Cushing’s Help message board member sherryc presented this PowerPoint at Pioneer Pacific College in 2017. I am resharing since Sherry recently died.
It took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.
She says that it took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.
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.
Meanwhile…
I’ve been thinking about this since the article I posted on doctors not understanding what it was like for a post-op Cushing’s disease patient – ME! I’m updating this for Cushings Awareness Month 2025.
I originally posted this on Facebook way back in 2010.
Edits from November 21, 2015 are in blue italic
Edits from September 25, 2023 are in red italic
Edits from February 29, 2024 are in green italic
Edits from April 2025 are in purple italic
I really liked Jessica’s list, so I decided to make one of my own. I was looking in my blog for what I wrote already about Psalm 116 and found out that I already did a very similar list in September 2009. Talk about bad memory!
30 Things About My Invisible Illness You May Not Know
1. The illnesses I live with are: Cushing’s Disease and kidney cancer (renal cell carcinoma). I also have secondary adrenal insufficiency as well as a growth hormone deficiency. I had pituitary surgery on November 3, 1987 and had my kidney cancer (kidney and adrenal gland) removed May 9, 2006. Having my adrenal gland removed acerbates my post-op pituitary issues. My one remaining adrenal gland doesn’t work well and I cannot replace my deficient growth hormone because I had cancer.
November 21, 2015: I haven’t added anything much to this list – HOORAY! OTOH, nothing has gone away, either.
A couple days/nights a month, I have unexplained, random itching. It could be on my foot, then jump to my stomach, then anywhere. It keeps me awake at night and is very annoying. I originally had this in menopause and I’m very annoyed that it has come back.
I mentioned this to my endo last year because of the possibility of “hormone withdrawal” and he said I should probably talk to my PCP about this, and that it could be “serious”. I haven’t yet because I don’t like the possibility of tracking down some other dread, unknown disease. According to that great doctor, Wikipedia:
Causes of formication include normal states such as onset of menopause (i.e. hormone withdrawal). Other causes are medical conditions such as pesticide exposure, mercury poisoning, diabetic neuropathy, skin cancer, syphilis, Lyme disease or herpes zoster (shingles). Formication can also be a result of stimulant intoxication (e.g. methamphetamines, cocaine) or alcohol withdrawal in alcoholics (i.e. delirium tremens), and is often accompanied by visual hallucinations of insects.
Also, I’ve been having terrible swelling, and pain in my left ring finger. I will see my PCP about that on Wednesday after having this for about 8 months or so. I looked up the possibilities on Dr. Google and there are too many to contemplate. I hope it’s not arthritis. I already know I can’t take meds for that.
September 25, 2023 – I’m able to take growth hormone injections – Omnitrope – again but I don’t see it making any difference.
In March of 2023 I had a total left knee replacement after many steroid injections and one series of hyaluronic acid. I documented all that in another of my blogs. I am expecting to do the right knee possibly in the fall of 2024 but I’m putting it off as long as possible.
February 3, 2025 I had a total right knee replacement. It was “easier than the left but I developed an allergy to something which is yet unknown and I had a terrible itch rash for about a month.
2. I was diagnosed with Cushing’s in the year: 1985; adrenal insufficiency in 1999; GH deficiency in 2004 and kidney cancer in 2006.
November 21, 2015: Somehow, I forgot that I was diagnosed with osteoarthritis in the early 1980’s and took NSAIDs for about 30 years. Those are another kidney cancer no-no.
In April of 2021 I had a Mohs Surgery for Squamous Cell Carcinoma. A description and photos are available here: https://maryomedical.com/2021/05/09/the-mohs-nose/
3. But I had Cushing’s symptoms since: 1983 for sure. Looking back, I can trace some other symptoms to the 1970s.
4. The biggest adjustment I’ve had to make is: Sleeping so much. When I say I have to sleep, that’s it, no matter where I am, no matter what I’m doing. From the cancer – not being able to take my arthritis meds.
5. Most people assume: I am completely healthy. I had surgery, so everything is fine. I am, however, lazy.
6. The hardest part about mornings are: getting up. I could sleep until at least noon if I didn’t have an alarm AND something specific to do. It’s also hard to get my joints so they work. Sometimes I have a hard time standing. I have a footed cane beside the bed to help me get up.
November 21, 2015: I seem to be getting up earlier. I have an issue with a joint on my ring finger, left hand. It often throbs at night and wakes me up.
2023-2024, I seem to be waking up about 1 or so. I guess because my 2-3 hour naps, my body is treating bedtime as just another nap.
2024-2025. I’m waking up about 3 and doing some online work, then napping for about 30 minutes to an hour until my alarm goes off at 9
7. My favorite medical TV show is: House. I started watching it because an episode about Cushing’s was loosely based on a Cushie I know.
