Posts tagged: Chiari

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…

The Bird Family’s Journey With E.D.S.

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The Bird Family’s Journey With E.D.S.

The Bird Family's Journey With E.D.S.

My name is Carrie, I am a 32 year old single mom to 2 beautiful special needs children, who have a few genetic medical conditions I passed down to them.

I started having major pain in my body around age 10, then began having copious amounts of charley horses in my teen years.

I tore ligaments, and broken many bones then started passing out when I was 14 or 15 years old.

I was told nothing was wrong with me and “to keep pushing on”, so I did.  I still played sports, even through all the excruciating pain, passing out and joint dislocations.

Continue Reading the full Article…

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