Day 2, Cushing's Awareness Challenge

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.

And tomorrow…

 

Cushing’s Awareness Challenge, Day 4

Another idea I borrowed from Robin - using a Wordle as inspiration for today's post.

Even though I'm "in remission" since 1987, I'm still way too fatigued, napping every afternoon for several hours.  People think I should be normal since my pituitary surgery was so long ago.  Well, no.

Just a few days ago, I posted this abstract on Severe fatigue in patients with adrenal insufficiency.  I don't think that they needed to do this study at all.  Just ask any Cushie!

Giebels V1, Repping-Wuts H, Bleijenberg G, Kroese JM, Stikkelbroeck N, Hermus A.

Author information

Abstract

BACKGROUND:

Fatigue is a frequently experienced complaint in patients with adrenal insufficiency (AI) and may be influenced by cortisol levels.

AIM:

The objective of this study was to determine the prevalence of severe fatigue in adrenal insufficiency (AI) patients, to assess which dimensions contribute to fatigue severity and to determine the association between salivary cortisol levels and momentary fatigue.

SUBJECTS AND METHODS:

We performed a cross-sectional study in the outpatient department of a university hospital. Included were 27 patients with congenital adrenal hyperplasia (CAH), 26 patients with primary AI (PAI), 24 patients with secondary AI (SAI) and 31 patients with adrenal insufficiency after treatment for Cushing's syndrome (Cush-AI). Measurements included computerised questionnaires to determine fatigue severity and physical and psychosocial contributors. Patients took four saliva samples at home, in which cortisol levels were measured.

RESULTS:

Severe fatigue was experienced by 41 % of the CAH patients, 42 % of the PAI patients, 50 % of the SAI patients and 42 % of the Cush-AI patients. Psychological distress, functional impairment, sleep disturbance, physical activity, concentration problems and social functioning contributed to the subjective experience of fatigue. Salivary cortisol levels were not correlated with momentary fatigue.

CONCLUSIONS:

A considerable proportion of AI patients experience severe fatigue. Salivary cortisol level is not a significant predictor for momentary fatigue in AI patients.

PMID:

24615365

[PubMed - in process]

From http://www.ncbi.nlm.nih.gov/pubmed/24615365

Back to my nap now...

Day Seven, Cushing's Awareness Challenge

Sleep.  Naps.  Fatigue.  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.  Last weekend, both days, I took 7-hour naps each day and I 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.

This sleeping thing really impacts my life.  Between choir rehearsals, I come home for a 45-minute nap.  Sometimes, during adult choir rehearsals, I start to nod off anyway.

I only TiVo old tv shows that I can watch and fall asleep to since I already know the ending.

Maybe now that I'm more than 5 years out from my kidney cancer I can go back on Growth Hormone again.  My surgeon says he "thinks" it's ok.  I'm sort of afraid to ask my endo about it, though.  I want to feel better and get the benefits of the GH again but I dont want any type of cancer again and I certainly can't afford to lose another kidney.

I'm feeling so old and weary today...