And It's About Time There Was Some Support For Cushing's!
I lived my life with cerebral palsy growing up.. I had problems with weight, but nothing really horrible like now. When I gained it was little bits, but with how active I was, I could never lose anything. When I turned 21 I graduated from college and was looking for employment, which was also difficult because people thought that I was in pain when I walked.
Around the age of 22 I started to see fluid retaining in my legs.. it wasnt so bad at first.. also in college I broke my bones in my feet 3 times for no real reason. The fluid in my legs started getting worse and worse and the fluid was just leaking out of my legs. I went to the emergency room and had no insurance so I was kind of unlucky there. I went to a primary care doctor and was told that I had lymphedema and was given fluid pills. They didnt really work.
She couldnt tell me why i had the lymphedema but she gave me a phone number of 2 doctors I could go to. The first Dr, was a complete jerk and he told me that the problem with my legs is that I was fat and that if I lose the weight, I will lose the fluid in my legs. My "mother in law" was with me and defended me, that I have to be forced to eat which was the case.. I was a failed anorexic. He said you dont know what she shoves in your mouth when you arent around. She was almost ready to smack him. The other doctor I went to, he prescribed me with a lymphedema pump which also didnt work.
My insurance then changed and I had to change pcps. I wanted to try lymphedema therapy, and my new pcp wouldnt diagnose me with lymphedema, so I couldnt try to get the fluid out of my legs, which was the worst of my symptoms then. She had me get ct scans of my abdomen (which I had to lie to insurance company about), and after that came back clear she was sure that it had to do with my reproductive system... and wouldnt see me until I went to a gyno.
Well, before I got to see a gyno, on Easter of 2005, I got really really sick. I had chills, I was so weak.. it was just really really bad... and my left leg was beet read. I called the ambulance since I had fallen and I couldnt get up.. I was a wreck. They took me to the hospital and they told me I had cellulitis and a possible clot in my lung... although they couldnt tell for sure since I was too big for their testing machines. I kept on telling doctors, nurses, and staff, that I did not cause the weight and they finally listened to me. While I was in the hospital they did numerous urine and blood tests, all which came back extremely high. I was in the hospital for a month since i needed 2 weeks of rehab since me being in the hospital bed for so long I lost most of my muscle.
I was referred to an endo after i left. I needed my pcp to write me a referral. In the same appoinment she asks me again, what do you plan on doing about your weight......I had told her I was being tested for cushings, but I guess she wasnt listening to me. She wrote the referral to an endo.. but she wrote the referral for diabetes not cushings. I went to the endo and the nurse was asking me all these diabetes related questions and I was kind of confused, but at least the endo knew who I was and why I was there. I also had an mri when I was in the hospital and he told me that it came back clear, and he really had no idea what to do, but he needed some time to think.
He later referred me to a Dr. Maroon in Pittsburgh, who is a Neurosyrgeon.. works a lot with the Pittsburgh Steelers from what I understand. He told me when I saw him that in my mri, that the pituitary looked puffy which means that there is something probably there, but the slices of the mri were to thick to pick up on the mri. So then I had another mri and the ipss in october of last year. In November I was diagnosed with cushings and was told that I could have my surgery in the beginning of January.. had my surgery on January 18th.. and things went well.. Dr. Kassam was pleased with the results of the surgery and so far things seem to be okay.
Heather was the subject of a future Live Interview in the Cushing's Help Voice Chat / Podcast series. Archives are available.
