Cushing’s Help is 14 Today!

Who’d have believed it?  Today, July 21, 2014 is our 14th birthday!

It’s unbelievable but the idea for Cushing’s Help and Support arrived 14 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.

Cushing's Help is Turning 11!

 

10 Years of Cushing’s Help. Who Would Have Guessed?

 

Ten years ago yesterday I was talking with my dear friend Alice, who runs a wonderful menopause site, 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.  We decided that I could.

This website (http://www.cushings-help.com) first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with this site, I’ve made  some helpful differences in someone else's life.

Who could have known how this site – now sites – could have grown and grown.

It started as a one-page bit of information about Cushing’s  In people, not dogs, horses, ferrets…

Then, it started growing and growing, taking on a life of its own.  To truly emulate Alice, I added message boards in September.  They were really low-quality, a type put together by an old HTML editor but we had members and actually had discussions.

Not too long after, a real board was opened up and things really started happening.  Then we outgrew that board and ended up in our current home.

The message boards are still very active and we have weekly online text chats, 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.

Things have changed over the years, though.  The original Cushings-Help site is still updated with new bios, new Helpful Doctor listings, meetings and more but all new articles have moved to a new site - http://www.cushie.info/ – which is much easier to maintain than the older strictly-HTML site.

Also new are a CushieWiki, a site for the Cushing’s Help Organization, several blogs (of which this is one), three Facebook entities (Cushing's Help Cause; Cushing's Help and Support Group; and the Cushings Help Organization, Inc.); a Twitter stream and much more.

New recently:

NEW! Daily News Summary at Cushing's Daily News

NEW! cushie.info is now optimized for viewing on PDAs and mobile phones

NEW!  Medical Centers. These are centers which specialize in Cushing's, pituitary or adrenal patients.  If you, as a patient, have one that you'd like to have added, please send any info you may have to Mary O'Connor (MaryO).  Thank you!

Occasional Newsletters are Back: Members of cushie.info will automatically receive these occasional newsletters. Of course, you may opt-out at any time. Thank you for your interest.  Non-members may subscribe through the Newsletter Subscription module on the left side of this page.

Cushie Toolbar: Be the first to know! The Cushie Toolbar features a Google search box, the 911 Adrenal Crisis! page, the Cushie Reads book recommendations page, Cushie Calendar, all the bios, arranged by diagnosis type or date, add (or update) your bio, our locations around the world, the message boards and chatroom, Helpful Doctors list, add (or update) your Helpful Doctor, support page, scrolling message area for Cushing’s news, Cushing’s blogs, NIH Clinical trials for Cushing’s, pituitary and adrenal, the Cushings Help Organization cause on Facebook, Staticnrg and Cushings on Twitter, new CushieWiki and listen to the Cushing’s podcasts right from this toolbar.

CushieWiki: Please feel free to contribute! The CushieWiki is an ever-changing, ever-growing body of Cushing's knowledge provided by *YOU* and other patients.

Members of the cushie.info site have additional features:

• Your Profile
• Contact Us
• Member List
• How To Add Friends
• Local Liaisons
• Pen Pals
• Add an Article!
• Access the Archives.  News items and abstracts are archived after one month
• Calendar: Add Events
• Calendar: Add a Meeting Venue
• Photos and Images
• Upload Images
• Submit a Link
• Track Health & Fitness Achieve your goals, print charts for your doctors. Add anything else that you would like to track. These are private graphs, available only to you.
• A special menu along the bottom of each page where you can take notes, make changes to your profile, subscribe to RSS feeds and much more.
• Add your Twitter user name and the last 10 "tweets" will show up in your profile for other members to see
• Members can submit links (URLs), send each other PMs, email each other directly, add avatars, add Helpful Doctors and rate current ones or add reviews.  They can also add articles, events and meeting venues. Some articles are available to members only.

We’ve grown out of control from that simple one-page info sheet to way more than I could have ever imagined in that phone conversation with my friend.  I would never have thought that I could do any of this, provide these services and touch the lives of so many others.

