Robin (staticnrg) and Mary O’Connor (MaryO) Discuss Spreading the Word about Cushing’s

 

Part 1. Robin and MaryO discussed the role of blogs in helping to spread the word about Cushing’s. They also discussed popular doctor blogs and other topics of interest to Cushing’s Patients.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/08/21/tentative-interview-with-joselle

 

Part 2.  Robin and MaryO discuss the role of blogs in helping to spread the word about Cushing’s. They also discuss popular doctor blogs and other topics of interest to Cushing’s Patients, friends and family.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/09/25/robin-staticnrg-and-mary-oconnor-maryo-discuss-spreading-the-word-about-cushings-part-2

 

Would you like to participate? Just click here and tell me a bit about yourself. Then check the box that you would like to be interviewed. We’d love to have you!

 

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Day 30: Cushing’s Awareness Challenge 2017

Today is the final day of the 2017 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 will continue to be a tradition. Or not.  Interest seems to be dwindling down a bit 😦

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…

Time-for-me

Choose wisely…

 

Interview with Katie (kvb927)

 

Katie’s short bio: Symptoms started in 2002 at age 22, or before. Jan. 2008 – 2 mm. area of differential enhancement on right pituitary and 11 mm. pineal cyst identified by MRI Jan. 2008 – DX – hypothalamic amenorrhea Mar. 2008 – DX – pituitary adenoma, hypogonadism – female Katie will be an officer in the upcoming Cushing’s Help Organization.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/07/24/interview-with-katie-kvb927

 

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Day 29: Cushing’s Awareness Challenge 2017

People often ask me how I found out I had Cushing’s Disease.  Theoretically, it was easy.  In practice, it was very difficult.

Ladies Home Journal, 1983In 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…

 

Myth: “Vitamins and Natural Remedies can cure/heal Cushing’s”

More from Dr. Karen Thames:

Myth: “Vitamins and Natural Remedies can cure/heal Cushing’s”

myth-busted

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.

If you want to follow our documentary, please go to http://www.Facebook.com/Hug.A.Cushie

 

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Interview with Kate (Fairley)

 

Kate (Fairley), July 17, 2008. Kate had symptoms since 1991. She had two pituitary surgeries and another recurrence. She is not yet cured and her current diagnoses are Idiopathic Intracranial Hypertension, panhypopituitarism and a CSF leak. She has appeared on National Geographic TV in the Science of Obesity.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/07/17/interview-with-kate-fairley

Sadly, Kate was only 46 when she died on June 23, 2014.  Her bio and video can be found here: https://cushingsbios.com/2015/06/23/1623/

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Day 28: Cushing’s Awareness Challenge 2017

And today, we talk about pink jeeps and ziplines…

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

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

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

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

The beginning text reads:

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

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

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

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

In 2009, I figured I had “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 brake. 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!