And It's About Time There Was Some Support For Cushing's!
I grew up as a skinny blond girl who never had to battle with my weight. At the age of 18 all that seemed to change in an instant.
Over a short period of 6 months I gained over 50 pounds! Once active and into sports, I couldn't even climb the stairs without losing my breath. My skinny oval face transformed to a fat round circle. My buffalo hump prevented me from standing up straight. I got stretch marks on my stomach, my menstrual cycle disappeared, and I started to get excessive hair growth in unusal places like my chin and my upper lip. I didn't recognize my self anymore. I was extremely embarrased to run into my old school mates and feared what everyone would think and say about me. I was tired 24/7 and could never seem to get enough sleep.
Ofcourse with all of these changes came depression. I hated how I looked and felt and would cry myself to sleep at night. I tried ever diet imaginable. Weight watchers, Body For Life, Jenny Craig, etc. I even went to a weight specialist and spent hundreds of dollars to have my weight monitored weekly and lived on one bar a day, only to gain more weight. My highest weight was 200 pounds.
I saw my doctor regularly , always to report something else wrong with me. I had become a hypocondriac. Finally I was refered to an endocronolgist, who did a thorough look at my body and still the cushings went undetected. By this point I had given up. I convinced my self that this was how my body was suppose to be.
Two years later, and many doctors appointments later, my mom was searching the internet for my symptoms when she came across cushings. We were amazed to find that I had every single symptom. After reporting the news to the doctor she referred my back to an endroconolgist.The endo said I had to do what she called "The Goldon Test" which was a 24 hour urine test. This is the most accurate way to detect Cushings. Sure enough, my results came back positve for Cushings. I was relieved to finally know that something was wrong with me and that it was not all in my head, yet I was scared for what was a head.
February 2003 I had pituitary surgery to remove the tumor. Post Mri's were difficult to read because of the scar tissue and the doctors were not sure if they got all the tumor. The recovery was long and I waited for any differences in body, but I didnt lose a single pound.
About a year later (2004) I awoke in the night to a severe head ache. I took aspirin only to find it made it worse. I started to vomit and my vision became blurry. I was rushed to the hospital and spend 48 hours in the emergency room being treated for a migraine. I've had migraines before, and this was no migraine! Finally I got to have CAT scan and doctors were surprised to learn that the tumor had hemridged and bled into my optic nerve.
I was in the hospital for almost a month and could not see out of my rigth eye for three months. This time the doctors said the hemridges could have been a blessing in disquise because it may have bleed the tumor away. I went on living my life until about another year rolled by and I had a grand mal seisure. Never having had a seisure before another MRI was ordered. The results showed that the tumor was indeed still there and growing rapidly. It was only 3 mm from my optic nerve now.
In 2004 I took the next step to my recovery with radiation. It was a brand new machine and process and I was the first to patient. How it worked is instead of having several weeks of radiation, the idea was to just have it one time, but at a very intense amount. The rest of the week I was fine and didnt feel any different , then all of a sudden it hit me real hard. I was so weak to the point where I couldnt even sit up or walk. This lasted for about one month.
The radiation had completely shut down my pituitary gland. So to compensate, my adrenal glands started to over react to substitute for the pituitary. By now, all options had been used and the only thing left that could be done was to have my adrenal glands removed.
In 2006 I had the adrenalectomy. There were complications because my liver was too big and they had to slice my whole stomach open to perform the surgery. After my sugery I got pneumonia which made recovery longer and harder. This surgery hurt a lot more than I anticipated and the recovery time was a lot longer.
Again I waited for a change but nothing happened for a long time. Then I slowly started to change , at first not enough for anyone to notice. My face started to not look so bloated and I waited patiently. I was happy when I lost 25 pounds, to me this was a victory! To my surprise the pounds started dropping uncontrolably. Now its the beginning of 2008 and I have lost just over 60 pounds!!!! The best part is I didn't even exercise or diet to acheive such an unbelievable weight lose.
After all the times of feeling hopeless and always hitting dead ends, I had finally defeated Cushings disease. The only aftermath is I now have Nelsons which darkens my skin pigmentation. So I have a beautiful year round tan!
To all those out there with Cushings: Never give up! There may be times when you see no end in site but just be strong and believe. :) I am finally back to myself again and you will be too!
