A crisis in anonymity

  Upon starting this blog, it was important to me to have a form of anonymity; not a lot, just enough to help me to feel free enough to release these inside thoughts of mine and not be concerned with burdening anyone in my "in-person" life with the heaviness of what EDS puts me through.  I'm not sure why I've felt that way, but perhaps it was one of the stages of being able to relate to myself as chronically ill.  I am afraid of others seeing me as ill because I am terrified of seeing myself as ill.  Now, I can't get away from it, I am ill, but it's not as scary or even as bad as I thought.  I can still find love and peace and fun and blessing, so I'm carrying on. This blog isn't completely anonymous; my name is in fact a form of Kris, and I have a lot of friends who call me Kris.  I do not live in the exact city listed, but I live close enough to wish that I lived there :).  My pictures are all real and truly me.  The only real anonymity is that none of my in-person friends or family can find my blog by searching for me, nor are they aware that I even have a blog.  Well, they didn't know until recently.  It's important to note, or remind you, that I am not from this part of the world, so most of those that I love are on Facebook, and that is the medium we keep in touch.  Though people locally can probably see that I am sick, most are polite enough not to ask.
  It all started in late November, when I was getting exponentially sicker by the day.  I was losing weight rapidly and just really going down hill, yet I was determined to get to A-10's Make A Wish trip despite my Dr. telling she did not want me to go. My dear friend- a sister of my heart- Jessica chastised me for not letting people in my life know what I have been going through.  How they could be praying for me, or helping my family in some way if they only knew.  I got very uncomfortable for two reasons; 1; what I described above and 2; because I realized it was only my pride that kept me from doing this, which is pathetic, and that I am keeping myself from growing as a person.  So I wrote the following note on Facebook:

My Jessica is mean

by Kris on Tuesday, November 27, 2012 at 7:27pm ·

So I have this Jessica, and she is one of my most dear friends.  In fact, she is MY Jessica and she loves me a whole lot, and while you'd think the opposite, this love she has for me makes her mean.  Why is she mean???  Well, I'm glad you asked; she is mean because she's making me write a post on Facebook to tell you, my other loved people, that I am sick and need for those who pray to please do so. 
She's so mean!
I don't want to tell you that I'm sick!  I want to tell you how much I love living in Virginia in the Fall with it's bright red & orange leaves all over the trees and yards.  I love how if you drive down a small street at just the right time, you get to drive through a cool leaf swirly (that's only happened to me once, but it was SO COOL!).  I want to tell you how proud I am of my M-girl for making the Vice Principal's list, which is no easy feat while being in the GATE program in the 7th grade.  I want to tell you how happy and beautifully A-girl is growing and how proud I am of how much of a warrior she is over her own health, educational and social struggles.  I want to tell you how blessed I am that my 8 year old Man-Cub still calls me his beautiful Mama, and loves to snuggle with me and still has the sweetest little voice you ever did hear.  I want to tell you how excited I am that I get to have that just-like-heaven feeling of watching my kids smile with delighted eyes for 7 days straight during A's Make-A-Wish trip starting this Saturday!
We all have stuff; life is hard.  Mine certainly is not the hardest; I consider myself one of the luckiest people alive.  It's because of that, that I haven't put a wholoe lot out on Facebook about being sick, because being sick hasn't taken away any of my blessings, and let's face it- it's way more fun to think on and talk about our blessings than it is to talk about illness.  However, I am here, obeying My Jessica and telling you that I could use some prayer & good thoughts (because she's mean).   Alot of you know that I have degenerative connective tissue disorder called Ehlers Danlos Syndrome (EDS) Types III & IV (also calleld Classical & Vascular types- you can learn more at www.ednf.org) which causes the body to have a lot of different problems since a lot of our body is made up of connective tissue- including our GI tract; thus my need for prayer.  I have been having trouble with food sensitivities for the last few years and have not been able to tolerate any solid food at all for nearly a month.  After more testing, I was diagnosed on Monday with gastroparesis- where the stomach is essentially paralyzed and it's probable that the same issue is in my intestines.  Try as I might I am at a point where I am barely able to get any calories or other nutrition into my body and my size 2 jeans are falling off my 5'8" frame.  I would really like to get better; my life is revolving around feeling like I'm about to be sick, or pass out, or fall over, or burst wide open.  I would LIKE to just be better quietly, without any attention being put on me over it.  I would LIKE to just quietly rejoice in eating sushi and sleeping all night without waking up from pain or sickness.  MY JESSICA, however reminded me that God didn't make us that way.  We were made to be-friend each other, and love each other, and pray for each other.  Frick'n Jessica.
So here I go: please pray for me. Please pray that I will get better, and that I will be able to enjoy Anika's Make-A-Wish trip without any trips to the hospital (for any of us!), that I will be able to get nutrition and feel good enough to enjoy these wonderful memories that we are about to make.  Please also pray that my Dr.here will be able to get me in to see Dr. Levy, an EDS specialist at Johns Hopkins soon enough.  Please pray that my family will be proud of how I am trying to be brave and strong, when I don't feel strong and I don't always feel brave.  Lastly, pray for blessings on My Jessica, because I love her way a lot, even when she's mean.

