Rantings of an EDS Mom

Rantings of An EDS Mom

I just finished our company call for my direct sales company and they announced our trip incentives.

It all sounds wonderful and I would love to go.

Who doesn’t want 4 days and 4 nights paid vacation?

No house to clean, no doctors to call, no doors to answer, no meals to cook, no dishes to do.

And then I remember I have E.D.S. (Ehlers Danlos Syndrome)

My girls have E.D.S.

My daughter becomes like a stroke patient with just the turn of her head and one day might not get all her skills back. She still struggles with many things the first episode took from her almost a year ago. I can’t leave her. Even the hospitals ask me what and how to do things because of what they have seen happen to her by simply touching her or giving her an IV or asking her to turn over in bed or lifting her up.

She can go from perfectly normal to a limp, unconscious, biscuit in seconds and the only symptom is that…she “feels funny”.

I remember that just opening a bottle can cause a major wrist dislocation in myself or my children. I remember that our bodies don’t regulate our temperatures properly and we would have to pack an enormous wardrobe just to stay out of the hospital.

I remember we have dislocated our collarbones and shoulders by simply laughing and the ER wouldn’t even try to put it back for fear of causing further damage. Wouldn’t even touch her because of what was in her records.

I remember the fear of waiting 24 hours hoping that her shoulder and collarbone would reset so that I wouldn’t need to expose her to germs in the ER. Or face a Dr who would call child services because she looked like I abused her because of all the bruising.

AND

Who in Hades can dislocate their neck and collarbone by taking a breath???

Well, darling we can.

That’s who.

Thankfully our hospital does have her fragility documented but the fear of what another Dr or hospital might do is real. So many don’t understand.

I remember the last ER visit (to a strange ER) where we were greeted by a Dr. who flat out said “We aren’t equipped to handle her. We are sending her out. Where do you want to go?” And talked about a helicopter ride. (Thankfully a nurse had a friend with EDS and was able to help stabilize her so we could just take an ambulance).

I remember that the ambulance wouldn’t take her because her blood pressure went nuts every time they tried to move her body and I had to make them get her on the other gurney before they worried about blood pressure (don’t you just love P.OT.S.?).

I remember that our Neuro that questioned our diagnosis at first, but was onboard within 5 minutes of treating my daughter, moved heaven and earth to get extra staff in to be with my daughter for an important test ON A SUNDAY! Six people in room, with me immediately next door in case something went wrong. Just to get an MRA.

I remember the calls I heard the nurse and doctor make over and over to secure the perfect staff and then listening to the let down as they reviewed her files and didn’t want to be responsible for testing (even with help). The return calls as the ladder was climbed, promises were made, machines brought in (just in case) and me repeating over and over to EACH person the things we have experienced and the protocol to take (for her) so they would run the test. The eye rolls from the staff as they thought I was an overprotective mom until they read her file. The looks on their faces as the stat nurse that came in to work EXCLUSIVELY to advocate for my daughter for the time of her test argued with them about following normal protocol. The tone of her voice when she didn’t back down but I couldn’t be in the procedure. (Yes, I could hear her through the hospital walls).

I remember that if we had went to a strange hospital she might have died from the basic IV BECAUSE her reactions are NOT in their records. And you HAVE to see it to believe it.

I remember that just sitting in the car for a short road trip causes a mast cell reaction if the sun is shining at all.

I remember that riding puts our hips, neck and shoulders out causing hours or days of pain.

I remember new places, even old places with new furniture or new food causes allergic reactions that take days to recover from.

I remember that having my family and my health is much more important than seeing a new city, or trying a new food or taking that shopping trip.

I remember that EDS may take my experiences and make me look a little strange because I use adaptations most 40 year olds don’t even know about or will ever hear of.

I remember that EDS and it “friends” as I call the side illnesses it makes us prone to makes my teenagers live a very dull life.

But I also remember that EDS won’t take my joy, my love for family (no matter how special they are), my love for God or my love of life.

Yeah, I may get mad every once in a while and throw a fit or two. Maybe even wallow in self pity but I will not let it steal my joy or my family.

I have EDS but it does not have me.

So I can’t go to “Paradise” the place.

To me Paradise is at home with my family, alive, alert and driving me nuts. (Yep, they do that, alot but it is a very short trip and they know me there.)

The author is the EDS mom of 3 children and founder of this blog. Her daughters not only struggle with EDS but have several co-morbids as well. Including severe scoliosis, MCAD, Dysautonomia, P.O.T.S., Fibromyalgia, RSD or CRPS, Costochondritis, Tietze syndrome, Migraines, Possible (yet undiagnosed) CCI, and more.

The following links were also written by the author and her children.

My Children and Pregnancy Loss Stories

Living With a Chronic Illness-My Current Struggle

Letter From an Overprotective Mom

The Early Years When EDS Was Still Fun

The Story of Me In Verse (written by the author’s youngest daughter)

A Positive ER Visit

The Scariest Night of Our Lives

Homecoming in Walking Boots (written by the author’s oldest daughter)

Note: Any of the words in blod blue above can be used to click through for further information.

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Tags: EDS, Helping Your Unusual Child, Parent Rants, Rantings, Vacation with chronic illness

Inspiration, My Family's Personal Stories, Real Life Stories | TinaMiller | May 3, 2016 12:11 am

3 Comments

By Hannah @Sunshine and Spoons, May 3, 2016 @ 4:31 pm

I’m so glad I found your blog!! My son and I were recently diagnosed with EDS and I’m sure that at least 1 and possible 2 of my other children have it as well.
By TinaMiller, May 3, 2016 @ 5:52 pm

Welcome to the group. 🙂 I hope we can help you with your journey. Brighten your loads, lighten the load and maybe share a few tricks.