Day 27: Cushing’s Awareness Challenge 2017

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.

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.

Myth: YOU are the problem and the reason…

Myth: YOU are the problem and the reason for your cortisol levels. Having issues with too much or too little cortisol, the stress hormone, means that YOU are stressing too much or are too anxious. “YOU could control your levels if you would JUST calm down!”
myth-busted
Fact: YOU are NOT the problem! The dysfunction in your body is the problem. It is true that cortisol is your stress hormone or fight or flight hormone. This hormone helps your body compensate for and deal with trauma or stress, both physical and emotional. So, yes, your body does have a reaction to stress.
However, for people with Cushing’s, that hormone goes haywire. Too much cortisol leads to Cushing’s symptoms and having too little cortisol leads to Adrenal Insufficiency. Normally, our bodies’ response to stress is to pump out 10X the amount of your baseline cortisol to cope. If it is not able to do this, it will go into shock and can lead to death unless the emergency protocol is followed with an emergency injection of steroid. No amount of coping skills can “control” one’s physiological response to stress.

Day 1: Cushing’s Awareness Challenge 2017

April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on April 8th, 1869.

30-posts

Thanks to Robin for this wonderful past logo!  I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.

As I see it, there have been some strides the diagnosis or treatment of Cushing’s since last year.  More drug companies are getting involved, more doctors seem to be willing to test, a bit more awareness, maybe.


April Fool's Day

How fitting that this challenge should begin on April Fool’s Day.  So much of Cushing’s  Syndrome/Disease makes us Cushies seem like we’re the April Fool.  Maybe, just maybe, it’s the doctors who are the April Fools…

Doctors tell us Cushing’s is too rare – you couldn’t possibly have it.  April Fools!

All you have to do is exercise and diet.  You’ll feel better.  April Fools!

Those bruises on your legs?  You’re just clumsy. April Fools!

Sorry you’re growing all that hair on your chin.  That happens as you age, you know.  April Fools!

Did you say you sleep all day?  You’re just lazy.  If you exercised more, you’d have more energy. April Fools!

You don’t have stretch marks.  April Fools!

You have stretch marks but they are the wrong [color/length/direction] April Fools!

The hump on the back of your neck is from your poor posture. April Fools!

Your MRI didn’t show a tumor.  You couldn’t have Cushing’s. April Fools!

This is all in your mind.  Take this prescription for antidepressants and go home.  April Fools!

If you have this one surgery, your life will get back to normal within a few months. April Fools!

What?  You had transsphenoidal surgery for Cushing’s?  You wasted your time and money. April Fools!

I am the doctor.  I know everything.  Do not try to find out any information online. You could not have Cushing’s.  It’s too rare…  April FOOL!

All this reminds me of a wonderful video a message board member posted a while ago:

So now – who is the April Fool?  It wasn’t me.  Don’t let it be you, either!

Interview with Mary O’Connor aka MaryO, Cushings-Help.com founder

 

As part of this year’s Cushing’s Awareness Challenge, I’ve decided to share our Interview Series again since there was lots of great info in there.

The series is still going on, so if you’d like to be a part of this, just let me know.  You can fill out this form and check off that you want to do an interview – Add Your Bio

There are currently 89 interviews in our series.  This is the first one:

Interview with Mary O’Connor (MaryO), founder of Cushings-Help.com and 20-year pituitary Cushing’s Survivor. Robin (staticnrg) hosted.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/01/03/mary-oconnor-aka-maryo-cushings-helpcom-founder

Some of the comments:

This is the first podcast I have listened to. How wonderful to hear your voices! Thank you Mary for sharing your story and for Robin for being the perfect host. This is a wonderful way of hearing about many of our journies with this awful disease – just brilliant!

Great topic……more awareness is needed as I’m convinced this is under-diagnoised vs. uncommon!!

