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

Elasti-Girl had a great fall...

It happened.
The one thing that I've been incredibly cautious of every time I go out of the house (and while i'm in the house- but it's easier here).  Sometimes I've wondered if part of the fatigue I feel when I go out is just from trying to be so careful; trying not to fall in public.  Today it not only happened- but it happened BIG, and at work- in front of my boss, our director, a colleague and a member of my staff. 

::::appropriately stunned silence:::::

I was walking out of my office, stopped to say something to my Director when my hip slipped out & down I went- HARD. There I was, sprawled out on the floor, everyone frozen thinking "what the hell just happened?  She was standing and now she's not?!" The intense heat in my face paled in comparison to the intense pain in my right hip, knee & elbow that took the brunt of my fall.  At around now everyone jumped into "action"- well...they all jumped to my aid, trying to figure out what "action" would be helpful. 

(Discomfort was had by all.)

 I was mentally assessing my pain vs. real injury; trying to ultimately figure out if I should get back up, and how. I kept just saying "I'm fine" over and over again.  I put my hip and knee in place and got into a sitting position (thank God I wore my nice trousers today instead of a skirt or dress). Everyone just came toward me, not knowing what to do, asking if I was ok.  I was not ok.  I was in pain and mortified & I didn't know what to do, so I just kept saying "I'm fine."  At one point, everyone was just silent (and of course staring at me with eyes like saucers) and I said a final (perhaps a bit too loudly) "I'm fine!" At that point everyone offered an "Ok if you say so" type of answer and left me to gather myself.  I used the chair my Director brought to me to help me to my feet, hobbled to my car and left (I was in the process of leaving anyway for a long lunch to pick up a sick daughter from school)


So, it happened.  I fell in front of people.  It hurt my already aching body, my  dented pride (which really has not been an issue for me- though this situation certainly reminded me that I have some) and my spirit.  Is this the first?  Is the me beginning to lose my mobility?  

WARNING: Negativity abounds beyond this title

It's been a busy week filled with work projects, kid-concert (so lovely), Dad-arguments, Dr. appointment, distracted sleep & the usual symptoms on top of it all.  Not much time or energy for blogging; not that there is much to say that is very interesting.  I am annoyed at the monotony of it all.  I am here in my chair, body length "massager"/heater-mat-thing vibrating beneath me, huge headphones over my ears trying desperately trying to drown out the overwhelming body pain and nausea screaming inside me with some very loud Baroque Chamber music.
No awesome dazzling today- although, the music is pretty awesome.

Pen-Friends

 I was reading a discussion here a couple of weeks ago on the subject of penpals; if we've ever had one, wouldn't we love to still have one now~> which inevitably turned into 'hey let's pen-pal through snail mail- who's in?!' etc.  The conversation brought be me back to my 6th-grade-self, who had a pen-pal from a then divided Germany named Brigitta. We wrote regularly to each other for nearly a year before the Berlin wall was torn down.  Brigitta was so interesting to me; she would send me erasers that she would call "rubbers" and stickers with German words on them and she would sign off each letter with "Ciao!".  She would ask me what life was like to live so close to Hollywood and what movie stars I had met (none at the time).  We each ignorantly thought that each other's lives were filled with exotic fancy.  I had no idea what was happening in Germany (why didn't I?  I have no idea; I was a good student, so I can only think that I simply wasn't taught), and she had no idea that my life was not what was seen in the movies (well...perhaps a very specific, uninteresting, opaque, shaky independent film that would not interest a 6th grader).  I remember, she asked me to send her a pair of Levi 501's; she said had always dreamed of owning them.  Well, so had I!  She didn't understand why I couldn't send her some (being the rich American that she supposed every american child to be), and I couldn't understand why she would ask me for them (all of my clothes had come from thrift stores, and nobody seemed to give away any 501s in my size).  What a wasted experience, such an important time in our world history, such an opportunity to learn a different perspective through a unique friendship- I just didn't know.  We didn't know.  I never heard from Brigitta again after the wall came down.  I've wondered so often where she is, but I don't even remember her last name, and I didn't keep her letters- what a waste...
  This conversation about modern day pen-pals also made me realize how wasteful I have been with the awesome friendships I have been blessed with even today.  I have a small handful of women who are so close to my heart- we're attached.  We are scattered through-out the country, but that hasn't changed a thing.  Our friendships are nourished through the bond of our history, mixed with emails, Facebook & the occasional visit.  What's wasteful (completely on my part) is that last year I received surprise cards in the mail, filled with colorfully penned words, stickers & even silly songs- for no reason other than they wanted to make me smile.  It did make me smile, and took my breath away and made REALIZE how awesome it is to have gotten to hold a sweet & whimsical example of my friends' love for me.  I've never returned the favor!  I have an opportunity to expound on these beautiful friendship in a whole new, short-but-sweet & DAZZLING way & I'm wasting that!  There are people in the world who would love to have gotten such a thing in the mail, or even to have one friend like these awesome women and I have MORE than one! Eek...that hurt to realize.  It seems that even in our age of anonymous technology; we all still want to connect to each other in tangible ways- and it makes us smile.

