Amy's Journey with...

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I ~ Migraines ~ Obsessive Compulsive Disorder ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis (Autoimmune Hypothyroidism) ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Monday, April 30, 2012

Health Activist Writer’s Month Challenge Day #30

Word Cloud. 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 the branches of your “tree” extend further. http:/
/www.wordle.net/


Sunday, April 29, 2012

Health Activist Writer’s Month Challenge Day #29

Six Sentence Story. In this day of micro-blogging – brevity is a skill worth honing. Can you tell a
story and make it short and sweet? What can you say in six sentences. Check out some here: http://
sixsentences.blogspot.com/

I woke up one day with my joints out of place.  I put them in, before I stood up slowly so I wouldn't fall or faint.  I took a shower, using up two of my six spoons for the day.  I spent most of the day in bed, reading, in too much pain to sleep, until friends came over in the evening.  I got so mad, though, when someone said I sure didn't look sick, and I wondered if they thought I was lazy.  I'd look like a zombie if I looked how I felt.



Saturday, April 28, 2012

Health Activist Writer’s Month Challenge Day #28

The First Time I… Write a post about the first time you did something. What is it? What was it like? What
did you learn from it?

The first time I used Icy Hot I thought I'd die.  Because my nerve endings are already so overstimulated with fibromyalgia, the ingredients in Icy Hot caused incredible pain.  Not only did it create pain, but it made the pain I already had there, much, much, worse.  I did it in the middle of the night, while DH was sleeping.  It was so hard not to scream.  I tried wiping it off but that made it hurt even more.  It also gave me the worst chills.  I was so hot, sweating bucket loads, when I'd get so cold my teeth would chatter.  Needless to say, I learned to never use Icy Hot again.

Friday, April 27, 2012

Health Activist Writer’s Month Challenge Day #27

5 Challenges. 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make
another top 5 list for the little, good things (small victories) that keep you going.

Most difficult parts of having EDS:
1.  Being stuck home all the time.
2.  People making stupid comments like "I wish I could stay at home all day!"  Do you wish you were disabled, too?
3.  The uncertainty of when a joint will do something nasty.
4.  The incredible, unrelenting pain.
5.  The bone-weary fatigue.



Good things that keep me going:
1.  I've never had a cavity.
2.  My cats. Enough said.
3.  I have a shiny red walker that just screams "cool!"
4.  I'm learning to do more crafts and doing more of what I already know.
5.  My pink teddy bear, Eliza, that DH got me for our first Valentine's Day together.

Eliza, my teddy bear from DH

Thursday, April 26, 2012

Health Activist Writer’s Month Challenge Day #26

Health tagline. Give yourself, your blog, your condition, or some aspect of your health a tagline. Make
sure it’s catchy!


Ehlers-Danlos Syndrome - With us, your joints are going places.

Wednesday, April 25, 2012

Health Activist Writer’s Month Challenge Day #25

Third person post. Write about a memory you have but describe it using the third person. Use as many
sensory images (sights, sounds, textures, etc) as you can. Don’t use “I” or “me” unless you include
dialogue.

This is about the time I saw the geneticist, hours away, who confirmed that I have Ehlers-Danlos Syndrome.  This picks up after I step off the elevator at the hospital to see her.

Her heart was pumping and her legs were shaking, way more than usual.  She slowly walked, trying not to lean on her walker, down the long hallways at the hospital.  She was so scared that this doctor would also be an ass, but she needed to know if she officially had Ehlers-Danlos Syndrome or Hypermobility Syndrome.  Though they may actually be the same thing, insurance companies are going to treat EDS as a more severe illness, or so she thought as she sat in the waiting room.  She looked around at the waiting room, most of it decorated for children, and a cold fear gripped her stomach that she may pass down EDS to her child, if she had it.  Finally, a woman appeared.  "Amy?" she called.  Her heart lurched, and her stomach felt like it flipped over, as she gathered her records, smoothed her hair, and headed inside the genetic counselor's office.

The Beighton Scale

Tuesday, April 24, 2012

Health Activist Writer’s Month Challenge Day #24

Health Mascot. 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!

Elastigirl from The Incredibles



Monday, April 23, 2012

Sunday, April 22, 2012

Health Activist Writer’s Month Challenge Day #22

The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short
memo reminder. Where would you post it?

This is what I made.  It's kinda goofy, but here it is.  :-)



Saturday, April 21, 2012

Health Activist Writer’s Month Challenge Day #21

Health Madlib Poem. Go to: http://languageisavirus.com/cgi-bin/madlibs.pl and fill in the parts of speech
and the site will generate a poem for you. Feel free to post the Madlib or edit it to make it better.

