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

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Less of Me: Doctors in and around Columbus

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Sunday, April 26, 2015

Muskeg Farm : Testing for Cushing's, IPSS

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Saturday, April 25, 2015

Muskeg Farm : Testing for Cushing's, Dex

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Friday, April 24, 2015

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

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Muskeg Farm : Testing for Cushing's, CBG

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Muskeg Farm : Testing for Cushing's, ACTH

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Less of Me: Cyclical Testing

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Wednesday, April 22, 2015

Less of Me: More testing, more results

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

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Less of Me: My mimi

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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...

Saturday, April 18, 2015

Muskeg Farm : Testing for Cushing's, Introduction

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Friday, April 17, 2015

Muskeg Farm : Growth Hormone Deficiency in Adulthood and the Eff...

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Less of Me: Now what??

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survive the journey: Cushing's Awareness: Testing

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Muskeg Farm : Nerdy Zebras

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Less of Me: 24hr UFC's

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Wednesday, April 15, 2015

survive the journey: Cushing's Awareness: Pituitary hormones and disor...

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Muskeg Farm : Adrenal Insufficiency and Adrenal Crisis

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Less of Me: My Appointment with Dr R. and Devon

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Life, Cushing's, Diabetes and Me: What Cushing's Syndrome is to me...

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Muskeg Farm : Cushie Friends

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Less of Me: All things pituitary

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Monday, April 13, 2015

survive the journey: Cushing's Awareness: Heritable Cushing's

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Less of Me: Movie Monday!

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Muskeg Farm : Pushing yourself

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Life, Cushing's, Diabetes and Me: My thoughts for the day....

Life, Cushing's, Diabetes and Me: My thoughts for the day....: I've been thinking a lot about my first round with Cushing's a lot lately. My endocrinologist has me tapering off of hydrocortisone ...

survive the journey: Cushing's Awareness: Types of Tumors

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Sunday, April 12, 2015

Less of Me: Confidence

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Saturday, April 11, 2015

survive the journey: Cushing's Awareness: Subclinical Cushing's

survive the journey: Cushing's Awareness: Subclinical Cushing's: Subclinical Cushing's Disease/Syndrome has be a controversial diagnosis.  Only in the past decade has the term been used.  According to ...

Muskeg Farm : Sphygmomanometer (SFIG-moh-mə-NOM-i-tər)

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Friday, April 10, 2015

Less of Me: Pleased to meet ya

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Life, Cushing's, Diabetes and Me: My life in chaos

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Thursday, April 9, 2015

Muskeg Farm : Word Search (Why not?)

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Less of Me: The ugly truth: my skin

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survive the journey: Cushing's Awareness: When the Gold Standard Becom...

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Muskeg Farm : Happy Birthday Dr Harvey Cushing

Muskeg Farm : Happy Birthday Dr Harvey Cushing

Life, Cushing's, Diabetes and Me: I blog about my health because

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Wednesday, April 8, 2015

Less of Me: Cushing's Awareness Day!

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Tuesday, April 7, 2015

Muskeg Farm : Pituitary MRI -Review

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Life, Cushing's, Diabetes and Me: Challenges & Victories

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Less of Me: My medical history

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2 cushie girls: Day 6.....5 things every Person living with rare d...

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Life, Cushing's, Diabetes and Me: Medication Information

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Monday, April 6, 2015

Muskeg Farm : Cushing's Jeopardy:

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Less of Me: Weight GAIN progression

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Life, Cushing's, Diabetes and Me: My Children's perspective....

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Sunday, April 5, 2015

Muskeg Farm : Easter

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Less of Me: Happy Easter!

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survive the journey: Cushing's Awareness Month: Causes of Cushing's

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Life, Cushing's, Diabetes and Me: Call the police, my life has been stolen

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Saturday, April 4, 2015

Muskeg Farm : Sleep

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Less of Me: Parents Just Don't' Understand

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2 cushie girls: Getting Diagnosed....My Tips

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Less of Me: A mental patient

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Friday, April 3, 2015

Muskeg Farm : Appetite

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survive the journey: Cushing's Awareness Month: Cyclical Cushing's

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Thursday, April 2, 2015

Past Cushing’s Awareness Challenge Bloggers

This page  is starting to load pretty slowly and I’m guessing that it’s maybe because of all the blog posts it has to load.  So, I’m going to take all the Cushing’s Awareness Challenge Bloggers from 2012-2014 and post them here so I can delete the blog rolls that they’re in now.
Eventually, when I have time, I’ll add the blogs to the general “All Cushie Blogs” list.  Hopefully, that will speed the page up!  I don’t know if there was a problem last year because I’m sure we had more than 2 of us participating!


Cushing’s Awareness Challenge 2013

Cushing’s Awareness Challenge 2012

Monday, March 2, 2015

Cushing's Awareness Challenge 2015

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 Fourth 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 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)
  • Health Madlib Poem. Go to : http://languageisavirus.com/cgi-bin/madlibs.pl#.VPGZQlPF9A8 and fill in the parts of speech and the site will generate a poem for you.
  • The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?
  • 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...?