What if you had a patient sponsor?
The driving force behind my blog from day one has been to share my story in hopes that it might help others in their own journey of diagnosis and recovery from Cushing’s. When I was diagnosed with Cushing’s syndrome in Nov. 2007, I struggled to find information from the patient’s point of view. My doctor couldn’t tell me how I would feel after surgery, aside from what she learned from her previous patients. I wanted a first hand experience from someone who’d been through the same thing I was going through.
I did find some online resources where Cushing’s patients shared their stories and struggles with one another. But I found the environment to be more negative than positive. I was looking for support, not company for my misery. I wanted to talk to someone who was further along in their recovery and could tell me how long it took them before they could walk down stairs pain free. Someone to support me through my journey.
In A.A. recovering alcoholics work with a sponsor to help them on their journey to recovery. The sponsor is usually someone who has been in the program for awhile and has a better understanding of how to work the program to achieve sobriety. More important, a sponsor is one of the few people who truly understand what it’s like to be an alcoholic and how to begin the process of recovery.
I think this methodology could be applied to the journey of illness, like Cushing’s. What if there was a resource that could match you up with someone who has survived Cushing’s? Or who at least started the process of recovery? This person could offer you mental and spiritual support in your journey. You would be able to learn first hand from someone else’s experience. Distance wouldn’t matter because you could trade emails or phone calls.
Anyone have thoughts on this? Would you be interested in having a sponsor or sponsoring someone dealing with Cushing’s?
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8 comments
sounds like a cool idea to me! one thing i am afraid of is what if this is another dead end for any diagnosis. so far i ‘have’ PCOS and fibromyalgia, but i have so many symptoms of cushings that i feel i could have more relief than the none i have now.
hugs, jenny
Hi,
I think your advocate idea sounds great. I know that before, during and after my recovery from adrenal Cushing’s, I had questions for the doctors that they just couldn’t answer. Cushing’s is so rare. They told me that everything was going to go back to the way it was. But what did that really mean, and what if it didn’t? I wanted to know what other patients thought and how do they feel years after recovery? I wonder about what problems to expect in the future that were caused by Cushing’s, or problems caused by having only one adrenal gland now.
I was diagnosed with adrenal Cushing’s syndrome in Apr ‘07, had surgery June ‘07, and finished my recovery and decrease from prednisone in Mar ‘08. I lost all the weight I had gained (85lbs. over 7yrs) during the period from approx. June ‘07- Mar ‘08. My hair is still growing back. My face no longer looks “Moonfaced”. I’m much calmer and a lot less angry, sweaty, hairy. I was lucky not to have terrible stretch marks, but yes there are some that weren’t there before Cushings. Unfortunately, my breasts will never be like they once were. Once they go from a 36B to a 42DD, they never go back……up! ha! That’s something the doctors didn’t tell me. But I’m still thankful for what I do have…..a great husband and family to support me through it all.
One thing that has started to happen, my knees are starting to get creaky and sometimes I feel nauseous when I’m under stress. I’m 40, so I don’t know whether that is related to post-Cushing’s or not.
Hi,
Since recovering from Cushing’s, I’ve started to become more aware of how people look around me. I’m more observant and sometimes start to wonder if I can tell if someone has Cushing’s. Has this ever happened to you, and if so have you ever approached someone on the topic?
I was also touched to read that you had trouble loosing the weight soon after the surgery. That must have been incredibly frustrating and disappointing. I’m just curious to know how much prednisone they had you on upon leaving the hospital? My endo also thought I might have trouble with my thyroid, and kept a close watch on it throughout my recovery. I had started out on 20mg prednisone, then dropped to 10mg two weeks later, then decreased from 10 to 5mg over the next four months, then it took me the next 5 months to decrease down to the point of coming off the prednisone completely. My recovery was exciting and brutal at the same time. There were times I didn’t think I would make it through. I had no appetite with a slight bit of nausea for the first four months. My body seemed to be in constant flux, something new was always happening. My joints would creak, I had a constant need to stretch like you do when you yawn, I was tired often, and I was loosing 10lbs a month. My whole body ached after the slightest bit of exercise and if I sat down my body would stiffen up and I would have a hard time getting up and straightening into a standing position. It was if I was 90 years old.
Well, I’m sorry to talk your ear off, but after reading your story, I have to admit my memories started flooding back.
Oh, and another ironic twist to my Cushing’s saga, is that my maiden name is Cushing. How weird is that? And I had my surgery at Yale, where Dr. Cushing first discovered Cushing’s Disease. What are the odds of that, I often tell my friends I should go to Vegas.
Diane - thanks for sharing your story! It means so much to hear stories from other Cushing’s survivors. This illness is not only physically debilitating, but it causes isolation and depression. I think it’s so important for those of us who are suffering or who have suffered quietly for much too long speak up and share their stories with each other.
I’m in the process of developing the frame work for the patient sponsor program I proposed in this blog post. So please stay tuned for more details.
I was just scheduled for April 27th pituitary surgery… thank you for your blog. And YES it would be fantastic to have someone to help you through the process…… it is amazingly comlicated!!! And I am really worried about the surgery… so it is great to read info like this.
THANKS!! Erin
Hi Kristen, I enjoyed meeting you today at Swedish. What a great idea for your blog! Let me know if I can help in any way. My experience is in pediatric cushing’s and adrenal disease, though have assisted a pit patient of two over the past 10 years.
Cheers to you,
Jackie
Jackie
* Jackie - it was a please to meet you too! I’m glad there was such a good turn out for the symposium. I would encourage you to join our group, the Cushing’s Partner Program - I think you could provide a valuable insight to living with & overcoming Cushing’s.
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