And It's About Time There Was Some Support For Cushing's!
My name is Roxanne and I'm 32 years old. I live in Gaston, Oregon. I'm married to an incredibly wonderful man and have three precious adopted children. God and my family keep me going, keep me smiling, keep me getting up in the morning.
I was diagnosed with Cushing's almost a year ago (November 2002). I was sick all the time, weak, and had Cushing's symptoms that were troublesome, but wouldn't neccesarily make me go to the doctor. I was gaining weight and was so scared that my doctor would confront me on it. I tried losing weight, but it was futile. Then one day I had severe flank pain that I immediatly recognized to be a kidney stone (I'd had one about a year before in December 2001) I was stunned because my urologist said that if I drank more water I'd probably never have one again! (I've had four now and am still drinking lots of water!) After the cat scan to confirm the kidney stone, my doctor sat me down and told me I had a tumor on my left adrenal gland. (August 2002)
I was shocked and scared, but as I researched these kinds of tumors, I learned of Cushing's. Suddenly this all made sense to me - I wasn't just 'fat,' I was sick. As I read down the list of symptoms, it was like looking in a mirror. I KNEW this was what I had - the fatige, no periods, the hump on my back, the kidney stones... I was referred to an endocrinologist, and endured months and months of testing. Results always pointed to Cushing's, but I wasn't a 'typical case,' so I was just put through more tests. My endocrinologist kept saying that I was producing excess Cortisol and therefore had Cushing's, but not enough for a tumor the size of mine! I felt like she was saying, "Let's wait a while, you're not quite sick enough, yet."
My family was wonderful with me, but their impatience grew as well. Waiting and waiting was hard, especially as I had severe infections, fatigue, and exhaustion.
Finally, adrenal surgery was set! I saw this as a new beginning. I was eager to have the surgery so I could be 'normal' again. Well, surgery went great. I felt pretty good a few hours later. UNTIL....I started experiencing really strange symptoms that made me feel as if I was going crazy. Doctors had 'forgotten' to give me Cortisol after removing the tumor. I went from excess Cortisol to no Cortisol! I was put into ICU and spent a few days recovering from the shock of the withdrawal symptoms. Then, I was released from the hospital after a week or so, and sent home with Prednisone, instead of Cortisol. A day later, I went into withdrawal all over again - plus I was given way to much Prednisone. I was withdrawling and overdosing at the same time. I lost most of my hair, became teary for hours at a time, plus was healing from a major surgery. I planned on 2-3 weeks off work for recovery and another couple of weeks working from home. I wound up being completely off for almost two months. I had severe anemia after surgery. I had surgery on April 30, 2003 and am still trying to get the anemia under control.
Well, that's 'my story.' I just discovered this website yesterday. I was looking for some support. I go back to the endocrinologist this morning. We are still testing to see if my pituitary is involved and if my remaining adrenal is working yet. I'm still on maintenance steroids. I'm concerned again today because I'm having more Cushing's symptoms - I'm falling asleep anywhere and everywhere again, still haven't had a regular period, and still have the skin problems, etc. I hope it's because my other adrenal has finally kicked in, but we'll see!
This has been such a long road and I'm still on it - I'm feeling quite alone and overwhelmed these days - I'm tired and sore and sometimes don't see any relief in sight. Time to pray! Thanks for reading my story.
Update: My name is Roxanne and I live in Oregon. I was diagnosed with Adrenal Cushings in 2002 and had an adrenal tumor removed in May of 2003. My recovery from surgery was long and hard, but I am doing well now. I am married to my best friend and we have 5 children.
This site helped me through a very difficult time in my life and has been an ongoing source of education and support as I have continued healing and learning about my body functions. I was recently diagnosed with adrenal insuffiency as my remaining adrenal gland only works partially. It's strange to go from too much cortisol to not enough!
Best wishes to all of you who are on similar journeys! May God be with you.
-Roxanne
