Rude Awakening

Something interesting, for lack of better words, happened to me today. 
It's not the first time this happened but never the less caught me by surprise!

I woke up multiple time throughout the night to use the restroom (since I never can fully go into rem sleep, ugh) and the last time I woke up was a rude awakening...

via

As I went to stand up,
KABOOM.

I fell to the ground.

Yes. literally, fell.
No, my leg was not asleep. I did not have it crossed, twisted, or in any weird position.

My left leg just wouldn't work. There was absolutely no feeling & it felt like there was nothing below my waist.





I had to crawl to the bathroom.

Not only did I crawl to the bathroom, but my right leg was weak. It's like I had no strength in the other leg. I had to really try and lift myself up to sit on the toilet seat :/

This happened to me multiple other times within the past five years. It's such a weird feeling, because you feel absolutely nothing. No pins and needles like you do when parts of your body "fall asleep" or anything. I literally just was trying to get out of bed and THUD.

I think the guy living in the apartment under me probably had a rude awakening hearing something heavy crash down on his ceiling. Ha-ha ;)

As for what causes/caused this? I'm not sure...

Could it be due to Dysautonomia or Ehlers-Danlos Syndrome or neither?
I am thinking it could be part of EDS as this has happened to my mother many times as well
...but as all chronic illness lovelies know, the symptoms are endless.

oh, joy!

How are all my friends with chronic illnesses?
I hope everyone is having a lot of "good" days :)

Has anyone experienced this before?
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

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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

Simply Stated Saturday

I was going to blog a little on the frustrations I have been having with blogger lately, but just as ironically enough, just when I was about to post about it...everything is fixed! So this post tells of some other personal frustrations I've been having lately...

(for warning - if you don't want to read my "personal vent session" than ignore what's in between the pink lines!)

::But first::

How am I spending my Saturday night?

My boys and I are just enjoying a lazy Saturday - hitting the sack early, sipping on some herbal tea, listening to the late night birds chirp, and watching good ol' Gilmore Girls :)

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There's been a couple other frustrations that I've been dealing with.
Sometimes having a chronic illness, especially an invisible illness can make you (the sufferer) second guess yourself sometimes. People who suffer from invisible illnesses can be misunderstood a lot of the time because they appear healthy on the outside...
To my readers, I may sound like a normal twenty-two year old girl.
I can hide behind the words and you can't see the struggles that I go through everyday. 

♥ photo credit
Here's the thing.
I have my appointment with my new neurologist this Thursday, and I have been busy gathering all of my records from other doctors and MRI's, CT's, blood work, you name it.
I have waited since JANUARY to see this autonomic neurologist.
Somehow, I put this feeling in my head of "will he understand?" & "do I really need to go?"
I felt for awhile that I was having quite a few good days, that I didn't deserve to see him.
I was thinking to myself that I am healthy (while I knew that I wasn't) -
But, people always tell me "you look so good!" or you must be feeling better, etc...
I am so used to putting up this false-self/allowing people to think that I feel okay, when in reality, I feel like absolute hell on the inside.
As weird as it sounds...I just needed to feel self-validated

I haven't checked my vitals in quite some time
(I got sick of my BP machine & Heart Rate Watch)

Here were my results: Left(resting) Right(standing)

Sometimes my numbers are very high and sometimes low
- (This gave me the validation I needed) -
I hope he can help :) I'm hopefully optimistic

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*******
Here is a quote for the day that I love...

Life is an opportunity, benefit from it. Life is beauty, admire it.
Life is bliss, taste it. Life is a dream, realize it.
Life is a challenge, meet it. Life is a duty, complete it.
Life is a game, play it. Life is a promise, fulfill it.
Life is sorrow, overcome it. Life is a song, sing it.
Life is a struggle, accept it. Life is a tragedy, confront it.
Life is an adventure, dare it. Life is luck, make it.
Life is too precious, do not destroy it. Life is life, fight for it.
-- Mother Teresa

♥photo credit

xoxo

-erinj0

POTS You Can't Bring Me Down...

Dear POTS,
    Although you may have ruined my weekend & caused me to feel ever so crappy for the past few days, you will not take control. You are making it harder, causing more symptoms day after, little by little, but bring it on - I am ready for you now. I can take it. You can't bring me down tonight, I will succeed.

4 1/2 months down.
1 1/2 months till' my appointment.

It can't come soon enough

xoxo
-erinj0

...A Snowy End to Spring Break

What a Saturday...

