![]() |
![]() |
![]()
I don’t know how long I’ve had Cushing’s Disease/Cushing’s Syndrome. In fact, I’m not even sure what brought it on and my doctors have never answered that question. I never took any steroids although I did take birth control pills for 11 or 12 years. I think I read somewhere that it can possibly be brought on by high stress and I did have one REALLY bad weekend six years ago. My G.P. had been treating me for high blood pressure for years and I had also managed to put on nearly 50 pounds and I couldn’t seem to lose the weight no matter how I changed my diet, exercised, no matter what I did! I got off the pill and managed to lose almost 20 pounds. The blood pressure was still borderline high. My thyroid test came back fine, so the g.p. decided to start treating me for PCOS.
I did start going to a wholistic nurse practioner with a “regular” medical degree and who was comfortable working with pharmacutical drugs as well as herbal remedies – something that was very important to me. She has been my saving grace through this whole ordeal. Between my nurse and g.p. I was sent to an endocrinologist, he wanted several tests run. Needless to say, the test results were very suggestive of Cushing’s Disease/Cushing’s Syndrome. The endocrinologist ran a CT Scan and discovered adrenal tumors and also ran an MRI where he discovered a small pituitary tumor – the cause of my Cushing’s Disease. I can’t thank my wholistic nurse enough because without her, my treatment would still be for PCOS – allowing the Cushing’s to get worse which in turn would allow everything the Cushing’s is affecting to get worse.
Surgery was March 22, 2006. While I was…”concerned,” I wasn’t actually nervous until I did all the pre-op paperwork the morning before. I don’t know what it was about that session but I spent the next 24 hours a little on edge! My mother and I arrived at the hospital on the 22nd at 6:30am and my support network trickled in shortly after that as surgery was at 8am. I have to say, I really was confident surgery would go well. My neurosurgeon (Dr. Marshall Poor) and my ENT (Dr. JR Sarpa) had been doing this kind of surgery together for a very long time. Not only were they confident the surgery would go well BUT they were also pretty sure they would be able to get the tumor in its entirety.
Well, they came to administer the anesthesia sometime before 8am and apparently I didn’t disappoint my mom and friends! Rumor has it, I was yelling instructions about my cats, my house, my cell phone and my mom all the way down the hall to surgery. My hospital recovery was easy, I didn’t suffer any of the complications that can arise with this type of surgery (knock on wood). My recovery since then... First, with this type of surgery, they go through/around/near your sinuses. The packing is VERY uncomfortable but once it’s removed, you feel like you’ve got the worst head cold ever! While everything is healing, you can’t blow your nose so you constantly feel stuffed-up. Second and most important, they warn you that you’ll be depressed. BELIEVE THEM!! The best way I can describe my mood was gray – I didn’t care if I ate or starved, got up or slept, went out or stayed in, etc. It is a very hard place to be because you know you’re there somewhere inside but your unable to stop that gray, bleak feeling. Today, I am 5 months or so post-surgery and doing great! I have started going back to the wholistic nurse that saved my life and together, we are strenthging my pituitary and pineal glands naturally and getting off the steriod my endocrinologist thinks I will be on for life. My “face” made an appearance just in time for my 32nd birthday, my blood pressure remains “normal” even after a Mountain Dew, and I know that if I could just get in gear, I could lose all the extra weight I’ve put on.
My Suggestions:
1. Take charge of your health (before, during and after diagnosis). You know your body better than anyone so don’t let a doctor bully you into believing something you know isn’t true. If one doctor doesn’t believe you, find someone who will.
2. Surgery is worth it. I know I may have made it sound scary but really, it has been worth it. Not only because of the health benefits (which are most important) but even for the vanity reasons (what my heart wanted !).
3. Recovery isn’t easy but stick with it. Just take it one day at a time, remember your loved ones love you. The weird gray area is only temporary, just hang in there. When you wake up one morning, six weeks or so after surgery and see a glimpse of that face you lost so long ago to a disease you never heard of, you’ll smile. When that face becomes a permanent fixture in the mirror after about 3 months, you’ll smile nearly every morning. I promise! My best suggestions for recovery – be patient with yourself (something I am NOT good at!) and do what makes you feel good. Your spirit has as much recovering to do as your body does so nourish them both!
If you have any questions, contact me. I certainly can’t promise any medical advice but I can tell you what’s worked for me so far. Thanks for letting me share!
|
|
comment on this page
email this page
print friendly
