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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.

Saturday, January 7, 2012

Second Step: G is for Gastro

 I met with my new Gastro-Doc yesterday.  I was a bit more anxious about this appointment as I knew this Dr. was a man; while I don't have screaming panic attacks over this-, my preference is to be naked among strangers with the same parts as me, if I must be naked among strangers at all.  I'm not even going to ask if it's normal that this-of-all-things is what I was anxious about lol.  As I waited in my patient-room,  my door was ajar enough so that I could see who was walking down the halls (this is before all the nakedness), I kept seeing  this big boisterous Dr. walking up & down the hall meeting the patients in every room before mine-eh...anxiety!  Finally a very tall, older man came in and introduced himself with a kind smile & a handshake.  He was authoritative, but his manner was humble & soft- this will do just fine.  (whew)  I answered his questions about what I've been going through over the last 2 years.  He told me he was familiar with Ehlers-Danlos Syndrome, and researched it more before our appointment (my heart skipped just then).  He surprised me by saying that he's not convinced that my Gastro-troubles are related to EDS.  Since I'm adopted, and I don't have any real idea of my genetic history, plus the fact that my children's EDS symptoms are so extreme makes him hesitant to limit our search for answers to proven EDS-related issues.  Right off the bat he says that I've already been tested for what he would have initially (celiac, etc.) and they came back negative.  He's stumped already- I'm noticing a theme here...   However, I have hope in this Dr., he's not ushering me out the door; he's concerned with finding the answer- that in itself is reassuring to me.

The plan, as he explained it to me, is to test in tiers.  Tier 1 is to get base line blood work, a Lactose Intolerance test (to see if I have an actual allergy- which I don't believe I do, or an intolerance-duh) & endoscopy.  Once those results come back, they will either guide us into a specific direction or not- moving us to to Tier 2; more invasive testing. Colonoscopy (whimper), lower GI and he wants to add a full abdominal CT scan because he felt  an "fullness" in a specific spot of my abdomen where I have also been having tenderness (during the naked part) along with whatever tests come up in any new direction from Tier 1. I'm not too concerned about the "fullness" yet, as he said it might just be an organ that is there and can be felt because of my fat/muscle loss- this is what I have been assuming since I started feeling it.  I can also feel my large intestine when my hand is on my abdomen and can feel "stuff" going through it- like a snake that's eaten a mouse- not cute.  I don't at all remember what Tier 3's plan is, but I'm sure I'll know before we get there.  This Dr. plans to consult with other GI specialists in the area as well as contacts he has at Johns Hopkins.  He says that he would eventually like to send me up there as we get closer or further to/from a diagnosis (my attention span allowed me to gather that I'll eventually be going there).  
I went to the lab immediately following and decided to ignorantly go ahead and do the lactose intolerance test (not realizing yet that it was a 4-hour long test- I am once again so thankful to be able to do the fundamentals of my job from my blackberry) since I hadn't eaten yet.  That was interesting!  I drank this gritty stuff that tasted slightly like watered-down Tang; it made me feel queasy & light headed (not sure if it was the "tang" or from not having eaten), which made the nurse nervous (even though I explained that I'm not scary-dizzy, just dizzy) and earned me a comfy recliner to relax in during the 4-hour test in which she drew blood every 20 minutes.  The nurse was very nice & pleasant, I'm still amazed by this- what a difference it makes in these uncomfortable situations.  After the test was over, I had to head into my office, feeling awful, but putting on my professional face.  It sucked.  I got through it by just isolating myself in my office and getting done what needed to be.  I'm so thankful for my understanding Director- he's one in a million.
Today, I feel worse than yesterday; like I have a boulder 3x's my size in my abdomen, I'm exhausted, achy (normal), swollen from head to toe and I have a fat lip (figure that one out for me please!). I'm also much more lax in my spine, I feel my tendons slipping painful back & forth over & under my vertebrae, this is most painful and I'm glad it's not something that happens all the time.  It feels like my actual vertebrae are slipping back & forth (which would kill me, so it's not that lol).  Ugh!  Yay for my big comfy chair!!!!  I'm also relieved it is Saturday; lots of rest on my agenda.  I have a 2 week-long break between appointments, and the next one should not involve testing (just a follow up on the journey with my GP). So, yay for that too.

Not very flattering; but me writing this post & my blessed chair/laptop/giant head phones-so-I-can-hear-my-iPod set up just the same. <3 



  1. It sounds like you have found some friendly doctors and nurses to help you with your problems. I have felt the same way - I always feel better when I'm not immediately dismissed and feel like the professionaly helping me actually wants to help.

    1. Thank you for your comment Tamara; it's amazing how different the Dr. experience is when you feel HEARD rather than cast away. :)

  2. Always good to find a doc who is actually familiar with EDH. I have to say though, I have a couple of vertebra that *do* move pretty freely, and no death yet! In fact my c1 vertebra is so loose you can feel it move if you apply just a few pounds of force to the bone from the left side of my neck. The lower two vertebra above my tailbone also move, although not as easily nor as often. And one in my midback that occassionally shifts outward enough to be felt by running your hand down my spine (and *really* hurts when it snaps back into place). My c1 vertebra is my chief complaint and main source of my pain. A few docs have been worried one of them will slip far enough to also slip a disk, but no ones worried about death on the horizon!