I could not have anticipated the responses I received from this note; so many people who I know and love, but live across the country (where I am from) had no idea.  39 comments by people who love me, want health and good things for me, and even thanked me for sharing.  Now since I've been in the hospital, they all want to know what's what.  So, I am taking the leap from anonymity into  sharing my life.  This scares me, but at the same time this falls right in line with living my life wide open the way I want to.  So I'm going to do it.

In order to do it; I've decided I needed to change somethings about the way I blog.  One small change ncludes a slight tweak to the name in order to not confuse things with a certain Disney Movie.  Most other changes are just to keep myself accountable to what & who I want to be.  I want to blog positively about my life, not just my illness- but as it touches every aspect of my life, it will be there.  I want to inform, but most importantly I want to stay true to my goal of showing others that living with a condition like this; losing abilities, getting sicker and sicker, does not mean that life is nothing but gloom and doom.  Life has much to offer despite  unsavory circumstances; I feel that in many ways we wouldn't even have the opportunity to know that if we didn't experience those circumstances in the first place.  I AM one of the luckiest people I know!

When the new blog is ready to go live, I will post the address and personally invite those who have commented on this blog to go to the new one.  I truly hope you will follow me.  Please comment on this post if you'd like to make sure you get invited.

Be well, Be blessed, Be happy Dear Blog,
 All my love,
 Kris

FLARE

I haven't talked much about flares.  I've always just explained what I would consider baseline life; the pain that is "usual"..."average".  Being that I am still able to remember what life was like when I had more pain-free moments than pain-full, I can equate my baseline over the last year to be like the ache & pain a typical person might get during their worst flu; It's always there, some movements or moments bring on a larger, gripping pain- a crescendo- screaming a piercing vibrato that ebbs and flows through out the day, with that same nagging flu pain keeping a constant tempo in the background throughout the body.  That's life, I can manage it with diet, rest, exercise, etc and internal strength.   A flare, however, is like fire and brimstone within every joint and connection of muscle & tendon onto bone.  It's sears deep into my sinews where no hand can massage and radiates there, migrating every which way.  A lot of things can bring on a flare; gluten, dairy, high fat anything, stressed, too much activity, too little activity, heat, cold and of course, nothing.  This current flare looks to be brought to me by most of the above, namely stress, too much activity, extreme heat and stress (I could say it again, but you get what I mean) and it's all been going on for several weeks, which is probably why it's the worst I can remember feeling.  I feel like it's concentrated in my  every capillary, tendon & marrow and is trying to swell & combust to oblivion.
I hate this feeling- that this pain, this defect running in my every cell, is bigger than me; because my spirit feels so much bigger than this- yet I can't get on top of it.  I keep remembering that this probably won't last forever, and even if it does, than I have other medical options at my disposal that I've been saving for this...I just don't want it to be time yet.  I need more time to be able.
I have a lot going on, a lot I want to share, but first, I am determined to share my trip to California; it was magic & solace & love.  I hope to be back blogging later this week to share.
Until then...I'm trying to break through this.  I have work to do, and I have kids who are looking at me; my body- their future- who I have to show can make it through this too.  If only I could do it for them...

Dragonfly Day

Today is Dragonfly Day; actually the kids call it Joshua day.  Joshua was our second child, our first son. Dragonflies have always reminded me of Joshua because they are big, they are beautiful and they are silent, just like he was the day he was born 11 years ago.  Joshua died just days before he was born due to complications of Ehlers Danlos Syndrome.
I had so many questions after we lost our son. I was an empty-armed mother filled to the brim with grief & heartache.  One day, I was having a rather loud & irreverent internal conversation with God as I looked at the one picture I have of Joshua, when my nephews came tearing into my home. I quickly threw the picture into my Bible for protection from my nephews who have autism. I later hunted through the Bible trying to find where the picture had landed and was completely shocked at where it lay:

"Have I not commanded you?  Be strong and of good courage; do not be afraid, nor be dismayed, for teh LORD your God is with you wherever you go." Joshua 1:9

I am one who has grown to believe that God loves each of us & hates none of us.  I have no proof of God's existence nor can I prove His in-existence.  I my own studies that I will discuss when invited to and my life with the circumstances within that have helped me understand that God loves me through my heart aches, through my body aches & illnesses, and that there is so much more than this painful life.  I believe His Son, Jesus, was the very first Hippie who died & lived again to love everyone & wants everyone to just allow Him to.