Okay...here goes, but warning...this makes no sense!!



"All in Pink"

All in pink went my dog fainting
on a hairy doll of small
into the shiny Africa .

sleepy quiet doctor's office ed sneezy and ing
the stiff gold before.

huge be they than wrinkly snowman
the icky stretchy gold
the stretchy stiff gold .

sleepy stretchy stilettos at a achy sword
the dizzy beard before.

mascara at joints went my dog fainting
fainting the tent down
into the shiny Africa .

sleepy quiet doctor's office ed sneezy and ing
the crazy sky before.

bendy be they than orange stretchy laptop
the quiet achy gold
the fast sneezy n gold .

sleepy fast bed at a small kitten
the dehydrated shirt before.

eyes at zebra went my dog fainting
fainting the tail down
into the shiny Africa .

sleepy quiet doctor's office ed sneezy and ing
the dehydrated socks before.

creaky be they than loud couch
the silver smooth gold
the shiny gray gold .

sleepy shiny sweatpants at the pink tail
the gray lisence before.

All in pink went my dog fainting
on a hairy doll of small
into the shiny Africa .

sleepy quiet doctor's office ed sneezy and ing
my bug dislocate eyes before.

- Amy & e.e. cummings


Friday, April 20, 2012

Health Activist Writer’s Month Challenge Day #20



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 ;)

Pop-tarts Discovered as a Cure for EDS***

This week a major study came out, citing Cherry Pop-tarts as the cure for Ehlers-Danlos Syndrome hypermobility type.  They've discovered that Smores Pop-tarts cures Classical EDS, and Blueberry Pop-tarts cure Vascular EDS.  The researchers who released this study have cured 200 people of various types of EDS. The researchers are still working on what flavors cure the other types of EDS, but they expect to find out soon.  This has been called a "miracle cure," and researchers think they may be able to cure Marfans, next.  They suspect the cure for it may involve Fruit Rollups.

***Disclaimer: This is a joke!

Thursday, April 19, 2012

Health Activist Writer’s Month Challenge Day #19

5 Dinner Guests. Who are 5 people you’d love to have dinner with (living or deceased) and why?

Kay Redfield Jamison
Kay Redfield Jamison, author of An Unquiet Mind
1. Hillary Clinton - because she is my hero.  She is a brave, no-nonsense, woman who cares deeply about women and our rights.

2. Stephen Colbert - because he is one of the funniest people alive.  As funny as he is on TV, he'd be great dinner company.

3. JFK - because he was one of our greatest Presidents.  I'd also like to meet his wife.

4. Robert Kennedy - because he held so much potential and could have been a great President.  When I watched the movie on Robert Kennedy I cried and cried.

5. Kay Redfield Jamison - because she is a wonderful psychologist, author, and woman with bipolar disorder, who also does great things in research and awareness.  She is author of An Unquiet Mind and Touched with Fire: Manic-Depressive Illness and the Artistic Temperament, among other books.

Wednesday, April 18, 2012

Health Activist Writer’s Month Challenge Day #18

Open a Book. Choose a book and open it to a random page and point to a phrase. Use that phrase to get
you writing today. Free write for 15-20 without stopping.

"I understand no one is above the rules..." ~ from Rolling Stone magazine

This makes me think of going to a doctor appointment.  If you ask for a doctor to treat you, to run tests, to basically do anything except say "there's nothing I can do," then they act like you are trying to put yourself above the rules.  I have a very poor opinion of doctors, as most doctors will not research anything for their patient, and if they do it's only to read one or two pages, at the maximum.  Doctors tend to pass you off on other doctors, and those doctors pass you off on other doctors, until you find yourself stuck in an endless circle of doctors, but not getting any help.  Most doctors, when it comes to a rare disease, could actually learn from WebMD, which is written for patients.  That is sad!  Of the doctor's I've had, and being an EDSer, I've had a lot, I can count on one hand the doctors that gave a crap about me.



Tuesday, April 17, 2012

Health Activist Writer’s Month Challenge Day #17

Learned the Hard Way. What’s a lesson you learned the hard way? Write about it for 15 minutes today.

Woman on recumbent bike, a great exercise for EDSers
I learned the hard way that you should never stop exercising, even when it hurts.  I was warned of this by another EDSer, Sam, but I didn't listen, I guess.  The amount of time it takes your body to decondition is a lot faster than the amount of time it takes to get it back where it was.  It is also a lot harder, because when your body deconditions, your leg pain, fibromyalgia pain, and POTS all get worse.  When the muscles in your legs are strong, those feelings are supposed to go away.  That is my goal--to get to the point where standing up isn't a big deal, my fibro pain is less, and my leg pain is less.  Your legs hold up your whole body weight, so it is the worst place to be deconditioned, in my opinion.  Also, when you are deconditioned your fatigue is greatly increased.  I know that I really need to do something now, before it gets worse.

