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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.

Thursday, November 22, 2012

Quitting wrinkles the soul

You hear these sayings all the time:

"It's always too soon to quit." ~ Norma Vincent Peale

"Age wrinkles the body, quitting wrinkles the soul." ~ Douglas MacArthur

and of course

Last week, my GI Dr. gave up on me.  I've had a rough few weeks; as of today it's been 14 days since I've been able to keep down any solids, and have been living off of about 16oz. of coconut water, and a vegetable or fruit smoothie- if they stay down.  I've lost more than 10 lb during this time, and each trip to the ER (once by ambulance because I passed out) has ruled out gallbladder, liver and any EDS-related vascular scares and ends with the same "Here's some zofran, try to eat and see your GI".  So I did.  What did he say?  He said that it could possibly be gastroparesis...we'll check that, but beyond that, this seems to be what EDS does, and there is no cure.  This translated to me as "I can't help you, I won't figure out how I can help you, or look for someone who CAN help you; just go home and die."  He is obviously fired.
Since then, I have seen my GP, who is worried, but doesn't know what to do- this was 7 days ago.  Since then, I've gotten weaker and weaker; sicker and sicker.  I feel hungry, starving actually, and as soon as I try to drink (have left solids off the menu for now), I am plagued by nausea & vomiting (and I sometimes cannot stop), and if I don't vomit, I have horrible intestinal shooting pains, and it literally feels like they are jumping around in my abdomen!  Yesterday, I called my GP to ask if I could take the zofran more frequently, I'm already on the maximum does every 8 hours, the nurse (my Dr. is out for the holiday until Monday) said I could take it every 6 hours and that there isn't anything she can do until next week.  She is going to try and get me in on Monday.  Since then, I have gone to homeopathy to try and get some nutrients in my body to help me fight.  I have a very large clock ticking away in my head for 2 reasons; reason #2 is that my body obviously cannot continue this way for very much longer, but reason #1 is this:

Make-A-Wish is granting my miracle warrior a wish, and we leave in  10 days!

The above smiling beauty is my Miracle-Warrior smiling with all the excitement she can muster, because she has been granted the wish of her dreams to visit Disney World thanks to the Make A Wish Foundation.  Not only that, that, the Make A Wish Foundation is granting MY wish of creating these wonderfully special memories with my family- my hearts- the reason I will never never never never give up.

Sunday, November 4, 2012

Arms wide open

The past 2 years and some months have been full of outward and inward transition; it seems that just as one transition begins to close, another opens right on top of it.  Outwardly, I have gone from a stay at home mother as I had been for 10 1/2 years to a part-time working and then full time+ working Mom.  My elementary school-aged children have grown to the "upper grades" &  Jr. High School.  My full-time Special-Education Teaching husband was confident in all that he was became an unemployed, depressed and angry man who had lost all faith in the career path he had chosen and worked hard to pursue, and again full-time working teacher after 2 years, who still has little faith in this path he is on.  Inwardly, I've gone from physically strong bodied and strong minded, to physically weak; having little control over my day to day abilities.  While still yet very strong minded, I am learning so much about myself, and this life we all share.  At the beginning of this life changing phase of transition, I hated it.  I hated leaving my children to another's care, losing so much control.  I hated having a husband who seemed as though he never truly saw me for who I was, but what I was- never understood that I could do more than raise babies.  I hated how angry he could be and is.  I hated this break down of physical body, and that this is likely what my children will face, and most of all I hated that I couldn't bare this all for them.  After a while, all of that frustration and sadness left me tired, empty, hollow and useless....the opposite of who I want to be.

Today, the transitions continue, but instead of wrapping my arms tightly around my body with my head buried in the center; my arms are wide open, taking each change inward to examine and learn from; to choose to embrace or step away.  Accept and love, or love and let go.  I feel that what I've walked through the last couple of months since I last wrote you, Dear Blog, has helped me to get here- and I am so thankful.

My trip to California, in June was a big deal for 2 reasons;  #1 the point of the trip was to surprise my beloved Grandmother for her 80th birthday.  She had 75 people who love her fly from all over the country to sing Happy Birthday to her:

My Grandma is a wonderful example of love; she has loved me regardless of my choices in life not being what she wanted for me, she has loved me when it seemed like nobody else could or would.  She is full of life and laughter and I would be lucky to be half of what she is ever, let alone at 80 years old. <3

The #2 importance of this trip was that it was sort of a "coming out" opportunity for those who haven't seen me in a few years.  Though I've been diagnosed since 2007, I was not open to discussing my own struggle with EDS until the last year or so largely because it is so physically evident in me now- many of those I love in CA had no idea of what has been happening with my physically and I knew people would probably notice.  I was in a good place and ready for this; it was time.  Telling those that I love, helped me to let go of the burdens that had been leaving me so empty.  Perhaps, without realizing it, the frustrating and anger and fatigue I was carrying around wasn't just a reaction to what was happening under my roof with my job & husband, but perhaps it was carrying this burden of life & pain & death by myself and not trusting those who love me with it.  It was so joyful to see them; my village- I am so blessed!   We hugged & laughed and talked well into the night, and had coffee and shopped thrift stores and visited my beloved Pacific Ocean and we hugged each other good-bye with complete love & peace.