I’m not sure if this should go under humor or what.
This is funny/not funny but it reminds me so much of insurance companies thinking that they somehow know better than the doctor in the room with me.
Hooray for this doctor for getting it.
A doctorâs letter to UnitedHeathcare for denying nausea medication to a child on chemotherapy.
MaryO’Note:Â Cushing’s Disease is a subset of Cushing’s Syndrome and is caused by pituitary issues.
High cortisol â and its deleterious effects on the body â may be a more commonly recognized phrase in today’s healthcare lexicon. Still, doctors say there is a need for more awareness of a rare and potentially life-threatening condition involving cortisol, known as Cushing’s Syndrome
In a new editorial from MerckManuals.com, Ashley B. Grossman, MD, University of Oxford; Fellow, Green-Templeton College, addresses common patient questions around Cushing syndrome.
1. What causes Cushing syndrome?
Adrenal glands release hormones that help control blood pressure, heart rate, balance of water and salt, response to stress, and more, says Grossman. Cushing syndrome occurs when these glands release too much of the hormone cortisol, or you are taking a hormone like cortisol.
This typically has one of two causes:
2. What are the symptoms of Cushing syndrome?
Cortisol is an essential hormone in the body. Having too much can cause many changes, including increases in blood sugar and cholesterol. Corticosteroids also alter the amount and distribution of body fat, says Grossman.
Other symptoms of Cushing syndrome include:
Cushing syndrome can be life-threatening, says Grossman. Very high cortisol will lower your potassium level, which can cause heart problems.
3. What can I expect at a doctor’s appointment for Cushing syndrome?
For patients not taking high levels of steroids, Cushing syndrome is rare, and many symptoms can have other causes. At the same time, the physical changes can be a good indicator of Cushing syndrome, says Grossman.
If you’re experiencing these symptoms, it’s a good idea to see your primary care doctor right away. Bring some photos of yourself from a few years ago so doctors can see how your body may have changed. Doctors will also ask about anything that could increase steroid levels, such as using creams with steroids or inhaled steroids, as well as recreational drug use.
Once a patient is diagnosed with Cushing syndrome, it’s important to see a specialist for further guidance and treatment, says Grossman. Treatment will depend on whether the problem is in the adrenal glands, the pituitary gland, or elsewhere.
4. Is it safe to take steroids?
Steroids can be a game-changing treatment for many patients, but they do have a risk of side effects, says Grossman. They need to be taken as prescribed. Doctors never stop the use of corticosteroids abruptly if people have been taking them for more than two or three weeks. Instead, doctors gradually reduce (or taper) the dose over weeks and sometimes months.
To read more of Grossman’s insights on Cushing syndrome, visit this editorial on MerckManuals.com.
About The Merck Manuals and MSD Manuals
First published in 1899 as a small reference book for physicians and pharmacists, The Merck Manual grew in size and scope to become one of the world’s most widely used comprehensive medical resources for professionals and consumers. As The Manual evolved, it continually expanded the reach and depth of its offerings to reflect the mission of providing the best medical information to a wide cross-section of users, including medical professionals and students, veterinarians and veterinary students, and consumers. In 2015, The Manuals kicked off Global Medical Knowledge 2020, a global initiative with the goal to make the best current medical information accessible by up to three billion professionals and patients around the world by 2020. The Manuals achieved that goal, and today its medical information is available in nearly 250 countries and in 14 languages. It’s continuing its ambitious mission through outreach, education and creating new reliable medical resources. For access to thousands of medical topics with images, videos and a constantly expanding set of resources, visit MerckManuals.com or MSDManuals.com and connect with us on social media: For Consumers in the U.S. and its territories: X (formerly Twitter) and Facebook. For Professionals in the U.S. and its territories: X (formerly Twitter) and Facebook
About Merck
At Merck, known as MSD outside of the United States and Canada, we are unified around our purpose: We use the power of leading-edge science to save and improve lives around the world. For more than 130 years, we have brought hope to humanity through the development of important medicines and vaccines. We aspire to be the premier research-intensive biopharmaceutical company in the world â and today, we are at the forefront of research to deliver innovative health solutions that advance the prevention and treatment of diseases in people and animals. We foster a diverse and inclusive global workforce and operate responsibly every day to enable a safe, sustainable and healthy future for all people and communities. For more information, visit www.merck.com and connect with us on  X (formerly Twitter) , Facebook, Instagram, YouTube and LinkedIn.
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SOURCE The Merck Manuals
Didn’t we all do this?
A young woman saved her own life after successfully self-diagnosing cancer/Cushing’s that doctors had missed because she researched her own worrying symptoms on TikTok.
