This is a tough one. Sometimes I’m in “why me” mode. Why Cushing’s? Why cancer? Why knee pain that doesn’t let up? Why my DH has ongoing health issues? Unfortunately, there’s not a thing I can do about any of it. 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 be well rested and not have had any nightmares or death-dreams the night before. I wouldn’t have had any issues sleeping due to my hernia. I’d be able to hop out of bed without my knees hurting or giving way on me, or my tendonitis/deteriorating thumb join throbbing. I’d forget that my DH has cancer and that my mom broke her pelvis last year – in 2 places. I remember my son and his new wife are home for a visit but I let them 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.
We would take Mimi for a long walk through the woods, where we would come across a Little Free Library so my Mom could check out the books.
I had wisely left something for dinner in the Instant Pot 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…
In case you haven’t guessed it, one of my causes 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 our 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 2018, we have over 12 thousand members. 12,818 to be exact. 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 dear friend died. In typical fashion, I started another website…
I look around the house and see things that remind me of Alice. Gifts, printouts, silly stuff, memories, the entire AOL message boards on floppy disks…
I used to carry a print out of this everywhere I go because I find it very soothing. This print out was in a plastic page saver. On the other side there is a Psalm 116, part of the post from Day Fifteen of the 2018 Cushing’s Challenge.
These days, both these readings are available on my phone and iPad.
Today, when I awoke, I suddenly realized that this is the best day of my life, ever! There were times when I wondered if I would make it to today; but I did! And because I did I’m going to celebrate!
Today, I’m going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger.
I will go through this day with my head held high, and a happy heart. I will marvel at God’s seemingly simple gifts: the morning dew, the sun, the clouds, the trees, the flowers, the birds. Today, none of these miraculous creations will escape my notice.
Today, I will share my excitement for life with other people. I’ll make someone smile. I’ll go out of my way to perform an unexpected act of kindness for someone I don’t even know.
Today, I’ll give a sincere compliment to someone who seems down. I’ll tell a child how special he is, and I’ll tell someone I love just how deeply I care for her and how much she means to me.
Today is the day I quit worrying about what I don’t have and start being grateful for all the wonderful things God has already given me.
I’ll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine.
And tonight, before I go to bed, I’ll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures.
As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because know tomorrow is going to be the best day of my life, ever!
When I’m feeling down, depressed or low, reading my 2 special pages can help me more than anything else.
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 Twenty-nine, 2016)
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.
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.
Blue and Yellow – we have those colors on ribbons, websites, T-shirts, Cushing’s Awareness Challenge logos and even cars.
This is the yellow PT cruiser I had rented for the Columbus, OH meeting in 2007. I didn’t ask for yellow. That’s just what the rental company gave me. Somehow, they knew.
This meeting is the one when we all met at Hoggy’s for dinner although some of us travelers stayed at this hotel.
I’m the one in yellow and blue.
Later in 2007, I bought my own truly Cushie Car. I even managed to get a butterfly on the tags.
So, where did all this blue and yellow come from, anyway? The answer is so easy and without any thought that it will amaze you!
In July of 2000, I was talking with my dear friend Alice, who ran a wonderful menopause site, Power Surge. We wondered 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 maybe I could.
I didn’t know much about HTML (yet!) but I knew a little from what Alice had taught me and I used on my music studio site. I didn’t want to put as much work <COUGH!> into the Cushing’s site as I had on the music studio site so I used a now-defunct WYSIWYG (What You See Is What You Get) web editor called Microsoft FrontPage.
One of their standard templates was – you guessed it! – blue and yellow.
TaDa! Instant Cushie color scheme forever. Turns out that the HTML that this software churned out was really awful and had to be entirely redone as the site grew. But the colors stuck.
Now, in this day of mobile web browsers and people going online on their cellphones, the website is being redone yet again. But the colors are still, and always, blue and yellow.
Because it’s a Sunday again, this is a fairly religious post…
After I was finished with the Cushing’s long diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who preached the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.
I thought I had written down the scripture reading carefully. I practiced and practiced. I don’t like speaking in front of a crowd but I said I would. When I got to church, the reading was different from what I had practiced. Maybe I wrote it down wrong, maybe someone changed it. Whatever.
The real scripture turned out to be Psalm 116. I got very emotional while reading this and started crying when I got to verse 8:
“For you, O LORD, have delivered my soul from death“.
Others in the congregation who knew part of my story were very moved, too.
Psalm 116 (New International Version)
1 I love the LORD, for he heard my voice;
he heard my cry for mercy.
2 Because he turned his ear to me,
I will call on him as long as I live.
