An invisible life, more visible

http://insidethoughtsofelasticgirl.blogspot.com/

This is the new blog I've created with all of my old posts from this blog onto the new one, the difference being that I was able to edit some :), as I have invited those in my real-world life to be apart of this journey of mine because they have asked to be.   IT's all very scary to me, letting my world know that I'm sick, though it's apparent now. 

My hope is that if you followed me on this blog, you'll follow me to my new blog home.  Please do, or I'd miss you. :)

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

Still here, thank you.

Thank you.
Thank you  nurse K for the medication.   Thank you Mi-mi for cleaning the room while I was gone for that procedure.  Thank you for the new IV.  Thank you for the 3am blood draw. Thank you for helping me clean myself up.  Thank you for not laughing at me when I cried that I just wanted to go home.  Thank you for all of your help today, I hope you have a good evening.  Thank you for all of your help last night, rest well today.  Thank you for your visit.  Thank you for your kind card.  Thank you.

There is something so very personal and humbling and exposed about being in the hospital.  I don't get to do anything by myself, and I feel compelled to thank everyone around me for doing their job.  I hate it.  I could probably have a better attitude about it, but the fact is that I like doing things for myself.  I do not like being this vulnerable, though I'm still very thankful.

I'm still in patient, but I'm springing out for Christmas.  From there I will be monitored closely to see if I'm progressing on the outside with the threat of being re-admitted ever looming.  I have worked very hard with the help of an NJ tube to get nourished while in here, and I will have to work 3x's as hard outside.  I...can't...wait....to....get.....home!

Quick Update

Make-A-Wish made my entire family's dreams come true.  I made it through the trip, but only barely.  We got home late Friday night, but Tuesday afternoon, I was admitted to the hospital where I've been ever since.  Not sure how long I'll be here, but I'll update more thoroughly when I'm feeling better-  I haven't been able to return texts, emails or other messages because I just don't have the energy, can't stop puking, feel so awful....on that note....gotta go.

Quitting wrinkles the soul

You hear these sayings all the time:

"It's always too soon to quit." ~ Norma Vincent Peale

"Age wrinkles the body, quitting wrinkles the soul." ~ Douglas MacArthur

and of course

Last week, my GI Dr. gave up on me.  I've had a rough few weeks; as of today it's been 14 days since I've been able to keep down any solids, and have been living off of about 16oz. of coconut water, and a vegetable or fruit smoothie- if they stay down.  I've lost more than 10 lb during this time, and each trip to the ER (once by ambulance because I passed out) has ruled out gallbladder, liver and any EDS-related vascular scares and ends with the same "Here's some zofran, try to eat and see your GI".  So I did.  What did he say?  He said that it could possibly be gastroparesis...we'll check that, but beyond that, this seems to be what EDS does, and there is no cure.  This translated to me as "I can't help you, I won't figure out how I can help you, or look for someone who CAN help you; just go home and die."  He is obviously fired.

Since then, I have seen my GP, who is worried, but doesn't know what to do- this was 7 days ago.  Since then, I've gotten weaker and weaker; sicker and sicker.  I feel hungry, starving actually, and as soon as I try to drink (have left solids off the menu for now), I am plagued by nausea & vomiting (and I sometimes cannot stop), and if I don't vomit, I have horrible intestinal shooting pains, and it literally feels like they are jumping around in my abdomen!  Yesterday, I called my GP to ask if I could take the zofran more frequently, I'm already on the maximum does every 8 hours, the nurse (my Dr. is out for the holiday until Monday) said I could take it every 6 hours and that there isn't anything she can do until next week.  She is going to try and get me in on Monday.  Since then, I have gone to homeopathy to try and get some nutrients in my body to help me fight.  I have a very large clock ticking away in my head for 2 reasons; reason #2 is that my body obviously cannot continue this way for very much longer, but reason #1 is this:

Make-A-Wish is granting my miracle warrior a wish, and we leave in  10 days!

The above smiling beauty is my Miracle-Warrior smiling with all the excitement she can muster, because she has been granted the wish of her dreams to visit Disney World thanks to the Make A Wish Foundation.  Not only that, that, the Make A Wish Foundation is granting MY wish of creating these wonderfully special memories with my family- my hearts- the reason I will never never never never give up.

Arms wide open

The past 2 years and some months have been full of outward and inward transition; it seems that just as one transition begins to close, another opens right on top of it.  Outwardly, I have gone from a stay at home mother as I had been for 10 1/2 years to a part-time working and then full time+ working Mom.  My elementary school-aged children have grown to the "upper grades" &  Jr. High School.  My full-time Special-Education Teaching husband was confident in all that he was became an unemployed, depressed and angry man who had lost all faith in the career path he had chosen and worked hard to pursue, and again full-time working teacher after 2 years, who still has little faith in this path he is on.  Inwardly, I've gone from physically strong bodied and strong minded, to physically weak; having little control over my day to day abilities.  While still yet very strong minded, I am learning so much about myself, and this life we all share.  At the beginning of this life changing phase of transition, I hated it.  I hated leaving my children to another's care, losing so much control.  I hated having a husband who seemed as though he never truly saw me for who I was, but what I was- never understood that I could do more than raise babies.  I hated how angry he could be and is.  I hated this break down of physical body, and that this is likely what my children will face, and most of all I hated that I couldn't bare this all for them.  After a while, all of that frustration and sadness left me tired, empty, hollow and useless....the opposite of who I want to be.

Today, the transitions continue, but instead of wrapping my arms tightly around my body with my head buried in the center; my arms are wide open, taking each change inward to examine and learn from; to choose to embrace or step away.  Accept and love, or love and let go.  I feel that what I've walked through the last couple of months since I last wrote you, Dear Blog, has helped me to get here- and I am so thankful.

My trip to California, in June was a big deal for 2 reasons;  #1 the point of the trip was to surprise my beloved Grandmother for her 80th birthday.  She had 75 people who love her fly from all over the country to sing Happy Birthday to her:

My Grandma is a wonderful example of love; she has loved me regardless of my choices in life not being what she wanted for me, she has loved me when it seemed like nobody else could or would.  She is full of life and laughter and I would be lucky to be half of what she is ever, let alone at 80 years old. <3

The #2 importance of this trip was that it was sort of a "coming out" opportunity for those who haven't seen me in a few years.  Though I've been diagnosed since 2007, I was not open to discussing my own struggle with EDS until the last year or so largely because it is so physically evident in me now- many of those I love in CA had no idea of what has been happening with my physically and I knew people would probably notice.  I was in a good place and ready for this; it was time.  Telling those that I love, helped me to let go of the burdens that had been leaving me so empty.  Perhaps, without realizing it, the frustrating and anger and fatigue I was carrying around wasn't just a reaction to what was happening under my roof with my job & husband, but perhaps it was carrying this burden of life & pain & death by myself and not trusting those who love me with it.  It was so joyful to see them; my village- I am so blessed!   We hugged & laughed and talked well into the night, and had coffee and shopped thrift stores and visited my beloved Pacific Ocean and we hugged each other good-bye with complete love & peace.

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...