Pacer Chick

I can’t stress enough the importance of not getting overly stressed out. But the problem is, I need to follow my own advice. I preach a lot of noise I know, but I do have some problems doing what I need to be doing, and I admit that. I’m not perfect.

I am 22 years old, going to be 23 in like four weeks and I still let stupid things get to me. What is the point of getting upset over a complete moron who steals your money, uses you, and doesn’t appreciate what a great person you are because you treat him WAYYYYYYY better than he ever deserves to be treated? (Moron was the nicest word I could use here) Why waste your time and energy on someone who doesn’t deserve your friendship? There are billions of people in the world, I’ll find another guy!

Hey…even a chick with a pacemaker has guy problems! I felt a lot better today though. Didn’t feel like I hate a huge rock on my shoulders. After work, one my good friends/coworkers had a birthday party for her boys. It was so cute! She had a pirate theme and the boys were dressed up with bandanas and eye patches and it was so refreshing to go there and be around friends and family. Work and school gets pretty monotonous after awhile, and dealing with adults all day can wear on your nerves…well they can for me sometimes. So being able to go and chill with kids under 10, playing, or watching a movie can just make life seem much lighter. It was a big difference to be with adults at the beginning of the day and then be sitting on the couch with an 8 year old, 3 year old, and 2 year old watching “Pirates of the Caribbean.”

So…thats a brief wrap up of my day/week. Went from stressed out with a migraine, making the days suck to being able to chill with some kids. I guess my point would be that when stuff gets to be too much, TAKE A BREAK!! That is good advice even if you don’t have a freaky heart problem.

And in words of my new tattoo “Just Let It Be…”

One of my favorite shows is “CSI” and I was watching it recently and in one of the episodes they performed a tilt table on a suspect. I was geeked for a minute because I don’t hear about tilt tables unless its from people who have health conditions. Problem is though, it wasn’t performed right! They only tilted the guy up halfway and they did it very slowly. What is the point of that? “Here, we’ll do it slowly just so you feel okay.” No. The point of that evil test is to make you feel as uncomfortable as possible until you pass out to give a good reading. Seeing that made me think of my mom because she gets mad watching movies or tv shows with medical themes when they do things wrong. You would think someone would do some research and try and make the shows as accurate as possible. I mean, they have to know that someone watching will be able to point out the mistakes.

How about we make a movie having to deal with people living with dysautonomia? Just follow the people around on a normal day, and just shake the camera the whole time? The camera work would just look like the “Blair Witch Project.” Oh yeah, and periodically the camera would have to black out of course. Thats how I will start my rise to movie stardom, staring in my own documentary. I mean, who knows me best but me?

And I must brag about this. For awhile, I didn’t think I had anything to look forward too in the near future. But now, I have TWO trips to look forward too!! My best friend Ashley and I are going to Maryland to see Simple Plan in concert, but also while we are there, we are going to Washington D.C. and Arlington National Cemetery. Its been awhile since we have taken a road trip together, so it will be fun. And then, most likely later in May or June, I am going to California! I am very much looking forward to that!!

Alright, life is good for right now.

I can’t seem to say it enough. I pretty much think of myself as a freak when it comes to all the medical mishaps that seem to happen to me. A new thing I have uncovered has to do with the difficulty of swallowing. For as long as I can remember, I have swallowed drinks like a moron. I hold it in my mouth until I feel “ready” to swallow it. Well, apparently a symptom of Familial Dysautonomia is difficulty swallowing. I don’t know if the two are connected when it comes to me, but it was pretty interesting to read about.

While I am talking away, I wanted to recommend a documentary that was very interesting to watch. My grandma is the one who actually told me about it. Its called “The Mysterious Heart” and its a three part series. I only watched the second one because it talked about pacemakers, and I was a bit curious. It was pretty interesting seeing the old pacemakers and how technology has advanced since then (thank God). They also talk about Long QT Syndrome, and procedures doctors do to help cure fast heart rate, etc. Its worth looking into, and you can get it at the library!

Here is my problem…I am way too stubborn. I have had a cold (or cholera, or whatever it is I have) for almost a week now, and my grandma keeps telling me to just rest. I don’t like to just sit around, I want to keep doing what I want to do. Consequence…I feel horrible.

I went to get my hair cut and colored after work yesterday and ended up almost passing out/throwing up. I had to lay on the floor with my feet up, and wait to feel better. Here is where I got lucky, one of the women who worked at the salon also works in the E.R. at Mercy Memorial. She knew exactly how to deal with me! Feet up, cold rag on my forehead, got me some Pepsi…it was great! It was so much better than when I get sick and people freak out. I don’t have to worry about telling them not to call the paramedics and keep asking me questions when all I want to do is lay there and try to get back to feeling normal. So, if you have dysautonomia (and even if you don’t) you should go to Affinity Spa in Dundee when you need some pampering. You can get a great haircut AND they have a nurse on staff! Now that is a full service spa!

I hate to feel sick in front of my friends. Don’t ask me why, I just don’t like it. In front of my family, I am fine. I feel more comfortable just because they have known about my heart problem since I was born. My friends on the other hand, they know about it, but they usually don’t see me being sick.

I went out to eat with my best friend who is in town for a few weeks. He is in the Air Force, so I only get to see him a few times a year. Well, I can’t sit for very long (no dysautonomic can) so I had to try and be slick and just say I wanna put my feet up. Its funny how I wanted to try and hide feeling sick from my best friend, but I don’t want to get people worried over something that I can handle. I am out with my friends, so I wanna be able to hang out with them and not be looked at as the different one in the group. I usually don’t care about other people’s opinions about me, and don’t let my heart problem affect me. But when it comes to my friends, I do care, who knows why!

