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...

Muskeg Farm : Testing for Cushing's, ACTH

Muskeg Farm : Testing for Cushing's, ACTH: Serum Adrenal Corticotropin Releasing Hormone (ACTH)  is a hormone produced by your pituitary.  This hormone signals the adrenals to produce...

Less of Me: Cyclical Testing

Less of Me: Cyclical Testing: Well the response I received from the physicians assistant wasn't quite what I expected. As I told you the other day , my results were l...

Wednesday, April 22, 2015

Less of Me: More testing, more results

Less of Me: More testing, more results: Hi All. As I told you last week I had to go back for another cortisol test, another TSH and whatever else the doctor saw fit. So I was not...

Muskeg Farm : Testing for Cushing's, MN Serum Cort

Muskeg Farm : Testing for Cushing's, MN Serum Cort: Midnight Serum Cortisol is a simple blood test that can be a good diagnostic tool for Cushing's Disease or Syndrome.  You see, cortisol ...

Less of Me: My mimi

Less of Me: My mimi: Last Wednesday morning I woke up from a very vivid dream, in which my grandmother visited me. When I say she visited me, I mean her spirit, ...

Tuesday, April 21, 2015

4/22/15 ~ Interview with Stephanie (Steph), PCOS/Possible Cushing's Patient

interview
The next interview on BlogTalk Radio will be Wednesday, April 22 at 6:00 PM eastern.  The Call-In number for questions or comments is (657) 383-0416.


The archived interview will be available after 7:00 PM Eastern through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.  While you're waiting, there are currently 82 other past interviews to listen to!

In her bio, Steph writes:
Hi. My name Steph, and this has been a long journey for me so far, and I see a long road ahead. Hopefully their will be a rainbow once all these clouds have melted away.

I just turned 33 years old (this month) and have been dealing with symptoms of Cushing’s since I was a pre-teen without even knowing it. I was diagnosed (or possibly mis-diagnosed) with PCOS when I was about 11. That’s when the irregular (to almost non-existent) menstrual cycles, hirutism (chin, upper lip, upper and lower thighs, fingers, toes, basically everywhere) and weight problems began. I was immediately put on birth control to regulate my periods, which only made my life a living nightmare. They forced on a fake (non-ovulating) period and made my moods a disaster. I went on to be on birth control until from the age of 11 until about 3 years ago when I just couldn’t take it anymore, and took myself off. I’ve been using herbal supplements for menstrual regulalation since then, and feel MUCH better.

Over the years I’ve always felt like there was something “more than PCOS” wrong with me. From the extreme inability to lose weight normally, and the ease to gain it, to the weak legs, vitamen d insuffeciency, high cholesterol, high blood pressure, extreme irritability, now non-existent cycle, shortness of breath (just from walking up 1 flight of stairs), slow healing, hoarse voice, high testosterone, male pattern baldness, blurry vision, EXTREME brain fog etc….. It has been very, very, very tough and emotional over the years. It has taken a toll on my personality, emotions, and those around me….

The way that I found out about cushing’s is rather unique. I was on a popular PCOS message board site called “soul cysters”, and I have always been EXTREMELY self conscience of my round puffy face, and was wondering if it could be a side effect of PCOS. So I searched Puffy face on the message board to see if others on the board had experienced it, and sure enough Cushing’s came up, and a suprising number of women either had both (cushing’s and PCOS) or had been mis-diagnosed, which apparently is very common with cushing’s. it was like a gigantic light bulb went off in my head when I started googling cushings symptoms. All these things that I have been experiencing almost my entire life started coming together. I’m really not crazy!! Everything is possibly related. Im almost 100% sure that this is it!!! I don’t know if this is a good or bad thing, as I see that cushing’s is curable in most cases, but it is also scary, and diagnosing it seems like hell!!

I have began my -already slow- journey to diagnosis. And, the the Dr.’s don’t seem to be all that well informed. However, I am DETERMINED. I am excited at the thought of possibly being able to get my life back through surgery or meds. I went to a well respected Endo in my area, and she is gonna test all of my hormones, including my cortisol level. Though she didn’t seem to be too informed on Cushing’s when I brought it up, along with my “dead ringer” symptoms. I’m going to a pulmonologist on the 29th as suggested by my GP (who also thinks I have cushings, but admits he’s not well informed enough or equipped to diagnose). I’m also going to an OBGYN soon (tried going to one today, and had to walk out because it was such a bad experience). But I am determined to get 2nd, 3rd, and however many opinions are needed until I am satisfied.

Also, on a side note, possibly having cushing’s, along with having PCOS, has made me look at the doctors and the medical profession as a whole in a different light. I feel like if you find a genuinely good doctor who listens, cares, takes you seriously, and is willing to test you without question, and work with you, your levels, and your symptoms, you are blessed!! I have had so many doctors try to push meds down my throat (for their own pockets/greed obviously) when it wasn’t needed or necessary without hesitation or question. And, then when I tell them that the medicine is affecting me adversely, they just tell me to keep taking it! It’s sad and ridiculous. I’ve had to learn to do my own research, know my own body well, and trust my own judgement…..

I will be praying for myself and everyone on this message board who has had to deal with this horrific symptoms over the years.

Updates coming…..

Sunday, April 19, 2015

Muskeg Farm : Testing for Cushing's, 24 hour UFCs

Muskeg Farm : Testing for Cushing's, 24 hour UFCs: 24 hour urinary free cortisol (UFC) is considered a gold standard by most doctors.  Basically, you are given a urine collection jug, voi...