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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.

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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.

Sincerely,

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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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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How people look at you if you are using a wheelchair without being paralyzed.

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How people look at you if you are using a wheelchair without being paralyzed.

A personal story by Karina Sturm

With a chronic condition like Ehlers-Danlos Syndrome I am used to aids like bandages for all my joints and neck braces but usually I try to hide them as much as I can.  I do not want to look sick.

But there are situations when you need to accept extra help, like at the airport after a 10 hour flight.

All my joints hurt and I had the worst brain fog ever.  I had to book airport assistance and a wheelchair and I needed help with my luggage.

Last year it was the first time I had to use the wheelchair and I had no idea what this would mean to me.  I am a very stubborn and proud person and had a hard time to accept that I am chronically ill with a huge possibility of getting worse.

Continue Reading the full Article…



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Giveaway at The Zippy Zebra

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TheZippy Zebra Giveaway

In honor of the launch of Rebecca Howard’s 3 Book DARK HOLLOW ROAD (release date March 30), we are excited to offer the chance to win a FREE Kindle copy of WINDWOOD FARM .

Windwood Farms

The first in a paranormal series featuring a protagonist who struggles with a chronic illness (revealed in book 3).

I have to admit I have not had the opportunity to complete my copy but I have enjoyed the little bit I have read so far.

For details on how to enter please check the rules below.

Rebecca is also offering a FREE copy of the 2nd book  Griffin Tavern for anyone who signs up for her email subscriber list.  (I just did and it took less than 2 minutes to complete).

This is available to anyone not just those purchasing a book or entering the contest.

To discover more click here.

To learn more about the series and check out other great books by Rebecca check out her Amazon site here.

NOW FOR THE GIVEAWAY!

Just click on the box below (provide your email or link to your FB page to be contacted ONLY if you win the giveaway, this does not sign you up for repeat emails or FB notifications, it is ONLY for notification for winning)

Then leave a comment on this post below and follow the other instructions to be entered for a chance to win.  I know some have been confused by the “rafflecopter box” when it says to “leave a comment”.   Simply click the blue box at the bottom of this post and leave a comment there then return to the rafflecopter box and click “I commented” and you are entered!!!

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For contest rules click here. (Due to the fact no shipping is involved non-U.S. residents are welcome to participate).

If you would like to follow The Zippy Zebra please like our FB page, follow us on Twitter, or sign up for email notification.  We would love to have you join us in our journey to brighten everyone’s day.

 #WindwoodFarm # RebeccaHoward #Giveaway

 Note:  I am in no way receiving compensation for this promotion.  I have not received free material or financial restitution.   These are not affiliate links.   As previously stated I have yet to finish the book.   I am simply helping a fellow zebra promote her series.



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Real Life Story #5- Rikard’s Life With Marfan Syndrome

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Rikard’s Life With Marfan Syndrome

My name is Rikard and I have Marfans Syndrome.  Despite that, I consider myself quite fortunate in my situation.  I am 24 years old.  I study to become a lawyer and go to regular doctor check-ups, both of which are free.  (I’m a Swede living in Sweden.)  I exercise several times a week, maintain a healthy diet and generally manage the complications from my diagnosis.  If all else fails, I have friends and family who look out for me and know about the symptoms of my disease and side-effects of my medication.  All in all, I suppose I am quite lucky.  Unfortunately my father wasn’t.Continue Reading the full Article…



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Real Life Story – Marfans Journey #2

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My name is James Beal.  I was born in north Carolina in 1980.  I lived a normal childhood with little fear.

At night when I would go to bed I would always have the same strange dream.  I would dream I was sitting on the stairs looking out the window.  The Easter bunny would run by the window like someone was chasing him.  Then the devil would run by.  A few minutes later the devil would peek in the window,  hold up the rabbit ear and point at me.  At that moment I would wake up with severe chest pain unable to speak.  The doctors always said it was a heart murmur.

At 15 I was falling asleep in class, having severe chest pains, and unable to focus on anything.  I went to the Dr., but was told it was growing pains.  While running track one day, I had a heart attack and hit the ground.Continue Reading the full Article…



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Conquering The Dreaded Dishwasher

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Tips to Loading & Reloading The Dishwasher Photo 1

How many times have you looked at your dishwasher as a adversary rather than a kitchen aid?

Me?

EVERYDAY!

Today I hope to share a few of the shortcuts I have found to make using the dishwasher easier.

Loading/Unloading wrecks havoc on my shoulders and lower back while washing dishes by hand is comparable to torture so I have found a few tricks I to make it more bearable.Continue Reading the full Article…



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Reader Input Wanted

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Reader Input Wanted

Yep, that is you!

Whether you are a first time reader or veteran Zippy Zebra friend we want to hear from you.

As I was working on the kitchen posts a discussion began about on-line shopping and delivery services available.

As the discussion spread it was pointed out that availability varies by location.

While, I know that I will not be able list EVERY available service I want to be able to list the main ones.Continue Reading the full Article…



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Tools For Prepping Food In the Kitchen With a Physical Challenge

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I am certain we all have special “tools” we use in our kitchen to make cooking easier.

One of the most common questions I hear is “How can you….?”

This is the first in a short series of kitchen adaptations and tools I use to enable my time and energy to stretch just a little farther

My top tools for prepping

1.  Counter height bar stool

I do not use it every time I cook but it is extremely handy when my legs, ankles, hips or lower back will not let me stand.   I use it when cooking, prepping, doing dishes, etc…

Continue Reading the full Article…



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5 Foods to Prep In Advance and Freeze To Make Dinner Time Easier

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My Top 5 Foods To Prep For Easy Dinners Later

Why should you prep any food in advance when cooking is challenging enough?

Because doing the prepwork on a separate day removes a large portion of the stress and work on dinner night and can save time and money.Continue Reading the full Article…



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