November 21, 2015: House doesn’t seem to be on anymore so I no longer have a favorite medical TV show.
8. A gadget I couldn’t live without is: Wow, so many. My iPhone is the main one with a few others very close.
November 21, 2015: iPad now.
9. The hardest part about nights are: Staying asleep. I’m always tired but I often have to get up to go the the bathroom. Then, I often have trouble getting back to sleep.
November 21, 2015: Dreams, some scary, some that just play like endless loops until I get up. I still get up for the bathroom, too. Pain, sometimes that itching.
10. Each day I take __ pills & vitamins: Not much. I only take Cortef and lisinopril/HCTZ. I used to take a lot of other meds but, due to having only one kidney, I can’t take much of anything, including vitamin C, aspirin and NSAIDs. I pray I don’t get headaches anymore!
November 21, 2015: Nowadays, it’s only the Cortef.
If absolutely necessary, I take Alavert for allergies and Benadryl if I’m in an itchy pattern; Tylenol for headaches.
Because of the cancer, I can’t take Growth Hormone any more.
September 25, 2023 – I’m able to take growth hormone injections – Omnitrope – again but I don’t see it making any difference.
11. Regarding alternative treatments I: have to clear anything I take or do with my kidney cancer surgeon so it’s easier to just not take anything.
12. If I had to choose between an invisible illness or visible I would choose: What I have. While I wish people would understand better, I don’t want anyone to feel pity or single me out.
13. Regarding working and career: I’ve been fortunate – I’ve been a piano teacher forever and I can control my hours to get in naps when I need them. I could not work a 40-hour job.
November 21, 2015: I still teach piano, although it’s hard to play now due to that joint issue. I also am webmaster for my church, for my husband’s company and the Cushing’s sites. I also inherited my friend’s menopause site when she died. So, there’s a lot of stuff to do, but I can still work naps in. I still could not work a normal work day.
September 25, 2023 – I still teach piano, am the Director of Communications for my church and keep the Cushing’s sites going – sort of. I still take a lot of naps.
14. People would be surprised to know: that I have trouble dealing with so many things.
15. The hardest thing to accept about my new reality has been: that I can’t be the Energizer Bunny any more. No project days where lots of stuff gets done.
16. Something I never thought I could do with my illness that I did was: start a website and support group to help others.
17. The commercials about my illness: NONE!
18. Something I really miss doing since I was diagnosed is: I miss Sweet Adelines. I loved the singing, the dressing up in sequins and false eyelashes to sing before huge crowds. Almost like being on Broadway. I also miss playing violin in a local orchestra.
January 2024, I bought a silent e-violin so I can start practicing again without bothering my 100-year-old mom. In March I joined a balalaika orchestra!
In 2025 I’m sill playing with the balalaika orchestra
19. It was really hard to have to give up:my arthritis meds.
20. A new hobby I have taken up since my diagnosis is: Naps, sleeping.
21. If I could have one day of feeling normal again I would: I cannot even imagine. I could join a gym again, although for only one day it wouldn’t do much. I could commit to doing something in the afternoons without napping before. I could get some of my house tidied up…
22. My illness has taught me: a lot about hormones, glands, medical terms and… HTML. I almost think I could have gone to med school if I’d had the stamina.
23. Want to know a secret? One thing people say that gets under my skin is: “Oh, my friend’s dog (or cat/horse/ferret) had that [Cushing’s]. The vet just gave the dog some pills and she was fine. GRRRRRRRRRRRRRRRRR!
24. But I love it when people: listen to me when I try to tell them a bit about Cushing’s, even if it is a dumbed-down version.
February 15-16, 2024 I had the opportunity to be in both Fair Oaks Emergency Room and the hospital in Fairfax, VA.
Whenever a nurse/medical tech mentioned steroids, I asked what they knew about Cushing’s. One asked if it was a medication. DUH!
Needless to say, none were very Cushing’s-savvy. So, I gave them all the abbreviated version of my Cushie Story.
I think (and hope!) that they will all remember the day that they met a real live Cushing’s patient..
My left knee surgey was supposed to be in early January 2025 but it was snowed out. Because it was rescheduled for more than a month later, I had to redo some testing. I was amazed that the doctor in the walk-in clinic knew about Cushing’s although she’d never met a real one in the wild. I spent a lot of time talking to her.
25. My favorite motto, scripture, quote that gets me through tough times is:
Psalms 116:
“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….”
After I was finished with the 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 did 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 verse 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 verse was different. Maybe I wrote it down wrong, maybe someone changed it. Whatever. When I read this Psalm aloud, I just started crying, it so spoke to me and my situation.
Another reading I love is:The Best Day Of My Life by Gregory M Lousignont
“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 this and “my” Psalm can help me more than anything else.
