Posts tagged: POTS

Dr.E.R. Staff

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Dear E.R. Staff Square

Dear E.R. staff,

Thank you!

Thank you for responding quickly to our presence in the E.R.

Thank you for taking the time to listen to the list of concerns and reasons we were there for.

Thank you for showing concern when my daughter came in with an elevated heart rate but allowing me to explain the suspected cause and not jumping to conclusions.

Thank you for knowing what POTS and Dysautonomia means from the intake personnel to the doctors on staff.

Thank you for having a working knowledge of EDS, Reynaud’s, Chiari, CCI, Mast Cell and the huge list of other comorbids we discussed.

Thank you for conducting a thorough exam and not jumping to conclusions or disregarding our concerns without taking the time to discuss the reasons.

Thank you for taking our sloppy medical binder and reviewing it completely then sharing it with your supervisor and reviewing it again when we were still stumped.

Thank you for spending repeated time on the phone trying to get information from our regular neurologist’s hospital even though she was on vacation.

Thank you for stopping me while I was outside my daughter’s room to discuss further medical concerns and not alarm or upset her.


Thank you for being as thorough as possible based on the information and symptoms my daughter presented with.

Thank you for listening as we discussed my daughter’s inability to receive IV Benadryl and offering an alternative.

Thank you for listening when we mentioned that she needed the IV site and IV warmed and on an extremely low delivery rate to prevent other complications.

Thank you for returning in an timely manner (after a reasonable amount of observation and testing) to let us know that you were sorry but you could not do anything more to help my daughter in the E.R.

Thank you for being willing to discuss concerns we had with leaving and not having a doctor or neuro on call.  (All of ours were on vacation).

Thank you for discussing our follow-up options, possible causes with patience as we tried to cover all our bases before leaving.

Simply said:  THANK YOU for providing quality care, a clean facility and a caring, amazing staff.  We entered your facility with justified concerns that had previously been ignored at another E.R. and we were treated with the utmost care and respect despite the unusual way my daughter’s issues present and the challenges she offers to even the most basic care.  Thank you for taking all of it into consideration and please continue to deliver such high quality care and service.


A Concerned Mom

Note:  Because I have something positive say about this hospital I want to be sure they receive the credit they deserve.  I want to name them.  St.  John’s Emergency Room in Springfield.  I realize everyone’s experience may be different but overall our treatment at St. John’s has always been excellent both in the ER and at specialty appointments.  The doctor’s work well together, communicate and respond to one another within a timely manner.

To read the recent BAD experience we had at another ER read the “Dear E.R. Doc” letter I wrote here.

Dear ER Staff...Thank You

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Sharing Sunday Link Up #25

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Sharing Sunday Link Up #25

Happy Sunday and welcome to Sharing Sunday Link Up #25!

I am happy to announce The Zippy Zebra was able to collect $5.39 in this month’s Change for EDS campaign and will be sending the check out this week!!!  How is your Change for EDS coming?  Not sure what I am talking about?  Click here for details.  Not sure how $5.39 is going to make a difference?  Let’s take a look:  If all 300+ Zippy Zebra followers donated their change to EDS each month and it was on average $5.00 that would equal $1500+/month and one year would be $18,000 to EDS research.  Imagine what that could do?

CHange FOr EDS

Life here at the Zippy has been full of surprises (like it always seems be with 4 zebras and their comorbids) but nothing we can’t handle so far.  How has your week been?  Have you enjoyed your summer?  Avoided the heat or embraced the season?  Personally we stayed cocooned inside or only venture into the shade due to heat and sun intolerances.

BUT enough about us we want to hear about you.

Plans for 2017 and remaining 2016:

This month we would love for each of you to leave a comment below, send an email or comment on our Facebook page with the things you would like to see from The Zippy in 2017.  More personal stories, more tips, more of a peek into our daily lives, more articles and websites, etc…?  If you would like more tips, would you like daily photos with quick overlay ideas or lists such as “5 Ways to Fight the Heat”, “10 Tricks to Help You Garden”,  “25 Things to Make Being a New Mom with a Chronic Illness Easier?”  We WANT to hear from you and not just share whatever pops into our little heads.

We are also looking for the following:

Contributors to share an article a month, week, etc…  I cannot offer any kind of reimbursement but credit will be given and you will be helping encourage someone else (without the hassle of running a blog).  These can be short stories, feelings, etc… just a contribution from another source.  I imagine y’all get tired of hearing from me.

Personal Real Life Stories:
We would like to feature one EDS story per week in 2017.  That is 52 stories to spread awareness and help others.  With over 300 devoted readers I know we can manage 52 stories, even if you have already submitted a story you can continue to tell the developments or some short stories.  All contributors by October 31st, 2016 will be entered in the drawing for a FREE T-shirt and magnet.

We would also like to feature one Marfan Story per week/month.  (Marfan Monday.)   Once again we would need 12-52 stories and I would need them by the end of the year.  Stories submitted by October 31st, 2016 will also be entered to win a Marfan T-shirt.

As the year progresses I will be asking for additional stories for various awareness months:  Autism, Cancer, Fibro, Lupus, Chiari, POTS, CCI, etc...  These will also be entered into a drawing with the gift to be announced.

We are planning an explosive year for spreading awareness in 2017 BUT we NEED your help to do it!!!!

Many of you have offered your story, or to share a life event but have been unable to submit them due to complications.  If you can do it NOW is the time.  We want to hear from Y.O.U.!!!