The information age and innovative thinking meets new medical needs

Great show. informative and potentially life saving

 

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Time to Sign Up for the Cushing’s Awareness Challenge 2017

I plan to do the Cushing’s Awareness Challenge again. Last year’s info is here: http://cushie-blogger.blogspot.com/2016/03/fifth-annual-cushings-awareness.html

That page is getting very slow loading, so I’ve moved my own posts to this newer blog.

As always, anyone who wants to join me can share their blog URL with me and I’ll add it to the links on the right side, so whenever a new post comes up, it will show up automatically.

If the blogs are on WordPress, I try to reblog them all to get even more exposure on the blog, on Twitter and on Facebook at Cushings Help Organization, Inc

The Cushing’s Awareness Challenge is almost upon us again!
Do you blog? Want to get started?
Since April 8 is Cushing’s Awareness Day, several people got their heads together to create the Sixth Annual Cushing’s Awareness Blogging Challenge.
All you have to do is blog about something Cushing’s related for the 30 days of April.
There will also be a logo for your blog to show you’ve participated.
Please let me know the URL to your blog in the comments area of this post, on the Facebook page, in one of the Facebook Groups, on the message boards or an email  and I will list it on CushieBloggers ( http://cushie-blogger.blogspot.com/)
The more people who participate, the more the word will get out about Cushing’s.
Suggested topics – or add your own!
  • In what ways have Cushing’s made you a better person?
  • What have you learned about the medical community since you have become sick?
  • If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing’s patients?
  • What would you tell the friends and family of another Cushing’s patient in order to garner more emotional support for your friend? challenge with Cushing’s? How have you overcome challenges? Stuff like that.
  • I have Cushing’s Disease….(personal synopsis)
  • How I found out I have Cushing’s
  • What is Cushing’s Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
  • My challenges with Cushing’s
  • Overcoming challenges with Cushing’s (could include any challenges)
  • If I could speak to an endocrinologist organization, I would tell them….
  • What would I tell others trying to be diagnosed?
  • What would I tell families of those who are sick with Cushing’s?
  • Treatments I’ve gone through to try to be cured/treatments I may have to go through to be cured.
  • What will happen if I’m not cured?
  • I write about my health because…
  • 10 Things I Couldn’t Live Without.
  • My Dream Day.
  • What I learned the hard way
  • Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
  • Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
  • 5 Challenges & 5 Small Victories.
  • The First Time I…
  • Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
  • How much money have you spent on Cushing’s, or, How did Cushing’s impact your life financially?
  • Why do you think Cushing’s may not be as rare as doctors believe?
  • What is your theory about what causes Cushing’s?
  • How has Cushing’s altered the trajectory of your life? What would you have done? Who would you have been
  • What three things has Cushing’s stolen from you? What do you miss the most? What can you do in your Cushing’s life to still achieve any of those goals?
  • What new goals did Cushing’s bring to you?
  • How do you cope?
  • What do you do to improve your quality of life as you fight Cushing’s?
  • How Cushing’s affects children and their families
  • Your thoughts…?
maryo colorful zebra

How Cushing’s has broken my body

It isn’t April anymore, but 2014 week’s events have inspired another post by Catherine trying to explain a few specific limitations and misunderstandings:

From http://muskegfarm.blogspot.com/2014/05/how-cushings-has-broken-my-body.html

 

I was planning to take a decent break after the whole “post every day in April for Cushing’s Awareness Month” thing, but I somehow woke up knowing I needed to get this thought (and information) out there…

When my exhaustion comes up or people are around me a while, I continue to be told/asked things like:
“Have you tried walking?”
“If you did a little extra each day, you’d build muscle.”
“Stress hormones are the problem?  Well, stop stressing!”
“I know you’re tired, but if you don’t exercise, you’ll lose muscle and gain weight.”
“Are you counting calories?  Not doing much, no wonder you’re gaining weight.”

I know these questions stem from ignorance about the disease and some people really are wanting to be helpful.  But it really is counter-intuitive, I’m not making that up. And when people feel the need to say these things to me it still hurts my feelings a bit even when I remember that.  It just reminds me that they haven’t learned the basics about my disease, and it still feels as though they are blaming my symptoms on me again…like I’m a fat, lazy, idiot.

