Tuesday, July 21, 2015

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


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

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

Muskeg Farm : Testing for Cushing's, Introduction: I started this blog post during last year's Cushing's Awareness Blogger's Challenge in April, and never finished it because it f...

Less of Me: Now what??

Less of Me: Now what??: Well.... I went in today for the repeat TSH and morning cortisol tests. I'm not sure what to do now because like 18 months ago I told ...