Friday, July 3, 2015

Cushings Disease Mascot, Obesity Take 3 of Part 2

Long Post. Don't read unless you have Cushings and/or obesity due to prednisone. Just a warning.

( Zebra heli. Cool. Come Save me. Bring Hula the Horse with Cushings, Vet- because he saved her. See previous Posts on Cushings.)
Here we have a helicopter that is wearing the Zebra look which, I recently learned is the Cushing's Disease Mascot. Normally doctors, when they are at the hospitals and hear the distant sound of horses running in the fields and they want to leave and go ride them, they don't expect their horses to actually be Zebras.

(kurt from Piggy & Dirt made this custom star for me to remember this illness. I feel a sense of pride when I pass it because I feel I have been entrusted with a trial.
Which means I can help others. Even if it is just with my words, here, on this blog. I wish I would have had him engrave it with: NOT a HORSE.)
****July 27, 2015- WOW! Readers! This was a post from my archives that I feel impressed to share simply to help bring awareness to Cushing Disease/Syndrome. I read an article by Laura Copeland told to Emily Woodruff who had the article posted on a site called Health & Beauty.

One night, after a tough struggle with the spinal tap I typed Cushings disease and spinal tap together and the article appeared. Random. I read it, contacted Laura on FB to thank her, and have learned that
teaching others about this disease will help a lot of people who may have it.

Even young girls can get this...... parents and guardians can learn a lot and push for testing.
It is the icing on the cake for me, as my Regular readers know.
I have Crohns disease. I have pioneered meds for it and have been on prednisone so long that it has taken a toll on my abilities to do things that were once so easy!
* Written July 24....
Dear Readers,
                          This post was written before my grandmother passed away.  I was in the middle of attempting a 'series' on Cushings Disease to help bring awareness. There was a daily challenge back in April and, as you can see, it is July that I am coming back to posting  this.
I didn't jump in on the challenge but I thought I could help out because this is a disease and syndrome that gets missed so often and it causes a lot of problems if it isn't caught soon enough.
That said, I had to stop and blog about
my grandma
because there were and are feelings that had to be solidified on "paper"  about the event of loved ones passing on.
 *Now I am trying to keep my mind off of  the heartbreak that happens when your loved one leaves. I know she is rejoicing but is aching for my grandpa.
 As he is aching for her.

The last week of her life was filled with deep, long suffering love. And my Grandpa coming to the point where he loved her so much, he could let her go. In fact I think he was begging.
And then she did go- on Father's day.

Wrandi Buxton Hummer's photo.
(We grandkids and great grandkids pooled some money together to give her a gift. She has a flower garden out front that will have a rock next to it that bear her name and a quote my Grandpa said. The coke is to make up for all the colas we kids have come over and helped ourselves to. He looks sharp in those jeans he bought!) 

Love is an interesting thing.
 They stuck together, served each other even when my grandmother was diagnosed with Parkinson's.
 She recognized us up until the last couple days which is highly unusual.
 I hate for the pain it put her in. But that is life.
Gratitude will be the last relationship we have with Adversity.- Neal A. Maxwell.
I guess it is good to try and stay busy to keep your mind off of death and disease but I went to P.T. today and my "chauffer" ( Padre) is now done with his P.T. -so I drove myself. I also ran a couple errands that have left me trying to gather the strength to shower before bed.
Is this a Cushings symptom?
A couple days ago I got a PO Box but I can't find where I put the number.
(*found it as you can see on the right side of my front )
So I have to dig for that and I don't feel so hot.
I have more health news that is the icing on my prednisone cake.

 Cake sounded so good the other day but it has been impossible to eat without paying for it due to the stricture (narrow/almost closed off part of my esophagus). They dilated it and it just isn't getting better.
The Dr. told me I could eat anything I wanted and that hasn't been the case.
Everything burns. Scalds. 
Heart burn is one thing.... this. This must have been incepted in the inner most parts of Mor Dor.
Thank goodness for sucralfate to chalk up the pipes a bit!
For my Readers who are suffering with these illnesses- maybe we can help each other.  I wanna bawl.
So the Zebra is an analogy. We hear hooves beating behind us and think we are somewhere in the vicinity of a  farm. Or at my sister's farm where she does not have zebras.