Who doesn’t know you exercise to maintain and gain muscle?  That you lose it if you don’t use it?  That eating too much (or incorrectly) causes weight gain?  That in healthy people, expending energy in the form of exercise can actually increase your overall energy in the long-run?

Seriously, my body is broken.  These “normal” systems just don’t work.

Cushing’s causes the demineralization of bones.  Cushies break bones very easily.  Ever heard of someone waking up to a broken ankle with no trauma?  Yep.  Breaking ribs just rolling over in bed?  That too.  Imagine that isn’t an 80 year old, but a 35 or 45 year old.  We develop osteopenia and osteoporosis as part of the disease process, and sometimes that is the first time doctors take notice that something abnormal is going on in our bodies.  I have a friend who is paralyzed because of broken vertebrae thanks to this disease.  It’s horrible.  And it isn’t his fault.

Now, imagine that your body also metabolizes your own muscles.  Really.  No amount of exercise can stop that, only curing the disease can…and then you have the long, daunting task of trying to rebuild amidst pain, exhaustion, and weakness.  I have a supplement that *might* help SLOW it but cannot stop it.  This is why people with my disease tend to have skinny arms and legs.  The first muscles to go (dramatically, anyway) are the quads and biceps.  It becomes difficult/impossible to walk up stairs, to stand unassisted from a squat or to get up from a seated position without using your arms.  And as far as the biceps go, one of the first things people notice is the inability to open lids…that requires your upper arm muscles more than you’d think.  As an example, I can’t open about every 3rd Gatorade lid these days.  It is absurd!  Something so simple, and I can’t do it.  And trust me, I open those bottles multiple times a day, every day, yet I am still losing that ability.  (I NEED the salt to raise my BP due to the lack of another hormone, that’s a diagnosed need and I will die of dehydration without it, so don’t even go there; I’ve already had that lecture from strangers in Wal-Mart or friends at a dinner table in public.)

At the same time, imagine your disease is CAUSING extreme, uncontrollable weight gain.  That’s one of the most obvious symptoms –it’s not the disease, it’s a SYMPTOM!  It doesn’t matter how many calories you cut or how perfect your diet is, the weight just keeps piling on.  At very best you can maintain (not lose), but even that isn’t possible for most.  It centers around your face (moon facies), your neck (sub-clavicular fat pads, buffalo hump, big chin), and your abdomen.  It is both firm on top (almost hard like a pregnancy belly) and soft on the bottom and hanging down (pendulous abdomen).  You CAN eat low-carb, low-starch, low-sugar to try to slow the onset of diabetes and weight gain, but you cannot stop what the chemicals in your body are doing.  Cortisol is directly involved in blood sugar within the body, and it can be catastrophic when either too high or too low.  For example, I eat roughly the same diet.  It isn’t perfect by ANY means, and I have variations, but in a high I gain between .5-2lbs a day and on that same diet in a low, I lose .25-.5 pounds a day.  It isn’t my diet, it is my cortisol levels…and the highs are outstripping the lows.  I’m in a pattern of slow gain, but it is very disheartening to see.

I mean, we need to use reason here.  If you are able to continue to exercise (strenuous is NOT recommended, I was flat-out told not to do that anymore), obviously it is a good idea to maintain as much muscle mass and strength as you can.  That said, I do NOT gain more energy if I use what I have.  Backwards perhaps, but true.  I don’t get rejuvenation from sleep either…often waking up feeling as tired as when I went to bed (Cushing’s messes up your sleep cycles, if you can get sleep).  Obviously it is wise to eat well, but remember most of us are dead broke with all these medical bills (and healthy food DOES cost more) and in my case, I am unable to cook any more.  I used to cook from scratch and eat a very clean diet, now even the energy to put a frozen meal in the oven, then remove it and dish it up later is too much most days.  We know that eating better is good for our bodies.  But, the reality is that being perfect in these things will not stop the disease nor it’s effects on our bodies.  Even if you mean well, please don’t say things that suggest we could stop it if we just tried harder or made a little change ourselves –it is hurtful and even if you don’t mean to, pushes blame onto us.

