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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.

Sunday, October 30, 2011

Blessed Adventure

 An opportunity arose.

  I went.
 I ended up lost.
 It was beautiful.

Thankfully (this time), I found my way home before ending up in another state. :)

Saturday, October 29, 2011

Sad Day

  I went to a funeral today.  It was not Melanie's funeral, though her service was today as well (she lived on the West Coast- I'm a transplant now living on the East Coast).  Today's funeral was for 7 month old Graham; the son of a co-worker.  Graham was an incredible baby boy; born at 24 weeks gestation weighing only 580 grams, he fought for months a previously unsurvivable infection and won!  Graham did very well for a while after that, but then his little body got too weak and too tired.  His parents did an amazing job loving & advocating for him and this is all a very very sad thing.  I have been to more children's funerals than I wish to remember, and I will never get used to them.  So today is an understandably sad day.  I am sad for Graham's family and the HUGE loss they are feeling, I am sad for all of the feelings of loss Graham's death brings up in me, and I am sad because Melanie has died and I can't talk to her about it all.  It's a sad day.

Sunday, October 23, 2011

So Long, Dear Friend

  This is Melanie, she is my friend.  I've known Melanie since I was a kid, which is rare for me since I moved a lot.  In school, we were more friends than acquaintances, but more acquaintances than friends and it wasn't until we were adults that we truly knew each other. 
  Melanie always stuck out; she was a big ball of positive energy all wrapped up in a teeny tiny body.  If she ever made it to 5ft tall I"ll never know because she never seemed all that small to me- and I've been 5'8" since I was in 7th grade!  I remember one day when we were really young (6th grade- maybe?) hanging out at her house and her telling me in her positively matter-of-fact way, that she had leukemia as a baby and that the medicine that saved her just happened to make her small.  I took the information as she gave it to me, and never thought about the magnitude of what it meant until later; as far as I was concerned she had leukemia as a baby and then she didn't- awesome!  As it turned out, at 25 Melanie was to battle breast cancer and win.  A few years later she had a scare with bone cancer, and then last year they found spots on her liver- I think I still have her text on my phone telling me.  Through her illnesses, she went to school and graduated with her Master's Degree to become a Child Life Therapist (one of my favorite kind of therapists!) so that she could help children who are going through what she had and was going through.  She was involved in patient advocacy & support, she participated and even taught Laughter Yoga.  She inspired everyone she met.  She was strong- so strong that she sometimes allowed herself time to let her fight get her down; lick her wounds, regain her energy and get back up again, even stronger.  These were our conversations that inspired me the most; you're only as strong as you you can be, and sometimes you have to rest and let those you trust carry you while you're weak.  I am so thankful & honored & blessed that she trusted me with that.  Melanie fought hard, and I believe she gave cancer a pretty good ass-kicking before peacefully dying last Saturday, October 15th (I'm told with a slight smile on her face.) 
  I have dealt with death before, the tsunamic waves of grief aren't new to me.  What is new to me is this feeling that the world has truly lost a light, and now there is a void in her place.  I am usually able to be relieved for someone who's fight with disease is over; I can be thankful for knowing them and that they are at peace- and I feel guilty because, while I feel that way for her most of the time, sometimes I'd rather have her here. There is now a Melanie-sized hole in my life; I keep almost texting her, our last Words With Friends game is still up on my phone; I'm craving a chat- some Melanie time :).  She is free though, I truly believe that & and I am so so happy for her.  I am also so so thankful for having known her, so grateful to have experienced her friendship; I hope that I always carry the lessons she taught me and pay them forward.
So long Dear Friend, until we meet again...thank you for being you.

Saturday, October 22, 2011

A conversation...to myself

So here it is; the work in progress that is my blog.   I struggled with the idea of having my own blog; realistically, this is just a one-way conversation to myself.  Do I need that?  Aren't I already having those in my head more often then I should admit to the world?  On the other hand, the internet has way more conversation-follow-up information than my brain does, so why not? PLUS, someone looking for information or even just a person to relate to may stumble upon my words...or so my thought process goes...

