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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, December 29, 2011

Trip around the Sun

I'm 33 years old today.

I am pleased with  my success in my goal to, one of these days, become old.  :)

This was by far, NOT my most graceful orbital journey, but it's been made and ended well.  At the start, I was still a pretty emotional wreck from being forced to begin my daily trek from my most favorite job, as a stay at home mom, to the one away from home- which isn't a bad job- just not my most favorite.  On this end of the trip, I'm more confident in my steps and in my place on this earth, my kids have survived more courageous and more confident as well- so I guess I'm jugging both jobs satisfactorily- thank God.  

On to the next trip; I pray that this one is a bit more blessed; more smiles, more laughter, more love. 
My Dear Friend sent me a pack of Garbage Pail Kids!  Happy Birthday to me! 

Saturday, December 24, 2011

A Single step....updated

:::::I have been writing this update for 4 days.  With the constant run of upper respiratory infections I've been  apparently entertaining (since it's either the same one that won't leave, or a carousel of it's friends- yes, I personify almost everything) in my too-small-to-entertain-head and work time fighting with my holiday-celebrating-family time it's been nearly impossible to get this blog out.  It's not for a lack of trying though, and so I persevere::::::

I. am. amazed.

My appointment came & went on December 21st.  I was thankfully so busy that day, I didn't feel nervous like I thought I would.  I had just come from Daughter-9's Class Holiday Party after semi-sneaking away from an incredibly busy day at work; filling out the new-patient medical forms was being juggled with working from my blackberry. I proactively took copious notes the night before of everything I wanted to go over with the Dr. so all I had to do was go through the motions of the day (and fill out those damn forms).  For once my anti-anxiety techniques paid off!
The fairly new medical office was nice, clean and comfortably decorated (meaning, it wasn't dusty or cluttered and didn't have that feeling of being decorated my Grandma).  The staff was all very nice & they really put me at ease; already a huge difference from my previous experiences.  Once in my room, I spoke with the intake nurse at length as to why I was there.  She was very interested in knowing what EDS was and after I explained what it is and how it effects me (in small detail), she was shocked at how much pain I must be in (I was shocked that she had really listened to what I was saying and correctly realized how painful it is).  I told her that I am, but that I am not looking for pain meds (I'm always afraid of being perceived as a med-seeker), I'm looking for a Dr. who is willing to help me become healthy.  Her facial expression was open, soft & kind- was she understanding me? wow.
  After a few moments (enough time to respond to 3 more work emails-> next year, nobody takes a holiday vacation but ME!), the Dr. came in.  We introduced ourselves & shook hands.  She looks to be around my age; very warm and polite. She sat at her desk in front of her computer, and I sat at the chair facing her; I explained again why I was there, and what I am looking for.  She was familiar with the term Ehlers-Danlos Syndrome, but new very little about it.  I told her what I know - which is a lot.  When she asked specifically how I am effected, I pulled out my list of what I deal with daily.  Usually, when the list comes out is when whatever Dr. is before me starts noticing the time.  In this case however,  asked follow up questions with each item, wrote notes & looked them up on her computer. WOW! After I was done with my list, I felt like a deflated balloon- I guess I had never had the opportunity to go through the whole thing, and at the end I realized that it is REALLY overwhelming!  The Dr. was finishing up her notes and then asked what on my list was most worrying me, as far as starting with getting things checked out.  Wha? We both agreed that I am a few years late on my next cardiology work up (my heart & I have a dark sordid past stemming from a huge fight we had when I was 10 days old and it tried to walk out on me), and I obviously need to see the GI Specialist.  She also feels that a Rheumatologist would best fit the rest of my EDS needs as far as knowing what other specialists & treatments I may need.  I am going to see this Dr. every month until all of my specialists are lined up and my care is in place.  I already have an appt. to see the GI specialist on January 6.  I can't believe how well this appointment went!  I can only pray that the specialists she's referring me to take me as seriously as she did.  
*whew! done!*