3 The cords of death entangled me,
the anguish of the grave came upon me;
I was overcome by trouble and sorrow.
4 Then I called on the name of the LORD:
“O LORD, save me!”
5 The LORD is gracious and righteous;
our God is full of compassion.
6 The LORD protects the simplehearted;
when I was in great need, he saved me.
7 Be at rest once more, O my soul,
for the LORD has been good to you.
8 For you, O LORD, have delivered my soul from death,
my eyes from tears,
my feet from stumbling,
9 that I may walk before the LORD
in the land of the living.
10 I believed; therefore I said,
“I am greatly afflicted.”
11 And in my dismay I said,
“All men are liars.”
12 How can I repay the LORD
for all his goodness to me?
13 I will lift up the cup of salvation
and call on the name of the LORD.
14 I will fulfill my vows to the LORD
in the presence of all his people.
15 Precious in the sight of the LORD
is the death of his saints.
16 O LORD, truly I am your servant;
I am your servant, the son of your maidservant;
you have freed me from my chains.
17 I will sacrifice a thank offering to you
and call on the name of the LORD.
18 I will fulfill my vows to the LORD
in the presence of all his people,
19 in the courts of the house of the LORD—
in your midst, O Jerusalem.
Praise the LORD.
This Psalm has come to have so much meaning in my life.
When I saw a book called A Musician’s Book of Psalms each day had a different psalm. “My” psalm was listed as the reading for my birthday, so I had to buy this book! For a while, it was the license plate on my car.
I used to carry a print out of this everywhere I go because I find it very soothing. “when I was in great need, he saved me.” This print out is in a plastic page saver but now I have this info on my phone and iPad.
On the other side there is an article I found after my kidney cancer. You can read that article in another post.
Way back when we first got married, my husband thought we might have a big family with a lot of kids. He was from a family of 6 siblings, so that’s what he was accustomed to. I am an only child so I wasn’t sure about having so many.
I needn’t have worried.
In January 1974 I had a miscarriage. I was devastated. My father revealed that my mother had also had a miscarriage. I had no idea.
At some point after this, I tried fertility drugs. Clomid and another drug. One or both drugs made me very angry/depressed/bitchy (one dwarf I left off the image) Little did I know that these meds were a waste of time.
Eventually, I did get pregnant and our wonderful son, Michael was born. It wasn’t until he was seven that I was finally, actually diagnosed with Cushing’s.
When I had my early Cushing’s symptoms, I thought I was pregnant again but it was not to be.
I’ll never forget the autumn when he was in second grade. He was leaving for school and I said goodbye to him. I knew I was going into NIH that day for at least 6 weeks and my future was very iffy. The night before, I had signed my will – just in case. He just turned and headed off with his friends…and I felt a little betrayed.
Michael wrote this paper on Cushing’s when he was in the 7th grade. From the quality of the pages, he typed this on typing paper – no computers yet!
Click on each page to enlarge.
When Michael started having headache issues in middle school, I had him tested for Cushing’s. I had no idea yet if it could be familial but I wasn’t taking any chances. It turned out that my father had also had some unnamed endocrine issues. Hmmm…
I survived my time and surgery at NIH and Michael grew up to be a wonderful young man, if an only child. 🙂
So, the dwarves above have only seven of the many, many symptoms of Cushing’s. I had those above – and I often felt like I looked like one of those little bearded dwarves.
Cushing’s affects every part of the body. It’s not like when I had kidney cancer and only the kidney was affected.
Here are some of the many areas affected.
Progressive obesity and skin changes
Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders (buffalo hump). Some symptoms such as sudden weight gain, are caused by excess cortisol. The excess cortisol in the body does not increase protein and carbohydrate metabolism. It slows or nearly disables metabolism function, which can cause weight gain (fat accumulation) in the buttocks, abdomen, cheeks, neck, or upper back.
Loss of muscle mass. Some areas of the body, such as the arms and legs, will remain thin.
Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms
Thinning, fragile skin that bruises easily
Slow healing of cuts, insect bites and infections
Women with Cushing’s syndrome may experience:
Thicker or more visible body and facial hair (hirsutism)
Irregular or absent menstrual periods
Men with Cushing’s syndrome may experience:
Other signs and symptoms include:
Depression, anxiety and irritability
Loss of emotional control
New or worsened high blood pressure
Glucose intolerance that may lead to diabetes
Bone loss, leading to fractures over time
Hyperlipidemia (elevated lipids – cholesterol – in the bloodstream)
Recurrent opportunistic or bacterial infections
Think you have Cushing’s? Get to a doctor and don’t give up!