Day Twenty-nine, Cushing’s Awareness Challenge 2015

Posted on April 29, 2015 by MaryO

 

In case you haven’t guessed it, my cause seems to be Cushing’s Awareness.  I never really decided to devote a good portion of my life to Cushing’s, it just fell into my lap, so to speak – or my laptop.

I had been going along, raising my son, keeping the home-fires burning,  trying to forget all about Cushing’s.  My surgery had been a success, I was in remission, some of the symptoms were still with me but they were more of an annoyance than anything.

I started being a little active online, especially on AOL.  At this time, I started going through real-menopause, not the fake one I had gone through with Cushing’s.  Surprisingly, AOL had a group for Cushing’s people but it wasn’t very active.

What was active, though, was a group called Power Surge (as in I’m not having a hot flash, I’m having a Power Surge).  I became more and more active in that group, helping out where I could, posting a few links here and there.

Around this time I decided to go back to college to get a degree in computer programming but I also wanted a basic website for my piano studio.  I filled out a form on Power Surge to request a quote for building one.  I was very surprised when Power Surge founder/webmaster Alice (AKA Dearest) called me.  I was so nervous.  I’m not a good phone person under the best of circumstances and here she was, calling me!

I had to go to my computer class but I said I’d call when I got back.  Alice showed me how to do some basic web stuff and I was off.  As these things go, the O’Connor Music Studio page grew and grew…  And so did the friendship between Alice and me.  Alice turned out to be the sister I never had, most likely better than any sister I could have had.

In July of 2000, Alice and I were wondering why there weren’t many support groups online (OR off!) for Cushing’s. This thought percolated through my mind for a few hours and I realized that maybe this was my calling. Maybe I should be the one to start a network of support for other “Cushies” to help them empower themselves.

I wanted to educate others about the awful disease that took doctors years of my life to diagnose and treat – even after I gave them the information to diagnose me. I didn’t want anyone else to suffer for years like I did. I wanted doctors to pay more attention to Cushing’s disease.

The first website (http://www.cushings-help.com) went “live” July 21, 2000. It was just a single page of information. The message boards began September 30, 2000 with a simple message board which then led to a larger one, and a larger. Today, in 2012, we have over 8 thousand members. Some “rare disease”!

This was on the intro page of Cushing’s Help until 2013…

I would like to give abundant thanks Alice Lotto Stamm, founder of Power Surge, premier site for midlife women, for giving me the idea to start this site, encouraging me to learn HTML and web design, giving us the use of our first spiffy chatroom, as well as giving me the confidence that I could do this. Alice has helped so many women with Power Surge. I hope that I can emulate her to a smaller degree with this site.

Thanks so much for all your help and support, Alice!

 

In August 2013 my friend died.  In typical fashion, I started another website…

I look around the house and see things that remind me of Alice.  Gifts, print outs, silly stuff, memories, the entire AOL message boards on floppy disks…

Alice, I love you and will miss you always…

MaryOOneRose

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Congenital adrenal hyperplasia: Current surgical management at academic medical centers in the United States

Posted on April 29, 2015 by MaryO

J Urol. 2015 May;193(5 Suppl):1796-801. doi: 10.1016/j.juro.2014.11.008. Epub 2015 Mar 25.

Congenital adrenal hyperplasia: current surgical management at academic medical centers in the United States.

Sturm RM1, Durbin-Johnson B1, Kurzrock EA1.

Author information

Abstract

PURPOSE:

Controversy exists on the necessity for and timing of genitoplasty in girls with congenital adrenal hyperplasia. Our knowledge of surgical preferences is limited to retrospective series from single institutions and physician surveys, which suggest a high rate of early reconstruction. We evaluated current surgical treatment for congenital adrenal hyperplasia at academic centers.

MATERIALS AND METHODS:

We queried the Faculty Practice Solutions Center database to identify all female patients younger than 18 years with a diagnosis of congenital adrenal hyperplasia between 2009 and 2012. Procedures were identified by CPT codes for vaginoplasty, clitoroplasty and other genital procedures. Reconstruction type, age at surgery and surgeon volume were analyzed.

RESULTS:

We identified 2,614 females in the database with a diagnosis of congenital adrenal hyperplasia who were seen at a total of 60 institutions. Of infants younger than 12 months between 2009 and 2011 as few as 18% proceeded to surgery within a 1 to 4-year followup. Of those referred to a pediatric urologist 46% proceeded to surgery. Of patients who underwent surgery before age 2 years clitoroplasty and vaginoplasty were performed in 73% and 89%, respectively, while 68% were treated with a combined procedure. A medium or high volume surgeon was involved in 63% of cases.

CONCLUSIONS:

Many patients with congenital adrenal hyperplasia in the database did not proceed to early reconstructive surgery. Of those referred to surgeons, who were possibly the most virilized patients, about half proceeded to early surgery and almost all underwent vaginoplasty as a component of surgery. About two-thirds of the procedures were performed by medium or high volume surgeons, indicative of the surgical centralization of disorders of sexual development.