The Zebra, in its black and white stripes is here to remind us that there is a disease that makes too much cortisol,  you gain weight.
No matter how much you eat. Or do not eat.

This could really mess with someone struggling with anorexia, bulimia, exercise-imia ,
You'd literally have to stop drinking water to NOT put on weight it is looking like from the National Geographic video they have on this illness.


 I am retrying Strength Tape coupled with Benadryl lotion on the skin first to help some muscle aches. And oral Benadryl if I feel itchy. So far, so good. The Rock tape was waaaay too strong for my sensitive skin. I sure want to use it on my lower back, neck, and quad. Oh, and around my trunk for supporting the back injury from the car accident in Feb.
(The tape tore my prednisone skin. Buy the Strength Tape. It works best.)

Either way, I hope that what they found to help Hula pa looza
 (soluble epoxide hydrolases (sEH) inhibitor)
can help people.
I am referring to the horse that was mentioned in the post before my grandma passed away.


The end of the article reads this:

"Bora Inceoglu, Ph.D., a collaborator of Guedes and Hammock, is working to move the compounds to the clinic for human diabetic and other neuropathic pain. “It is often hard to extrapolate from treatment of rodent models of pain to man,” said Inceoglu This mare was suffering from a real disease. Not only is it gratifying to save the life of Hulahalla, but she and other horses provide strong evidence that our success with treating neuropathic pain in rodents can be extrapolated to man.”
 Veterinarians at UC Davis treated her with the standard of care for several days, but her condition deteriorated and she refused to stand. Guedes made an emergency call to Hammock, after obtaining compassionate permission to use the soluble epoxide hydrolases (sEH) inhibitor they had developed — the only option left, aside from euthanasia, to relieve the extreme pain and suffering.
Within three hours after clinicians administered the drug to Hulahalla, she was able to stand. Her pain level and blood

Unless ISIS takes over and they don't feed us.

 or the dogs, that had to suffer from this relentless disease. -Which also has some irony in it if you look hard enough.

The only reason that I am referring to animals than humans so much is because, like I said there isn't a lot of research on the net that has to deal with humans with Cushings.

At all.

And like the book Life of Pi he uses animals and that was a way better read had Richard not been a lion.

See? Thanks for bringing the Real to Scary.

When I type in some question on Google I see a picture of Trixy Woo the Poodle and her ailments, distress, and that is just the owner. How much is it costing these owners anyway? That's another post.

So I am here to change that amount of information in the net about humans with Cushings.  Sorta.
April 8th was Cushing Awareness Day

and they gave the challenge to everyone with it and had blogs, to blog every day about it.

Blogging every day is a tough order if I'm told to need to but to tell a writer to write right this instance.....

The very blog you are reading goes back to April and is stale anyway.... I am adding to it right now and it's almost June.

What I have been able to see from reading about human beings' experience with this illness however, is that there are a lot of similarities to the animals and they [the humans]  have struggled for


(I can't recall= google Marty from Madagascar pictures)

with people not believing them when they said their symptoms were more than just binging at DQ.

Some patients even are rail thin and doctors will say: "You couldn't possibly have developed Cushings- you are too skinny. They have trunkal obesity."
I don't know about you but during a time when people are in pretty good shape

(Personally, I would much rather have the Gerstner Utility Trunk)

The Gerstner Utility Chest

 " You don't have striae so I don't think that is it."
 (it is pronounced like eye with an s in front)
"But, Dr.,  overnight I went from an athlete running, swimming, and biking three times a day to weighing as much as my bike- and running partner in three days... and I have 82 Zebra like strips on my body in weird places and have to now want to wear a burka to hide them.."
"Nahhhh..... Cushings is rare- you don't have it. But here, I will give you a jug and you give samples to it whenever you have to use the restroom for the next 24 hours and take it to a lab."
Patient (me): "Does a funnel come with this? Cause I don't know if I can aim very well under my conditions."
Dr. : "Try Jiffy Lube"

That one test doesn't tell the whole story and you actually could have a tumor and be cyclical in your readings for this disease. If you have the syndrome it is most likely due to our favorite drug:
I never knew I would love and hate one so much..... moment of silence.
Okay, so having been in support groups for one illness- I thought it would be best to get on board with the new group and hope I "fit" in. Pun there.