Cleo Lambert, from Tring in Hertfordshire, had been unknowingly living with a cancerous tumour growing behind her liver for years.
Her life started to fall apart two-and-a-half years ago when her GP was unable to provide answers to the painful symptoms she was suffering.
However, this all changed when the prospective fashion student undertook a TikTok scrolling session in the summer of 2024 and noticed a post which told her she may have a rare condition called Cushing’s Syndrome.
The 21-year-old undertook a TikTok scrolling session in the summer of 2024 and noticed a post which told her she may have a rare condition called Cushing’s syndrome.
Her findings prompted doctors to order an X-ray, which revealed a 17cm cancerous mass had been growing inside the 21-year-old.
It was surgically removed and she immediately began life-saving chemotherapy.
Due to the size of the growth, medics told her that without the operation that year, she would not have survived.
Cleo’s findings prompted doctors to order an X-ray, which revealed a 17cm cancerous mass had been growing inside her.
“Doctors told me the tumours are ‘usually between 3-4cm, 5cm is more serious.'”, she told the Female Lead.
“They told me that mine had likely been growing for years and there was a chance it could even be cancerous.”
“A doctor also told me Iâd probably saved a year of time based on how long a Cushingâs diagnosis could typically take. I think if Iâd waited another year, with the size the tumour already was, I’d be dead.”
In the two-and-a-half years prior, Cleo had suffered from painful bouts of bloating after eating and had been putting on weight.
Cleo was seeing her usually thick locks of hair thinning at a rapid rate.
GPs initially told her she had polycystic ovary syndrome, a common hormonal disorder affecting women that was not curable but manageable through lifestyle choices.
But Cleo’s health continued to decline further and new symptoms – such as irregular periods, exhaustion and unexplained bruising – left her unable to leave her own house.
Desperate to find out what was wrong with her, Cleo managed to get a endocrinologist appointment booked in, but had 12 weeks to wait until she saw them.
It was during that period that Cleo undertook some research on the social media platform and found she had Cushing’s Syndrome – a rare condition caused by prolonged exposure to the stress hormone cortisol in the body.
“I saw a video that said: ‘Do you have these symptoms?’ and it listed extra weight around the stomach, a puffy face, exhaustion, hair loss, excessive hair growth in unusual places. I was reading a checklist of my life,” Cleo told the Female Lead.
“In the comments, people mentioned something called Cushingâs syndrome. I Googled it and immediately knew: this was me.”
Cleo ended up going down a “researching rabbit hole” into a “corner of health” she had never heard of before.
Armed with a mountain of research, Cleo went to her appointment in July 2024 and presented her theory, which the doctor agreed with.
Tests showed her cortisol levels were absurdly high, measuring at 1,334 nmol/l on one measure, where the normal level is around 135 nmol/l.
But more shockingly, X-rays revealed that Cleo had a 17cm tumour, the size of an aubergine, pushing up against her stomach and growing into her liver.
Cleo’s symptoms first started appearing after she returned home from travelling around Australia in the summer of 2022.
Despite being a regular gym goer and healthy eater, she was gaining weight easily and seeing her usually thick locks of hair become a lot thinner.
After being told she had PCOS, Cleo started to make changes to her lifestyle to see it it would help.
“I blamed the contraceptive pill and stopped taking it, but nothing changed,” She said.
“The doctors told me I had PCOS which I could manage it with diet and lifestyle changes. I cut out coffee, reduced carbs, stuck to low-impact exercise.”
But Cleo’s symptoms only got worse and things started to spiral in February 2024.
“My periods were irregular, I felt exhausted all the time, and I was getting strange new symptoms,” she said.
“I was getting nosebleeds, unexplained bruising, stretch marks spread across my body, appearing even from stretching after workouts.”
Alarm bells began to sound even louder when Cleo’s freshly inked tattoo left her arm with bruising on it for weeks, something which had never happened before.
She had been hoping to start university that summer, but her rapid health decline had left her not wanting to leave the house.
“The most frustrating part was not having any answers,” she said.
“No one said I looked different except my older sister, and I appreciated her honesty.
“I was desperate for answers. I felt like I was in someone elseâs body and I knew there was something wrong, but felt helpless not understanding what it was.”
But thanks to her TikTok diagnosis, Cleo’s chemo treatment finishes this month and she is hopeful of going on holiday this summer and potentially go to university this September, a year later than planned.
As well as being grateful to the helpful content regarding her symptoms, Cleo also praised TikTok for enabling her to connect with other young woman and girls who were suffering from Cushing’s Syndrome.