I hope someone can learn from my mistake and not end up like me. 

Monday, April 16, 2012

Health Activist Writer’s Month Challenge Day #16

Pinboard. Create a pinterest board for your health focus. Pin 3 things. What did you pin? Share the
images in a post and explain why you chose them.

This is from my spoonie board.









Source: cafepress.com via Amy on Pinterest






Source: cafepress.com via Amy on Pinterest

Sunday, April 15, 2012

POTS: Together We Stand Riding The Waves of Dysautonomia

***This book review is cross-posted at Survivor and The Lovely Bookworm.




POTS: Together We Stand Riding The Waves of Dysautonomia
by Jodi Epstein Rhum with Svetlana Blitshteyn, MD

ISBN-10: 9781466371507
Paperback
506 pages

© 2011

Health, Fitness & Dieting > Disorders & Diseases > Physical Impairments

CreateSpace



POTS: Together We Stand Riding The Waves of Dysautonomia by Jodi Epstein Rhum and Svetlana Blitshteyn, MD

I  bought this book because I have POTS, or Postural Orthostatic Tachycardia Syndrome, and wanted to learn more about this type of Dysautonomia.  I did learn a lot, but I didn't learn nearly as much as I expected to.  While the book offered a great deal of information, it could have been one third of the size and still got all the same information across.  Most of the facts or physician's opinions are restated over and over again, making what already may be a hard book for some sick people to read, even harder.  The book is heavy, which may make a difference to some readers, as some of us can't lift a book this heavy to read, especially not on bad days.  I suggest pilling pillows next to your head to rest the book on.

The best tip I learned from this book is to take cool showers and then at the end of the shower to spray my legs with cold water to decrease the size of my blood vessels.  This really works well, and I haven't passed out in the shower since doing this.  

Much of this book applies to parents of children with POTS, which only helps a small subset of POTS sufferers.  It gives quite a few home workouts to do, but I am unable to do them because of the extent of all of my disabilities.  The ending is written by physicians, but much of what they say repeats what has been said in other parts of the book.  Also, there are recipes, but the recipes either require expensive ingredients or lots of preparation a person with POTS may be unable to do.  One of the things that bothered me the worst is the many, many spelling and typing errors.  I understand the book is self-published, but couldn't someone have edited it?

I am giving the book three stars instead of two because it does give a lot of good information, it's just that that information is repeated many times and for the most part found online just as easily.

Jodi Epstein Rhum has a B.S. in Education from the University of Illinois. She is a former middle school teacher who has devoted her life to POTS awareness. She has a mild case of POTS, and has three children with POTS, one of those has Ehlers-Danlos Syndrome, as well. She is a mother, teacher, and a patient.

Dr. Svetlana Blitshteyn is a board-certified neurologist who specializes in POTS and other autonomic disorders in Williamsville, New York. Her neurology residency was done at May Clinic, and she currently serves as Clinical Assistant Professor at Buffalo School of Medicine and Biomedical Sciences. She serves as the medical advisor for Dysautonomia Information Network. She was also featured in the documentary "Changes:Living with Postural Orthostatic Tachycardia Syndrome," and has published in many scientific journals on the topic of POTS, headache, and other neurologic disorders.


Jodi Epstein Rhum author of POTS: Together We Stand Riding The Waves of Dysautonomia



Svetlana Blitshteyn, MD author of  POTS: Together We Stand Riding The Waves of Dysautonomia   

Health Activist Writer’s Month Challenge Day #15

Writing with Style. What’s your writing style? Do words just flow from your mind to your fingertips? Do
you like handwriting first? Do you plan your posts? Title first or last? Where do you write best?

My writing style for the Health Activist Writer’s Month Challenge is bit different than my usual writing style.  For these entries I write many of them ahead of time and schedule them to come out, so that they can be published even on days I'm too sick to get out of bed.

For my normal blog entries, I write either on the couch or in bed.  I sometimes write the title first, but usually write it last.  I plan my posts out in my head before I write them, but I write as thoughts come to me.

Then I edit, edit, edit.  I don't do much editing for my Health Activist Writer’s Month Challenge posts.

Saturday, April 14, 2012

Health Activist Writer’s Month Challenge Day #14

My Dream Day. Describe your ideal day. How would you spend your time? Who would you spend it
with? Have you had this day? If not – how could you make it happen?