Copyright © 2015 American Urological Association Education and Research, Inc. Published by Elsevier Inc. All rights reserved.

KEYWORDS:

adrenal glands; adrenal hyperplasia; congenital; disorders of sex development; reconstructive surgical procedures; virilism

PMID:
25817160
[PubMed – in process]

from http://www.ncbi.nlm.nih.gov/pubmed/25817160

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Day Twenty-eight, Cushing’s Awareness Challenge 2015

Posted on April 28, 2015 by MaryO

 

I first saw a similar image to this one with the saying Life. Be in it at a recreation center when my son was little.  At the time, it was “Duh, of course I’m in it”.

The original image was one a couple males, a couple females and a dog walking/running.  No folks in wheelchairs, no older folks and certainly no zebras.

It would be nice to have everyone out there walking or running but that’s not real life, at least in the Cushie world.  It’s been a long time since I’ve really been In My Life – maybe it’s time to get back.

A dear friend who has not one, but two forms of cancer was traveling throughout Europe for the first time after her husband’s death wrote:

Some final words before I turn in for the night. If there is a spark of desire within you to do something which is not contrary to God’s Holy Law, find a way to make it happen. All things are possible and blessings abound for those who love Him. Life is such an adventure. Don’t be a spectator – live every single moment for Him and with Him.

Somedays, it’s hard even getting up in the morning but I’m trying.  I’ve tried Water Aerobics for People with Arthritis and I actually went to class twice a week, I got a new part-time job two years ago, my son and I will play at Steinway Hall in NYC again in June, we have plans for a cruise in June, and a trip to Scotland to cross something off my Bucket List – seeing/hearing the Edinburgh Tattoo.

This is the one and only life I’ll ever have and I want to make the most of it!

 

 

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Is the Honeymoon Over?

Posted on April 27, 2015 by MaryO

From the Cushing’s Awareness Challenge…

attot's avatara tale of two tumors

Since getting out of the hospital after a hypertensive crisis six weeks ago, I had been getting quite a bit of relief from a combination of steroids (i.e., hydrocortisone) and anti-histamines.  I was then able to get myself off the steroids and was able to function reasonably well on just anti-histamines.  A daily dose of Zyrtec was able to keep the bulk of my breathing/coughing problems and flushing under control.   Over the past week, I have been finding the Zyrtec isn’t doing the trick anymore – by late afternoon, the Zyrtec wasn’t able to hold the symptoms back very effectively.  So I added in Benedryl at night.  This morning, I woke up and even after taking Benedryl overnight and Zyrtec upon waking today, I am already fire engine red and coughing.   My vision problems are also getting worse – I’ve been having a lot of trouble reading text…

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Day Twenty-seven, Cushing’s Awareness Challenge 2015

Posted on April 27, 2015 by MaryO

So often during the diagnosis phase of Cushing’s I felt like this picture – I was walking alone to an unknown place with an unknown future.

My diagnosis was pre-Internet which meant that any information had to be gotten from libraries, bookstores, magazines…or doctors.  In 1983 to 1986 I knew something was terribly wrong but there was no backup from doctors, family or friends.  My first hope was from a magazine (see Day Six)

After I got that first glimmer of hope, it was off to the library to try to understand medical texts.  I would pick out words I did understand – and it was more words each trip.  All my research led me to Cushing’s.

Unfortunately, the research didn’t lead me to doctors who could help for several years.  That contributed greatly to the loneliness.  If a Doctor says you’re not sick, friends and family are going to believe the doctor, not you.  After all, he’s the one trained to know what’s wrong, or find out.

I was so grateful when I finally got into a clinical trial at NIH and was so nice not to be alone with this mystery illness.  I was also surprised to learn, awful as I felt, there were Cushies much worse off than I was.

I am so glad that the Internet is here now helping us all know that we’re not alone anymore.

 

 

We’re all in this together with help, support, research, just being there.  I love this quote from Catherine at http://wheniwasyou.wordpress.com/2012/03/31/wheniwasyou/

Mary, I am delighted to see you here. Cushings – because of the persistent central obesity caused by (we know now) the lack of growth hormone plus the hypothyroidism I was diagnosed with (but for which treatment was ineffective due to my lack of cortisol) – was one of the things I considered as an explanation for my symptoms. Your site was enormously educational and helpful to me in figuring out what might be happening to me. Those other patient testimonies I referred to? Many of them were the bios you posted. Thank you so much for commenting. I am so grateful for the support and encouragement. I really hope that my experiences will help other undiagnosed hypopituitary patients find their way to a diagnosis. I often used to dream that one day I’d get to say to others what was so often said to me: don’t give up, there will be an answer. I kept believing in myself because people I hadn’t even met believed in me. Now I am finally here and I do hope my story will help others to have faith in their own instincts.

Thanks again. Please do keep in touch.

Catherine

 

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