This cold I have better get out quick. I am seeing Simple Plan on Friday, and even if I have to be dragged and propped up, I am going to that show! Last time I went to see them in concert, my friend and I both were getting over strep throat, and in turn gave it to members of the band. We read an interview they did a few days after the show saying how they were sick…oops! Maybe Michael Jackson has a surgical mask I can borrow.

I went to see Dr. Grubb and my pacemaker technician last week, and for the first time in a very long time (or ever) I got all good news! Yay! My pacemaker has about three years left on it, give or take a few months. The only problem with that still is that one of my leads has been in for eleven years, and that is sucking up a lot of the pacemaker battery. So when I get my pacemaker replaced, the old lead will be lasered out and replaced with a shiny pretty new one.

Another interesting thing my mom and I learned is that people who have chronic illnesses can develop Post Traumatic Stress Disorder. Now, when I first heard that, it made me immediately think of Vietnam war vets. I can kinda see how it could apply to me having dysautonomia, but then again, I can’t. But believe me, the depression that comes along with having this illness is very real. I didn’t just go see psychiatrists and therapists because the doctors thought I was making this up. I think I did need to see someone because I had a hard time dealing with this while still trying to be a normal kid. Now that I am older, I think the hardest part is coping with being an adult and all the responsibilities that come with it, AND deal with having dysautonomia. So, I may not be in Vietnam fighting a war, but I am fighting a war with myself sometimes.

All this talk when I could have just shut up and said that I had good news from the doctor. Oh well, one sentence isn’t all that exciting to read.

I like the idea that I can think about my future and think about all the things I would love to do with my life. In the past, when I was growing up and having to deal with being sick, my dreams were what kept me going. I wanted to be a softball player (thanks Dad) and I wanted to be a movie star, I wanted to do all this, and I didn’t want to think in the back of my head IF I could. But, I realized that I do have limitations. As much as it sucks to really say it, I do. Growing up, I have realized that there are things that I can do, and somethings I just can’t. Why dwell on them though? So I will never be a professional softball player, no need to end my life.

I think that when it comes to dysautonomia, its better to look at your limitations as hurdles to overcome. Think about how great that is when you can overcome the odds! I shouldn’t ride roller coasters…well, I have been riding them since I can remember and they don’t affect me. I love riding them, and even if they did make me pass out, I am strapped in, so its all good.

People don’t know how to really define what normal is. THIS is normal to me. I don’t know whats its like to be completely healthy, this is what has been normal to me for twenty two years. I really do sympathize with those who are just getting diagnosed because they had lived “normally” for so long and now they have this huge weight thrust upon them. Its funny, I don’t really remember thinking my life drastically changed when I had my pacemaker implanted. Maybe I was too young to really comprehend what had happened, or maybe it was the fact that I was too sick to really contemplate any deep life thoughts.

So, I am still kinda getting used to this whole living by myself thing. I mean that of course when it comes to my heart problem. Other than that, I love it. But, it does suck sometimes, like tonight for instance, when I am not feeling too hott, and there is no one here. I don’t get very good reception at my apartment either, so its hard to ring up mom or whoever else I want to bug because I can’t lay here and talk. When I lived at home and felt sick, I used to just bang on the wall until I woke my mom up, or she would here me throwing up in the hallway. Now though, I have to prop my feet up on all my pillows and just lay and wait for it to pass. Although MANY times I had laid there praying to God to please, just let me pass out so it can go away.

Its funny how now, after the pacemaker, I want to pass out. Before I hated it because, well, its just not fun. I would pass out, throw up (you know, that old song and dance) and be better. Now, since my pacemaker is hardcore about not letting me pass out, I just have to wait…and I am not a patient person…Maybe I should just have someone punch me in the face when I start to feel sick. I can pass out and hopefully wake up feeling better.

Perhaps I need to get to bed. My exhaustion could be why I am not feeling too hott. I shall drift off to sleep now, listening to Mr. George Harrison singing “Something.” Ah, the healing power of The Beatles…

I don’t know if its from being sick and having my heart stop or whatever, but I am a death hag. During my trips to California, I go to the  cemeteries and visit celebrity graves, which people think is really weird and dark, but whatever. My thing is, my favorite actors and actresses are dead, so the only way I can “meet” them is to go to their final resting place. Perhaps I am weird, but I am not alone in this.

Here is the thing though, I may be morbid with the whole graveyard thing, but recently there has been one image that bugs me to the point where I have to turn my head away from the screen. The footage of Heath Ledger’s body in a body bag being wheeled out to the streets. It was such a tragic loss and he was so young, I just don’t need to see that. And when Ryan Seacrest was on tv talking about how Heath’s 2 year old daughter “doesn’t even know she will never see her father again.” Shut up Seacrest!

It was a tragic loss, and my heart and prayers go out to his family and friends. And to the media, stop playing that footage!

I didn’t think withdrawal would be this hard. I have tried to stop drinking pop, and I am only on my second day…and ready to snap. I feel like I am withdrawing from crack or something harder than that! I have a headache, I am tired, everything…every little noise is like a nail being driven into my head. Anyone making the slighest loud outburst makes me want to cry. Needless to say, Jessica is not the happiest right now. Granted this hasn’t had any effect on the heart problem part of me…yet. Only the second day!!!

I have known that I needed to stop drinking pop because its just not the best thing for you. I had people telling me that they dropped weight after stopped drinking pop, and I am looking forward to that. But oh my Lord!

Wish me luck…