26. When someone is diagnosed I’d like to tell them: Learn everything you can about your disease. You know more about your body than anyone else. If your doctor tells you something that you know to be wrong about *you* – get another doctor! Don’t waste your life getting good care for yourself.
27. Something that has surprised me about living with an illness is: how intolerant other people can be and the discrimination that I have run into, such as not being included in some activity just because my physical limitations would make it inconvenient for them to deal with accommodating me.
28. The nicest thing someone did for me when I wasn’t feeling well was: trying to understand that I wasn’t just fat and lazy, I really had medical issues going on.
29. I’m involved with Invisible Illness Week because: I like people to know that just because someone looks healthy, they may not be. There are lots of people out there with invisible illnesses who need understanding, compassion and, possibly, help.
30. The fact that you read this list makes me feel: like you’re really interested.
The 2009 version was pretty close!
Thanks for being interested enough to read this!
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.
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
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.
~John 15:7
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;
In life, in death, O Lord, abide with me.
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.
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.
“In October 1998, the majestic schooner Fantome came face-to-face with one of the most savage storms in Atlantic history. The last days of the Fantome are reconstructed in vivid and heartbreaking detail through Jim Carrier’s extensive research and hundreds of personal interviews. What emerges is a story of courage, hubris, the agony of command, the weight of lives versus wealth, and the advances of science versus the terrible power and unpredictability of nature.”
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.
I wrote parts of this in 2008, so all the “yesterdays” and “last weeks” are a little off.
Wow. That’s about all I can say. Yesterday was possibly the best day of my life since I started getting Cushing’s symptoms, and that was over 30 years ago. More than a quarter of a century of feeling exhausted, fatigued. A quarter of my life spent taking naps and sleeping.
Last week in this post I wrote in part:
I went to the endo yesterday. Nothing has changed for me. Nothing will. He wants me to take more cortef. I don’t want to gain weight again. He looked up Provigil and it’s not indicated for panhypopituitarism. So he won’t prescribe it. My kidney surgeon probably won’t let me take, anyway, but it was worth a try.
…
He did mention that in “only” 2.5 years maybe I can go back on growth hormone. I don’t want to live like this another year let alone 2.5. But then, when I was on GH before it didn’t help me like it helps most everyone else.
I’m tired of catering to a kidney that may or may not fail sometime anyway, tired of being so exhausted all the time. I feel like I’ve lost nearly half my life to this Cushing’s stuff already.
So, yesterday I was supposed to go to a conference on web design for churches. My church sent me because they want me to spiff up their site and make them a new one for Christmas. I wanted to go because, well, I like learning new stuff about the web. I figured that I would learn stuff that would also be useful to me in others of my sites.
And I did!
But the amazing thing is this. My son had told me about a medication that was very similar to Provigil, that he had tried it while he was writing his doctoral thesis and it had helped him.
So, having tried the official doctor route and being rebuffed – again – I had decided to try this stuff on my own.
Just the night before I had written a response on Robin’s wonderful blog that reads in part:
I hate this disease, too.
I was just talking to a friend today about how I’d try nearly anything – even if it ruined my one remaining kidney – to have a few days where I felt good, normal, where I could wake up in the morning rested and be able to have energy for the day.
I want to go out and have fun, to be able to drive for more than 45 minutes without needing to rest, to be have people over for dinner, whatever. I hate being restricted by my lack of energy.
My endo says to cheer up. In two and a half years I can try the growth hormone again. Whoopee. Didn’t work the first time and maybe gave me, or contributed to, cancer growth. Why would I want to look forward to trying that again?
I want to feel good now. Today.
I hate that this disease kills but I also hate that it’s robbed me of half my life already.
I wish doctors would understand that even though we’ve “survived”, there’s no quality of life there.
I hate Cushing’s. It robs so much from so many of us. 🙁
As I said earlier, I have a history of daily naps of at least 3 hours a day. It cuts into everything and prevents me from doing many things. I have to schedule my life around these naps and it’s awful.
A few years ago I went on a Cushie trip to Rockford. I’ve been there a few times and it’s always so much fun. But this first year, we were going to another Cushie’s home for barbecue. I didn’t drive, I rested in the back of the car during the drive. We got there and I managed to stay awake for a little while. Them I put my head down on the dining room table and fell asleep. Our hostess kindly suggested that I move over to the sofa.
So, I have a long history of daily naps, not getting through the day, yadda, yadda.
So, I was a little nervous about yesterday. I really wanted to go to this conference, and was afraid I’d have to go nap in my car.
