Pacer Chick

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…