MY EDS

Things I have found helpful for coping with my EDS 

Note, I said MY EDS. Because mine is not yours, or my mother’s or anybody else’s, but mayhaps it could be helpful to you or inspire you to find your own way 

Originally posted to STL Ehlers Danlos Support Group August 2013

Mobile Apps 

Apps for keeping track of pills, alerts for repeating plus “As Needed” 

• Easy Pill for ios (iPhone, iPad, etc) I use every day to remind me to take my meds, and to keep track of my PRN meds for my pain management doctor 
• Your Medicine 1-2-3 by Sombrero Mobile for Android I have not used, but found for a friend with chronic illness, and it appeared to have same functionality as Easy Pill 

Google Drive 
I keep a copy of my current medications, ICE contacts, diagnoses, surgeries, providers & insurance info on same doc. Separate doc with family history, and one with Advanced Directive. Easy to keep up to date once set up, and now have all that info at my fingertips on my phone. 

Documentation 

Wallet Card

I have a word template for printing wallet cards with critical info, in case I am incapacitated & info needed by first responders. No computer, phone or family member required to access. I polled friends that work in ER’s or as EMT’s, and services with online info or USB devices are not generally used in an urgent situation. So I print, fold, and then slide into a business-card sized lamination pouch. Since medications change frequently, I do not seal the pouch. I have plans with my sister-in-law to create some attractive jewelry with the medical alert symbols and text See Wallet ID, but could also add things 

like Latex Allergy or Penicillin Allergy, etc. - things critical in the first few minutes of treatment. Let me know if you would like me to send you the docx file. 

 

Medical Alert Bracelet

The emergency services' Star of Life features a rod of Asclepius

The one I currently wear came from the MedicAlert company, where I also paid for online EMR (Electronic Medical Record) with a number or website for a doctor. Since then, I have found that most doctors want to hear it from me, and first responders just don't have the time. I have plans to change to one simply with the Rod of Asclepius with the Star of Life as shown here, pointing to my wallet card.

More info about the symbol & history here: http://en.wikipedia.org/wiki/Rod_of_Asclepius

Pain Chart
Sooooo subjective. Are they asking about my worst pain EVER? Or my least and worst pain for this specific issue? I smile and joke even when I am at a 9+++. I found the blog Hyperbole and a Half and adapted her post about pain to this one page Pain Level Chart. I did take the liberty of toning down the language a wee bit. 

Interesting factoids  

EDS & ASD
 When I was diagnosed a few years back, I waited for a while to read much about it. Perhaps some denial, or just overwhelmed, but I just didn't do much reading or finding forums. But I do remember one tidbit of info that I will have to look up & link to here. Kids with EDS are sometimes misdiagnosed with Asperger’s Syndrome, or high functioning autism, as it is now called. One of the big factors is the sensory issues, whether it be the touch of clothing, bedding or humans, reactions to sound or photosensitivity, a kid with EDS doesn't know how to express those intolerances and may be in pain, therefore may not be functioning as typical students. My 12 year old nephew has autism and is barely 
verbal, communicating on the level of a 2 year old, though he very obviously has the intellect of someone his age. Since he lives in CA and I live in STL, I volunteer for the Walk Now for Autism Speaks, sharing my enthusiasm and skills, though these days the actual walk is harder and harder.

Blanket O' Fun

If you've been reading my blog for a bit, you've probably noticed that I volunteer for the Saint Louis Walk Now for Autism Speaks and shamelessly beg for donations to our walk team (still accepting funds, eligible for 2009 tax deductions for a couple more hours! HERE)


Recent prevalence studies indicate that 1 in 110 kids in the US are diagnosed on the autism spectrum. My 7 year old nephew is one of those kids, so I tried to think up something special for his Christmas present this year. I am told he is a whiz with the computer and other household electronics, loves Thomas the Tank Engine, and is as fascinated by tactile yummies as I am. (I, however, usually remember to ask before stroking somebody's arm because their shirt fabric is so scrumptious!)


I had the softest baby blanket in my gift closet, plus own an embroidery sewing machine, so starting on the top right is my nephew's name, with colorful crayons to accent. In the corner is a red STOP button:

My 'signature' is on the bottom right with "Love, Aunt Laura" and three 'Ants' with a yellow SLOW button:

I found a design of a small dragon on a computer, and it went on the top left with his nickname and a green GO button:

And on the bottom left are puzzle pieces, used often in promoting autism awareness and signifying that it is time to find the missing piece. The button in the corner of this one is a glass charm with waves of dark red:

If you follow those circle outlines in the above image, you will find this purchased RECYCLE symbol in plush green on green (of course!):

Along the bottom are strips of interesting fabrics: a super-plush sock (I got two pair and have the blue ones on now!), brown saddle leather, black pebbled leather, yellow butter-soft leather, and a silky faux-fur:

The reverse side of the blanket sports appliquéd medallions cut from Thomas and Friends fleece fabric: 

This is a little pocket of palest blush pink "cameo" silk dupioni, a remnant of my wedding dress from this past May. The swirl motif and silver piping echo the tooth fairy pillows that I transformed for my nieces from their flower girl/ring-bearer pillows:

Finally, here is a scrap of the material from my sister Heather, aka Kyle's Mom'a, wedding dress. Super-soft double-sided silk satin with a store-bought rhinestone motif:

Kyle loves it, and I have gotten compliments from my sis and the autism specialist that helps with him.  I briefly saw Kyle via Skype this past week, though he wouldn't talk to me (no surprise.) I was able to see my darling nieces this past spring when they flew in to be in my wedding, but Kyle stayed home with his dad as he does not travel well. Love you, big guy!

World Autism Awareness Day

Celebrate World Autism Awareness Day! Visit www.worldautismawarenessday.org for more information.

My nearly 7-year-old nephew has has Autism. His own family can barely stand to travel by car for a few hours, so flying on crowded planes with connecting flights for 6 hours to attend our wedding is not something any of us want to put him through. Just one little, very personal reason why we need to find a cure for autism and fund treatment. Also why I will be participating in the Walk Now for Autism this fall in Saint Louis. A link to our page is to the right, if you are interested in supporting me, my nephew and all of us affected.