🦓 Day 3: Cushing’s Awareness Challenge 2022

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.

A few years ago 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 when I went. I knew it was working and my knee got better for a while, but it’s such a time and energy sapper. Neither of which I can really spare.

Maybe now that I’m nearly 15 years out from my kidney cancer (May 9, 2006) I’ve been back on Growth Hormone again. My surgeon says he “thought” it’s ok. I was sort of afraid to ask my endo about it, though but he gave me the go-ahead. 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 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.

Eventually, I did restart the GH, this time Omnitrope.

And tomorrow…

🦓 Day 1: Cushing’s Awareness Challenge 2022

April 1, 2022April 1, 2022 MaryO Cushing's Awareness Challenge, Cushing's Awareness Challenge 2022 April Fool, awareness, bruise, Cushing's Awareness Challenge 2022, diagnosis, doctors, Dr. Harvey Cushing, drug companies, endocrinologist, exercise, fatigue, hirsuitism, MRI, Pituitary, sleep, stretch marks, surgery, symptoms, transsphenoidal, treatment, tumor, Video, weight

April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on April 8th, 1869.

Thanks to Robin for this wonderful past logo! I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.

As I see it, there have been some strides the diagnosis or treatment of Cushing’s since last year. More drug companies are getting involved, more doctors seem to be willing to test, a bit more awareness, maybe.

How fitting that this challenge should begin on April Fool’s Day. So much of Cushing’s Syndrome/Disease makes us Cushies seem like we’re the April Fool. Maybe, just maybe, it’s the doctors who are the April Fools…

Doctors tell us Cushing’s is too rare – you couldn’t possibly have it. April Fools!

All you have to do is exercise and diet. You’ll feel better. April Fools!

Those bruises on your legs? You’re just clumsy. April Fools!

Sorry you’re growing all that hair on your chin. That happens as you age, you know. April Fools!

Did you say you sleep all day? You’re just lazy. If you exercised more, you’d have more energy. April Fools!

You don’t have stretch marks. April Fools!

You have stretch marks but they are the wrong [color/length/direction] April Fools!

The hump on the back of your neck is from your poor posture. April Fools!

Your MRI didn’t show a tumor. You couldn’t have Cushing’s. April Fools!

This is all in your mind. Take this prescription for antidepressants and go home. April Fools!

If you have this one surgery, your life will get back to normal within a few months. April Fools!

What? You had transsphenoidal surgery for Cushing’s? You wasted your time and money. April Fools!

I am the doctor. I know everything. Do not try to find out any information online. You could not have Cushing’s. It’s too rare… April FOOL!

All this reminds me of a wonderful video a message board member posted a while ago:

So now – who is the April Fool? It wasn’t me. Don’t let it be you, either!

💉 In Manchester? New Endocrinology Unit

May 31, 2021June 2, 2021 MaryO Helpful Doctors, United Kingdom adrenal, Cushing’s, endocrinologist, Pituitary

Stockport, NHS FT, has opened a new specialist endocrinology investigation unit, making it one of only two clinics of its type in Greater Manchester. One of the main benefits is, it will ensure patients with potential endocrinology conditions are treated faster, with more accurate assessments carried out. The specialist unit will also allow patients to receive their diagnosis as outpatients, without the need for an inpatient stay.

Endocrinology is the study and management of hormone related disorders which are often complex, and include some rare conditions. If hormones become unbalanced, they can lead to various conditions known as endocrine disorders. These are the conditions which are diagnosed and treated by the clinic’s consultants. Some of the examples include thyroid problems, adrenal nodules, which may lead to Cushing’s syndrome with hypertension, diabetes and osteoporosis; or pituitary nodules, which may lead to pituitary deficiency or cause blindness.

Some of these conditions are difficult to diagnose, and simple blood tests are not enough. In these cases, ‘dynamic tests’ are needed, which require significant expertise in how they are performed and how the results are interpreted. Previously these specialised tests required an inpatient stay, where patients would often have to wait for over few months.

Dr Daniela Aflorei, Consultant in Diabetes and Endocrinology for Stockport FT, who runs the clinic, said “I am delighted we are now able to provide a specialist Endocrinology service at our hospital which can provide quicker and more convenient care for our patients.

“With these conditions, swift diagnosis is very important for effective treatment, so this is going to have real benefit for people’s lives. I’d like to thank the many members of staff who helped us set up the new clinic and made it possible.”

The clinic has reduced the typical waiting time significantly, due to the clinic being run by endocrinology specialists. Patients have the opportunity to meet the endocrinology specialist nurses, helping understand the reasons for the tests to be discussed, keeping them informed in all aspects of their treatment.

The specialist clinic is run on one day each week, and is expected to benefit around 300 patients a year.

From https://www.nationalhealthexecutive.com/articles/specialist-unit-improve-endocrinology-care

❓Can You Help? Very Few Symptoms

June 10, 2020June 10, 2020 MaryO Can You Help?, What do you think? anxiety, blood tests, bruise, buffalo hump, cortisol, Cushing’s Help, endocrinologist, message boards, pandemic, sonogram

A guest on the Cushing’s Help message boards asked:

I’ve been searching every possible alternative explanation. I really hoped I just had a Lipoma but GP was pretty confident no.

I’ve gained about 40lbs in the past year, I bruise easily and I have a Buffalo Hump. Cycle is regular, my mood is good, well ya know pandemic, home schooling, owning a business … Lol I don’t think I’m suffering any unusual stress or anxiety though. I am anxious over the time it’s taking to get any info.

I had blood drawn and an upcoming sono, date TBD, but don’t see my GP for 5 wks!

Can I get blood results over ph and skip right to Endocrinologist if Cortisol is high? Any input of speeding this along?

Anyone else with only a few symptoms?

Thanks!

Can you help Ellie out? Please respond here or on the Message boards.

Thanks!

🦓 Day 3: Cushing’s Awareness Challenge 2020

April 3, 2020April 12, 2020 MaryO Cushing's Awareness Challenge Cancer, Cushing’s Awareness Challenge 2020, endocrinologist, exhaustion, fatigue, growth hormone, kidney cancer, knees, MaryO, nap, physical therapy, Pituitary, Serovital, sleep, surgeon, surgery

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

A few years ago 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’s working 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 14 years out from my kidney cancer (May 9, 2006) I’ve been back on Growth Hormone again. My surgeon says he “thought” it’s ok. I was sort of afraid to ask my endo about it, though but he gave me the go-ahead. 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…

🦓 Day 1: Cushing’s Awareness Challenge 2020

April 1, 2020April 12, 2020 MaryO Cushing's Awareness Challenge April Fool, awareness, bruise, Cushing’s Awareness Challenge 2020, diagnosis, doctors, Dr. Harvey Cushing, drug companies, endocrinologist, exercise, fatigue, hirsuitism, MRI, Pituitary, sleep, stretch marks, surgery, symptoms, transsphenoidal, treatment, tumor, Video, weight