And It's About Time There Was Some Support For Cushing's!
I live out in the country, near Ledbetter, Texas.
I really don't know where to begin or what to say, I will just start at the beginning. My symptoms date back to 1980, I was 25 yrs old. I had a horrible illness that was never truly diagnosed. They thought I had toxic shock, but I was overdosed on cortisone and everything went haywire from there. It effected every gland in my body. I was in such bad shape I had to quit my job. I could barely walk, could not stand the pain in my hands to lift myself out of the chair....even my tear glands did not work. My liver was inflamed, it was horrible. It took several years to get back on the road to a somewhat normal life. I had my son in Mar 1984 and was sick the entire pregnancy. I wound up with toxemia and he had to be taken by C-Section at 8 months. He, by the way, is mentally retarded with no real diagnosis as to why. We have been told what it isn't, but they don't know what happened to cause it. My real hell began as soon as he was born. I started with migraines and stress headaches. We bought a new mobile home and I wound up in the hospital.....they say it was an allergy to the formaldehyde. So we bought a house and moved........still sick constantly. I wound up with Shingles and was put on every medication they could possibly find to help with the headaches.
I kept seeing doctors and seeing doctors.......I took Elavil, muscle relaxers and everything they gave me.......no let up in headaches. Finally in 1994 I quit my job and moved in with my Mom to get answers. I was awarded Social Security Disability after a 4 year struggle, it was for headaches. In the meantime, I gained 30 pounds in 2 months and kept going. My blood pressure was up and down and they were unable to stabilize it with meds. My blood sugar was doing about the same. My white count was always high. Still to more doctors, nothing changed. In 1998 I was treated in the emergency room for food poisoning and the ER physician said to get to a doctor the next day because my white count was so elevated it was off the map, even with having food poisoning.
So, I was referred to an Oncologist. Next was all the tests, a bone marrow biopsy that was great fun. Then he tells me I have a rare blood disorder called Polycythemiavera (Polycythemia is a condition in which there is a net increase in the total circulating erythrocyte (red blood cell) mass of the body. There are several types of polycythemia.).
I had blood drawn regularly and took chemo meds. I rock along with that treatment for about 2 years, until I moved and had to find a new Oncologist. He walked in to the room and said to me......I don't think you have the blood disorder......you are a classic Cushing patient!!! Wow......that was scary........ That was in 1999. I then began the testing, MRI's, urine tests, labs.......over and over, until I was finally sent to see the team of doctors as M D Anderson, in Houston, TX. After about 10 MRI's they were able to find the pituitary tumor and I had it removed in Feb, 2000. It is now 2003 and I still feel awful most of the time. My pituitary is permanently damaged. I have to take Cortef daily and started growth hormone last March. I had an allergic reaction to the Nutropin and they had to take me off it. I am in the process of trying to get set up for Humatrope.
I still have horrible headaches, daily. I am very, very tired all the time. I struggle thru life to take care of what I have to only. I have no social life, don't ever want to go anywhere. I can not keep up with any of my friends, so I don't bother. I do take Paxil and was put on it for my headaches, but I think it helps with depression. I stumbled across this group and feel like a bird let out of a cage! I realize I need a lot of education on this disease. In reading your stories I also realized I do not know enough about it. I can not tell you any levels or any other important information. I hope to become informed and help myself. I also hope to be a support and help for you too!!! Thanks for being there!!!
