May is Ehlers Danlos Awareness Month

I know.  

Not only am I late on my blog about Ehlers-Danlose Awareness Month, but I'm also late in blogging in general.  I have a lot to update on, but have been struggling to find the energy & brain focus in order to do so.  Family & work always win the list of priorities- and while I so wish it were in that order, it really goes work and then family.  My hope is that is only the case for now.

ON to EDS Month!

As May is Ehlers-Danlos Syndrome Awareness Month, I am stepping waaaaaay out of my comfort zone and sharing about EDS & how it effects me on my personal Facebook page.  It took going through what I've gone through in the last year to finally just come out and tell my friends and family that not only do I have this rare genetic syndrome, but that it effects my life daily, hourly, minute by minute.  This is very scary for me.  These are my first couple of Facebook posts:

Posted May 1, 2012

May is Ehlers Danlos Syndrome (EDS) Awareness month. While it is not an official Awareness campaign in most states, my hope is that it will become official soon- we desperately need awareness & education among the public & our medical professionals. I will be posting information on EDS & how it effects our family this month. I don't mind talking about it nor do I mind answer questions, in fact, I appreciate when a friend or a loved one takes an interest in finding out about this syndrome that effects our every day. :)

~

After I posted the above information, my Stepmother shared it on her Facebook page saying the following: "My beautiful daughter and granddaughter suffer from this genetic disorder. Thanks for reading this and educating yourself!"

Wow!

Posted May 5, 2012

 What's Black & White & eats like a horse? 

A Zebra of course! 

A 'zebra' in medicine is refers to an unlikely diagnostic possibility- stemming from an old saying in teaching medical students; "When you hear hoof beats, think of horses, not zebras." Dr's will rule out the most common of illnesses first, which of course seems logical, and a real bummer when it takes years for someone to be finally diagnosed correctly- in our case with Ehlers Danlos Syndrome (EDS). EDS is considered a "Zebra Illness" which is why the zebra stripes are often seen in EDS awareness images. (Daughter, age 9) was 4 when she was diagnosed with EDS, (Son, age 7) will be 8 (we are waiting for our genetics appt. to officially diagnose him even though his Pediatrician and we are sure he has it) and I was 27 years old.

In our cases, EDS symptoms have been mistaken for the following:

Rheumatoid Arthritis, Lupus, Fibromyalgia, Depression (my favorite), Cystic Fibrosis (with GI emphasis), Benign Congenital Hypotonia, Metabolic Disease, cancer, and more... Living with a Zebra Illness means that most specialists don't know much, if anything about it, nor do they know what to expect, or how to treat the unexpected- resulting in longer hospital stays, and waiting longer for correct treatment than we should- causing more harm in some cases. THIS is why we need more awareness, funding & education about Ehlers Danlos Syndrome. The majority of Dr's we see would rather treat patients with more well known illness, and in some cases they treat us for illnesses that we don't have- hoping it will work anyway (resulting in longer hospital stays & waiting longer for correct treatment- which causes us harm). I don't say this to villianize Dr's- I believe this treatment is a result of the state of our US Healthcare system. We have fought long & hard & found a few FANTASTIC Dr's that want to help us first and study us second. We have been blessed to find a great pediatrician in our area (our pediatrician in CA was awesome too- We ♥ Dr. M!), neurologist, GP (for me) & geneticist. We are continuing to find the rest of the pieces we need to complete our medical team. It has been exciting for me to meet several Residents in the last year who are excited to meet their first EDS patient (me!), this gives me hope that the future of medicine will mean more options for those effected by Zebra Illnesses- including Ehlers Danlos Syndrome. ♥ :) ♥

~

Strong in spirit

:0)
That's me; strong in spirit & in my ability to be a goof.  I sometimes feel frustrated that these two characteristics of mine, being as large as they are, aren't strong enough to overcome or overpower my body's weaknesses.  Other times though, I realize they help me to transcend my body's inadequacies & find the laughter & joy that lay around unnoticed in our world of hyper-activity.  This week, in my continued state of more-than-usual pain, GI illness & of course the unending balance of my job, family & Dr. appts, I found myself able to create a smile in others by simply being there and being open to the opportunity of experience joy- and it blessed me more than anyone.  I found it as I walked the halls of the hospital, wearing my knee-length napkin gown & robe w/ my Punky Brewster-inspired colorfully striped knee socks & converse and stopping to talk with those I recognized (and some I did not) in along the way to my next destination.  I found it when talking with the technicians and nurses in the cardiac unit about yoga and how it's benefited me, even when my body barely allows me to do a beginner's DVD (despite my years of practice)- that now has said technician & nurses looking for those same DVD's for themselves.  I found it at work, while after a really bad (but punny!) joke, someone marveled at how obvious it is that my spirit, being joyful,  is so separated from my body that binds me to pain.  These small moments have each propelled me to the next opportunity & inspired me in a way that good health could not, and while in my weak nature I'd still take good health, I'm thankful for the opportunity to have a glimpse at something not bound to the earth- grace & joy.

