A not so typical friday

Oh what a day!

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Today was my ARS(Autonomic Reflex Screen) testing! 

I was there for two and half hours.

Here is my breakdown of the day...




First, it started off pretty painful. I had a NCV(nerve conduction velocity) test, where they sent electrical shocks through individual nerves :/ Yeah, it was just like sounds, painful. I cried.
Get this, while your laying on the bed, they have tissue boxes pinned to wall, so you can reach them. The guy doing my test said, "I'm sorry, I tend to make girls cry". Ha-ha, he sure made me laugh and got me through it.

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 ...and I can get through anything...even the toughest times!

Next, I had some small fiber neuropathy testing done on my feet. I had sensations like cold, heat, and vibrations that I had to detect. Luckily, it wasn't painful and pretty simple :)


After that, I was moved to the tilt table and had sweat testing, where they suctioned these quarter sized plastic doo-dad's to my arm and leg. Boy, that little sucker (no pun intended! ha) sure left a mark and kind of hurt! Then I had breathing tests, you name it... the list goes on! After the little tests were done that lasted about 40 minutes, I began the tilt. Blah - it wasn't fun. Even though I was officially diagnosed with POTS over a year ago, my autonomic neurologist wanted to do his own testing. Grrreat, just set off my symptoms...thanks :)

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Of course, it was a positive tilt. 

Heart rate lying =49bpm 

and

Heart rate standing(raised)=140bpm. 

Lastly...finally, ALMOST done. I have the EMG :/ Ugh, beware if you ever have this test, it isn't pleasant. What is it you may ask. Well, the doctor stick needles into your muscles (in you feet, legs, hips and back) and then get this...he moves them around!!!! He said I would be sore for awhile, and he was right. Ow Charlie!



Despite the long day, it is now over :) 
Tomorrow my man and I have a date planned!

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Around noon, we are going to see Harry Potter at a theater where you dine and eat, it's pretty fabulous if you haven't tried it before! I'm super stoked...

...and always remember to never let your weaknesses stand in your way

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xoxo

-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 :(

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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

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. 

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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

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xoxo

-erinj0

I Hate the Heat...& the Heat HATES me : /

 Welp, it's the first official day of summer. 

As for summer, I mean the spring semester is totally finished

...all the grades are reported and books returned. 

I should be excited right? It's like a catch 22 - Excited school is over, but the actual temperature and the heat of summer is just dreadful to think about.

...Sort of anticlimatic


The summer time brings about many things in this dear old life of mine that I just do not like. It is like a vicious circle that I know will not turn out well. (Oh lordy, am I being positive or what) ha.

Heat=Tachycardia

Tachycardia=Fatigue

Fatigue=Brain Fog

Brain Fog=Homework/School Trouble

Homework/School Trouble=...you get the picture!

Sometimes I think I overdue to. I try to do too much or I go out for too long. I need to learn when is enough, but how will I every know? Will I ever learn... I don't know.

Story Time!

 *So, my gram calls me up last week and proceeds to ask how I am doing and start the typical grandma chit chat "so, how are you doing Erin? Feeling good today?" blah blah blah, the typical grandma conversations - After all of that, she then proceeds to ask if I could drive her to the weekly Wednesday organ class that she attends, with all her lady friends. (She knew that I had nothing to do, I finished my finals early and I would just be sitting at home, twiddling my thumbs staring at the wall) How could I say no? She has been trapped in her apartment for almost a week, as her typical driver has had a family emergency and unable to take her places.

*I pull up promptly on Wednesday around 10:10am. Let me tell you that I have a very low car and watching a ninety-two year old woman get in and out is quite...sad? Ooo, that sounds wrong - but you know what I mean. I ask if I can help get her seat-belt on (ask I typically do on the way to family functions when my mom and I always pick her up) - I definitely shouldn't have asked : / "I can do it, Erin!" she replied harshly, and I quickly backed down...*

*So. we were driving and I asked for clarification to make sure I knew where I was headed. I then said I would just catch the interstate, as it would be the fastest route. "I am in NO hurry!" Don't take the interstate. Well, mistake number one - I took the interstate and the eyes rolled and a "UGGHhHhh" fell out of her mouth. Whooops?*

*Arrival!!!!  As we stop she needs to put in a new hearing aid before she can enter.  I could see she was having difficulties trying get the tiny battery in her little aid with her arthritic fingers. You guessed it, mistake number two, I asked her if I could help. Eeeeeek. I'll just stop there*

*I was about to ask what time she would like me to pick her up. This is the kicker...she was really pulling my leg, playing the old lady card good here! She said..

• Well, you could pick me up after class around noon, if your in hurry - I mean I understand if you have to, but I usually eat lunch with all my friends and it's nice to catch up. 

OR

• I could call you from my cell phone (a "jitterbug" to be exact for people with hearing difficulties that has only a call, yes and no button! toooo cute!) and let you know where I am eating at. This way I could eat with all my friends and this is what I usually do. 

But it's totally up to you, she says. First, let me tell you that I was NEVER going to pick her up early, but man! She totally played those two options pretty well to tug at my heart strings.

*Lastly, as she was getting out of the car, I said "So are you playing today Grandma?" and she chuckles and responds, "Oh no dear, I didn't practice this week! This class is for advanced players and you need to practice!" HaHa ; )

I love being her new Wednesday chauffeur for the month of May!

THINGS THAT WILL MAKE/MADE ME SMILE THIS MONTH

1. STAR JONES GETTING ELIMINATED FROM CELEBRITY APPRENTICE! Finally : ) 
2. The Bachelorette starts this month
3. I renewed my lease & get to stay in my apartment another year
4. My appointment with my neurologist is less than a month away (I've been waiting 6months)
5. I find out where I student teach this month!
6. My family comes in town 
7. My lovely boy graduated from college this past week : )
8. My amazing family  
9. ♥

What made you smile this month?
: ) 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