We all shared the initial joy in finding out we weren't' crazy' and actually had a real disease that made us a bit wacked. Or possibly we were crazy due to the long journey of trying to find out if we were crazy and sick because of it and if we just tried thinking positively or tried slippery pine tree herb; we'd be healed, either way, I found friends.


When you get that "answer" you feel a bit of relief.
The diagnoses answer.

" Yay."
 you say. Or would if you maybe could have surgery to remove fat pads and buffalo humps.

"Now we, well actually the Dr,  can get to the 'bottom' of this new thing so I can start feeling better!

Amongst the illness mascots I found it was not going to be that easy.

Apparently, there are more conditions, than things like Crohns or Cancer, that actually aren't that easy to swipe away so you can get on to bigger and better ailments.

* how I felt- tryin to escape the inevitable of prednisone side effects. It was useless. It caught up to me.

 So while juggling Crohns - which overlaps in symptoms with Cushings- which can overlap with someone who just likes to eat chocolate while on prednisone, it's hard to separate what can be done and what can't be done.

You can have your hair done and maybe buy some new nail polish in an "up to date color"
 so you can paint your toe nails. What ya can't do is just walk into the Dr.'s office and tell him your done being sick and you are quitting your job at Crohns, Cushing, and Come What May Co.

When I encounter something I don't know about, I like to do some investigation.
After a little bit of denial.
( or Pi or Piscine. You can decide with the book: life of Pi!)
For instance in my social life, or when I had more of one, I liked to ask questions and get to know someone. It's interesting to learn people's stories, about different places in the world, and how things work.

Like many of you, I have my
 "go to"
 set of friends
and it is sometimes hard to go to another canoe and paddle with them awhile because you are used to how your friends row.

So I waded into the Cushings forums and help groups and found that they are just like me; human. And there are a lot of similar symptoms with each disease that made it easy to identify with them;
which is such a relief when you happen to get secondary syndromes that are 1 in 200k or some large and rare coincidence of an unfortunate chance.
And probably why my doctors didn't think I had it. I forgive you, doctors. Well, some of you.

One girl has a blog strictly about fighting Cushing with "moxie" and that is where I first saw the bold black and white stripes and figured it was like my sunflowers and bed up above; decoration for her blog.

However, I waded further and kept seeing the zebra pattern or a zebra on other sites and figured it was the "mascot." Or the one girl was the Cushing Advocate originator.

*And how do they choose the mascot or color anyway?

Is it like what they do when hurricanes come in; just whatever name is next. Or whatever color hasn't been used and they make a bracelet? (I think Crohns is purple. Or is it yellow?)

Then on a FB page I  learned that there is a saying that goes something like...... 'when you hear horse hoofs.... you expect horses.

And so we respond to Cushings with the idea of hearing beating hooves and upon turning around and not seeing horses like we had thought but a Zebra.

 Apparently, in the medical profession, a Dr. doesn't even have to turn around and see a Zebra; or unexpected illness because it is so rare and, therefore, will say you have horses following you and that is why you are suffering.

All I know is that I feel really badly that I had no idea that some people suffer with things that literally are out of their control. Like.... here we go- I'm going to say it: Obesity.

I thought that weight could be controlled.

Yup. The time I was flabbergasted that a man could have such courage to go to a public swimming pool, donning all the signs of Cushings, fled back to me.  His kids didn't blink an eye at the looks that quickly darted his way and then looked away. Despite his severe obesity, these kids were more grown up than most.

I asked myself a dumb question like:

 "Why have his doctors not done a surgery on him? He could die from being so over weight!"


They can't. It would come back. Unless they remove his tumor, then the cortisol will continue to produce too much. The weight is the symptom of the Disease.

