A lot of people would think blogging about your personal health issues or disease would be too personal, and too revealing. Why would someone want to reveal personal details about themselves online?
For me, it is not about giving all the dirty details. It’s about raising awareness, providing support to others with chronic illness, so they know they are not alone. It’s about the person reading this blog, that thinks they might have Cushing’s, who might get help a little sooner than they would have without reading my story. It’s for friends and family, so they know what’s going on in my life, with my health, without me having to tell the story over and over again.
Insomnia was one of the first things that troubled me enough to try to get help for with Cushing’s Disease. By my last year in music school, I had flipped my schedule around. I felt best and got more done if I practiced through the night and slept through the day. That year was wonderful for productivity because I was able to do what worked best with my body. A couple of years later, my sleeping problems had taken over my life. I was trying to get a diagnosis. In school for a second and third bachelor’s degree while working at Starbucks, I barely slept. Because I wasn’t sleeping, I decided to just keep busy….
As part of this year’s Cushing’s Awareness Challenge, I’ve decided to share our Interview Series again since there was lots of great info in there.
The series is still going on, so if you’d like to be a part of this, just let me know. You can fill out this form and check off that you want to do an interview – Add Your Bio
There are currently 89 interviews in our series. This is the second one:
Robin Smith (staticnrg) hosted as Cushing’s message board members called in to talk about their fight for diagnosis and treatment. Robin opened the show with a brief explanation of what Cushing’s is and what the symptoms are.
Have you checked out The Epic Foundation? I encourage you to do so. Cushie comrade Karen has dreamed of starting this non-profit to help Cushing’s patients and others with invisible diseases. In 2017, Karen debuted EPIC.
Please take a moment to read about EPIC Together’s Person of the Month, Alicia Held.
Sleep. Naps. Fatigue, Exhaustion. I still have them all. I wrote on my bio in 1987 after my pituitary surgery “I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.”
That seems to be changing back, at least on the weekends. A recent weekend, both days, I took 7-hour naps each day and I still woke up tired. That’s awfully close to taking a whole day off to sleep again.
In 2006, I flew to Chicago, IL for a Cushing’s weekend in Rockford. Someone else drove us to Lake Geneva, Wisconsin for the day. Too much travel, too Cushie, whatever, I was too tired to stay awake. I actually had put my head down on the dining room table and fallen asleep but our hostess suggested the sofa instead. Amazing that I traveled that whole distance – and missed the main event 🙁
This sleeping thing really impacts my life. Between piano lessons, I take a nap. I sleep as late as possible in the mornings and afternoons are pretty much taken up by naps. I nod off at night during TV. One time I came home between church services and missed the third service because I fell asleep.
I only TiVo old tv shows that I can watch and fall asleep to since I already know the ending.
At the beginning of this year, I was doing physical therapy twice a week for 2 hours at a time for a knee injury (read more about that in Bees Knees). I come home from that exhausted – and in more pain than I went. I know it worked some and my knee is getting better, but it’s such a time and energy sapper. Neither of which I can really spare.
Maybe now that I’m nearly 11 years out from my kidney cancer (May 9, 2006) I could theoretically go back on Growth Hormone again. My kidney surgeon says he “thinks” it’s ok. I’ve asked my endo about it and he still says no. Considering the GH wasn’t supposed to contribute to my cancer, it’s interesting that these doctors prefer me not to be on it. I want to feel better and get the benefits of the GH again but I don’t want any type of cancer again and I certainly can’t afford to lose another kidney.
I’ll probably just muddle through without it. I always laugh when I see that commercial online for something called Serovital. I saw it in Costco the other day and it mentions pituitary right on the package. I wish I could take the people buying this, sit them down and tell them not to mess with their pituitary glands. But I won’t. I’ll take a nap instead because I’m feeling so old and weary today, and yesterday.
Today, I’m going to be talking about my Cushing’s story, which still continues, even 8 years after I was diagnosed.
I remember the moment I realized something wasn’t right. My mom was taking me to the mall, because none of my jeans fit me anymore. She was talking about how she wished I would try to lose weight, because she has been overweight most of her life, and didn’t want that for me. But, I needed pants to wear to school, so I bought another size up. I remember thinking, nothing has changed. I didn’t eat more, or less, I hadn’t stopped any activities. Maybe this was just my metabolism slowing down.