I am sitting, staring blankly outside my apartment window, just gazing at the snowfall. Yes - that was not a typo, it really is snowing (for 2days in a row might I add) outside, at the end of march when it is officially springtime. 

To think that just three days it was 74 degrees and people had on their flip flops, shorts and were headed out the door to go golfing...

[Day One of Snow]

[Day Two of Snow]

Well, my week long Spring Break is almost over and what have I accomplished?

nothing

Instead of getting ahead on homework, some of which is due on Monday (some even tomorrow), 

I decided to...

-->Lay around and catch up on some television shows that have been saved on my DVR

 [It's SO addicting - I could NEVER imagine living like that]

 [Truthfully, this isn't my favorite show, but I watch it when I am really bored...]

 [Yes, I have watched all the seasons! I just wish Tyra wasn't so obsessed with herself...

I hate seeing pictures of her all over place. The show is about the girls! NOT her!]

 [When I tell people that I watch soap opera's, I get "the look". BUT this is by far my favorite show. I have watched it ever since I can remember. Since I was in day care and they put my napping blanket in front of the television, while they watched Y&R. PLUS my mom has always watched it as well. Gotta love good ol' Young and the Restless.]

[Last but not least, The Real Housewives. I watch all the seasons of housewives, EXCEPT Atlanta and Miami. I am not a fan of those, but all the others I love]

-->Drink excessive amounts of hot cocoa (with extra 'mallows!)

 

PLUS

-->Rent the movie "Love and Other Drugs"

-->Spend $100 dollars at the casino with my mom : )

          ...sadly, the most I won was $24.75

 [This is our FAVORITE game at the casino!]

-->Consume two Dairy Queen blizzards (yes, they are bad for me...I know)

And all the time in between that...

 

-->Was spent being POTSY... 

       Please allow me to vent for a brief minute: While a lot of my friends board planes, pack up their cars and go on some random road trip and make lasting memories during their spring break, I am stuck at home. Why? Because I am the sick girl. It's to the point where no one really even asks anymore because they know the answer and they are tired of it. "Oh, she is always sick...she's won't go or she can't go" PLUS Car rides=no good.

       Am I so selfish that I actually don't mind the snow at this moment. It's not sticking to the cement, not causing trouble for driving, nor making people shovel up its mess. It is just enough to lie perfectly on the grass and trees, to allow for a gorgeous view : ) 

Although my spring break was not as "up to par" as I would like NOR was it the most desirable break that most people would like, I made the best of it none-the-less.

I hope that all of you had something that you could enjoy this past week-

I want to encourage all of you who are sick and feeling ill, that things will get better-

I pray for those who are struggling in hospitals, that they will find answers and head home sooner than later! 

Have a good Saturday everyone

♥ erinj0

I Hate POTS

For warning - This post is a vent session!

I hate that POTS controls your life. I should know that I cannot try and accomplish "too much" in one day, but I'm STILL having a difficult time figuring out what is too much and how much is enough. I have that go- getter type personality and when my body starts shutting down after such minuscule things like returning a book, depositing and check and a quick trip to ONE area in the front of the grocery store - I still get frustrated. I know that the grocery store was probably the killer. 

Who am I to complain about my life when I know that other people are suffering with their diseases/symptoms/syndromes as well. My life has just completely changed. I can't make plans for the night because I'll just have to cancel. Once 4:00 or 5:00 o'clock rolls around, my body is done. Also take note that I didn't even do anything until 1:00pm today. I so badly want to do normal things that I used to. I don't want to lay on my couch all weekend doing nothing. I hate being stuck in my apartment with no energy to even attempt to clean or get anything accomplished. I just sit and look at everything I know I should be doing but physically it is just too demanding. 

I hate that I can feel pretty good one minute and the next feel utterly awful. This is a really hard concept for my friends and people around me to grasp. It's hard for an outsider to really believe that something is wrong - to the person looking in, it sometimes may appear that I may be "faking" because it came on so suddenly. How do you explain so many symptoms that people can't see and do not experience. It can lead a feeling similar to if you had to defend yourself. I hate POTS.

Right now I'm so fatigued, I feel tachy, short of breath, my chest is tight, my legs are throbbing, my head is dizzy, I'm unsteady on my feet and I feel nauseous. I'm sure I'm forgetting more. Oh yeah - my brain is foggy what else is new?

I wish there were more answers for us POTSy patients. I wish they could tell us what caused this to happen. I wished we had more doctors who are knowledgeable and who care. I wish for an answer. I wish for relief. 

I hate POTS.

-erinj0