I need to make a stop at the the card shop this week. :)

I'm here, but with out much to say

"What you do speaks so loud that I cannot year what you say." 

~ Ralph Waldo Emerson

I feel bound to/by/with my actions, so much so that there is no energy to speak or share a whole lot.  I'm experiencing what I've described in the past as some kind of "flare".  I haven't had one this badly since, I think, last Spring- around the time I stopped eating dairy and gluten.  I go to work, and go home to recover, then go to work again.

  Things are going well at work.  I'm keeping my attitude positive.  The business of my days & my iPod while in my office keep my mind off my body.  My Director & I were talking about health in general (he had a freak- massive heart attack at 33 & survived and has been taking control of his health ever since).  I told him that I have been a wreck since the testing on Friday and he told me that he couldn't tell I had been feeling so badly.  "Good!" I said, "I still have to do what I need to do- you know, life."

 "You're doing a great job", he said.  

That was really nice to hear.

Second Step: G is for Gastro

 I met with my new Gastro-Doc yesterday.  I was a bit more anxious about this appointment as I knew this Dr. was a man; while I don't have screaming panic attacks over this-, my preference is to be naked among strangers with the same parts as me, if I must be naked among strangers at all.  I'm not even going to ask if it's normal that this-of-all-things is what I was anxious about lol.  As I waited in my patient-room,  my door was ajar enough so that I could see who was walking down the halls (this is before all the nakedness), I kept seeing  this big boisterous Dr. walking up & down the hall meeting the patients in every room before mine-eh...anxiety!  Finally a very tall, older man came in and introduced himself with a kind smile & a handshake.  He was authoritative, but his manner was humble & soft- this will do just fine.  (whew)  I answered his questions about what I've been going through over the last 2 years.  He told me he was familiar with Ehlers-Danlos Syndrome, and researched it more before our appointment (my heart skipped just then).  He surprised me by saying that he's not convinced that my Gastro-troubles are related to EDS.  Since I'm adopted, and I don't have any real idea of my genetic history, plus the fact that my children's EDS symptoms are so extreme makes him hesitant to limit our search for answers to proven EDS-related issues.  Right off the bat he says that I've already been tested for what he would have initially (celiac, etc.) and they came back negative.  He's stumped already- I'm noticing a theme here...   However, I have hope in this Dr., he's not ushering me out the door; he's concerned with finding the answer- that in itself is reassuring to me.

The plan, as he explained it to me, is to test in tiers.  Tier 1 is to get base line blood work, a Lactose Intolerance test (to see if I have an actual allergy- which I don't believe I do, or an intolerance-duh) & endoscopy.  Once those results come back, they will either guide us into a specific direction or not- moving us to to Tier 2; more invasive testing. Colonoscopy (whimper), lower GI and he wants to add a full abdominal CT scan because he felt  an "fullness" in a specific spot of my abdomen where I have also been having tenderness (during the naked part) along with whatever tests come up in any new direction from Tier 1. I'm not too concerned about the "fullness" yet, as he said it might just be an organ that is there and can be felt because of my fat/muscle loss- this is what I have been assuming since I started feeling it.  I can also feel my large intestine when my hand is on my abdomen and can feel "stuff" going through it- like a snake that's eaten a mouse- not cute.  I don't at all remember what Tier 3's plan is, but I'm sure I'll know before we get there.  This Dr. plans to consult with other GI specialists in the area as well as contacts he has at Johns Hopkins.  He says that he would eventually like to send me up there as we get closer or further to/from a diagnosis (my attention span allowed me to gather that I'll eventually be going there).  
I went to the lab immediately following and decided to ignorantly go ahead and do the lactose intolerance test (not realizing yet that it was a 4-hour long test- I am once again so thankful to be able to do the fundamentals of my job from my blackberry) since I hadn't eaten yet.  That was interesting!  I drank this gritty stuff that tasted slightly like watered-down Tang; it made me feel queasy & light headed (not sure if it was the "tang" or from not having eaten), which made the nurse nervous (even though I explained that I'm not scary-dizzy, just dizzy) and earned me a comfy recliner to relax in during the 4-hour test in which she drew blood every 20 minutes.  The nurse was very nice & pleasant, I'm still amazed by this- what a difference it makes in these uncomfortable situations.  After the test was over, I had to head into my office, feeling awful, but putting on my professional face.  It sucked.  I got through it by just isolating myself in my office and getting done what needed to be.  I'm so thankful for my understanding Director- he's one in a million.
Today, I feel worse than yesterday; like I have a boulder 3x's my size in my abdomen, I'm exhausted, achy (normal), swollen from head to toe and I have a fat lip (figure that one out for me please!). I'm also much more lax in my spine, I feel my tendons slipping painful back & forth over & under my vertebrae, this is most painful and I'm glad it's not something that happens all the time.  It feels like my actual vertebrae are slipping back & forth (which would kill me, so it's not that lol).  Ugh!  Yay for my big comfy chair!!!!  I'm also relieved it is Saturday; lots of rest on my agenda.  I have a 2 week-long break between appointments, and the next one should not involve testing (just a follow up on the journey with my GP). So, yay for that too.