I've not posted a lot because I've been traveling back to California.  Below is a video of sometime I spent near Joshua's resting place, it was a sweet & pleasant time to remember that God is with me wherever I go.

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. ♥ :) ♥

~

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. :)

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

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%. 

I GOT IT!  

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

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

:::pop::::slip:::YOUCH!:::meh:::

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.

Inside Thoughts: an evolution

Being the neophyte blogger that I am, I am still exploring & getting to know myself as a putting-myself-out-there-blogger (not something I do very comfortably in my outside life).  I'm noticing now, that this breath-of-fresh-air outlet of mine is taking on a personality of it's own; instead of me telling this blog what I want it to be, my inside thoughts & this blog are evolving into something I don't yet know.  I had originally intended for this blog to be about me & Ehlers Danlos Syndrome; however, I don't let EDS rule my life outside, and so it seems unnatural for it to be the rule of my blog.  EDS is apart of me, and I am apart of it; mathematically, one part of something is just that, and it can't be made whole until all the parts are put together.  My experiences with EDS are important to who I have become; they are part of what have given me a view of life that I feel many people don't have.  If I am truly honest, while I wish my body would just let me LIVE my days without so much struggle, I am thankful for this life-perspective. It's a tangible carpe diem that screams daily into most of my subluxating & dislocating joints, my unpredictable heart rate, body temperature & struggling body.  It is this that helps keep me from disappearing in fear, but instead standing firmly to hold a hand who's most precious loved one is dying, feeling as honored to be there with them as it is to be holding another's hand as they give birth.  It is this perspective that makes me want to experience every moment in between, the good & the bad to it's fullest so that when my time comes I can confidently kiss the world good-bye knowing that I have been good n' loved by those in my life and that they have been good n' loved by me.  
Thus the blog's name change; it fits better to what this blog has become, or perhaps was since my first post.  I am not writing to gain readers, though seeing that it is being read certainly makes me smile :) , I'm writing it for the exact reason above- to let my inside thoughts play.  My inside thoughts use commas too often & they love run-on-hyphenated-sentences.  My inside thoughts love word pictures, silly/punny jokes, and they are not consistently eloquent- if ever.  They are just mine, and they are here.  :)

Blessed Adventure

 An opportunity arose.

  I went.

 

 I ended up lost.

 It was beautiful.

Thankfully (this time), I found my way home before ending up in another state. :)

So Long, Dear Friend

  This is Melanie, she is my friend.  I've known Melanie since I was a kid, which is rare for me since I moved a lot.  In school, we were more friends than acquaintances, but more acquaintances than friends and it wasn't until we were adults that we truly knew each other. 
  Melanie always stuck out; she was a big ball of positive energy all wrapped up in a teeny tiny body.  If she ever made it to 5ft tall I"ll never know because she never seemed all that small to me- and I've been 5'8" since I was in 7th grade!  I remember one day when we were really young (6th grade- maybe?) hanging out at her house and her telling me in her positively matter-of-fact way, that she had leukemia as a baby and that the medicine that saved her just happened to make her small.  I took the information as she gave it to me, and never thought about the magnitude of what it meant until later; as far as I was concerned she had leukemia as a baby and then she didn't- awesome!  As it turned out, at 25 Melanie was to battle breast cancer and win.  A few years later she had a scare with bone cancer, and then last year they found spots on her liver- I think I still have her text on my phone telling me.  Through her illnesses, she went to school and graduated with her Master's Degree to become a Child Life Therapist (one of my favorite kind of therapists!) so that she could help children who are going through what she had and was going through.  She was involved in patient advocacy & support, she participated and even taught Laughter Yoga.  She inspired everyone she met.  She was strong- so strong that she sometimes allowed herself time to let her fight get her down; lick her wounds, regain her energy and get back up again, even stronger.  These were our conversations that inspired me the most; you're only as strong as you you can be, and sometimes you have to rest and let those you trust carry you while you're weak.  I am so thankful & honored & blessed that she trusted me with that.  Melanie fought hard, and I believe she gave cancer a pretty good ass-kicking before peacefully dying last Saturday, October 15th (I'm told with a slight smile on her face.) 
  I have dealt with death before, the tsunamic waves of grief aren't new to me.  What is new to me is this feeling that the world has truly lost a light, and now there is a void in her place.  I am usually able to be relieved for someone who's fight with disease is over; I can be thankful for knowing them and that they are at peace- and I feel guilty because, while I feel that way for her most of the time, sometimes I'd rather have her here. There is now a Melanie-sized hole in my life; I keep almost texting her, our last Words With Friends game is still up on my phone; I'm craving a chat- some Melanie time :).  She is free though, I truly believe that & and I am so so happy for her.  I am also so so thankful for having known her, so grateful to have experienced her friendship; I hope that I always carry the lessons she taught me and pay them forward.

So long Dear Friend, until we meet again...thank you for being you.