“TikTok has played another role in my health journey. It helped me connect with a girl whoâd been through almost the exact same thing – first misdiagnosed with PCOS, then later discovering she had Cushingâs too.
“Finding people my age going through similar experiences has been incredibly reassuring.
“While the UKâs National Health Service website is helpful, nothing compares to hearing real stories from creators on TikTok who are living it.
“Iâd often reach out to them directly with specific questions, and those conversations gave me reassurance that medical information alone couldnât.
“If youâd told me everything I was about to go through, I wouldâve shit myself. But going from diagnosis to operation in two months meant there was no time to overthink, which was a weird kind of blessing.
“So, if you think something is wrong, trust your gut. You know what is normal for you. Keep pushing for answers. And keep scrolling on TikTok.”
For photos see:Â https://www.lbc.co.uk/news/health/tiktok-saved-my-life-student-life-threatening-tumour/
Refer a friend or family member to see Dr. Friedman as a new patient and get a $50 voucher for your next appointment.
Here is a list of reasons you or your friend or family member should see Dr. Friedman
For more information go to Dr. Friedmanâs website https://www.
MaryO’Note: This is really basic information. Maybe News 9 should have checked with a doctor who has actually been diagnosed with Cushing’s or at least tested for it!
~~~~~~~~~~~~~~~~~~~~~~~
In our Daily Dose, a viewer is asking about hormone problems that can cause your face to become round. Dr.  Lacy Anderson  joined News 9 to explain how some hormone disorders, like Cushing syndrome work.
Cushingâs syndrome is a rare disorder caused by the body making too much cortisol over a long period of time. It can be caused by a tumor of the adrenal gland, which makes cortisol, or it can be caused by a tumor of the pituitary gland, which controls the adrenal gland.
Cushingâs syndrome can cause a rounded face, known as a moon face. It can cause weight gain and fat deposits on the upper back, known as a buffalo hump. It can also cause stretch marks on the abdomen. It can cause high blood pressure, and high blood sugar, and increase the risk of cataracts and osteoporosis. Occasionally, Cushingâs syndrome can be caused by long-term, high-dose steroid use.
For pituitary or adrenal tumors, surgery can cure this condition. Iâve had several patients wanting me to check their cortisol levels recently, so this condition may have hit social media feeds, but Iâve never diagnosed Cushingâs syndrome because itâs so rare. I can usually take one look at my patients and reassure them that they donât have Cushingâs syndrome.
Stay healthy and take care!
A video is included in the article at https://www.news9.com/story/6658b8f860ad19ad44c6da8f/daily-dose:-cushing-syndrome–hormones-disorders
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. Â 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. Â 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. Â 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: Â I haven’t added anything much to this list – HOORAY! Â OTOH, nothing has gone away, either. Â
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:Â
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. Â I will see my PCP about that on Wednesday after having this for about 8 months or so. Â I looked up the possibilities on Dr. Google and there are too many to contemplate. Â I hope it’s not arthritis. Â 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: Â Somehow, I forgot that I was diagnosed with osteoarthritis in the early 1980’s and took NSAIDs for about 30 years. Â 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 Iâve 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: Â I seem to be getting up earlier. Â I have an issue with a joint on my ring finger, left hand. Â 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: Â House doesn’t seem to be on anymore so I no longer have a favorite medical TV show.
8. A gadget I couldnât live without is: Wow, so many. My iPhone is the main one with a few others very close.
November 21, 2015: Â 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: Â Dreams, some scary, some that just play like endless loops until I get up. Â I still get up for the bathroom, too. Pain, sometimes that itching.Â
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: Â 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. Â
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: Â I still teach piano, although it’s hard to play now due to that joint issue. Â I also am webmaster for my church, for my husband’s company and the Cushing’s sites. Â I also inherited my friend’s menopause site when she died. Â So, there’s a lot of stuff to do, but I can still work naps in. Â 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..Â
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 Iâd 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 wasnât feeling well was: trying to understand that I wasn’t just fat and lazy, I really had medical issues going on.
29. Iâm 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!
More from Dr. Karen Thames:
Myth: “Vitamins and Natural Remedies can cure/heal Cushing’s”
Fact: Do you know how many people have told me that if I just “juice”, I will be cured from Cushing’s or Adrenal Insufficiency?! I appreciate the sentiment, but the sad reality is that no amount of juicing and no vitamin will cure Cushing’s. Some Cushing’s patients do take vitamins, some do eat raw food or paleo diets, and some even juice. However, this is just a lifestyle choice and not an attempt to cure Cushing’s. I must admit that when you have such a dreadful disease, you do sometimes take desperate measures to heal yourself. Perhaps, doing acupuncture or some other form of natural healing technique seems attractive at times. Take it from a person who has had acupuncture, seen many natural doctors, juiced, took vitamins, ate a raw food diet, and yes, I EVEN did a series of colonics! If you have ever had colonics, you know that it brings new meaning to the phrase, “no pain, no gain!”