Tuesday, December 20, 2011

a single step

Tomorrow is the day I consult with the new General Practice Dr.  I'm not as nervous as I thought I would be, but I'm not exactly hopeful either.  The way healthcare is set up here, all practices are connected; if you see one Dr., all Dr's can look you up in the network; I can see this being an advantage if you're currently being treated by a Dr. you trust.  I, however, am not.  My only experience with seeing a GP in this area was with a Dr. of Osteopathy (D.O.) who happened to have met & my daughter after her last GI surgery; she was in her wheelchair and hooked up to her feeding pump on a 24 hour continuous feed (she has a permanent g-tube), she'd also been in & out of the hospital for several weeks and I was naturally, exhausted- the D.O. perceived that I must be depressed- and nothing could change her mind....not very D.O. of her.  The next time I saw her was when my own GI problems started- she wanted me to take anti-depressents.  I asked her how that would help me with my symptoms and she told me that I was probably "just overwhelmed".  I explained that I know the difference between overwhelmed & feeling ill; I have been my daughter's only care provider since her birth and I am quite adept at not only caring for all of her needs, but also being her advocate and the educator for her medical care team.  It was the 3rd time I had seen this Dr. and it was 2 years after I was diagnosed with EDS, so I asked her if she had researched Ehlers-Danlos Syndrome yet....silence.  *sigh*So, I am off to see this Dr. tomorrow how will have more than likely seen notes about me from the previous "D.O.", may more may not have a pre-concieved idea of me, and there is nothing I can do about that.  I can, however, determine how I will present myself tomorrow.  I plan to simply to introduce myself and explain my history & my diagnosis. I will explain that I am mostly self-educated on my syndrome, and it effects me pretty severely according to my Geneticist <name drop here>. I will then ask if she has ever heard of Ehlers-Danlos Syndrome and whether she has or hasn't,if she is willing to research it and help me to build a medical team.  If she is not willing, I will ask if she will refer me to someone who she thinks might be.  If she is willing, I will ask her for the next step.

Saturday, December 17, 2011

Early Christmas Gift

I got an early Christmas present yesterday; and it's a biggie.  I've been praying for it, but not actually expecting it, because it was a long shot.....AND I GOT IT!!!
Let me back up: I work for a fantastic company; I really believe in what it does and the approach that it takes to do it.  I also believe that it is one of the, if not THE last American company who takes care of it's employees who work hard to be taken care of.  We get free turkey's and a bottle of wine at Thanksgiving, there is an elegant annual Banquet in the Winter, we get good health & retirement benefits as well as a 3% annual salary increase for those who prove their worth (which is considered "average" for a salary increase in the US).  My history with the company is that I started out as a receptionist & and I am now a supervisor under the Facilities Director at the corporate office.  While my hiring salary was a raise from my receptionist salary, it was still extremely low because of my lack of experience (having been a stay at home mom for 10 years before that).  I work my arse off, because I feel like that's what one should do when employed, it's a work ethic I was raised with and I'm raising my kids the same.  I'm up for review and my Director is beyond pleased with my performance, so pleased that he recommend at 10% salary increase (unheard of) based on the amount of work I am excelling at & the salary I am currently getting (because they assumed I would be able to hack it as I have?). NOBODY gets more than a 3% salary increase and I don't mind saying that I deserve 10%. 
This means, that when this goes into effect, we (my family) will have a working budget for the first time since The Husband lost his job in June 2010 (well we ran out of money in October 2010).  We will be able to pay all of our bills (which we HAVE been paying in full & on time by cutting everything we possibly can else out- groceries, I've gone without countless meals so the kids can eat, etc.) while feeding the children AND ourselves at the same time! We can fill the car with gas when it runs out and turn the heat on (not excessively mind you, lol).  We can't save anything yet, and I still can't buy any clothes that fit (though maybe being able to buy more of the food I am able to eat, I'll gain some weight back), but I don't care because we've finally made it to the next stepping stone....after so much hard work. 
The next stepping stone is for the Husband to get a full teaching contract, which probably won't happen until next Fall.  Until then, I am satisfied that my hard work is finally paying off.  

So to celebrate, here are some Christmas songs that make me smile :)

I love these guys!

This is my most favorite Christmas song

Wednesday, December 14, 2011


It turns out my icky-not-feeling-good feeling was the beginning of a bug; I still feel like poo...and the structure, or lack of in this blog post will probably show it.

