And It's About Time There Was Some Support For Cushing's!
I want to start off by saying thank you to all of you who have had the courage to tell their cushing stories. Hearing so many differet stories really inspires others to share theirs as well.
My name is Veronica I'm 31 years old. My nighmare started in the summer of 2000.I was attending a community college and working part-time. I was the picture of health. I was a size 9-10 and very comfortalble with that size. I enjoyed working out daily. (enrolled in a class for credit) I just remember I woke up one morning with rashes around both my eyes and face. I decided to go see my PCP (Dr.) He said well clear that right up with!@@##^$% and some almost immediately the rashes subsided. I thought that was the end of that. When I look back at pictures from this time I notice my cheeks did start to swell and then they would deflate. Well like clockwork I found myself breaking out in more dermatitis breakouts every 2 months. This went on for the next year.
I found myself in the ER more than I wanted too. One ER dr. noticed the bad infections on both my areolas, and mentioned it was not dermaititis but that it was a fungal problem, so he prescribed fungal cream and antibiotics.
During this year I was referred to a Dermatologist who diagnosed me with atopic dermatitis and prescribed me protopic and other steriodal creams. At this time I knew nothing of the dangers of these drugs. Every time I was prescribed oral steriods or given hip injections of steriods I was also given a prescrition for antibiotics. There where short periods where the skin would clear, but never 100%.
In 2002 I relocated to Vancouver, WA for a new job. I at this point was fed up with all the Dr. visits and drugs that did not help. I began working and had been laid off after the Sept 11 attacks. This really was a stressful time for me. I started breaking out all over again. I started seeing a Dermatologist in Vancouver at this time who started me on UVA/UVB light treatment, but this wasn't working either. He also gave me more atopical steriods to use.
At this point I was very very depressed. I didn't know what was happening to me, I used to be so healthy and now I cant shake all these skin infections. I decided to see a homeopathic Dr. in Portland, OR. He tried to help and recommended not to use any more drugs so I obliged. I kept trying his treatments but saw no change. Meanwhile I was turning into some kind of scaly rotten walking skin infection. I had no choice but to go into the ER at this point. Once again I was given oral steriods to clear up the matter. I could not have another hip injection because I had already had the 4 maximum during that 1 year alone and the ER dr said I could not get any more of those shots because it could be dangerous. I was never told what could happen, only that one cannot exceed more than 4 in one year.
Once again I was put back together again. My face after this dose was very swollen and I looked like a chipmunk. I started a new job that only lasted 2 weeks. I had to take medical leave because the rashes started up again. I was severely depressed by now and everything I ate or drank hived me out.
By this time I could not afford to pay my bills. I had to move closer to family 3 hours away. It's now 2003 I'm relocated again with my 2 daughters and my health is getting worse and worse. During one of my severe all over body rotting. I was driven by a family member to the local ER. They gave me solumedral IV. This had never been administerd to me before. Shortly after this episode I gained a total of 75lbs in less than 6 months. My body was covered in stretch marks and my face and neck were constantly oozing a yellowish fowlish discharge. I slept like no one I knew, I was angry, irritalbe, depressed, obese, and had the worst skin rashes you will ever see.
In October of 2003 my daughters grandparents offerd to take me to Mexico, to see a Dr. there. I was so desperate I said please!!!please!!! take me. I had only talked to my ex inlaws over the phone in the last year.
When I showed up at their door step, I was not recognized. This was really hard to hear, but I'm glad they were honest. They asked me what happenend to me. All I could say was I blame all the steriods I had been given. At this time my family didn't know what the hell was wrong with me and tried to be supportive as much as possible. They all pitched in money so I could go see this Dr. in Mexico.
This was the first Dr. who offered me any hope. He said I was lucky to be alive. I took him some before and after pictures. He said he could fix my mess, but it will take 1 year and alot of work. I at that point cried and could not belive something could actually be done. I decided to move to California so that I could be closer to him for treatment. My eldest daughter stayed behind with relatives, and I took my smallest child with me. This was so hard for all of us. I moved their with a relative March 2004. By this point I decided to seek local treatment from a local dr who practices alternative/medical practice. I started working with him.
I showed him pictures and told him I felt my problems were all induced by the steriods. I became so desperate by this time I got onto the internet and became a research internet junkie!!!!!!. I knew I had to find out what was wrong with me. One day I came across a website with a picture of a body that looked like mine,so I printed it. I took it to my dr but he didn't pay any attention to me. He sure wrote it on the diagnosis though. 8 months seeing this local Dr. and trying different herbs and nutritional supplement were not aggressive enough for me. I was still on prednisone and trying to get winged off.
Jan 2005 no longer taking prednison of zoloft for the hives. I am the 100% picture of a Cushings person at this point. In July I insisted to my Dr. to run my hormones through the lab. He was reluctant but I insisted. I also told him I wanted a refferel to an Endocrinologist cause I suspected a hormone problem. Lab results came back. I has high cortisol levels "Bingo" My vitamin D levels were also low. My Dr did not look very happy at this point. COULD IT BE CAUSE I FOUND THE PROBLEM BEFORE HE DID!!. I said to him "Dr" what action would you have taken, after discovering high cortisol? He said he would have refferd me to an Endo.
I started seeing an Endo in Palm Springs who does not have any experience with cushing's. He did all the screening process. 24 hr cortiso,dexamethasone suppression test, MRI, and other hormonal test. At this point and according to this Endo, he thinks I have a pituitary tumor or an ectopic one. He is referring me to a cushing Endo specialist at Cedars Sinai in Beverly Hills, CA I'm just waiting for my insurance to authorize.
I'm so exhausted.......I'm sorry for writing a book here instead of a biography. It just feels good to share the nightmarish story. Thanks for letting me share my story.