Dr.E.R. Staff

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.

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.

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

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

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.

Read more »

A 26 Year Old Spoonie Shares Her Story (Part 3)

My primary doctor has referred me to a rheumatologist, who I will see in June, because my last blood test revealed a positive ANA panel. This means I likely have an autoimmune disorder, on top of everything else.

I am scared to go see this specialist, as my last rheumatologist I saw outright told me I was crazy (!), was too young to have so many problems, and that I was obviously making it all up, I was being dramatic, and it was all in my head.

It’s a tale too many chronically ill patients hear.

I’m not being dramatic; I’m being honest.

I wouldn’t be paying a medical professional to help me if I wasn’t at breaking point!

Read more »

A 26 Year 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.

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A 26 Year Old Spoonie Shares Her Story (Part 1)

A 26 Year Old Spoonie Shares Her Story (Part 1)

My name is Nicole.

I am 26 years old, and a Spoonie.

Ever since I was a baby there was always something underlyingly wrong with me that held me back in life and kept me from being “normal”.

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Becca’s Story- A 19 Year Old In an 80 Year Old Body

Becca’s Story-A 19 Year Old In an 80 Year Old Body

Hi!  I am Rebecca V.

I am 19 years old but I feel like I have an 80 year old body. 

I have been diagnosed with HEDS and Fibromyalgia.

My fibromyalgia diagnosis came after the EDS diagnosis.

What does this mean?

It means that my collagen is faulty and my joints are constantly popping, slipping, sliding, and dislocating.   It means that if I do a task for too long (like knitting) my shoulders, arms, and hands will not work properly and hurt for days.  Sounds like fun right???   My body literally falls apart with everyday activities.

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One Woman’s Shares How Faith, Family & Fun Carry Her Through Her Days of Pain

One Woman’s Shares How Faith, Family & Fun Carry  Her Through Her Days of Pain

This is a story.  It‘s about me.  A woman of faith with E.D.S. #3

This means that I am “bendy” and very seldom break.  But I do often wonder “Just how much more can I take?”

I go to bed sore and wake up in pain.  It doesn’t seem to matter in what position I have lain.

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Hannah’s Story and Diagnosis

Hannah’s Story

My whole life, I thought I was the biggest wimp alive.  Until one day, when I was commiserating with my sister about how we have more aches and pains now that we’re in our 30s. I explained how much pain and fatigue I have each day, fully expecting her to say something along of the lines of “Yeah, me too!”

She didn’t.  Instead, she looked at me and said, “Wow. I couldn’t deal with that everyday.”

It was at that point I realized that maybe not everyone felt as bad as me all the time, and maybe I wasn’t just being weak and pathetic. I started asking other friends and family members about their pain levels each day and discovered that I had been wrong my entire life.

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Winning the Race, Despite EDS, James’ Story of Success

When my son, James, was five and just started kindergarten, he was quiet and didn’t talk unless spoken to.  He was a great student, followed directions, didn’t misbehave, and I was always told he was the epitome of the imaginary “perfect student.”   Eight weeks into the school year he fell from the monkey bars breaking his arm into 9 pieces.  He never cried.  He went and sat by the classroom door and waited for recess to be over.  For the next three hours the teacher knew something was wrong but James would only respond “I’m fine.”   When they had him take his sweatshirt off because it was getting warm they realized his arm looked like a snake.

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One Woman’s Rise Above E.D.S.

One Woman’s Rise Above E.D.S.

Ehlers Danlos Syndrome.  Three ugly little words that changed my life, took everything from me, erased years of work and struggle, took away my identity.  Three words that gave me a new life, new purpose, a new appreciation for every day.

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