Today is the final day of the Cushing’s Awareness Challenge and I wanted to leave you with this word of advice…
To that end, I’m saving some of what I know for future blog posts, maybe even another Cushing’s Awareness Challenge next year. Possibly this has become a tradition.
I am amazed at how well this Challenge went this year, giving that we’re all Cushies who are dealing with so much. I hope that some folks outside the Cushing’s community read these posts and learned a little more about us and what we go through.
So, tomorrow, I’ll go back to posting the regular Cushing’s stuff on this blog – after all, it does have Cushing’s in its name!
I am trying to get away from always reading, writing, breathing Cushing’s, and trying to celebrate the good things in my life, not just the testing, the surgery, the endless doctors.
If you’re interested, I have other blogs about traveling, friends, fun stuff and trying to live a good life, finally. Those are listed in the right sidebar of this blog, past the Categories and before the Tags.
People sometimes ask me how I found out I had Cushing’s Disease. Theoretically, it was easy. In practice, it was very difficult.
In 1983 I came across a little article in the Ladies Home Journal which said: “If you have these symptoms…”
I found the row with my symptoms and the answer read “…ask your doctor about Cushing’s”.
After that article, I started reading everything I could on Cushing’s, I bought books that mentioned Cushing’s. I asked and asked my doctors for many years and all of them said that I couldn’t have it. It was too rare. I was rejected each time.
Due to all my reading at the library, I was sure I had Cushing’s but no one would believe me. My doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.
In med school, student doctors are told “When you hear hoofbeats, think horses, not zebras“.
According to Wikipedia: “Zebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so “zebra” is the broader concept.
The term derives from the aphorism “When you hear hoofbeats behind you, don’t expect to see a zebra”, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore. Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse. By 1960, the aphorism was widely known in medical circles.”
So, doctors typically go for the easily diagnosed, common diseases. Just because something is rare doesn’t mean that no one gets it. We shouldn’t be dismissed because we’re too hard to diagnose.
When I was finally diagnosed in 1987, 4 years later, it was only because I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker so my leg looked like a cut log with rings.
When I went to my Internist the next day he was shocked at the size of the rings. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.
Fortunately, that new doctor ran a twenty-four-hour urine test and really looked at me and listened to me. Both he and his partner recognized that I had Cushing’s but, of course, couldn’t do anything further with me. They packed me off to an endo where the process started again.
My final diagnosis was in October 1987. Quite a long time to simply “…ask your doctor about Cushing’s”.
Looking back, I can see Cushing’s symptoms much earlier than 1983. But, that ‘s for a different post.
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).
All 31 crew members aboard perished; passengers and other crew members had earlier been offloaded in Belize.
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.
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.
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.
This is another semi-religious post so feel free to skip it 🙂
I’m sure that many would think that Abide With Me is a pretty strange choice for my all-time favorite hymn.
My dad was a Congregational (now United Church of Christ) minister so I was pretty regular in church attendance in my younger years.
Some Sunday evenings, he would preach on a circuit and I’d go with him to some of these tiny churches. The people there, mostly older folks, liked the old hymns best – Fanny Crosby and so on.
So, some of my “favorite hymns” are those that I sang when I was out with my Dad. Fond memories from long ago.
In 1986 I was finally diagnosed with Cushing’s after struggling with doctors and trying to get them to test for about 5 years. I was going to go into the NIH (National Institutes of Health) in Bethesda, MD for final testing and then-experimental pituitary surgery.
I was terrified and sure that I wouldn’t survive the surgery.
Somehow, I found a 3-cassette tape set of Readers Digest Hymns and Songs of Inspiration and ordered that. The set came just before I went to NIH and I had it with me.
At NIH I set up a daily “routine” of sorts and listening to these tapes was a very important part of my day and helped me get through the ordeal of more testing, surgery, post-op and more.
When I had my kidney cancer surgery, those tapes were long broken and irreplaceable, but I had replaced all the songs – this time on my iPod.
Abide With Me was on this original tape set and it remains a favorite to this day. Whenever we have an opportunity in church to pick a favorite, my hand always shoots up and I request page 700. When someone in one of my handbell groups moves away, we always sign a hymnbook and give it to them. I sign page 700.
I think that many people would probably think that this hymn is depressing. Maybe it is but to me it signifies times in my life when I thought I might die and I was so comforted by the sentiments here.
This hymn is often associated with funeral services and has given hope and comfort to so many over the years – me included.
If you abide in Me, and My words abide in you, you will ask what you desire, and it shall be done for you.
Abide With Me
Words: Henry F. Lyte, 1847.
Music: Eventide, William H. Monk, 1861. Mrs. Monk described the setting:
This tune was written at a time of great sorrow—when together we watched, as we did daily, the glories of the setting sun. As the last golden ray faded, he took some paper and penciled that tune which has gone all over the earth.
Lyte was inspired to write this hymn as he was dying of tuberculosis; he finished it the Sunday he gave his farewell sermon in the parish he served so many years. The next day, he left for Italy to regain his health. He didn’t make it, though—he died in Nice, France, three weeks after writing these words. Here is an excerpt from his farewell sermon:
O brethren, I stand here among you today, as alive from the dead, if I may hope to impress it upon you, and induce you to prepare for that solemn hour which must come to all, by a timely acquaintance with the death of Christ.
For over a century, the bells of his church at All Saints in Lower Brixham, Devonshire, have rung out “Abide with Me” daily. The hymn was sung at the wedding of King George VI, at the wedding of his daughter, the future Queen Elizabeth II, and at the funeral of Nobel peace prize winner Mother Teresa of Calcutta in1997.
Abide with me; fast falls the eventide;
The darkness deepens; Lord with me abide.
When other helpers fail and comforts flee,
Help of the helpless, O abide with me.
Swift to its close ebbs out life’s little day;
Earth’s joys grow dim; its glories pass away;
Change and decay in all around I see;
O Thou who changest not, abide with me.
Not a brief glance I beg, a passing word;
But as Thou dwell’st with Thy disciples, Lord,
Familiar, condescending, patient, free.
Come not to sojourn, but abide with me.
Come not in terrors, as the King of kings,
But kind and good, with healing in Thy wings,
Tears for all woes, a heart for every plea—
Come, Friend of sinners, and thus bide with me.
Thou on my head in early youth didst smile;
And, though rebellious and perverse meanwhile,
Thou hast not left me, oft as I left Thee,
On to the close, O Lord, abide with me.
I need Thy presence every passing hour.
What but Thy grace can foil the tempter’s power?
Who, like Thyself, my guide and stay can be?
Through cloud and sunshine, Lord, abide with me.
I fear no foe, with Thee at hand to bless;
Ills have no weight, and tears no bitterness.
Where is death’s sting? Where, grave, thy victory?
I triumph still, if Thou abide with me.
Hold Thou Thy cross before my closing eyes;
Shine through the gloom and point me to the skies.
Heaven’s morning breaks, and earth’s vain shadows flee;
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…
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)!
Here’s something I had made for Sue with SuperSue embroidered on the back.
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 Lifeand am happy that I’m not dealing with anything worse.
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!
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 2021, we have over 60 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…