I haven’t updated this blog in a really long time, and I apologize for that. I still think of Cushing’s on a daily basis, and I still want to help out the community as best as I can.
I’m still in remission, I think. Some days I feel like Cushing’s is back, and then other days I’m on the verge of adrenal crisis with no balance in between. Today, I am normal, no symptoms, no brain fog, no fatigue. Tomorrow that may change. So, while I’m not tired and can remember how to talk, I thought I’d take the time to update the blog.
I went to Seattle to see Kelley Moloney, APRN, and Dr. Yuen (who replaced Dr. Ludlam) for the first time in a few years. My relationship with Vanderbilt of late has been a love/hate relationship. I love Vanderbilt because they were the ones that saved my life when I was first diagnosed. But the hate/frustration comes with doctors not listening to me and not hearing my voice. I know a lot about my body and about my disease, and most of the time, I feel disregarded by my doctors there. I’m not a medical professional, so why should they listen to me? I spend a lot of my time pushing back against them.
So,despite the expense, I went back to Swedish in September 2016 to make sure nothing was going on. I feel like I’m heard there, and unfortunately, I trust their opinion over Vanderbilt’s. Swedish listened to me when I thought I was in remission, Vanderbilt dismissed me. So I’m very fond of Swedish for that reason. Kelly did tests but found that I wasn’t having a recurrence. My body is making a little bit of cortisol, but not enough to be considered a recurrence. At the very least, I have an answer. When I brought that up to Vanderbilt, they treated me like I was stupid and dismissed me, and that hasn’t sat well with me.
Unfortunately, though, there have been some corporate shakeups at Swedish, and I found out recently that Kelly is no longer there. That was very devastating for me, especially now that I’m hovering on the edge of adrenal crisis and have been for a few weeks now. I suspect that it’s something to do with the manufacturer of my hydrocortisone replacement, so back to Vanderbilt I go, until I can get back on even footing again. Once I figure out where Kelly will be practicing, I will be stalking her over at her new practice.
In other news, I am working on my memoir regarding Cushing’s. I wanted to have it ready for release by Cushing’s Awareness Day on April 8th of this year, but that may not happen, so it most likely won’t be released until next year. I went back and forth on whether or not to write a memoir, because who am I? I’m not a celebrity that anyone cares about. However, this story needs to be told in the hopes that it will reach others who don’t know about this disease.
If anyone would like to contribute a very short 1-3 paragraph summary of their battle with this disease, I’d like to add those into the book somehow. I am also asking for contributions from the medical field as well. Any doctors or nurses who actively treat Cushing’s patients are who I am asking to contribute. I want the book to be both a memoir and a reference book chock full of facts and figures about Cushing’s. Please email me via the contact form if you wish to contribute.
Also, if you have any questions that you’d like answered in a video blog, I will be recording a new one soon. So email me some questions you’d like answered, and I will do my best to address it in the next video blog.
Be well, my friends. I know I don’t post a lot, but when there’s not a lot to say, there’s not a lot to write. Even if I’m not posting, I’m still around, still fighting. Please continue to reach out to me for friendly advice on your own struggles with Cushing’s. And keep fighting.
Don’t ever give up.