And It's About Time There Was Some Support For Cushing's!
It seems funny that looking back now, I've made a long road to progress. Born November 9th 1984, I was always extremely active. As a child I participated in a variety of sports as well as dance. When I was about 7 years of age, I started to hit puberty. The doctors were all thrown into confusion about the situation because I was way too early to be developing as fast as I was. When I had reached the age of 12 most people passed me off as being about 16. That was also around the age that the headaches began.
My parents took me to an eye doctor who noticed that there was an increased amount of pressure behind my eyes. After that they recommended me to go see a doctor to run an MRI. I also had a lumbar puncture to try and relieve some of the stress that they claimed caused the headaches. The MRI showed that there was nothing, so of course I was sent home. I learned how to deal with the headaches and the symptoms (throwing up, blacking out, losing feeling in my face, etc.)
About the time that I reached 16, everything in my body went crazy. I couldn't play tennis or participate on the swim team anymore, and running more than a few minutes made me weak and extremely fatigued. My periods became irregular and when I did get them they were painful. The moon face and the buffalo hump started to become more distinct and by this time I weighed about 190 lbs with a DDD chest. When you're in high school, it gives you more reason to lose your self-esteem and feel known as a freak. My pediatrition said I was obese and should work on eating less and excercise more. I went to the OB/GYN and they claimed I had endometriosis and put me on birth control.
By the time that I had reached my senior year, the puple straii ran from my legs to the top of my neck and all the way around. Since they ran in a vertical pattern I was often harrassed by people claiming that I cut them into my body since they look like scars. The growth was gross. I had it covering my back, stomach, face and chest. But the hair on my legs and head seemed to fall out and fail to grow. I became disoriented and depressed because I couldn't do anything about the the fatigue, the pain I would get in my muscles at night, the weakness and the weight gain. By this time I was 18 and weighed approximately 225 lbs.
During my Christmas break of my senior year which was December 2002, I went to see an endocrinologist, Dr Calles, at Wake Forrest Medical Center who took me under his wings. He knew I had Cushing's but needed the test results as proof. I did the 24-hour urine collection as well as a petrosil sinus sampling. My cortosol levels were well above 600. An MRI aslo showed an adenoma of about 6mm on my pituitary gland. I tried taking ketoconazole but found that within a few weeks I was having liver trouble. All the testing that I was going through took a toll on my energy level so I ended up graduating high school a semester early so that I could take care of the Cushings.
March of 2003, I had my first transphenoidal at Wake Forrest. This surgery put me in ICU for an extended amount of time. The test was a failure and I have permenant damage in my nose were it never healed. Now every night before I go to bed I have to pull blood clots out so that I can breathe. The second surgery was done August 23, 2003 at the University of Virginia by Dr. Laws, who also performed a transpheniodal. This one was 100x better. I was up and walking about 45 minutes after the surgery. I developed diabetes insipidus from it temporarily, but I felt great. A few days later it was announced that the second surgery was a failure as well. He had removed the tumor but felt that there was something else somewhere that was also contributing to Cushing's. October of 2003 I drove back up to UVA for Gamma knife surgery. They radiated the whole area and told me it would take about 3 months for any results to show.
In January of 2004, shortly after my forth procedure, (removal of the endometriosis,) they declared that a failure as well.
It's now Feb. of 2004, I'm 19 years old and I weigh about 250 lbs. My hair is still thin, but the hair growth every where else is still apparent. The purple marks on my stomach have multiplied tremendously and all I want to do is sleep. I still have the moon face and the buffalo hump. I also find it hard to even walk up a set of steps anymore. I'm going to see another surgen at the beginning of March who plans on performing an adrenalectomy. I was told that I would have to go on Hormone Replacement Therapy for the rest of my life after the surgery due to the fact that I would soon develop Addison's disease following the dismissal of Cushing's. I was also told that there's a chance that I would deal with the tumor that is located on the gland becoming agressive and start growing once again.
I've reached a point in my life that I feel comfortable with who I am and what ever happens to me. I'm prepared for the life that's coming up. In my opinion, I'd rather have something that I can control rather that something that has a mind of its own. Throughout everything I've maintained a positive attitude, I've even given speeches in front of classes in Anatomy at college about my disease. I feel like a large portion of this is a mind game. If you let it get you down then you're going to lose. But as long as you keep looking and walking toward that light in the tunnel, one day you're bound to reach the end. The last time that I went to see my endocrinologist he told me something that will stick with me for as long as I live. "What doesn't lighten your load, will always strengthen your back." Looking back, I've learned patience and sympathy, and I've gained determination that I can do anything if I put my mind to it. And I know the end of the tunnel is near for me.
