Pacer Chick

Don’t get any wrong ideas after reading this. Everything is okay, I was just having some deep thoughts…just not so much Jack Handey style.

I hear/see stories about kids who have passed away, and it makes me think about my childhood, growing up with this illness. Did I ever have thoughts that I was going to die when I was younger? No, because I don’t think the reality of it all really sank in. I think back now…everytime I passed out or had a seizure…there was nothing going on. I was flatlined. Out. Bye bye. But each time, I came back around. To me, that is more than enough proof that I am still here for a reason and that there is more in store for me.

I do remember what it was like laying in the hospital. And looking back, I mean…it seemed normal for me at the time? As weird as that might sound. I remember dad would usually stay the night and help me try to get to sleep because I never could really sleep in there, still can’t. I remember getting cards from my classmates and having them brought in by the school counselor. I remember my grandparents flying from Michigan to Florida (where I lived at the time) as soon as my parents called them and told them I would have to get a pacemaker. I remember my grandma having to homeschool me to help me finish all the homework my teachers had given me to do.

I remember being forced by my doctor to get up and walk around so I could get better and go home BUT I was having allergic reactions to the medication so everytime I would go and walk around, I would throw up and get sick. I remember crying as he had my arm and was walking me around. I remember throwing up on the brand new shirt I had gotten.

I remember having to share a room with at least 5 sick babies and crying because they were crying and I couldn’t sleep.

I remember the tilt tables I had to get and how awful they are and how many times it made me pass out more which made my heart stop more. I remember being scared of going to school or going out aywhere with my family because I didn’t want to get sick in front of people. I remember taking so much medication that I can’t even remmeber which ones I have been on and having to deal with all the side effects. I remember thinking about suicide at age 8! I wish I could have someone to talk to. I know I have my friends and family, but, and it sucks to say this, they just don’t get it.

I don’t really remember what it was like before I had a pacemaker.

I went and had my pacemaker checked on Tuesday and the new cardio clinic at the University of Toledo medical center is really nice! I mean, I still had to wait 400 years to be seen, but still, its very nice looking. Anyways, the technician told me he had good news and bad news and it was that I have 15 months left on the pacemaker. So I am in the good and bad zone. Next year will most likely be when I get the new pacemaker.

I felt all wonky afterward which is understandable considering I just sit there while my heart is slowed down and sped up.

Its funny whenever I get my pacer check because then it does make me think that I have that little box in there. I mean, just the night before I was at the Filmore in Detroit seeing a Plain White Ts and Snow Patrol concert. I was screaming my head off, singing loud to the songs and indulging in the adult beverages that were offered. It just makes me happy that I can still do things I love.

Also, this week is National Invisible Illness Awareness week. In order to raise awareness for Dysautonomia, we are wearing blue ribbons to help raise awareness for this fun filled condition that we all enjoy having (OOZING with sarcasm) My wonderful coworkers are wearing them at the Ellis Library and I of course am sporting one too. If you stop in, please don’t be shy about asking about them! I am more than happy to let you know about what I have.

Ta-ta for now!

I am very sorry for not keeping up with my blog. Life and everything else has been in the way, and that is my only excuse.

I have decided to go back to school. I was debating whether or not to go back and get my degree or just get a second job and move. I figured I have only two semesters left to my BA, so why not finish? I want to be able to say I have a degree.

Oy, I am getting a headache. Let you know how school goes tomorrow.

Good to be back!

I will admit, I am a pretty strong person. I don’t so much mean physically as mentally/emotionally. I found it very interesting this past two weeks that I had been sick with a cold and feeling like I got hit by a bus, but still part of me was like GO GO GO!

I have all these things I want to do, but sometimes it just feels like my body is on its own schedule. I can’t go out late because I won’t get enough sleep and will be sick in the morning. I can’t go in the middle of a crowd at a concert because my body will be to clustered in. I can’t do this because of that, or that because of this. Now, this may sound a bit melodramatic, but I think of the quote from Steel Magnolias when Sally Field’s character says “I can jog to (I forgot where) and back, but my daughter can’t!” It can feel like that sometimes, I want to do so much but my body is just “I don’t think so Jessica.” It can be a tad frustrating.

I am feeling better now though thank goodness! Preparing to go to California in May. Need all my strength for that! I don’t care if I get sick and I have to be wheeled around in a chair…I will be going. Just TRY and stop me!

So…I woke up with a bit of a stuffed up nose. Didn’t think much about it. Figured it was because it had gotten colder. But now I am on my lunch break and ready to either hit the deck or puke everywhere. Hmmm. Which do I prefer?

I usually only get “people sick” once a year, and when I do…I really do. So, I am hoping this is just like a one day thing because I really do hate being sick.

Yuck yuck yuck!

Beginning of the New Year. For me, thank God!

I know it has been awhile since I have written, but I don’t think people need to read about the same stuff happening to me everyday. I deal with my heart problem everyday. Sometimes its bad, sometimes its good. I just deal with it because thats just what I have to do.

