It’s unbelievable but the idea for Cushing’s Help and Support arrived 18 years ago late 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.
Thanks to a now-defunct Microsoft program called FrontPage, the first one-page “website” (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000.
All our Cushing’s-related sites:
It’s unbelievable but the idea for Cushing’s Help and Support arrived 18 years ago tonight. That’s a long time for anything online.
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 making some helpful differences in someone else’s life!
The message boards are very active and we have weekly online text chats, occasional 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.
Other sites in the Cushing’s Help “Family”
Over the years, we went on several Windjammer Barefoot Cruises. We liked them because they were small, casual and were fairly easy on the wallet.
They sailed around the Caribbean to a variety of islands, although they sometimes changed itineraries depending on weather, crew, whatever. One trip we were supposed to go to Saba but couldn’t make port. A lot of people got off at the next port and flew home.
The captains were prone to “Bedtime Stories” which were often more fiction than true but they added to the appeal of the trip. We didn’t care if we missed islands or not – we were just there to sail over the waves and enjoy the ride.
The last trip we took with them was about two years before I started having Cushing’s problems. (You wondered how I was going to tie this together, right?)
The cruise was uneventful, other than the usual mishaps like hitting docks, missing islands and so on. Until it was a particularly rough sea one day. I was walking somewhere on deck and suddenly a wave came up over the deck making it very slippery. I fell and cracked the back of my head on the curved edge of a table in the dining area. I had the next-to-the-worse headache I have ever had, the worst being after my pituitary surgery. At least after the surgery, I got some morphine.
We asked several doctors later if that hit could have contributed to my Cushing’s but doctors didn’t want to get involved in that at all.
The Windjammer folks didn’t fare much better, either. In October 1998, Hurricane Mitch was responsible for the loss of the s/v Fantome (the last one we were on).
The story was recorded in the book The Ship and the Storm: Hurricane Mitch and the Loss of the Fantome by Jim Carrier. The ship, which was sailing in the center of the hurricane, experienced up to 50-foot (15 m) waves and over 100 mph (160 km/h) winds, causing the Fantome to founder off the coast of Honduras.
This event was similar to the Perfect Storm in that the weather people were more interested in watching the hurricane change directions than they were in people who were dealing with its effects.
I read this book and I was really moved by the plight of those crew members.
I’ll never know if that hit on my head contributed to my Cushing’s but I have seen several people mention on the message boards that they had a traumatic head injury of some type in their earlier lives.
Heather, pituitary surgery on January 18, 2006 after years of medical problems, June 5, 7:30PM
A long-time member of the Cushing’s Help message boards, AutumnOMA , gave me permission to share info about these wonderful Cushing’s Awareness Stickers she has made:
CUSHING’S AWARENESS RIBBON STICKERS ARE HERE and you can get your own!!!
April is CUSHING’S Awareness Month. In honor of raising awareness, I decided to use my original Cushing’s Awareness Ribbon art to create a sticker.
In 2005, just after my pituitary surgery, while I was at home recovering and suffering thru the weening process, I decided to create an artful awareness ribbon that spoke to the beauty within each Cushie Warrior. This is why…
Cushings’s changes us. Emotionally, spiritually and physically. It takes a toll. I felt wounded beyond my medical issues. I no longer recognized my own face staring back at me from the mirror. My body took on a form of its own that was unrecognizable to me. My heart and soul ached for what I had lost because of this disease. I felt judged on appearance alone. I forgot who I was. I forgot how to see past the physical things that I couldn’t control and the daily pain. I forgot the carefree beauty of simply being alive.
I had struggled for years for a diagnosis and almost lost myself, my mind and everything I held dear. But I had made it through to the other side. Diagnosis and surgery – finally! But it was still difficult. I needed to know that I could find my inner strength to keep at it. I had to trust in my own strength and resilience to adjust to changes and find joy in the life I had. I had to believe that I had not endured what I had for no reason.
The simple truth of the matter was that I wasn’t sure how to do any of that. It felt too big; too hard. The only thing I knew with certainty was that if I could be brave enough to share my story and help raise awareness for the rare disease I was living with, maybe I could help one person…and helping one person – just one person- know they were not alone…well that was reason enough to try.
And so I set out to raise awareness and hopefully offer support to other by means of sharing my journey.
The first thing I decided was that I wanted an awareness ribbon to wear. I wanted to proudly display (like all those pretty little pink ribbons that are everywhere) that I too survived a life altering disease and I did it with little support.? There wasn’t a large Foundation like Komen, raiding money to find a cure for me. Heck, Doctors didn’t even know what Cushing’s was, let alone the vast majority of the public in general. But I wanted to pin something pretty on my shirt. I wanted an awareness ribbon that embodied hope and beauty. I wanted to wear a ribbon that would inspire people to ask me what it stood for. And so…I made my own.
As an artist, I like to create things that make me feel something. I like to create from a place of inspiration that feels good and comfortable to my soul.
I used to think that flowers, cut, in a garden or otherwise were a waste of time, effort and money because the bloom and die so quickly. But what I came to realize was that was what in fact made them so special. No matter how short the length of time they were around was, they still grew and bloomed into a spectacular show (even if for just a short while) and brought smiles and beauty to the world. What a wonderful gift to be grateful for.
For me, flowers never fail to make me smile. They are fragile, but but resilient. They are colorful and happy. They freely give their beauty for all to enjoy…they were perfect in my mind for an awareness ribbon. And from that thought came the piece of art that is the Cushing’s Awareness Ribbon or blue and yellow flowers.
I am very proud of it. And I am proud to offer these stickers with my art ribbon to help raise awareness.
These stickers are 2.5”x2.5” full color vinyl circles (approximately the size of your palm.).
Profits made from the sale of these stickers will be donated to help fund organizations that work hard to offer continued support and help for those struggling with Cushing’s – whether that be getting a diagnosis, making it through recovery or learning to live with the changes the disease brings about in our lives.
If you would like to purchase stickers please see the attached picture that include all the details about pricing and payment.
Here’s to us all remembering our inner beauty and finding a way to let it shine despite this disease…or maybe because we have this disease and realize how amazing we are as survivors!
Cushie Crusader, that’s me…and many others. I think we all have an opportunity to be Cushie Crusaders every time we tell others about our illness, share our story on or offline, post about our struggles – and triumphs – on the message boards, write blog posts in this Cushing’s Awareness Challenge…
I have brochures printed up that I’ll sometimes give to people who look like they might need the info. My husband carries business cards since he’s getting pretty good at recognizing Cushies. Robin made a great information card that anyone can print out and share with others.
When we have prayer time in my handbell practice or choir rehearsals I try to mention issues that are going on in the Cushing’s community. People are slowly but steadily learning about Cushing’s week by week.
A piano student mentioned that a person in a group she is in has Cushing’s, a non-Cushie friend mentioned last week that she had gone with a friend of hers to an endo appointment to discuss Cushing’s.
Get out there and talk about Cushing’s. Let people know that it’s not just for dogs and horses (and sometimes ferrets)!
After you’ve been diagnosed, don’t just forget all about Cushing’s – stick around the boards and help others who are just getting started.
Here’s something I had made for Sue with SuperSue embroidered on the back.
Picture your name instead: