Interview with Alicia, a Cushing’s Message Board member who is still testing. Alicia writes “Around the end of my Junior year, probably one of the worst things that could have happened during my 8 years of illness happened, I had severe psychiatric symptoms at school, including psychosis, and was put on a “students in crisis” plan and sent home for a little while. Being diagnosed as a “psych patient” would delay my diagnosis for years, most doctors just considered me “crazy.”
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 last 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.
Now that I’m nearly 12 years out from my kidney cancer (May 9, 2006) I have gone back on Growth Hormone again. My kidney surgeon says he “thinks” it’s ok. I’ve asked my endo about it and he finally gave it an ok last summer. 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’m not sure how long I will stay on the Gh this time since I have a very high co-pay and I’m not seeing any benefit.
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.