This is a tough one. Sometimes I’m in “why me” mode. Why Cushing’s? Why cancer? Why knee pain that doesn’t let up?Unfortunately, there’s not a thing I can do about any of it. Cushing’s, who knows the risk factors? For kidney cancer I found out the risk factors and nearly none apply to me. So why? But why not? No particular reason why I should be exempt from anything.
Since there’s nothing to be done with the exception of trying to do things that could harm my remaining kidney, I have to try to make the best of things. This is my life. It could be better but it could be way worse.
One of the Challenge topics was to write about “My Dream Day” so here’s mine…
I’d wake up on my own – no snooze alarms – at about 8 am, sun streaming through the window. I’d be well rested and not have had any nightmares or death-dreams the night before. I wouldn’t have had any issues sleeping due to my hernia. I’d be able to hop out of bed without my knees hurting or giving way on me, or my tendonitis/deteriorating thumb join throbbing. I’d forget that my DH has cancer and that my mom recently broke her pelvis – in 2 places. I remember my son and his new wife are home for a visit but I let them sleep in for a while.
I’d get out for a bike ride or a brisk walk, come home, head for the hot tub then shower. I’d practice the piano for a bit, then go out to lunch with friends, taking Michael with me. While we’re out, the maid will come in and clean the house.
After lunch, maybe a little technology shopping/buying. Then the group of us go to one of our homes for piano duets, trios, 2-piano music.
When we get home, it’s immaculately clean and I find that the Prize Patrol has visited and left a substantial check.
I had wisely left something for dinner in the Instant Pot so dinner is ready. After dinner, I check online and find no urgent email, no work that needs to be done, no bills that need to be paid, no blog challenge posts to write…
Then, I’d get a text from Alice…
I wake up from My Dream Day and realize that this is so far from my real life, so I re-read The Best Day of My Life and am happy that I’m not dealing with anything worse.
So, the dwarves above have only seven of the many, many symptoms of Cushing’s. I had those above – and I often felt like I looked like one of those little bearded dwarves.
Cushing’s affects every part of the body. It’s not like when I had kidney cancer and only the kidney was affected.
Women with Cushing’s syndrome may experience:
Men with Cushing’s syndrome may experience:
Other signs and symptoms include:
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.