Sunday, April 2, 2017

Cushing's Awareness Challenge.



View all future Cushing's Awareness posts in the newer blog at https://cushieblogger.com

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 :(

Sleeping in Rockford

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…

Saturday, April 1, 2017

Day 1: Cushing's Awareness Challenge 2017

April is always Cushing's Awareness Challenge month because Dr. Harvey Cushing was born on April 8th, 1869.
30-posts


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.


April Fool's Day
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!

Cushing's Awareness Challenge: It's Here!

Enjoy following the posts of the outstandingly brave Cushies as they attempt to post a blog post each day for the month of April!

Bloggers-chat

Enjoy!

Maryo_colorful_zebra

It's Starting!

Ready-set-write

Read all the blog posts here, on the right side.

It would be great to share some (ALL?) on Twitter, Facebook, wherever to get the word out even further.

Friday, April 1, 2016

Cushing's Awareness Challenge, Day 1

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

30-posts

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.


April Fool's Day
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:

https://youtu.be/GRaDr3cPAmE

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

Friday, March 18, 2016

Fifth Annual Cushing’s Awareness Challenge

awareness

The Cushing’s Awareness Challenge is almost upon us again!

Do you blog? Want to get started?

Since April 8 is Cushing’s Awareness Day, several people got their heads together to create the Fifth Annual Cushing’s Awareness Blogging Challenge.

All you have to do is blog about something Cushing’s related for the 30 days of April.

There will also be a logo for your blog to show show you’ve participated.

Please let me know the URL to your blog in the comments area of this post, on the Facebook page, in one of the Facebook Groups, on the message boards or an email  and I will list it on CushieBloggers ( http://cushie-blogger.blogspot.com/)

The more people who participate, the more the word will get out about Cushing’s.

Suggested topics – or add your own!
  • In what ways have Cushing’s made you a better person?
  • What have you learned about the medical community since you have become sick?
  • If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing’s patients?
  • What would you tell the friends and family of another Cushing’s patient in order to garner more emotional support for your friend? challenge with Cushing’s? How have you overcome challenges? Stuff like that.
  • I have Cushing’s Disease….(personal synopsis)
  • How I found out I have Cushing’s
  • What is Cushing’s Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
  • My challenges with Cushing’s
  • Overcoming challenges with Cushing’s (could include any challenges)
  • If I could speak to an endocrinologist organization, I would tell them….
  • What would I tell others trying to be diagnosed?
  • What would I tell families of those who are sick with Cushing’s?
  • Treatments I’ve gone through to try to be cured/treatments I may have to go through to be cured.
  • What will happen if I’m not cured?
  • I write about my health because…
  • 10 Things I Couldn’t Live Without.
  • My Dream Day.
  • What I learned the hard way
  • Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
  • Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
  • 5 Challenges & 5 Small Victories.
  • The First Time I…
  • Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
  • How much money have you spent on Cushing’s, or, How did Cushing’s impact your life financially?
  • Why do you think Cushing’s may not be as rare as doctors believe?
  • What is your theory about what causes Cushing’s?
  • How has Cushing’s altered the trajectory of your life? What would you have done? Who would you have been
  • What three things has Cushing’s stolen from you? What do you miss the most? What can you do in your Cushing’s life to still achieve any of those goals?
  • What new goals did Cushing’s bring to you?
  • How do you cope?
  • What do you do to improve your quality of life as you fight Cushing’s?
  • How Cushing’s affects children and their families
  • Your thoughts…?

maryo colorful zebra

Tuesday, July 21, 2015

Happy birthday, Cushing's Help - 15 years old today!

happybirthday-2015

It's unbelievable but the idea for Cushing's Help and Support arrived 15 years ago last night.

I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering why there weren't many support groups online (OR off!) for Cushing's and I wondered if I could start one myself and we decided that I could.

The first website (http://www.cushings-help.com) first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I'm going to make some helpful differences in someone else's life!

The message boards are very active and we have weekly online text chats, weekly live interviews, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the "Cushie Helper" program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

maryo colorful zebra

Thursday, April 30, 2015

Muskeg Farm : Why I Think I'm in Remission, and why this isn't t...

Muskeg Farm : Why I Think I'm in Remission, and why this isn't t...: A friend of mine requested I write this post. This is a question everyone asks, and often repeatedly: "Am I in remission?" or &quo...

Wednesday, April 29, 2015

Muskeg Farm : Testing for Cushing's, MN Saliva

Muskeg Farm : Testing for Cushing's, MN Saliva: Oh my goodness!  I just realized I forgot salivary cortisol levels in my previous posts about cortisol testing for Cushing's Disease!!! ...

Tuesday, April 28, 2015

Muskeg Farm : Testing for Cushing's, Finale

Muskeg Farm : Testing for Cushing's, Finale: DIAGNOSIS!  Or so we hope.  I know it sounds weird to hope for a diagnosis, tumor, and surgery (often neuro-surgery!), but that's realit...

Monday, April 27, 2015

Muskeg Farm : Testing for Cushing's, Imaging

Muskeg Farm : Testing for Cushing's, Imaging: Imaging such as MRI's, CT's, Octreotide Scans, and Gadolinium Scans (newer) will and may be used in the search for the source of y...

Less of Me: Doctors in and around Columbus

Less of Me: Doctors in and around Columbus: As many of you know, I am seeing an endocrinologist who is continuing to test me, but if I feel at any time that I have hit a wall with her,...

Sunday, April 26, 2015

Muskeg Farm : Testing for Cushing's, IPSS

Muskeg Farm : Testing for Cushing's, IPSS: Inferior Petrosal Sinus Sampling (IPSS) is another interesting test, sometimes ordered by endocrinologists, sometimes ordered by neurosurge...

Saturday, April 25, 2015

Muskeg Farm : Testing for Cushing's, Dex

Muskeg Farm : Testing for Cushing's, Dex: There are actually two types of Dexamethasone Suppression Tests (Dex) used in diagnosing Cushing's, a high dose and a low dose test. Th...

Life, Cushing's, Diabetes and Me: Advise from my 12 year old daughter

Life, Cushing's, Diabetes and Me: Advise from my 12 year old daughter: So, I have been having some bad episodes lately. My blood sugars have been going extremely low. This has caused me to pass out a few times. ...

Friday, April 24, 2015

Less of Me: ...and I am a material girl

Less of Me: ...and I am a material girl: There are a number of health reasons why I want to lose about 75-80 lbs. but I'm tired of complaining and having negative vibes hanging ...

Muskeg Farm : Testing for Cushing's, CBG

Muskeg Farm : Testing for Cushing's, CBG: Serum Cortisol Binding Globulin (CBG) is another simple blood draw.  This one you don't do often, but just so your endocrinologist can g...