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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, June 2, 2012

May's EDS Awareness wrap-up

EDS Awareness Month has come & gone, so I thought I'd post the rest of my Face Book Awareness rants up for whoever may be reading.  These rants are few, but they are there.  I can understand someone being disappointed in my Elasti-girl representation of 4 measly (albeit informative & eye-feast-y) posts.  One might think that I would have done everything I could to make the most out of the outlets afforded me by our handy social networks to spread the stretchy word.  If I were judging someone else, and not myself, I would think that someone afflicted with a syndrome that riddles her with a crap-load of different diseases that effects every minute of her very long days would spend a lot more time making sure she came up with at least one colorfully witty and smart-astic EDS tidbit a day during the month the national foundation raising money for research/treatment on such a syndrome was trying to make official across the world.  Fortunately for me, I knew better than to expect such things.  I'm busy & I know it.  The truth is, if I was cute/charismatic/important enough to have been asked which month I would prefer to be Ehlers Danlos Awareness month, I can assure you it would not have been May.  May ties with December in eventfulness on my calendar, so the fact that I did 4 posts at all is pretty darn fantastic, and even though you've probably already finished judging, I reject it completely (rejecting judgement, btw is an awesome weapon to have in your psyche-arsenal, I highly recommend it and wish every girl was taught how to do this at as young an age as possible).  

Aside from Mother's Day, which by the way gets better & better the older these kids of mine get, for which my  preciousness-es got me exactly what I wanted:
A day with them at the beach
 May also happened to be the 8th Anniversary of this, the most hilariously and often inappropriately clever boy's birth in my new car. 
That's right, 8 years ago, this little Dude was born in my car thanks to EDS & two (2!!!)  midnight trains.  Being our 4th baby (and first healthy baby after 2 separate traumatic sick baby births in which only one survived), and seeing immediately that he was healthily fat & screaming, my husband and I could not stop laughing at the situation & everyone freaking out around us (who probably thought we were nuts).  My most favorite birth by far, and we've been laughing together since.
May would bring the 12th Anniversary of our first babe...the one who made me a Mom....just 7 days later.
I know...I'm showing her face...and I'm wearing a towel on my head (getting ready for work)....but she's so cute & lovely all rolled into one smarty-artsy-pants.
Then of course there are the Dr. appointments, end-of-the-school-year violin concerts, school programs and work projects (oh the many work projects...) that simply don't care about whatever else may be going on in May- they just...don't...give-a-damn!

So, without further ado, Ehlers Danlos Syndrome awareness & knowledge commence:
May 30, 2012
Ehlers Danlos Syndrome is personal; it's symptoms are unique to each person who has it. While there are many symptoms that effect most people with EDS (or EDSers, as we tend to call ourselves), the severity of these symptoms vary. There are also many different symptoms that effect some EDSers & not others. So far during this Ehlers Danlos Syndrome Awareness month 2012, I've shared with all of you the general basics of what EDS is, but today I'm getting a bit more personal-which is not really natural to me. Before doing so, it's important to me that you to know that I am a tough cookie. I do not allow EDS to steal my goofy-ness, or joy, nor do I allow it to stop me from doing what I need or want to do; though I sometimes need to postpone things for later, or stop in the midst of activities to rest, or just plain do them differently. EDS is a challenge in my, my children's & my family's lives, and I work hard everyday to show them how to be awesome despite it. That being said- these are some (not all) of the symptoms we experience with EDS:
*Loose joints; they hyper extend, subluxate & dislocate pretty regularly, some daily (mostly my knees, hips, ribs, shoulders and fingers)- causing premature osteoarthritis/Chronic degenerative joint disease. It is because of this extreme joint instability that Daughter-A uses AFO's full-time & a wheelchair part-time.
*Fragile skin that bruises, tears and scar very easily (usually over slight touch or scratch).
*Slow healing of bruises, scratches, incisions, etc. Recovery time for any of these things is usually twice as long as typical patients.
*Muscle fatigue and pain- not tiredness- fatigue (like I feeling like I can't possibly lift my arms or legs because they're suddenly 900 lb.), tendonitis almost always somewhere due to the joint laxity.
*Dysautonomia=  causing me extreme hypotension (low blood pressure), tachycardia (fast & irradic heart beat), gastroparesis (slow or sometimes paralyzed gastric function), heat intolerance (passing out is a regular thing in our house), and other weirdly abnormal things like having an inability to sweat
 (which is seperate from, but does not help the heat intolerance), being constantly dehydrated, phantom fevers, migraines, Reynaulds Phenomenon, etc.
*Youthful looking face! Yay for that one! :)
*Old looking hands- boo : /
There are more, but this is already long & uncomfortable for me lol. For more information please message me, go to ednf.org, Mayo Clinic.org and wikipedia actually has some pretty good explanations of EDS & a lot of these symptoms individually.

This May I set out to bring a little awareness to this syndrome that has become apart of our normal everyday lives. I've never really openly come out and talked about it in such a personal & public way before, so this has been a little scary for me. I really appreciate all of the love & support I've gotten in doing this- so thank you to those of you loved on me through this month. :) I may have one more post about EDS, but after that I'll be back to my regularly scheduled programming. Please know that I am always open to talking/answering questions. Thanks for reading & caring. I hope that learning this little bit will help others understand a little more about living with chronic illness.

May 31, 2012
picture from: http://chronicle.com/blogs/brainstorm/does-philosophy-just-keep-going-in-circles/46098   

Today is the last day of Ehlers Danlos Syndrome Awareness Month & instead of posting more information on Dysautonomia, I'm going to have to do that later, or ask you to Google it. Instead Husband & I will finish the paperwork we need to bring to the Geneticist tomorrow, where son-C will be formally diagnosed with Ehlers Danlos Syndrome.

So there it is/was.  This was my first time participating in any kind of EDS Awareness "thing", so I'm pretty proud of myself for going onto FB and outing myself with it.  For the record, if I were cute/charismatic/important enough to have been asked my preference of months for EDS Awareness, I'd have chosen June; there is only 1 birthday- that of our son J- who passed away from Ehlers Danlos Syndrome shortly before birth on June 29, 2001. <3

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