Day of Birth

What nerd spends her birthday blogging?
THIS one.

I couldn't think of a better way to spend my birthday, then by working with dear old first graders (while feeling like hell), visiting my dear old gram and bringing her a good ol' Arby's jamocha shake, spending some quality time with my ma and gram, then driving home to change into my pj's, hope in bed, sip on some ice cold water, and watch a lot of stupid, yet addicting, trashy television all night.

       

Check out these hot ladies that I was blessed to spend my day with...

Hot mom and rockin' gram...yeah

JEALOUS, much?

;)

Not a typical 23 year old birthday, but laying in bed around 8:00pm is my typical day. 

I have actually became quite content with things and my not so typical and rather dull life (at times). While most peopel look at me and wonder how I manage always falling asleep around 9:00pm (yet I can't stay stay asleep more than 2hours at night) or how I like not partying and going out with my friends. To those people, I can say yes, it is very hard and frustrating seeing others going out around you having a gay ol' time while you just sit by and watch. 

but honestly, 

sometimes I actually enjoy my life. 

It's quiet. It can suck (but whose doesn't at times).
But it's my life.
<3

While being sick surely has it's crappy times...more than you know

I have met some freakishly amazing people.

Some who have chronic illnesses and some who don't.

...all are equally important in my life

Special shout out to @Sarah from Sunlight After Rain

and Brooke over at Growing Older, Growing Up?

and to EVERYONE else out there in the blogging world who cares.
Your constant words, comments, encouragement, and all mean the world to me!
Thanks for being a part of my life :)
A great birthday to know that so many people care
<3

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Happy Birthday to me :)

I am SO blessed.

xoxo

erinj0

One of the hardest things

Understanding can be a concept that poses great difficulty for many different reasons.

For me, it's health

One of the hardest things is the "how"

How can I explain my health to others, so they can fully understand what I go through on a day-to-day basis.

This can be relatively difficult when things like definitions just provide them with medical words that are hard to understand and do not always portray an accurate picture.

One of the hardest things is explaining "why"...

WHY

:x: I frequently have to cancel my plans 

:x: I can't be out in the heat for very long

:x: I can't stand without getting sick

:x: You frequently have to come to my place, instead of me going to yours

:x: I can have a fairly good day yet completely exhausted the next

:x: I LOOK healthy on the outside, but am really suffering on the inside

:x: I am the way I am

---------------------------------------------

If you have been a follower for a little while, you know that I struggle with a condition known as POTS or postural orthostatic tachycardia syndrome. This past Friday, I had my long awaited appointment with a geneticist to get "officially" diagnosed with another condition : /

 I finally have a reason for my POTS.
This "reason" is called Ehlers-Danlos Syndrome
...or EDS for short (yes, another acronym!)
**I will explain in a later post how these two are related**

**Click Pictures to Enlarge**

- These are just a couple things I can do -
This is not the Beighton Scale

I scored a 9 out of 9 on the Beighton Scale
*used to help diagnose EDS*

I have always been extremely flexible, but never though much of it when I was younger
I was the kid who had the really long arms, that could bend/contort themselves in odd positions that others just thought was fascinating. Little did I know, it wasn't a good thing. For me, this was normal. My mom possessed the same traits (while not as extreme as mine) but still in itself, I thought it was abnormal if you couldn't do what I could.

****************

.Anyways.
Back to my hardest things...explaining the "hows" and "whys"

The following video is known as "The Spoon Theory" written by Christine Miserandino

Christine has Lupus, but this explanation is a wonderful portrayal for any illness/disease, 

and in my case - EDS and POTS.

If you know anyone struggling with  a chronic illness, I really encourage you to walk this short clip. You will gain a deeper understanding of what they may go through...

If you would like to share "The Spoon Theory" with your friends, family, or anyone you know, click here to download it via text/pdf

I hope everyone is well

♥ erinj0

Hope for Kyli & Dustin♥

I posted last week about a couple named Dustin & Kyli who are in desperate need of medical care and are way over $100,000 in medical debt and cannot afford health care. Also - because of their pre-existing conditions & disability, they are frequently denied health care :(

 -----------------------------------------

Dustin suffers from gastroparesis and is loosing weight at an unhealthy rapid rate & unable to keep food down...he is getting sicker by the minute. He also suffers from a condition known as EDS (Ehlers Danlos Syndrome) which is a defect in your collagen production that causes a multitude of symptoms. 

On top of ALL this, they both suffer from a form of Dysautonomia, known as POTS (Postural Orthostatic Tachycardia Syndrome)

If you would like to help, you can donate or bid on some wonderful items on the fund-raising page here...

"Hope for Kyli & Dustin"

ANY help you all could provide would be greatly appreciated :)

 (As a sufferer of POTS/Dysautonomia & EDS, I know how difficult these conditions can be. I am so blessed to still be covered under my mothers insurance, but due to pre-exisiting conditions that people suffer from, one day, I too will be in outrageous medical debt and only hope that if I was ever caught in a bind, I would have fellow friends that would help me out as well.)

If you do not wish to donate/make a bid
(as I know asking for money is a very difficult thing)...  

I (we) would greatly appreciate it if you could spread the word through a blog post, just to help get the word out! Any form of advertisement would be so incredibly beneficial and extremely appreciated :)

"I am only one, but I am one.  

 I cannot do everything, but I can do something.  

And I will not let what I cannot do interfere with what I can do. "

~Edward Everett Hale

♥

xoxo

-erinj0

For more information on Dustin &

Kyli, please visit their youtube channel