For details on submissions click here.

Sharing Sunday Link Up #25

“Sharing Sunday” Link-up is available EVERY Sunday for blogs featuring articles that will help those with a chronic illness.

This linkup is not only for the chronically ill but for everyone that has a personal story, that offers help (allergen-free recipes and ideas), adaptation ideas, testimonials or anything that would be helpful or encouraging to others, (even sharing a day in your life).

The idea of the “Get The Word Out” link-up is to spread the word about our illnesses, adaptations, short-cuts, tools, articles, stories, recipes, income earning ideas, etc… and to support each other during this sometimes, lonely journey.

Bloggers struggling with pain and challenges can visit other sites, while non-bloggers can find others like them and follow along in addition to finding recipes, tips and adaptations that may help.

I LOVE fun, crafty, anything goes linkups but the “Sharing Sunday” Link-up is not one of those.  If you want to share something fun and crafty check out our Sharing Saturday Link Up at Treasured Tidbits.

We will have a few guidelines to keep the links useful and uplifting to our readers.

Bloggers before linking up please follow our guidelines found here.

Sharing Sunday Link #24

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I Just Want To Be Well For My Son-A Mother’s Story

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I just want to be well for my son. A Mother’s Story

I just want to be well for my son.


I don’t even know what healthy is!

But my son needs a strong and healthy mom.

I’m a 27 year old disabled mom with a rare syndrome called Ehlers Danlos Syndrome type 3- Hypermobility.  It’s a multi-systemic disorder, meaning it effects, in severe cases like mine, almost every single body system.  It’s caused by a defect(s) in connective tissue.  Collagen is mainly effected, which the body contains about 85% of!

I remember the pain started around the age of 7.  It was nerve pain from carpal tunnel and tarsal tunnel syndrome which was the worst!  I was told I was being a baby about it and that it was just growing pains (I am quite short, only 4″11.5″.”)  It was joint pain daily as well, with some muscle pain.

I also had panic attacks from all the pain, it was so overwhelming, I couldn’t sleep and got gastrointestinal migraines.

Continue Reading the full Article…

A 26 Year Old Spoonie Shares Her Story (Part 2)

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A 26 Yr Old Spoonie Shares Her Story Part 2

To view the beginning of this Spoonie story click here.

20 years of failed allergy injections are also now behind me; new allergies were diagnosed, but I was able to stop my injections.

I actually feel better OFF the injections than I did when I had them.

Go figure! Despite increased medical costs in this state, moving to Florida was the best decision I have ever made.

As far as my diagnoses go, I have quite a few.

Continue Reading the full Article…

40 Years to Zebra

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In honor of EDS awareness month, I wanted to share my EDS story.

40 Years to Zebra Cindy B's Story of Diagnosis

40 Years to Zebra

It actually starts years, well decades, before I even knew I had EDS or what that word even was.

I have been sick since birth.

I was able to find records that show my hips popping out at 6 months and all sorts of notes about checking left arm, right leg, etc.

Around that time I also started having other issues but no one connected that to my hips.

When I was 5, I had my first surgery for a hernia that I either gave myself or it just came up?

Continue Reading the full Article…

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Scariest Night Update 2 (Hospital Stay # 1)

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To read what constitutes the scariest night of our lives and why we are sharing updates click here.

To read why we are heading to the ER again click here.

Please note that this was written (June 18th and it is now July 30th.  I will be sharing updates daily until I am caught up to where we are in our journey now).

Being the control freak momma I am, I didn’t just load my daughter into the van and run her to the ER.  Instead, I packed a cooler, a hospital bag and made arrangements for my pets and other children THEN we left for the hospital.

I asked my hubby to drive so that I could support my daughter’s head on the two hour car ride.   If she wasn’t resting her head on my hands behind her head she was leaning forward on her huge stuffed penguin to relieve the pressure on her neck.

Let me just say we have never, ever been to Carle hospital, we have visited in one of their clinics but never to the hospital itself.

We were checked in almost immediately but then had a fairly long wait in the emergency waiting room.  After all it was after 8:00pm on a Friday night.  I was thankful we had brought her Gatorade to help keep her fluids up while we waited.

Hanging in the waiting room at Carle

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The Scariest Night Of Our Lives

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Today’s post is coming from a worried momma.  A momma who is looking for ideas and answers.  Below you will find another personal story.  I know this is the second in a row but it’s one that is weighing heavily on my heart.  It was the scariest night of my ENTIRE life.

Scariest Night

Continue Reading the full Article…

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Real Life Stories #4-Awaiting Diagnosis Marfan Syndrome

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Awaiting Diagnosis

Real Life Story #4 Rachel's Marfan Journey

Hi!  My name is Rachel.

I am 14 and a freshman in high school.

I enjoy designing clothes, reading books, hanging out with friends and watching movies.  I like creating stories and drawing.

I have been diagnosed with severe scoliosis, flat feet, severe vision issues, Ehlers Danlos Syndrome Type 3, Postural Orthostatic Tachycardia Syndrome and Mast Cell Activation Syndrome.

I am currently awaiting gene testing results for Marfan Syndrome.Continue Reading the full Article…

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The Story of Me (In verse).

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For further details on her illnesses, simply click on the highlighted words.


Rachel Poem

My name is Rachel.

   This is the story of me.

My body is full of surprises, as you will soon see.

I have strange joints, not just elbows and knees

 but ALL of my joints are really bendy.

Continue Reading the full Article…

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