any better, so I figured it MUST be my fault. Doctors were always right, right?

I always had very prominent clavicles. That is, until I woke up one morning to realize there were two "lumps" where those clavicles used to be. That worried me. Because I'd had several pre-cancerous places removed from my back and neck area by the time I was 25, I thought the worst. At my next visit to my doctor, I pointed them out, anxiously I might add. He laughed. He laughed at me. He laughed about me to the nurse. He laughed, again. "Those are nothing but fat. Not to worry!! Lose the weight." And he was gone.

I had my second child at the age of 27. She was one month early. The funny thing with that pregnancy was that I actually lost weight for the first time since the birth of my first daughter. When my daughter number two was born, I actually weighed less than I did when I got pregnant. And I had no clue why. I didn't have morning sickness at all. Frankly, I'd had morning sickness when I wasn't pregnant. guessed it....I started gaining weight after she was born. And I didn't eat differently, I was even more active with a baby and a three-year-old. I also breast-fed her.

I eventually weaned my younger daughter at 14 months. But my milk didn't dry up. It didn't dry up ever. It was less at times and more at other times, but it never totally stopped. So, when I pointed that out to my new doctor, she said that happened after having babies sometimes and not to worry about it. When I pointed out all the problems I was having with what I now know was a mild case of Hidradenitis suppurativa she told me to use a certain brand of antibacterial soap. When I asked about my increasing edema and joint problems, she tested me for lupus. With my increasing bouts of insomnia she told me to take benadryl.

Year after year, doctor after doctor did not believe me when I said I really did try to eat right and could not lose weight. Year after year I gained more and more weight. In 2004, in desperation I found a doctor who would prescribe phentermine for me. I did lose weight, for about 4 months. I ate next to nothing. I lost about 40 pounds, but felt terrible. Then, I started putting it back on. Still eating less than 800 calories a day, I gained weight. Swimming at the Y every single day and eating less than 800 calories a day, I gained weight. Fatigue overwhelmed me but I was not able to sleep at night.

It had to be my fault. Right? The doctors said so, even with all this.

I had no idea my red, "moon" face meant anything. That having babies prematurely was a symptom. Obviously those doctors didn't either. I didn't know my striae were possibly due to something other than pregnancies. Or that those fat pads were called supraclavicular fat pads. No, not then I didn't. Nor, obviously, did my doctors. Or they thought I didn't need to know.

I started having problems with a "lump" in my throat, pain in my flanks, and pressure that was unbearable in my "middle". My arms and legs were in constant pain, although varying. Sometimes it was joint pain, other times bone pain. Fatigue was my master. Insomnia was my burden. No one should have to live like that.

I ended up in the ER with some of that awful pain/pressure one day. My good friend from work took me. We were afraid it was heart related. No, they found nothing but kidney stones with all the testing, and those weren't moving. In desperation, my dear friend asked the attending who could help me. He said he couldn't answer that. She said, "Who would you recommend for your wife?" He did answer that. Dr. M.

I went to see Dr. M immediately. I really don't remember a lot from that first visit other than she said the word "endocrine" after expressing milk from my breasts to culture. Endocrine. A word. The queen of internet research came home to her throne and googled "endocrine", "galactorrhea", "obesity", "insomnia", "fatigue". Guess what came up? Cushing's. Yep, right there I was. There was a picture of my body as it had become. OMG, there I was! And all my other symptoms which I had no idea were related to the "endocrine" word.

When I went back to see Dr. M, I told her what I'd found. I'd also found the website. I had read what tests to run. And when. Dr. M was actually a trooper because I inundated her with emails of articles, research, etc. I begged for certain tests and she complied. She wrote letters of reference to a major hospital/testing center for me. And I got my first high test almost immediately. But we didn't realize that until months later. No, she didn't know that midnight serum cortisols were supposed to be close to zero, and I took her word on it. That 9.6 ug/dl that was "in range" for an afternoon cortisol wasn't done in the afternoon. The labs didn't know how to label, so just left it as normal.

But I get ahead of myself. Dr. M asked me to go ahead and talk to a bariatric surgeon because I had mentioned that possibility myself when I first saw her. I hadn't done my googling then. And because she asked, I went. To make a long story short, he told me I had to lose 30 pounds to show my commitment before he'd do the surgery. I asked if I had an endocrine problem if the surgery would work. He wouldn't say. I then said, "If I could lose 30 pounds, I wouldn't be here." He told me, and I'll never forget this, "You can't put on what you don't put in." When I tried to explain how I'd tried to lose weight, he walked out on me. Left me. DISMISSED ME.

That was probably the most demeaning, devastating visit with a doctor I have ever had. There is no way I can sit and type about all the visits with all the diatribes, but this one tops them all. There is no way I can get across the nature of this visit, my last hope, and how much I really did want to lose the weight. I was sincere, I was concerned, and I knew I had a problem. Why else would I put myself through that? And there is no way to show the snide, arrogant way this doctor talked to me.

I admit, I'm not a doctor. But, I do have an IQ that's up there, I can read, and I darn well know my body. I can hold an intelligent conversation, and I can look anyone in the eye when I do it. I expect that from my doctor. At least that. And I expect RESPECT.

I haven't told even half of my story. Not by a long-shot. The kidney stones, the ovarian cysts, and more. But I have told enough to maybe enlighten you why I am angry. I had Cushing's Disease for almost 30 years. If even one doctor had known the symptoms and had tested me for it back when it started, I may have never gotten so heavy. I might have had a more "normal" life. I might have had a lot less pain. I might have actually been able to walk and run like a normal person. I could have had that.

If just one doctor reads this, please hear one thing. You need to listen to your patients. I know you get some wacky ones. But you know, it's sad that your diagnoses and evaluations are colored by that. We are real people wanting to live real lives. Your profession took that away from me because no one would listen. No one would put it all together. No one took the time or cared. And I tried. I tried so hard.

Yes, I'm angry.

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  1. I am so moved by this Robin...there are not enough words. Just so powerful.

  2. That is amazing, and almost describes my own story to a "T". Wow wow wow.

  3. It descibes my story, I have had both adrenals removed and piturity 4 years ago, and am now having tests,mri scans to see why I am producing high levels of cortisol yet again. flank pain and muscle weakness is as bad as before I was diagnosed.



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