I also never thought that I would spend hours a day updating, adding, improving, helping, emailing, phoning, paperwork, writing…

But it’s all worth it if the lives of other Cushies are made better.

Here’s to another 10 years…

I missed it!

With all the hubbub over the weekend, and finding out yesterday morning that my best friend was in the hospital, I completely forgot that yesterday was the 21st anniversary of my pituitary surgery at NIH.

I even had a reminder on my calendar, a notice on the calendar section of the message boards, all kinds of places.  But it just slipped my mind.

Maybe this is a sign that I should somehow forget that I had Cushing's, that I should move on with my life as a "cured" Cushie.

My new life, in addition the the panhypopituitarism, involves kidney cancer and, for me anyway, that's a zebra disease.

I consider this a zebra disease because it's one that I shouldn't have had.

For one thing, I "should" have had colon cancer because both parents and an aunt had it twice each.  Of course, there's no guarantee that I won't get that, too.

Anyway, other "zebra" reasons are the risk factors for kidney cancer aka renal cell carcinoma.
The majority of kidney cancers are renal cell carcinomas. Risk factors for renal cell carcinoma include:

• Age. Your risk of renal cell carcinoma increases as you age. Renal cell carcinoma occurs most commonly in people 60 and older.

I was younger than this.

• Sex. Men are more likely to develop renal cell carcinoma than women are.

I am female

• Smoking. Smokers have a greater risk of renal cell carcinoma than nonsmokers do. The risk increases the longer you smoke and decreases after you quit.

Not me!

• Obesity. People who are obese have a higher risk of renal cell carcinoma than do people who are considered average weight.

A Cushing's gift

• High blood pressure (hypertension). High blood pressure increases your risk of renal cell carcinoma, but it isn't clear why. Some research in animals has linked high blood pressure medications to an increased risk of kidney cancer, but studies in people have had conflicting results.

Never had this until the kidney cancer.  It went away immediately post-op.

• Chemicals in your workplace. Workers who are exposed to certain chemicals on the job may have a higher risk of renal cell carcinoma. People who work with chemicals such as asbestos, cadmium and trichloroethylene may have an increased risk of kidney cancer.

What?  Me work?.

• Treatment for kidney failure. People who receive long-term dialysis to treat chronic kidney failure have a greater risk of developing kidney cancer. People who have a kidney transplant and receive immunosuppressant drugs also are more likely to develop kidney cancer.

Nope.  Some sites also list polycystic  kidney disease.  I don't have that but half my husband's family does.  Hmmm - wonder if that's contagious

• Von Hippel-Lindau disease. People with this inherited disorder are likely to develop several kinds of tumors, including, in some cases, renal cell carcinoma.

I've wondered about this but, you know, it's too "rare".

• Hereditary papillary renal cell carcinoma. Having this inherited condition makes it more likely you'll develop one or more renal cell carcinomas.

Not that I know of. 

So, yesterday after I went with DH to his doctor, I went to see my new zebra doctor - my kidney surgeon - for pain I've been having.  Over the summer he said if I "wanted" my CT scan earlier than my next visit, just let him know.  I've been having pain in my abdomen and he is sending me for the CT I requested.  Plus, he suggested I call my gastroenterologist just in case there's something happening in my colon. 

Oh no!  What if I finally get the disease I always felt I was destined to get?

But, like Scarlett O'Hara, I'll think about that another day and head off with DH to see his new surgeon...

From another year but today is the day!

Congratulations, MaryO!

I know how hard you've worked on this site from day one.
Hard to believe you're starting your SEVENTH YEAR!
You've done an incredible job of creating a resource that's not only
informative and supportive, but beautiful as well!

As you begin your 7th year,
I wish you many, many more years of continued success!!

With all my love and friendship,
Alice (Dearest)

~~~~~~~~~~

Dearest
Alice Stamm
Founder, Power Surge Community for Women at Midlife