My photo
Hi There, I'm Kris. I'm a quirky sort who loves silly jokes, sunflowers, music, divine interruptions and music. I am devoted to my nerdly, ginger-haired husband, our 3 living & growing kids, and missing our 1 Babe in Heaven. We journey together through this life, dancing to our own beat, while learning each step as my children and I are effected by a life-threatening & degenerative chronic illness called Ehlers Danlos Syndrome (EDS). Please look on the "What is Ehlers Danlos Syndrome" to the bottom right of the page to learn more about EDS. I believe I have been given this journey in order to over come it, and this is my story of how I get it done.

Thursday, February 9, 2012

ROunds on Elasti-girl

This posts is just through rounds of the day- well the week that has past.  Too many Dr. appointments, I even post-poned one because I have too many great big feelings about the appointments I was able to make it to.  So here it goes:

A week ago last Monday, I had an appointment for an echo cardiogram, which went very well; I was so thankful that it was a female nurse a sense of humor gelling up my naked chest and maneuvering the ultra-sonic wand around my left breast- helping me to forget that I was so cold, I could probably cut glass.
I got to watch the entire thing and as completely intrigued at what looked, to me, to be a perfectly formed and working heart: 
Because I have (thankfully) survived Endocarditis when I was an infant, We were most interesting in looking at the Mitral valve because I thankfully survived Bacterial Endocarditis years ago, as well as the aortic root and valve as a previous echo showed Aortic Root dilation (aneurysm)


This was the first time a they let me watch the screen, before they always had the screen turned away from me, but things usually weren't going well then, and I didn't really care what I would have seen anyway.  THIS experience was completely different though; I to to watch the entire procedure, and it was beautiful.
Everything looked great to me, which was confirmed by my Cardiologist 4 days later.   He said that he was surprised that structurally, the heart is functioning well- yay me- gold star!  He wants me to come in for a stress echo to see what my heart is doing when I'm having the frequent arrhythmia's  & fainting spells; I was supposed to get this done tomorrow, but I postponed it until the 24th because of everything else going on.

That brings us to this week:  This Monday I had my first endoscopy.  
Is it too late to tell you all that I DO NOT like UN-invited touching?
  I don't.
     Nobody cares.
         On top of that, as I'm getting ready for my scope (which consists of me laying on a bed, feeling perfectly fine whilst still in my work clothes having an IV inserted-with which they will, for a short time leave me incapacitated), the nurse comes in & tells me that there is a national shortage of versed, the amnesiac used to keep the patients from really knowing what's going on and immediately forgetting what they are feeling.......WHAT?! Can I just leave now?  Apparently not. :(  Off I go.  They give me the drugs that enable me to move into the positions they ask me to move into, to put that god-forsaken tube down my throat making me gag & wretch, yet disabling me from punching or kicking anyone for doing this to me. They ask me to swallow- eh???  I feel the tube moving down in places I've never felt before, and I never hope to again.  I feel pinching and rotating until it's over. Ugh.  I didn't post any pictures of this because they are disgusting and I'm nice- you're welcome.
In recovery, I see my husband come to my side and then leave very quickly.  I don't see him for a while, I later find out he ran out so he could faint in the next room....nice.
The Dr. comes in an tells met hat my stomach is literally covered in small ulcers and that there is something abnormal at the base of my esophagus; he took a lot of biopsies and prescribed nexium.  I wasn't able to ask any questions (drugs), but I understand now that the biopsies are looking for H.pyloria, a bacterium that causes ulcers as well as cancer- and that's all I have to say about that.   The GI Dr now wants me to have a full abdominal CT scan and lower GI & colonoscopy :::shudder::::
 I am very confused.  My stomach problems are in in my intestinal area, not my stomach.  Wouldn't I feel ulcers in my stomach and my esophagus???  Well...NOW I do since the Dr. took out chunks from everywhere.  I actually mostly feel it in my esophagus- swallowing is very painful. 
I went to work the next day, feeling in pain & awful.  I could barely eat and everything hurt, but I grinned and bore it thinking it was normal, but apparently looked really pale and not great, so my Director (again, awesome) sent me home and told me not to bother coming in early the next day (I had a rhuematology appointment so I planned to come in after ward.

Fast forward to the next day, I went to the Rhuematologist who, despite my attempt to keep an open mind, I didn't like.  She asked me why I was there, and I told her.  She examined my my hands (which are hyper-mobile, but the least hyper-mobile of the rest of me) and concluded that she didn't really think I have Ehlers Danlos Syndrome.  I explained that the diagnosis that I received from the renowned Geneticist was not up to debate & perhaps she'd like to perform the complete Brighton Score on more than just my hands.  She did and apologized once she got to the lower half of my body and watched both knees & hips pop out, ankles slip and my  negative arches.  
Now that we were past that, we started talking pain.  Because of my newly discovered stomach issue- I can no longer take any pain medication stronger than Tylenol (might as well be filled with air), so the Rhuemy suggested I get a cortisone shot in my most effected area to help me at least get around.  While the decision as to which body part make ails me the most was difficult to chose, the hip who made the now-famous public fall won out by a landslide.  I got the shot and marveled at how little it hurt until  about 10 minutes later when MOTHER F#*%@r it HURT!

There was more drama with that Dr. appointment; biopsies from the endoscopy kept bleeding; needing cauterized, transfusion, Vit. K & B12 shot with 2 days of rest at home.....too much to write and go through again in my head, but here I am.  Going to back to work for as long as I can make it tomorrow; suffice to say- this sucks, and I'm praying things get better.  It's been prophesied (by a Dr.) that I should bee feeling really good by Friday or Saturday, which will be helpful since Saturday is the day of my company's annual banquet.  


  1. Oh Kris what an horrific set of appointments!! It makes one question whether it is all worth it or not. My thoughts are with you mate... I guess that is the best I can do for now.

  2. Oh man, what a hateful week! Hope you are feeling better and something helpful comes from all that poking and proding.