Now, I really need to explain the “broken” thing.  Our hormone systems (at least in the pituitary) generally work in feedback loops.  Parts in the brain take in information about our body’s condition, external environment, emotions, etc.  It interprets that information and makes judgments about what our body needs more or less of and sends the appropriate signals to other parts of the body (like the pituitary).  The pituitary then sends out stimulating hormones (in the case of Cushing’s, ACTH – Adrenocorticotropic Hormone) that tell other glands to produce their various hormones for use.  Again, in the case of Cushing’s, ACTH stimulates Cortisol specifically.  When there is sufficient cortisol in the body, it “feeds back” to the brain and pituitary that there is sufficient and the production of ACTH stops/drops.

With Cushing’s, that loop is broken.  Really broken.  There is a tumor getting in the way and throwing everything off.  The tumor produces ACTH on it’s own, stimulating cortisol production by the adrenals.  That in turn shuts down the pituitary from producing it, because there is already enough or too much.  It means that our bodies don’t react normally to internal nor external stressors.  We have FAR too much cortisol at night, when it should be almost non-existent in the body to allow for sleep.  We can have low cortisol during the day when we need it to be active.  We can be “revved up” like we’re running a marathon while sitting on a chair, resting.  But it also means that when we are stressed, ill (just a cold, even), in pain, or exerting extra energy, our body does not have the feedback to produce more cortisol to allow us to function appropriately.

This is why even in a high cortisol day, if I overdo it, I can crash so hard I can’t keep my eyes open.  Why I can become so cold that blankets, warm clothes and a wood stove (on an already warm day) cannot warm me up.  Why I can become nauseated (another low symptom) and that can lead to serious danger (Look up adrenal crisis).  You see, if I use up whatever my tumor is producing, generally speaking, my pituitary doesn’t fill in the gap because it is suppressed (asleep).  It doesn’t say “She’s doing too much, let’s produce more hormones so she can get through it.”  I’ve noticed this happen in cortisol highs and lows.  Generally I’m FAR more careful in a low because I already know my body cannot handle much of anything, but there were times when I would push myself in a high to get a job done, and then I would crash and burn.  It was bad news and I didn’t understand how dangerous it was at the time (okay, I still do it sometimes, but I REALLY try not to).  And sadly, unlike the normal progression of tiring while exerting yourself, it generally didn’t come with any warning signs.  I was capable, then I wasn’t.  It was sudden.  I cannot tell when I am coming up on that wall, but once I hit it, it is too late.  I am ill, not just a little tired.  And because sleep only does a little in my Cushing’s situation, I don’t start fresh tomorrow.  Now I’m in the whole…one I might not recover from.  This new level of exhaustion at times has become my new “normal.”  It’s bad news, but it’s my life.  So if I say something as silly as driving in “Nowhere, Alaska” is too stressful, I mean it.  It can make me physically ill, and it doesn’t mean I mentally stress over it..it is my body recognizing the energy drain.  I cannot lose any more of what I currently have…there just isn’t enough left.

I know this sounds so negative and depressing.  It is.  It wasn’t my intent to end that way, but the reality is, this disease hurts us so much already, we don’t need misunderstanding (even misguided desires to help) causing us more.  And seriously, just ask!  We would love nothing more than to educate others about what we’re going through.  We know it is so convoluted and overwhelming and that you can only handle little tidbits at a time, but any understanding is better than none.  It can be so hard for us not to do those things we used to, especially things we consider necessary, simple, or things we love and enjoy, and it helps to have someone understand that and not pressure us into doing more than we should or judging us for not reacting like we used to.  We still want to be friends and would love nothing more than to help you or go do those fun things with you…we just know our limits.  Stick by us and please don’t take it personally.

Day 30, Cushing’s Awareness Challenge 2016

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 will 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…

Time-for-me

Choose wisely…