I got up at 5:30 am yesterday. Before I left at 7:15, I took my Cortef and then I took my non-FDA approved simulated Provigil. (Although it’s not FDA approved, it is not illegal to possess without a prescription and can be imported privately by citizens)
I stayed awake for the whole conference, went to a bell rehearsal, did Stacey’s interview, had dinner and went to bed about 10:30PM. NO NAP! I did close my eyes a little during the 4:00PM session but it was also b-o-r-i-n-g.
I stayed awake, I enjoyed myself, I learned stuff, I participated in conversations (completely unlike shy me!).
I felt like I think normal people feel. I was amazed. Half my life wasted and I finally (thank you Michael!) had a good day.
My kidney doctor and my endo would probably be appalled but it’s about time that I had some life again! Maybe in another 25 years, I’ll take another pill. LOL
Well, the energy from the Adrafinil was a one day thing. I felt great on Thursday. Friday and Saturday I slept more than usual. Saturday, today, was one of those days where I sleep nearly all day. Maybe if I took the drug more it would build up in my system, maybe not. But it was still worth having that one day where I felt what I imagine normal to be.
While I was being a slug today, my husband painted the entire house.
I’m not sure if I would have been this tired today or if I was somehow making up for the nap I didn’t get on Thursday. Whatever the case, I’m glad that I had the opportunity to try this and to experience the wonderful effects, if only for one day.
Information from a site that sells this:
Alertness Without Stimulation
Adrafinil is the prototype of a new class of smart drug – the eugeroics (ie, “good arousal”) designed to promote vigilance and alertness. Developed by the French pharmaceutical company Lafon Laboratories, adrafinil (brand name, Olmifon) has been approved in many European countries for treating narcolepsy, a condition characterized by excessive daytime sleepiness and other unusual symptoms.
Non-narcoleptic users generally find that adrafinil gives them increased energy and reduces fatigue, while improving cognitive function, mental focus, concentration, and memory. It has been reported that quiet people who take adrafinil become more talkative, reserved people become more open, and passive people become more active.
Of course, many stimulant drugs, ranging from caffeine to methamphetamine, are known to produce similar alerting/energizing effects. Adrafinil has been described by some users as a “kinder, gentler” stimulant, because it provides these benefits but usually with much less of the anxiety, agitation, insomnia, associated with conventional stimulants.
Adrafinil’s effects are more subtle than those of the stimulants you may be used to, building over a period of days to months. They appear to be based on its ability to selectively stimulate 1-adrenergic receptors in the brain.2 These receptors normally respond to norepinephrine (noradrenaline), a neurotransmitter linked to alertness, learning, and memory. This is in contrast to conventional stimulants, which stimulate a broader spectrum of brain receptors, including those involving dopamine. Its more focused activity profile may account for adrafinil’s relative lack of adverse side effects.
There’s more info about Adrafinil on Wikipedia
It’s interesting that that snipped report that people become more talkative. I reported that in the original post, too, even though I didn’t realize that this was a possibility.
A good quote that I wish I could relate to better:
“Time is limited, so I better wake up every morning fresh and know that I have just one chance to live this particular day right, and to string my days together into a life of action and purpose.”
Lance Armstrong (1971 – )
Cyclist, seven-time Tour de France champion and cancer survivor
2011 stuff starts here:
Awhile ago I went to a handbell festival. I took a bit of adrafinil on the main day to try to stay awake for the whole day. It didn’t seem to keep me as on as it did before. I can’t be used to it already. Maybe I’m just that much more tired than I was before.
Our son lives in New York and every few years he gives us tickets to see a Broadway show. A couple years ago we took the train to NY to see Wicked. Usually my DH wants to go out and see sights while we’re there. I usually want to nap.
This time we got up on Saturday morning, went out for breakfast. I wanted to take in the whole day and enjoy Wicked so I took some Adrafinil. We got back to the hotel and got ready to go to a museum or other point of interest.
But, DH wanted to rest a bit first. Then our son closed his eyes for a bit…
So, I found myself the only one awake for the afternoon. They both work up in time for the show…
Sigh It was a great show, though.
A recent Christmas I was going to get my son some Adrafinil as a gift. The original place we bought it didn’t have any more stock so I tracked it down as a surprise. He was going to give me some, as well, but couldn’t get it from the original source, either. So he found something very similar called Modafinil. GMTA!
And 2016..
Saturday, 4/23/16 really was one of the best days I’ve had in a long time.
I’ll be writing a longer post about that later on my travel blog but here’s the original plan: https://maryoblog.com/2016/04/23/busy-saturday/
Suffice it to say, we arrived at the Tattoo and I got no nap at all, all day!
2021, I had the bestest ever day…
and, surpassing that:
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 (or recorder or Aerophone or balalaika) for a bit, then go out to lunch with friends, taking Michael and my grandchildren 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.
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.
Tomorrow will be cheerier – watch for it!