You ever put something off for no good reason except you just REALLY DIDN'T WANNA DO it?
This elusive something that is not especially difficult physically or even mentally, but for some reason the thought of doing it STRESSES you out so much that you have already decided you're not going to do it today before the thought has finished materializing in your mind?  
I've noticed when I am extraordinarily stressed-out (like being sick on top of having a chronic illness & pain, while still having to work as if you're not & make tasty preparations for the holiday's festivities for all of the kid's functions & help them get over the triumph/loss over a pair of our favorite furry foster pets getting adopted), the smallest, silliest & easiest things feel like a HUGE mountain standing before me, blocking out everything pleasant in my view.  There are 2 different tasks that I've been putting because of these very reasons, and for some reason, it took getting sick (just another added stressor) for me to finally say f@%$-it and just get it done:
#1 Mailing in my insurance claim forms for a car accident I was in last August which caused horrendously painful whiplash (not sure if it's anymore painful from anyone else's whiplash- but having never had a problem with pain in my neck/back- I've been appalled by how painful it is) car damage and BILLS for which I should be reimbursed since I was rear-ended by an person talking on their mobile and not noticing the cute little Volkswagen in front of her.  I hope her insurance company doesn't give me any trouble, I just want to be paid back what I had  to pay.
#2 Is to just throw a dart and make an appointment with a new GP- ANY GP just to get my search going again.  This is certainly the most daunting to nearly everything on my to-do list, but it's also one of the more crucial tasks that I accomplish; I've been putting off for a year.  That's right, 1 year.   That is just how bad all of the previous Dr.' s I've tried have been- I hate it.  It's just too easy to find something else important to do instead of this; like making sure my kids are up to day on all of their appointments, etc.  My husband said something to me on our anniversary that changed my mind, something unexpected because we've had such a rough go of live for the last 18 months (since he lost his job & was forced to leave home, where I had been for 10 years and into the work force as the family bread winner) and also in our marriage; it turns out, he's terrified of my death.  I had no idea (I know that sounds silly), I really didn't have a clue.  I really only express about 20% of what EDS does to me to the people closest to me in life because I don't want to overwhelm or over burden them, apparently that hasn't worked on my husband.  Suddenly, because it's for him, finding a Dr. to make an appointment with didn't seem so hard.  Let's see how I feel next week when it's time to actually GO to my first consult.  Ugh.  I love my husband.

So I did both.  My anxiety over next week's new Dr. appt. is at an okay level right now, but that will probably change...I hate everything about being in a Dr's office/hospital- the needle sticks are the easy part for me; I hate having to explain my EDS to someone who may or may not care- it sucks ass.

I really hope this bug doesn't fully get me down, I feel pretty wretched, but with my Office holiday party on Friday, kid's holiday concerts everywhere I see, and our Furry Foster Pooches being adopted tomorrow and EDS's every-day antics, I just don't have the time or the energy.  Fa-la-la-la *cough* la-la-la *wheeze*

Sunday, December 11, 2011

As this is my place where I can say what I think I can't say in the real world...


I'm frustrated & annoyed this morning.  I really just don't feel well....since yesterday afternoon.   It's completely stupid because it feels like it could be/probably is something as simple as a bad case of indigestion; yet I've hardly eaten a thing...and I've certainly not eaten anything that would normally cause this distress for 20+ hours...ugh.  I hate this....

::::back to trying to have a good attitude::::

Saturday, December 10, 2011

I am up on this cold, cold morning...thankful that I am able to lay in my warm bed a while instead of getting up for work....ah...first gift of the day...
Adding more clothes on top of my pajamas
I trudge out to the kitchen for a cup of hot coffee, already made by Husband & waiting for me in the pot.....sweet gift.
The kids are all up & quietly going about their activities.....so nice now that they are older.... :)
 ::::creak:::::ache::::POP!:::ooh-need to be careful of that joint this morning::::gasp::::eek....chair...ahhhhhh
So here I sit.
I'm thinking a bowl of hot, freshly made oatmeal w/ honey & walnuts is in order...however this busy week has resulted in a kitchen filled with dirty dishes; no clean pot, nor even space on the stove.  Aching hips have decided that coffee will suffice for now.

