Three years ago today…
December 23rd, 2011 § 3 Comments
…I had my first pituitary surgery at Vanderbilt for Cushing’s. What a wild three years it has been. I had imagined then that it was the beginning of the end and that by this time I’d be skinny again and have my life back.
Boy was I mistaken. I am three years out, four months post-op from my second pituitary surgery and I’m the fattest I’ve ever been and so miserable and frustrated. I am down to 20mg of steroid but apparently it’s still too much because I am continuing to gain more and more weight. But it’s not enough because I still have minor symptoms of adrenal insufficiency and no appetite. My doctor in Seattle is apparently leaving and no one at his office has bothered to tell me. Hell, no one at his office bothers to follow up with me. My care has taken a nose dive since I was randomly reassigned to another nurse practitioner instead of the one I really love. This one just doesn’t care; I’m convinced. If she does, she has a terrible way of showing it.
My doctor at Vanderbilt acts like he’s not a doctor and defers to Seattle all if the time. Are you not an endocrinologist? Fix me, damn it! The only doctor that gives a damn and understands how miserable I am is my ENT. I’m lucky to have him in my corner but he’s not an endo so he can’t help me with the rest of my issues. I may be a beached whale by the time this is over but at least I’ll have a working nose.
I can’t fit into any of my clothes. I am spending so much money on prescriptions and doctor appointments that even if I wanted to shop at the fat girl store, I can’t. My entire wardrobe consists of leggings and tunics because I can’t fit into anything else. I had to ask for a seatbelt extender on one of my recent flights for the first time ever and cried until I landed. The looks I got shattered me. I know I shouldn’t care what others think, but I do.
I’m finally going to start growth hormone replacement next week but I’ve had mixed reviews from fellow Cushies and doctors. So I don’t want to get my hopes up that this will be the final puzzle piece that will click into place and help me regain control of my body.
I’m just not okay with this at all. I truly believe at this point that I shouldn’t have had the second surgery. I foolishly thought this would be it. I’d be fixed. But that’s not the case. I’m not sure I ever will be and I’m really tired if fighting this fight.
Oh I feel for you! The only advice I can offer is to go low carb. Steroids increase insulin which increases weight. Low carb lowers insulin. I have been able to avoid weight gain with this approach, multiple times.
The kicker is, even when you get off the steroids, you may have been on them long enough to be insulin resistant. I am. This means the insulin problems while on steroids, persist b/c they’ve actually hacked up your metabolism.
Are there people in the Cushing’s community that low carb at all? It would help a lot.
This is a long arduous recovery marked by many many setbacks. Do you realize that adrenal stuff alone has a longer recovery than open heart surgery? Isn’t that crazy? Yet we barely get any support or help with it.
I have a feeling your endo isn’t helping b/c you’ve outpaced their knowledge and experience. There are huge gaps in endocrinology science and education. The patients know more than most endos.
Hang in there. This too will pass, too slowly but it will pass.
M
Hi Rachel,
I know it’s hard to believe, but it really will get better! I didn’t start to lose weight until I tapered off ALL the hydrocortizone, then it came off quickly– I expect it will be the same for you. What’s your plan for the final taper? Do you go in for regular CST tests? Is there improvement there? Try and focus on the improvements, even the small ones!
Sounds like the worst part, however, is the lack of support you’re getting from the medical team(s). I would let your MD know that you prefer the other nurse practionier, and ask to be switched back.
How did you find out that your Doctor is leaving? Will there be a replacement? I understand why you are feeling so frustrated!
Take good care, you will feel better!!
Nancy
rachel, you are such a beautiful woman. i’m so sorry that you’re still going through this. i don’t know if it helps, but i completely understand the weight issue. it’s crushing, i know.
hugs sweetheart. you’re incredible. you don’t hear it often enough.