 In the end, I clearly decided to go ahead and start a blog, if only for the intention of having the opportunity to say things that I don't feel comfortable, or feel able to let go of in front of actual people.  I'm naturally a pretty positive, look-on-the-bright-side kind of person.  Not annoyingly (if I do say so myself- and hey this is a one-sided conversation to me so I can!), mind you, but when I talk about things that suck- it's usually in a way that end up making the listener laugh.  I've always been that way, I hopefully always will be. Over the course of my life- a lot has sucked, and as strange as it sounds, I feel like I have to make other people feel better when they talk to me about it.  Wow....that's f-ed up!  This blog could totally end up saving me a ton in therapy!  Or, it could possibly make me crazy enough to stop speaking to real, live people all together only to save my true thoughts for this one-sided conversation to myself.  Eh...time will tell..

Anyway, back to my point: I have Ehlers Danlos Syndrome (EDS).  There is a brief description of what those words mean to the right of the screen, but the truth is EDS effects people differently; so anytime I talk about it, I'm only representing what I personally experience with this syndrome.  For me, EDS effects my major joints; my hips (the right more so then the left) slip in and out of their socket countless times during the day, same with my shoulders & knees.  My ankles & wrists slide around when moving them as does the parts of my spine that connect with my hips, and way up where it connects with my head (ever feel your head slide around on top of your spine?  It's weird even for weird).  I pop & click throughout my days and pray that nobody thinks I just had some kind of weird gastric experience.  I get injured really easily (subluxations, dislocations, slips, and for some reason broken fingers & toes are my norm), bruise & scar easily.  I have Mitral Valve Prolapse (MVP) as well as POTS which makes me pass out, overheat, have crazy heart pounding craziness etc. pretty easily.  I suspect I have dysautonomia as many EDSers do, but I've not been officially diagnosed with that.  EDS also greatly effects my entire GI system.  Over the past 3 years, I have developed a complete intolerance for gluten, dairy, mammal & it's byproducts and most fats- which is really frustrating for someone who LOVES to cook (and is really good at it- see, I didn't even apologize for gloating that time since I know I'm just talking to me :) ) & eat what I cook.   I miss food terribly, but the aftermath of eating those now forbidden treats just isn't worth the days & sometimes weeks of horrible pain and not so appetizing events that follow.
  I was diagnosed by a geneticist 4 years ago by a pretty prominent Geneticist for our area; she's been featured on those Mystery Diagnosis shows and I feel pretty lucky to have been seen by her, especially since she specializes in Pediatrics.  I've not yet been typed (there are 7 different types of EDS the last I checked, though that number seems to fluctuate between 7 & 9 depending on who you ask), and I seem to have forced several Dr's to scratch their heads because my symptoms tend to go across several different types from Classical to Vascular- which apparently isn't allowed with EDS... who knew I could break so many rules! :)

Aside from just talking to myself, another of my goals in writing this blog, is to chronicle my journey to treat my symptoms as naturally as possible and find a Doctor who shares that same goal for me.  I do not have a general practitioner; I have been searching for one since getting diagnosed, though my Dad will tell you that I'm not looking hard enough since I've not actually gone to a new Dr. in over a year.  I got fed up seeing new Dr.s who would tell me the same thing "You have EDS, here are some pain pills and anti-depressants".  I am not totally opposed to using drugs, I would just like the opportunity to try something healthier for my body before resorting to them.  So far, I am self-treating my EDS; I am constantly searching for foods that I can tolerate that will actually FEED my body what it needs with as little preservatives, chemicals & hormones as possible,  I am trying to counter my weak & stretchy ligaments by keeping my muscles strong through modified YOGA & swimming- I would like to add biking to that regiment, but I need my bike fixed and can't afford that right now. :/   I really want to find a Dr. who will help me, and hopefully this blog will help me hold myself accountable to that search.

So there it is, my first post.  Hey, look at me, I'm a BLOGGER!!!