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.

Sunday, December 30, 2012

A crisis in anonymity

  Upon starting this blog, it was important to me to have a form of anonymity; not a lot, just enough to help me to feel free enough to release these inside thoughts of mine and not be concerned with burdening anyone in my "in-person" life with the heaviness of what EDS puts me through.  I'm not sure why I've felt that way, but perhaps it was one of the stages of being able to relate to myself as chronically ill.  I am afraid of others seeing me as ill because I am terrified of seeing myself as ill.  Now, I can't get away from it, I am ill, but it's not as scary or even as bad as I thought.  I can still find love and peace and fun and blessing, so I'm carrying on. This blog isn't completely anonymous; my name is in fact a form of Kris, and I have a lot of friends who call me Kris.  I do not live in the exact city listed, but I live close enough to wish that I lived there :).  My pictures are all real and truly me.  The only real anonymity is that none of my in-person friends or family can find my blog by searching for me, nor are they aware that I even have a blog.  Well, they didn't know until recently.  It's important to note, or remind you, that I am not from this part of the world, so most of those that I love are on Facebook, and that is the medium we keep in touch.  Though people locally can probably see that I am sick, most are polite enough not to ask.
  It all started in late November, when I was getting exponentially sicker by the day.  I was losing weight rapidly and just really going down hill, yet I was determined to get to A-10's Make A Wish trip despite my Dr. telling she did not want me to go. My dear friend- a sister of my heart- Jessica chastised me for not letting people in my life know what I have been going through.  How they could be praying for me, or helping my family in some way if they only knew.  I got very uncomfortable for two reasons; 1; what I described above and 2; because I realized it was only my pride that kept me from doing this, which is pathetic, and that I am keeping myself from growing as a person.  So I wrote the following note on Facebook:

My Jessica is mean

by Kris on Tuesday, November 27, 2012 at 7:27pm ·

So I have this Jessica, and she is one of my most dear friends.  In fact, she is MY Jessica and she loves me a whole lot, and while you'd think the opposite, this love she has for me makes her mean.  Why is she mean???  Well, I'm glad you asked; she is mean because she's making me write a post on Facebook to tell you, my other loved people, that I am sick and need for those who pray to please do so. 
She's so mean!
I don't want to tell you that I'm sick!  I want to tell you how much I love living in Virginia in the Fall with it's bright red & orange leaves all over the trees and yards.  I love how if you drive down a small street at just the right time, you get to drive through a cool leaf swirly (that's only happened to me once, but it was SO COOL!).  I want to tell you how proud I am of my M-girl for making the Vice Principal's list, which is no easy feat while being in the GATE program in the 7th grade.  I want to tell you how happy and beautifully A-girl is growing and how proud I am of how much of a warrior she is over her own health, educational and social struggles.  I want to tell you how blessed I am that my 8 year old Man-Cub still calls me his beautiful Mama, and loves to snuggle with me and still has the sweetest little voice you ever did hear.  I want to tell you how excited I am that I get to have that just-like-heaven feeling of watching my kids smile with delighted eyes for 7 days straight during A's Make-A-Wish trip starting this Saturday!
We all have stuff; life is hard.  Mine certainly is not the hardest; I consider myself one of the luckiest people alive.  It's because of that, that I haven't put a wholoe lot out on Facebook about being sick, because being sick hasn't taken away any of my blessings, and let's face it- it's way more fun to think on and talk about our blessings than it is to talk about illness.  However, I am here, obeying My Jessica and telling you that I could use some prayer & good thoughts (because she's mean).   Alot of you know that I have degenerative connective tissue disorder called Ehlers Danlos Syndrome (EDS) Types III & IV (also calleld Classical & Vascular types- you can learn more at www.ednf.org) which causes the body to have a lot of different problems since a lot of our body is made up of connective tissue- including our GI tract; thus my need for prayer.  I have been having trouble with food sensitivities for the last few years and have not been able to tolerate any solid food at all for nearly a month.  After more testing, I was diagnosed on Monday with gastroparesis- where the stomach is essentially paralyzed and it's probable that the same issue is in my intestines.  Try as I might I am at a point where I am barely able to get any calories or other nutrition into my body and my size 2 jeans are falling off my 5'8" frame.  I would really like to get better; my life is revolving around feeling like I'm about to be sick, or pass out, or fall over, or burst wide open.  I would LIKE to just be better quietly, without any attention being put on me over it.  I would LIKE to just quietly rejoice in eating sushi and sleeping all night without waking up from pain or sickness.  MY JESSICA, however reminded me that God didn't make us that way.  We were made to be-friend each other, and love each other, and pray for each other.  Frick'n Jessica.
So here I go: please pray for me. Please pray that I will get better, and that I will be able to enjoy Anika's Make-A-Wish trip without any trips to the hospital (for any of us!), that I will be able to get nutrition and feel good enough to enjoy these wonderful memories that we are about to make.  Please also pray that my Dr.here will be able to get me in to see Dr. Levy, an EDS specialist at Johns Hopkins soon enough.  Please pray that my family will be proud of how I am trying to be brave and strong, when I don't feel strong and I don't always feel brave.  Lastly, pray for blessings on My Jessica, because I love her way a lot, even when she's mean.

I could not have anticipated the responses I received from this note; so many people who I know and love, but live across the country (where I am from) had no idea.  39 comments by people who love me, want health and good things for me, and even thanked me for sharing.  Now since I've been in the hospital, they all want to know what's what.  So, I am taking the leap from anonymity into  sharing my life.  This scares me, but at the same time this falls right in line with living my life wide open the way I want to.  So I'm going to do it.

In order to do it; I've decided I needed to change somethings about the way I blog.  One small change ncludes a slight tweak to the name in order to not confuse things with a certain Disney Movie.  Most other changes are just to keep myself accountable to what & who I want to be.  I want to blog positively about my life, not just my illness- but as it touches every aspect of my life, it will be there.  I want to inform, but most importantly I want to stay true to my goal of showing others that living with a condition like this; losing abilities, getting sicker and sicker, does not mean that life is nothing but gloom and doom.  Life has much to offer despite  unsavory circumstances; I feel that in many ways we wouldn't even have the opportunity to know that if we didn't experience those circumstances in the first place.  I AM one of the luckiest people I know!

When the new blog is ready to go live, I will post the address and personally invite those who have commented on this blog to go to the new one.  I truly hope you will follow me.  Please comment on this post if you'd like to make sure you get invited.

Be well, Be blessed, Be happy Dear Blog,
 All my love,

No comments:

Post a Comment