As far as mascots go, I guess I am okay with the Zebra. Black and White. It should get attention. Always in fashion.

( I know now that the Cushings Mascot is Marty, Readers; he stays positive and happy in desperate times!!!!!!!)

Oh, and I learned that my bday is National Rare Illness Awareness Day Is that a coincidence, or what?
 Or is it just Rare? Maybe medium rare?

I debated writing about a new illness on here for fear of getting away from what I like to do and that is write about the happy. Give you, Reader, my best Norman Rockwell attempt of good reads like he did with his art- he painted things how he thought they ought to look. Which he actually painted them how our brain recalls the good 'ol days; when we forget how hard something was and just recall the good feeling we had once it was over. Like child birth. So really, maybe my blogging is

All REAL, dawg.
My jokes, pictures, metaphors- they are words painted brains' canvas in charcoal, pencil, water colors, or photocopied. My words are etched truly etched in your hearts. No pretenses.
No, I am not the Jane Austen of today nor will Padre's house, his shower, my chair named Buck, be a museum one day......
Maybe, Norman and I actually do have something in common.
(;  Norman's painting: Self Portrait)

So now that I have greater wisdom and empathy due to two equally fun illnesses, and have learned I get my very own mascot, it is going to be tough to not talk about them at some time or another on here.
 Oh, okay. I will always talk or refer them even if one is talking about the really tough topic. The topic of all forbidden topics. A topic that will keep you from the tropics.
 the one word that comes after 3X.
A word that is like finger nails down the chalkboard of your wash board abs.
**Right now I am going to mentally skip as I write that I feel really uncomfortable with a tube down my sore esophagus.
*We now know I had stricture in the middle of my chest which caused me to feel like I was having a heart attack but the doctors said it was:
"Just my Crohns"
so like my Great Grandfather, I sat in recliner and felt like I was suffocating.
( I got my 1k recliner for 350 from Preston, Idaho because it was was defective! I figured I would slowly toughly stick it out until I chickened out when I aspirated some food into my lungs and decided to go to the ER.
After 5- DANG.
He  (Great Grandpa died due to emyhsemia. He'd been a smoker but I felt that maybe we felt the same strangling, suffocating grip in our air ways or our necks hurt. Either way we And couldn't chance my chin lowering and me drowning on my own spit.
So I sat  up in my chair, with my rolled up beach towel and waited until I was gagging and coughing
and finally went to the ER.
Where a smart PA finally took a pic of my wind pipe instead of sending me home because they hate to work on patients after 5. Unless it is a Bear attack and the heli brought them instead of whiplash outside of their doors when I came to just do some lab work. (not the dog but the blood draw where the phlebotomists are open 24-7
Eastern Idaho Regional Medical Center!
That is Service, Reader!
 And I am uncomfy talking about weight gain. And saying or typing
Readers,  I loved to work hard. Mow Padre's lawn or scrape paint off the house for free as a kid.
I trimmed around the lawn with hand held trimmers..... until I had callouses. I was proud of them.
I felt I was tougher than most because I was such a hard worker.
Being athletic was just a side effect of what I did to inflict pain. Instead of getting in trouble I did  sports and I punished my body.
I was an athlete. And coaches love this kind of robot athlete. Why? Because we will do anything
to  break ourselves in order to pick up the emotional pie p
becoming the Campbell soup girl. About having a disease with a knick name:
The Ugly Disease

You know when women get pregnant and lose their lap? And they may have a toddler that tries to sit on that lap at church and the kid has to defy gravity and try to blanket sit on his mom and just slides off and under the pew in front of it?


That is when I wish I was pregnant instead of wishing I was because I look preggers with triplets..
but I am not. I have trunkal obesity. Yes. That word used to be like a swear word that made you cringe when you heard it and it helped you run harder. Or hit the stairstepper that much harder.

That is what it is like trying to type on a laptop with Cushings; I have no lap. This has made me more frustrated than trying to get ahold of a Dr. over a holiday weekend. Thank goodness that has not happened today.

Well, I need a break from trying to keep my computer on my lap. I mean J.'s. Mine has died. Again.

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