Day 26, Cushing’s Awareness Challenge

Posted on April 26, 2026 by MaryO

So often during the diagnosis phase of Cushing’s I felt lost 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.  I made Xerox copies of my findings to read at home and try to digest. (I still have all those old pages!)

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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Day 22, Cushing’s Awareness Challenge

Posted on April 22, 2026 by MaryO

This is a tough one.  Sometimes I’m in “why me” mode.  Why Cushing’s?  Why cancer?  Unfortunately, there’s not a thing I can do about either.  Cushing’s, who knows the risk factors?  For kidney cancer I found out the risk factors and nearly none apply to me. So why? But why not?  No particular reason why I should be exempt from anything.

Since there’s nothing to be done with the exception of trying to do things that could harm my remaining kidney, I have to try to make the best of things.  This is my life.  It could be better but it could be way worse.

One of the Challenge topics was to write about “My Dream Day” so here’s mine…

I’d wake up on my own – no snooze alarms – at about 8 am, sun streaming through the window.  I’d we well rested and not have had any nightmares the night before.  I remember my son is home for a visit but I let him sleep in for a while.

I’d get out for a bike ride or a brisk walk, come home, head for the hot tub then shower.  I’d practice the piano for a bit, then go out to lunch with friends, taking Michael with me.  While we’re out, the maid will come in and clean the house.

After lunch, maybe a little technology shopping/buying.  Then the group of us go to one of our homes for piano duets, trios, 2-piano music.

When we get home, it’s immaculately clean and I find that the Prize Patrol has visited and left a substantial check.

I had wisely left something for dinner in the Ninja so dinner is ready.  After dinner, I check online and find no urgent email, no work that needs to be done, no bills that need to be paid, no blog challenge posts to write…

I wake up from My Dream Day and realize that this is so far from real life, so I re-read The Best Day of My Life  and am happy that I’m not dealing with anything worse.

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Day 21, Cushing’s Awareness Challenge

Posted on April 21, 2026 by MaryO

Since I’m posting this on April 21, I had a built-in topic.

The image above is from our first local meeting, here in Northern VA – note the 6 Cushing St. sign behind us.  Natalie was the Cushie in the middle.

Today is the anniversary of Natalie’s death.  Last month was the anniversary of Sue’s death. I wrote about Janice earlier.

It’s just not right that this disease has been known for so many years, yet doctors still drag their feet diagnosing it and getting people into remission.

Why is it that we have to suffer so much, so long, and still there are so many deaths from Cushing’s or related to Cushing’s symptoms?

I know far too many people, good people, who suffered for many years from this disease that doctors said they didn’t have.  Then they died.  It’s time this stopped!

Speaking of death – what a cheery blog post this is turning out to be.  NOT!  Unfortunately, this seems to be one of the realities of Cushing’s.  Just last week we learned of another Cushie who died. 😦

Tomorrow will be cheerier – watch for it!

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Day 20, Cushing’s Awareness Challenge

Posted on April 20, 2026 by MaryO

And today, we talk about pink jeeps and ziplines…

How in the world did we get here in a Cushing’s Challenge?  I’m sliding these in because earlier I linked (possibly!) my growth hormone use as a cause of my cancer – and I took the GH due to Cushing’s issues.  Clear?  LOL

I had found out that I had my kidney cancer on Friday, April 28, 2006 and my surgery on May 9, 2006.  I was supposed to go on a Cushie Cruise to Bermuda on May 14, 2006.  My surgeon said that there was no way I could go on that cruise and I could not postpone my surgery until after that cruise.

I got out of the hospital on the day that the other Cushies left for the cruise and realized that I wouldn’t have been much (ANY!) fun and I wouldn’t have had any.

An especially amusing thread from that cruise is The Adventures of Penelopee Cruise (on the Cushing’s Help message boards).  Someone had brought a UFC jug and  decorated her and had her pose around the ship.

The beginning text reads:

Penelopee had a lovely time on Explorer of the Seas which was a five day cruise to Bermuda. She needed something to cheer her up since her brother, Tom, went off the deep end, but that’s another story!

Penelopee wanted to take in all of the sights and sounds of this lovely vessel. Every day she needed to do at least one special thing. Being a Cushie, she didn’t have enough spoons to do too much every day.

On the first day, she went sunning on the Libido deck……she didn’t last too long, only about 10 minutes. Goodness, look at her color! Do you think maybe her ACTH is too high?

Although I missed this trip, I was feeling well enough to go to Sedona, Arizona in August, 2006.  I convinced everyone that I was well enough to go off-road in a pink jeep,  DH wanted to report me to my surgeon but I survived without to much pain and posed for the header image.

In 2009, I figured I have “extra years” since I survived the cancer and I wanted to do something kinda scary, yet fun. So, somehow, I decided on ziplining. Tom wouldn’t go with me but Michael would so I set this up almost as soon as we booked a Caribbean cruise to replace the Cushie Cruise to Bermuda.

Each person had a harness around their legs with attached pulleys and carabiners. Women had them on their chests as well. In addition, we had leather construction gloves and hard hats.

We climbed to the top of the first platform and were given brief instructions and off we went. Because of the heavy gloves, I couldn’t get any pictures. I had thought that they would take some of us on the hardest line to sell to us later but they didn’t. They also didn’t have cave pictures or T-Shirts. What a missed opportunity!

This was so cool, so much fun. I thought I might be afraid at first but I wasn’t. I just followed instructions and went.

Sometimes they told us to break. We did that with the right hand, which was always on the upper cable.

After the second line, I must have braked too soon because I stopped before I got to the platform. Michael was headed toward me. The guide on the end of the platform wanted me to do some hand over hand maneuver but I couldn’t figure out what he was saying so he came and got me by wrapping his legs around me and pulling me to the platform.

After that, no more problems with braking!

The next platform was very high – over 70 feet in the air – and the climb up was difficult. It was very hot and the rocks were very uneven. I don’t know that I would have gotten to the next platform if Michael hadn’t cheered me on all the way.

We zipped down the next six lines up to 250-feet between platforms and 85-feet high in the trees, at canopy level. It seemed like it was all over too soon.

But, I did it! No fear, just fun.

Enough of adventures – fun ones like these, and scary ones like transsphenoidal surgery and radical nephrectomy!

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Day 19, Cushing’s Awareness Challenge

Posted on April 19, 2026 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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