Not very flattering; but me writing this post & my blessed chair/laptop/giant head phones-so-I-can-hear-my-iPod set up just the same. <3 

~Kris

The Lovers, the Dreamers & Me

I love The Muppet Show, some of my earliest television memories are of putting my ear up against our giant  wooden television set (circa 1972 or so) so that I could hear the songs & watch the show through my peripheral vision.  My favorite Muppets are Rolf & Sam Eagle.  I love Rolf because...well, what's not to love?  He's freak'n hilarious & can play jazz- he might have been my first crush. <3  I know my devotion to Grumpy ol' Sam is an odd choice, but I have a reason that is pretty comical to me now as an adult;  I am Hard of Hearing and have been since birth (I have initial nerve deafness probably due to being given a strong antibiotic as a newborn to treat a serious heart infection called Sub-acute Bacterial Endocarditis which I acquired from a small heart valve defect which is pretty common in EDS, + more deafness due to massive amounts of scar tissue on my ear drum from chronic infections)-this gets relevant right now:  ~>  I can/could hear very little outside of my head, but I DID hear all kinds of low gurgly  sounds within my inner ear all the time, probably fluid from the infections(I can't really explain what is sounds like to hearing people, but other HOH/Deaf people know what I'm talking about) .  Anyway, the sound was about the same tone as Sam Eagles voice, so my brain's effort to make sense of these strange sounds, I used to day dream that Sam Eagle was sitting at his kitchen table with his wife, and they were talking over breakfast.  Yep, I've always been an odd one...  Anyway, in an effort help my children become the true nerds they were breed to be, they've grown up watching The Muppet Show on DVD as well as all of the Muppet movies- because they are pure AWESOME!

Fast forward to now: We have sort of an unspoken/unplanned tradition of go to the movies on our last day of holiday-vacations-at-home.  Since we only go 3 times per year, we try and weed through all the trailers rating which might be theater worthy and which are worth waiting for; to rent, to borrow from the library or wait until it is whittled down to the 75% of the flick that will make it onto television- I promise, it's worth the process.

  Today we finally saw The Muppets. I loved it!    If you've not gone to see it, do, you'll thank me.  This most current movie has risen to be my favorite- no, I am not overselling it; it's just that awesome.

Without giving too much away (there SO MUCH I want to say about this movie!), I'll just show you this one thing; my new favorite song:

I must be a very womanly muppet of a woman. :)

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 

For 2012

May God bless you(us) with a restless discomfort about 

easy answers, half-truths & superficial relationships,

 so that you(we) may seek truth boldly and love deep withing your heart.

My God bless you(us) with holy anger at

injustice, oppression & exploitation of people,

so that you(we) may tirelessly work for justice, freedom & peace among all people.

May God bless you(us) with the gift of tears

 to shed with those who suffer from pain, rejection, starvation or the loss of all that they cherish, 

so that you(we) may reach out your hand to comfort them and transform their pain into joy.

May God bless you(us) with enough foolishness

 to believe that you(we) really can make a difference in this world, 

so that you(we) are able, with God's grace, to do what they claim cannot be done.

Amen.

~Franciscan Blessing