HI!
I had Cushings symptoms for about 20 years (I am 43) before I finally had surgery at NIH on August 29, 2012. Before 2 years ago, I had never even heard of Cushings. Without the aid of a very perseptive medical accupuncturist, I would probably still be suffering today. Perhaps, if I had heard about it sooner, I wouldn’t have suffered for so many years. My goal is to help as many people as possible in battling this devastating disease.
I am so happy that I have a new chance at a real life! Feel free to contract me. Below is a piece I wrote before surgery and my stats.
🙂 Marian
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My Experience with Cushing’s Syndrome
The changes came about gradually. So gradually, that it is very difficult to pin-point exactly when the overall change became larger than the sum of individual changes and thus was something that was difficult to ignore. For my whole life, I was “Marian” and then one day, I was someone else. I had become someone unrecognizable: the “Not Marian.”
One of my favorite books, “The Tipping Point,” by Malcolm Gladwell, expands on the premise that little changes make a huge difference. Individually, the changes I experienced were easily explained. I was tired. I had nighttime hot flashes. I gained weight. I was moody and forgetful. My sight was blurry. I often typed or said the wrong word. I couldn’t sleep. I couldn’t remove my rings without soaping up my finger first. One day, I forgot how to roll down my car windows. I experienced moments of panic where I was driving and couldn’t remember what road I was on or where I was going. When I mentioned any or all of these symptoms in a group of women over forty, I heard a cavalcade of similar stories, usually expanding into an animated discussion centering on menopause and aging.
I also noticed that I stopped getting compliments. People, except my amazingly supportive husband, just didn’t say that I looked nice or pretty anymore. I tried not to be vain; I thought that I probably had just reached the point where I aged enough that I no longer was going to get the attention that I used to get. I had “hit” the proverbial “wall.”
It is easy to look in a mirror and only see a stylized version of yourself. But, photos are more precise. For some time, I had noticed something “off” in the photos that were sometimes posted of me on-line. They just didn’t look like me anymore. I untagged myself and brushed them off as bad photos with only the vague realization that the “Marian” I thought I was, was no longer me.
My epiphany came in the form of the photos on my work identification cards, taken about three years apart. Not only do I look like I have aged about ten years — I also look completely different. My face is much fuller, my features are distorted, my eyes are sunken, my hair is stringy, and my skin is sallow. I look like a bad photo copy of my former self.
Now, I realize that how I look is a small part of who I am as a person. However, it is also the part of me that everyone sees first. I remember being in the dressing room at Target and catching a glimpse of the “Not Marian” in the mirror. I was astonished at my reflection and cried.
A friend suggested that I just realize that this “Not Marian” is who I am now. I don’t think that this bad advice; it is just advice that is easy to say, but difficult to follow. I often compare my sense of futility regarding my desperate attempts to become “Marian” again to Hercules’s labor of cleaning the Aegean Stables. I exercised four or so times a week. I went to a diet doctor. I ate under 1200 calories a day. I bought new clothes. I got my nails done. Despite these efforts, I only saw minor improvements in the way I looked and felt. I still felt as though I was always wearing a rubber suit over my skin that covered my former self.
In many ways, the diagnosis of Cushing Syndrome was a relief. Finally, there was an explanation for the way that I felt and, though serious, Cushing’s is generally a completely curable disease. But, knowing I have Cushing’s presents another problem, when is it appropriate to tell peop
My initial inclination was to tell everyone. I wanted to explain the difference between the “Marian” you remember and the “Not Marian” that you see now is a result of this rare disease I have. “It’s not really me! It’s the Cushing’s.” I tried it a couple of times with mixed results.
Mostly, people said that they had not noticed a significant change in the way I looked or behaved. My closer friends were more tolerant, expressed concern, and asked questions. The reality is that nothing (except maybe vacation recaps) is more uninteresting in light conversation than talking about illnesses and ailments. And though it was significant to me, the changes were not readily observable. So, I will try not to talk about it.
I know that my upcoming surgery is not a panacea, though it is nearly impossible not to view it as such. I have scrolled through hundreds of websites and blogs looking at photos and reading synopses of people before and after treatment. I have connected with someone who was successfully treated for a Cushing’s syndrome through Cushing’s Support and Research Foundation. Ultimately, my hope is that the loss of me is only temporary and that through successful treatment of the disease; I can begin to feel like “Marian” again.
STATS
July 2010: MRI at Kaiser showing a pituitary adenoma. High 24 Hour cortisol. Low DHEA. Low ACTH. Referred to NIH.
Late July 2010: CT at Kaiser showed “suspicious” tumor on left adrenal. (High HU, e.g. cancer)
Sep 2010: NIH testing.
Nov 2010: NIH re-read the results of CT and MRI. NO pituitary adenoma and BENIGN tumor on left adrenal.
Dec 2010 – April 2011: Unable to replicate high cortisol test at NIH. Diagnosed as pseudo Cushings due to stress. Yearly follow up recommended.
April 2012: Follow up testing at NIH. Cortisol is high. CT of adrenal tumor is stable.
June 2012. Second cortisol at NIH is high. Diagnosis cyclical Cushings. Will not operate. Note that I do not look like clinical Cushings, so that was part of the problem.
July 2012: Bone density loss of 25% in three years confirmed through Kaiser. I happened to luckily have had a previous bone scan so that they could compare. The current bone density scan wouldn’t have been enough because I didn’t have osteoporosis yet.
Aug 6, 2012: Referred for surgery on Aug 27.
Aug 26, 2012: Enter NIH. Surgery postponed but I can’t leave because of the testing!
Aug 29, 2012. Surgery! The surgery itself was easy.
Sep 2, 2012: Left NIH
Returned to work half days Sept 4 and full time Sep 10.
What do you do for self care? Please tell me in the comments.
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