Hey!  Did you see that corduroy pillows are making headlines????
Ha!
:0


As for an update: I don't have much of one, just another week of testing under my belt.  This week should be the last, with a full abdominal & pelvic CAT scan tomorrow (meow)  and an OT/PT evaluation on Tuesday.  I'm expecting GI answers once the CAT scan is read, my biopsies should be coming back around the same time (I hope).  I am currently wearing a heart monitor for another 12 days, but I'm only expecting some blood pressure regulating meds for that (for low b/p).   I'm ready to be done with these tests, and move on to some solutions! 

Just keep going...

I never really thought about it before now, but I suppose this has been one of my mantras since I was very young.  In the shadow of whatever mountain standing before me, it has never been my nature to question whether I am going to traverse it or not....as long as my goal is on the other side, I will just keep going.  This nature of mine; the innate bullheadedness that propels me forward against my every adversary, has not only gotten me to where I want to be (or at least closer to where I want to be) countless times , it has also allowed me to keep, for the most part, a joyful glint in my eye & a silliness to my being.  If I just keep going, there isn't time to sweat the small stuff, or cry over any proverbial spilled milk.  Granted both the bullheadedness & my silly-heart has gotten me into trouble as many times as it has saved me from it- I'm so thankful that it has been gifted to me.  Just keep going...because surely somewhere along this journey is sure to be a good laugh- thank God! :)

 
This week has been difficult, but it hasn't swallowed me.  I went back to work after my fall, made the first joke so that everyone knows that I am okay with my life's imperfections and kept going.  I am starting to finally feel the physical pain start to lessen, so hopefully my bruises and unsteadiness will follow suit.  I am still worried about what this means; the shelf-life that is my mobility, but seeing as there is not a damn thing I can do more than what I'm doing, I'll just keep going regardless.
  I appreciate the comments and support you've given me more than you know.  Just being allowed a moment to worry about it, grieve about it is so free-ing and gives me the courage to just keep going.  Thank you for that.

I'm trying to be responsible and putting credits on images that are not mine, I don't know who these websites are, or what they say or standfor, I was just looking for images:

Pic1 google images: vastfitness.com

Pic2 google images: danielyount.com

Pic3 google images: genekwok.tumblr.com

Pic4 google images: bravegirlsclub.com

Make everyday DAZZLE with (at least a little) Awesome

Dazzled is exactly how I feel when life surprises me with what makes my heart smile; something lovely/funny about my Little World (collectively my children or the husband),  an inside joke between me & God (usually at my expense), a picturesque double rainbow on my way to work or some one's surprising wit that makes a less-than-attractive giggle bubble out of me at inconvenient times (work, where I'm supposed to be the serious boss).  It's little moments like these that I thrive on when I'm feeling so much pain, or so unwell that I don't know how I can do what my family depends on me to do everyday.  I need these dazzles, and every single one that comes my way is a necessary blessing.  That being said, who's to say I can't throw a little dazzle back into the universe too?  So that's my theme for 2012;

Coffee! *giggle*  I got this on Google images "Coffee Art"

Make everyday Dazzle with Awesome (even the bad days!).

Live courageously, love generously, smile honestly & work intelligently; protect myself only from what truly needs protection against 

& embrace whatever good or whatever hurt that may come with the rest.

Some goals I plan to accomplish with this theme in mind are:

• Participate in more of my company's philanthropic events when I am able: There is at least one every 6 weeks or so; it's something I've wanted to do as both a great opportunity to build memories with my family as well as team-building activity for my employees while doing something necessary & important for others.  Everyone wins!

• Scrapbook with my kids. This is NOT an activity I find enjoyable, nor is it something I have ever done willingly, however my kids are more & more interested in doing it and they want to do it with me- and who would regret doing THAT(once a month)?

• Continue on the medical journey-taking control of my health: Build a medical team that is willing to help me become & stay healthy with Ehlers-Danlos Syndrome.

Don't worry (all of you biting your nails...reading this blog...get it?  That's funny....ok I think I'm funny), I'm not going to make this blog even more boring with posts of "what I did that was awesome" everyday.  I'll just post the spectacularly awesome dazzle either from universe or from me.

~Kris