Perhaps a bit more sharing time is in order this morning: 
<3 I have a family <3
 My husband and I celebrated our 12th Anniversary last weekend by taking everyone to see Arthur Christmas- it was a great movie (said by someone who is a pretty staunch critic of kid-movies).  It was nice to do something fun & silly with the kids as a celebration of our 12th & most difficult year of marriage so far.  Together, we have been blessed to have had 4 children; 2 girls & 2 boys. They all have EDS too in various degrees; 
M-11, our first daughter, has classical hyper-mobility & no other symptoms; she is "gifted", artistic, insightful & loving- and could, I bias-ly believe, find a cure for EDS if she wasn't so terrified at the sight of blood, sickness or hospitals (because of how often she's been forced to watch her siblings go through terrible hospital stays)- so she will just make some other amazing mark on the world.  She carries the burden of being "the healthy child" and yearns for a friend with the same lot in life.
Baby-J, our first son came next.  He died a few days prior to his birth from spontaneous vascular rupture= we now know as EDS; so I don't yet know his personality, but I miss him terribly.  We were told his death was a fluke & so his vascular rupture was ruled "idiopathic" (they don't know what happened).  
A-9, our second daughter, is a bit more complex; she was born prematurely and has mild cerebral palsy as a result- which seems to exasperate the effects of EDS and vice verse.  She has been in & out of the hospital her entire life and has endured many surgeries, complications and has many attachments.  She is also very smart (honor roll), however her intellectual intelligence over powers her emotional intelligence- which makes social environments complicated.  She is a spitfire- so watch out for that one.
C-7, our second son, came last.  He was born right at the margin of premature/full term which was a blessing (since he came so quickly, I was still in my car- funniest story ever, I'll have to remember to tell that one).  He was completely healthy until he was 15 months old and has been hospitalized for a mysterious illnesses since then, though no surgeries other than the normal childhood tonsillectomy.  His biggest illness was when he was 5; he nearly died before my eyes of ITP, or Idiopathic (God, how I hate that word) Thrombocytopenic Purpura = his own immune system was killing off all of his platelets.  Since then, he is still sickly, small and seems to suffer from chronic fatigue.  There are no studies relating Immune Deficiency to EDS, but since the spleen is made out of a different type, but still connective tissue, it would be hard to convince me otherwise.  He is a sensitive soul, a thinker, loves puzzles & building things, hates hate and sadness & is burdened when he see's or hears of it going on in the world.
With all that we have on our plate, it won't surprise you to know that I was a stay at home Mom for 10 blissful years & 4 months; they were blissful, but not boring.  Husband lost his job in June 2010, I started back to work that Sept. and life has been alien since.
Dealing with my EDS as a working mother is almost an oxymoron at this point.  I have no choice but to do what I can do.

So that, is as they say, that.

Me & Husband the day before our 12th Anniversary; we are nerdly love
A-9 resting with our current Furry Foster Friends (we foster dogs for a local dog rescue)

Husband helping C-7 place the Christmas star

C-7 & M-11 last weekend at the Christmas Parade

My Hearts & me; layered up and ready for a parade.

Wednesday, December 7, 2011

Christmas is here;  I love; L-O-V-E Christmas!
It doesn't feel all the way here yet though....it's getting there.
 I baked cookies to try to get into the mood- it helped- my loved ones & co-workers were happy to gobble them up- which makes me smile :)
I made a story line with the gingerbread men, who were slowly realizing that they were also just a statistic of all the other gingerbread men.  They also weren't too sure about the snowmen, and were pretty sure they were all wearing the same disguise.....hey- I can't actually eat any of these cookies- my entertainment must come from SOMEWHERE!

BTW- I kept getting amazing compliments on the cookies and how did I find the time to make them from scratch, etc.- these are pillsbury sugar & gingerbread cookies; decorated while sitting on my arm chair- and I was STILL utterly exhuasted when I was done! Perhaps everyone was just being nice (it was nice), but if they could have seen me in my arm chair with heating pads all over my joints- LOL!