My ideal day would be spent hiking in the woods in the Ozarks with my hubby.  I miss the woods so very much, and as an Ozarkian girl my soul truly comes alive when I am in the woods.  I can't describe it, really.  I love to feel leaves crunching under my shoes in the winter and the thick green moss under my bare feet in the summer.  The trees give off a feeling of deep, inner peace, and you can sense the knowledge and wisdom they hold.  I haven't traveled the world but I don't have to, to know that the Ozark Mountains are the most beautiful place on earth.

So, though I no longer live in the Ozarks, my perfect day is hiking there, without severe pain, and without disabling fatigue.

My Grandpa's in the Ozarks

Friday, April 13, 2012

Health Activist Writer’s Month Challenge Day #13

10 Things I Couldn’t Live Without. Write a list of the 10 things you need (or love) most.

1. pillows, lots and lots of pillows
2. toothbrush, toothpaste, and dental floss
3. Powerade Zero
4. my vitamins (fish oil, multi-vitamin, magnesium, Vitamin C, Vitamin D, Calcium, Vitamins B Complex)
5. my medications
6. Pepsi Max (Diet Pepsi with extra caffeine!)
7. my computer
8. my camera
9. my bed (even if it is lumpy and has a hollow in the middle)
10. books

I love pillows

Thursday, April 12, 2012

Health Activist Writer’s Month Challenge Day #12

Stream of Consciousness Day. Start with the sentence "   EDS   " just write, don’t stop, don’t edit. Post!

EDS is a big part of my life.  EDS is also the reason I met my best friend online.  EDS community on facebook is very strong, though I have found an EDS community on Twitter, too.  The Twitter one isn't as large or cohesive as the facebook EDS community.  The Facebook community has many, many groups you can find by searching EDS or Ehlers-Danlos Syndrome on the Facebook search bar.

Wednesday, April 11, 2012

Health Activist Writer’s Month Challenge Day #11

Theme song. Imagine your health focus or blog is getting its own theme song. What would the lyrics be?
What type of music would it be played to?

She's stretchy
She's elastic
She dislocates
She faints
She's an Ehlers-Danlos girl!
A zebra,
a zebra,
She's an Ehlers-Danlos girl!
She's a blogger
She's an activist
She's video maker

She's an Ehlers-Danlos girl!
A zebra,
a zebra,
She's an Ehlers-Danlos girl!

The type of music the song is sung to would be I guess muzak, isn't that what every theme song is sung to?

Tuesday, April 10, 2012

Health Activist Writer’s Month Challenge Day #10

Dear 16-year-old-me. Write a letter to yourself at age 16. What would you tell yourself? What would you
make your younger self aware of?

Dear 16-year-old Amy,

You are more awesome than you think.  You are not crazy, what you are going through is called POTS, or Postural Orthostatic Tachycardia Syndrome.  It is caused by something else, called Ehlers-Danlos Syndrome.  EDS is going to impact your life more, and more, as you get older.  It is very important for you to be gentle to your body, but still exercise.  Thirty seems a long way off, but at age thirty you will be on a walker.  I want you to work as hard as you can at keeping strong, so that you can put the walker off by another ten years (at least).

No matter what the doctors say, there is something wrong with you, and it isn't in your head.  Please remember that.  You will run into a lot of same symptoms as you get older, most of them are from EDS or POTS.  You were recently diagnosed with fibromyalgia.  Your fibro also stems from your EDS.  You will have a lot to learn, but the sooner you get your diagnosis the sooner you can begin treatment.

Take care Amy, I love you.

Amy

Monday, April 9, 2012

Health Activist Writer’s Month Challenge Day #9

Keep calm and carry on. Write (and create) your own Keep Calm and Carry On poster. Can you make it
about your condition? Then go to (http://www.keepcalm-o-matic.co.uk/) and actually make an image to
post to your blog.


Sunday, April 8, 2012

Health Activist Writer’s Month Challenge Day #8

Best conversation I had this week. Try writing script-style (or with dialogue) today to recap an awesome
conversation you had this week.

It went something like this...

Best Friend: vI walked all the way up the stairs and got the mail.  (After having MAJOR back surgery and temporarily losing the ability to walk.)

Me: OMG Yay! You go, girl!  Congratulations!


I was so proud (and am still) of my best friend when I heard the news.  I knew she'd get better, but she's doing so even quicker than I thought she could.  She is working so hard in physical therapy.  She is such a strong woman, and doesn't even realize how strong.

So, let's give a big cheer for my best friend..."Y..A...Y...!!!"