Seriously, this is all before I knew I had Cushing’s. I watched as every person who administered the different kinds of treatment scratched their heads as I continued to gain weight, eventually at a rate of 5 pounds per week! They couldn’t believe that I was actually still gaining weight. Their natural and not surprising response, of course, was to project blame onto me. “Karen, there is NO way you are following protocol! You MUST be lying on your food log!” What we all didn’t realize is that I was suffering from a life-threatening illness called Cushing’s Disease that caused morbid obesity in me and that none of those “remedies” would EVER work!
Now, I have already been in Twitter wars over this topic. Someone tried to tell me that a raw food diet will “cure Cushing’s” and then she told me that I am “ignorant and in denial”! She proceeded to tell me that her daughter, though she had surgery to treat Cushing’s, was REALLY cured because of changing her diet. She also told me that the daughter, who had her Adrenal Glands removed, didn’t need steroids. Listen folks, this is VERY dangerous! I have no adrenal glands and I NEED steroids! Cortisol is life sustaining and you will die without it! I fully expect that someone will argue this point until the cows come home. It doesn’t matter. It won’t change the facts. Cushing’s is caused by excess cortisol in the body. The ONLY treatment is to target the source of the excess cortisol (i.e.brain tumor, adrenal tumor, ectopic tumor, or prolonged steroid use for another disease). Targeting the source is the first line of treatment. Cushing’s Syndrome/Disease will lead to death if not treated properly! #BattlegroundDiagnosis
Disclaimer: I am not a medical doctor. Please seek the advice of a medical professional if you have questions or need further assistance.
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People sometimes ask me how I found out I had Cushingâs 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: âIf you have these symptomsâŚâ
I found the row with my symptoms and the answer read ââŚask your doctor about Cushingâsâ.
After that article, I started reading everything I could on Cushingâs, I bought books that mentioned Cushingâs. 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 Cushingâs but no one would believe me. My doctors would say that Cushingâs Disease is too rare, that I was making this up and that I couldnât have it.
In med school, student doctors are told âWhen you hear hoofbeats, think horses, not zebrasâ.
According to Wikipedia: âZebra 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 âzebraâ is the broader concept.
The term derives from the aphorism âWhen you hear hoofbeats behind you, donât expect to see a zebraâ, 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.â
So, doctors typically go for the easily diagnosed, common diseases. Â Just because something is rare doesnât mean that no one gets it. Â We shouldnât be dismissed because weâre 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. Â Both he and his partner recognized that I had Cushingâs but, of course, couldnât do anything further with me. Â 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  ââŚask your doctor about Cushingâsâ.
Looking back, I can see Cushingâs symptoms much earlier than 1983. Â But, that âs for a different post.
I first saw a similar image to this one with the saying Life. Be in it at a recreation center when my son was little.  At the time, it was “Duh, of course, I’m in it”.
The original image was a couple of males, a couple of females, and a dog walking/running. Â No folks in wheelchairs, no older folks, and certainly no zebras.
It would be nice to have everyone out there walking or running but that’s not real life, at least in the Cushie world. Â It’s been a long time since I’ve really been In My Life – maybe it’s time to get back.
A dear friend who had not one, but two forms of cancer was traveling throughout Europe for the first time after her husband’s death wrote:
Some final words before I turn in for the night. If there is a spark of desire within you to do something which is not contrary to God’s Holy Law, find a way to make it happen. All things are possible and blessings abound for those who love Him. Life is such an adventure. Don’t be a spectator – live every single moment for Him and with Him.
Somedays, it’s hard even getting up in the morning but I’m trying. Pre-COVID I took Water Aerobics for People with Arthritis and I actually went to class three times a week. After COVID, I took the stuff I learned there and did it 3 times a week as part of “water walking” by myself or with my DH.  Finally, after my second knee surgery on February 3, 2025, I’m going back to the pool. But this time, I’m going to try “Water Aerobics for People”. NO Arthritis!
I got a “part-time” job several years ago and I’m still teaching piano. We had plans for a cruise to Norway which COVID made us reschedule for Alaska, which wass to be rescheduled…again.
I’ve recently started playing the balalaika with an orchestra even though I never even touched one before.
This is the one and only life I’ll ever have and I want to make the most of it!