This new year already feels like a new beginning in my head. I don’t know what I am going to do about school and whatnot. And I know I want to move to California, but I think now it feels a little scary because its going to be a huge life change. So..I don’t know. One day at a time.

If I may, I would like to reccomend a book. “The Hour I First Believed” by Wally Lamb. Its very good so far, I am about half way into it. It revolves around a fictitious story occuring around Columbine. I reccomend it to people who come into my work because it is very good.

Hope you all had a nice holiday!!

So, I have been sucked up into the mainstream. I LOVED the book “Twilight.” I wasn’t going to read it because its a vampire book, and I don’t read those type of books. But, a lot of us girls at work figured we should read it because its so incredibly popular. I mean, there are 90 some requests for the first book alone!

I don’t think I have ever read a book, and then wanted to re-read it again and again. It is so intense! That is the best word I can use to describe it. Intense. Beyond intense. I mean, if I am reading a book and there are scenes where literally my breath is taken…its incredible. I have told my friends they may need to smack me because I am getting caught up in the hysteria. Wow…just a great book. I am waiting for the next one to come in for me, but I think I am number 20 something in line. Grrrr…

I would be a vampire if I could be with Edward Cullen. In a heart beat. It would rather weird though with a heart condition and a pacemaker. I mean…no sleep, no eating, drinking blood…all things that aren’t really high on the list of good things for a person with NCS. On the other hand, I would be the living dead so it wouldn’t matter.

Read the book even if its not your type of genre. Its amazing.

Oh my gosh…I am so completely over school!! I am sick of sitting in class and listening to people discuss things that are so ridiculous! We interpret poetry in class and some of the poems are so EXPLICIT and it is uncomfortable, and apparently its my own fault because I am not “comfortable” reading that in class. I’m sorry, I am a bit off the wall, but you know…I don’t really know these people yet.

And now they are talking about the “Twilight” book series and how its showing abuse and all this other stuff. IT’S A BOOK ABOUT VAMPIRES!!!!!!!!!!!!!!!!! FOR TEENS!!!!!!!!!!!!!!!!!!!!! STOP ripping stuff apart and just let it be!!! My God, this stuff really plays on my mind and body because I hate having to come to class and listening to this crap!!

Ugh!!! Anyways…hello! I gotta vent somewhere. I am reading the book and am not looking too deeply into it. I don’t want to analyze the book, I just want to read it. UGH!!!

• prolonged standing or upright sitting, particularly when standing with legs in a locked position for long periods of time. Avoidance of long-term locking of one’s legs in the standing position is taught in the military, as well as marching band and drill team.
• stress
• any painful or unpleasant stimuli, such as
  • giving a blood donation or watching someone give one
  • watching someone experience pain
  • watching/experiencing medical procedures
  • sight of blood
  • occasions of slight discomfort, such as dental and eye examinations
• hyperthermia, a prolonged exposure to heat
• sudden onset of extreme emotions
• hunger
• nausea or vomiting
• dehydration
• urination (’micturition syncope‘) or defecation (’defecation syncope’)
• abdominal straining or ‘bearing down’ (as in defecation)
• swallowing (’swallowing syncope’) or coughing (’cough syncope’)
• random onsets due to nerve malfunctions
• pressing upon certain places on the throat, sinuses, and eyes
• high altitude
• use of certain drugs that affect blood pressure, such as amphetamine
• intense laughter^[2]

I just found this on Wikipedia. I am always interested in seeing what other people have to say about NCS. Because some of it is kinda funny. I personally have never gotten sick or passed out from laughing “intensely” thank goodness!! I would be screwed if that was the case! And pressing upon the eyes? Yes…while laying in bed, I push my thumbs into my eyes for fun…really???

Anyways…I thought those were interesting enough to share. Which ones are YOUR triggers??

So, my dear mum just informed me that she read an article in Associated Press that headphones can interfere with pacemakers…great…So let’s see, I am not safe against microwaves, iPods, rollercoasters and now headphones. They might as well just print “Macaroni and cheese and Dr. Pepper will kill you if you have a pacemaker.” Take all the joy out of life! (I am being slightly over dramatic mind you) I read the article and they said the magnets in the headphones could interupt the electric impulses the pacemaker gives off if they are held within an inch of the pacemaker. Well, considering I don’t listen to my iPod with my headphones planted against my chest, I think I will be okay.

I started that diet my dad wanted to put me on. Wow, thats been fun. You have to stick to this eating schedule, and it was really hard to follow when I had class. I almost passed out in one of my classes, not good. Oh wait…not pass out. I don’t do that much anymore, it would be puke everywhere. I would take passing out over puking in front of classmates anyday. I made it through though. I have a lost a bit of weight, not overnight like I keep imagining, but oh well.

Okay, I should go and venture out into the freezing cold again. See ya!!