Saturday, April 7, 2012

Health Activist Writer’s Month Challenge Day #7

Health Activist Choice! Write about what you want today.

I've heard it over and over, "If you can't get your doctor to listen to you, get another doctor."  I hear it mostly from people who live in cities.  My state is a rural state and the closest specialists (except my neurologist) are over an hour away.  If I still lived in the tiny town I grew up in, I'd have to travel over 3 hours to see a specialist.

We've had to cancel our appointments with specialists because we can't afford or one of us is too sick to travel there.  So what do you do when you can't find a new doctor?

Friday, April 6, 2012

Health Activist Writer’s Month Challenge Day #6

Health haiku. Write a haiku about your health focus. 5 syllables/7 syllables/5 syllables. Write as many as
you like.

Ehlers-Danlos teaches
Makes me a stronger person
Gives me empathy

Thursday, April 5, 2012

Health Activist Writer’s Month Challenge Day #5

Ekphrasis Post. Go to flickr.com/explore and write a post inspired by the image. Can you link it to your
health focus? Don’t forget to post the image!



This picture reminds me of the loneliness so many of us with EDS feel, especially those of us who are not believed or who are housebound.  I am housebound and sometimes I feel very lonely.  Without DH, the kitties, my best friend Nessa, my pen pals, and the internet I'd lose my mind.  When you feel really lonely it makes you depressed, and the woman in the picture looks depressed and lonely to me.

She seems to be holding a mask, which reminds me of what so many of us EDSers,  and spoonies in general, feel.  We have to put on a happy mask even when we are in extreme pain, because if we acted like we are in the pain we're in no one would want to be around us.  That's another thing I love about EDSers.  We can talk about pain and EDS with each other without judgement, or at least that is supposed to be the way it is.

This picture looks very sad to me.  It reminds me of fear, loneliness, depression, and wearing a mask.

Wednesday, April 4, 2012

Health Activist Writer’s Month Challenge Day #4

I write about my health because… Reflect on why you write about your health for 15-20 minutes without
stopping.

I write about my health because of a few reasons.  First of all, it helps me keep a record of how I've been doing.  Secondly, it is great therapy for me to write.  Thirdly I want to communicate with my fellow EDSers and tell them they are not alone.  Finally, I want to help educate EDSers so that they can get a basic idea of what EDS and a starting place for EDS research.

I've had quite a few emails from EDSers who have found my blog and are eager to meet other EDSers.  Right now I'm still in the process of making more informational page on my blog for people who suffer from Ehlers-Danlos Syndrome and related illnesses.  I hope to eventually have my blog as both an information source and a personal blog.

Tuesday, April 3, 2012

Health Activist Writer’s Month Challenge Day #3

Superpower Day. If you had a superpower – what would it be? How would you use it?

I would use my super power to go back in time.  I would go to me three years ago and warn myself to not let my body become so weak.  I would tell myself to keep walking every single day and not give up, no matter how much pain I'm in.

Monday, April 2, 2012

Health Activist Writer’s Month Challenge Day #2

Quotation Inspiration. Find a quote that inspires you (either positively or negatively) and free write
about it for 15 minutes.

"Never go to a doctor whose office plants have died." —Erma Bombeck

This quote made me laugh when I ran across it, especially since I've encountered the doctors with the dead plants and with aquariums with dead fish.  It doesn't bode well when you see these things in the waiting room, or even worse, his office.  I'm not sure I've ever been inside a doctor's actual office (maybe once when I was little?) but I'd definitely be concerned if I found the dead fish in there.

The doctor with an aquarium with dead fish and that was so dirty you could only see through it in spots, was a quackiest in a group of quack doctors.  He was my sister's doctor, and he took her off all of her medication, only to put her on over 30 fish oil pills a day.  I'm not sure that he didn't fake his medical degree.  I've wondered that about a lot of doctors, but I think he's the worst I've ever seen.

So, my advice is, if you see dead fish floating in a very dirty aquarium in the doctor's waiting room...RUN!

Sunday, April 1, 2012

Health Activist Writer’s Month Challenge Day #1

Health Time Capsule.  Pretend you’re making a time capsule of you & your health focus that won’t be
opened until 2112. What’s in it? What would people think of it when they found it?  I would put wrist braces, EDNF pamphlets, Aspercreme, Oval-8's, bendy toys, a Barbie with her joints "dislocated" and in braces, a bottle of tylenol with the word "worthless" written across it, a model of a Medieval torture device with a note that says "EDS feels like this," and Dr. Brad Tinkle's books Issues and Management of Joint Hypermobility and Joint Hypermobility Handbook- A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome.


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