Pacer Chick

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…

I love when famous people make fools of themselves. Actually, I will go ahead and say I think its funny when ANYONE makes a fool of themselves. I am sure a lot of you have at least heard about if not seen Tom Cruise’s Scientology video. And let me just say that next time I get sick, make sure there is a scientologist near me because according to Tom, they know what to do to heal you. I don’t need an EMT to give me an IV and take me to the hospital, and I certainly don’t need a cardiologist to give me medication or a new pacemaker. No. I need Tom Cruise to talk crazy talk to me. I am sure it would make me feel better, because I would throw myself in front of a moving bus to end the misery.

I am not knocking his beliefs, I am knocking the fact that he seems to force his beliefs down everyone’s throat. I don’t know what I believe when it comes to religion, but I know that I don’t need people forcing things upon me.

What I really believe is that God has kept me here for a reason. I could have been gone a long time ago, or I could have been worse off. But God has kept me around for a purpose, and I don’t think he gave me this heart condition as a practical joke. I think I was given this heart condition for a reason. I like talking about how I got over the hurdles to become who I am today and helping those out there who are just getting diagnosed. I want to be an example that you can get over the hard times that come with this disorder. Maybe right now you can’t go to school or do all that you want to do right now, but look to the future! I am working, going to school, and I live on my own. If I can do it…you can too! Believe me, I am not just saying that to be cliche. That’s not my style…

I am a dork. I admit it, I am not ashamed. I love to read and I love history. I was reading a book about first ladies in the White House and came across a story that I had heard a few times before. President William McKinley’s wife Ida suffered from epilepsy, and when she would have a seizure, he would put his handkerchief over her face and hold it there until she was done. Its funny just imagining him holding the cloth over her face and carrying on a conversation like nothing was happening. Now, maybe its just me, but I would think that making me look like a ghost by draping cloths over me would be more embarrassing than just having a seizure in front of people. But that was how it was back then, epilepsy/seizures were something you hid from the public. Good Lord, I would have been hidden away for most of my life! And what would the world have been like then? Quieter I’m sure.

I think that is the one thing I know I tend to struggle with when it comes to my heart disorder, and I know a few of my friends who have dysautonomia feel the same way. Its embarrassing when you are out in public and start feeling sick because these people are seeing you at your absolute worst. When I moved to Florida for 6th and 7th grade, it sucked because I had to make new friends and cope with being sick as well. I was sitting in my math class (I think this was 7th grade) and I started to feel sick. The bell rang and I hurried out of the classroom to try and make it to the bathroom because I felt like I was going to throw up. I started running, and actually punched some kid in the stomach who was in my way. Of course, there was a huge line in the bathroom. I remember leaning against the wall because I knew something was going to happen…next thing I know, I wake up on the bathroom floor. So, after that incident, I was pretty much the new girl in school who was a fainting freak. I didn’t go to a lot of school in Florida though, with being sick and the pacemaker surgery, so I got over that incident real quick.

But how embarrassing is it when you get sick in school, have the ambulance called, get wheeled through the lunch room filled with about 100+ students who pretty much know who it is on the stretcher. That right there was a big part of my high school career. It was different than it was when I was in Florida though because at Monroe High, I had known these people for a long time, and they knew me. They knew that I wasn’t just a chick with a heart problem/pacemaker, I was Jessica. The fun loving girl who loves to laugh and have fun, their friend. Its always wise to set your yourself apart from the “sick” part of you. Otherwise, it can get the best of you and become you.

So, I am debating on whether or not to get the letter for all my professors explaining my heart condition to them. I didn’t do it last semester, I just told my professors about it, and they understood and were flexible. But some of them need a doctor’s note for an absence or they need it in writing from someone “official” that you really do have a health problem. I guess just flashing my pacemaker scar won’t cut it. The bad part about giving my professors the 411 about my health is that they will zero in on me and just wait for me to hit the deck. You ever notice that at school? In high school I couldn’t even go to the restroom by myself because I “might pass out.” So I don’t want to draw any unwanted attention my way in class for something like my heart, pacemaker, etc.

Is this reckless on my part? I don’t think so…well, not completely anyway. I think the same thing will happen whether or not the professor or my classmates know what is going on with my health. 911 will be called, and everyone will freak out. Happens all the time. I am BEYOND used to it. I think I will wait until my NCS/POTS becomes a problem and then say something. I haven’t passed out in awhile, my pacemaker hasn’t fallen out…so I am doing pretty well if I do say so myself. Why ring the alarm if the fire hasn’t even started? Nice analogy eh?

It was the first day of winter semester yesterday, and I had a pretty good day. I thought it was funny though in my computer class, my teacher was going through all the different computers we use in our everyday life. I wanted to raise my hand and be like “I am run somewhat by a computer.” But, I didn’t want everyone in my class to look at me like I was a freak…yet.

I don’t think about the fact that I have a pacemaker, because there isn’t really a point in dwelling on it. But if I really do think about it, its kinda weird. I mean, a lot of people out there go about their lives, “normal,” and nothing out of the ordinary in their bodies. I on the other and have a little mechanical box keeping my heart beats regular. I never would have thought when I was younger that I was going to grow up and have a pacemaker at age 11. I mean, when I tell people I have a pacemaker, a lot of the time they say “My grandma/grandpa has one.” They expect the recipient of pacemaker to be older in years, or on their death bed. Not me! I was an 11 year old who didn’t know why the heck she was passing out all the time! I didn’t even know what a pacemaker was. I thought it was just a little heart monitor, not a big deal. But my mom told me that it was surgically implanted, and I was freaked out! I didn’t want to be cut into! But I braved that surgery and here I am now, eleven years later still going strong.

I don’t want people to treat me differently after they find out I have a pacemaker, but sometimes, that is just unavoidable. Its always in the back of people’s minds, and I am the same way, so I am not saying anything bad about anyone.

For now, this computer is shutting down. I will reboot later and compute more data.

I went to the gym yesterday and had my dad walk me through the whole routine I needed to do. It was great! I felt really good going and working up a sweat. The one down side to it all though was that, somehow, I got hit in the face by one of the machines. The handle swung down and hit me square on the nose, knocked my glasses off, and kinda made me a bit spacey for a few minutes.

All you dysautonomics out there know that one of our symptoms is exercise intolerance…which, upon first hearing, I thought it sounded like more of an excuse than a symptom. But its true. Its not like we can’t run a treadmill or lift weights, its just that we can’t do it as hard as other people may be able to do it. Thats why its important to pace yourself, drink a lot of water, and keep an eye on your heart rate while exercising. I made sure to ask my dad what my heart rate should be at, and when I should stop or cool down a bit.

So don’t let the whole exercise intolerance aspect get you down or bother you. Just make sure to pace yourself. And believe me, I know a lot about pacing…;)

You know, I am really excited for this new year. I am hopefully going to be done with school by the end of this year, going to be working on getting my weight back to what I like, and the best part, all the upcoming concerts I get to go to. I am going to see Micky Dolenz from The Monkees at the end of this month! I have always wanted to meet them, and if I have to do it one at a time, so be it! And then one of my favorite bands, Simple Plan is touring soon and so my girlfriend and I get to see them again.

Its so great to be able to go on these little road trips to get to do what I want to do. Half my age ago (that sounds funny…) I wouldn’t have even fathomed being able to go and do whatever I wanted by myself. I know some of you out there who are just being diagnosed with dysautonomia may feel like the hard times will never end, but they will. Trust me. There is a light at the end of the tunnel, and you will be back on your feet (literally for some of us) doing what you love to do. If you love to run marathons, if you want to be outside playing with your friends, if you want to ride a unicycle while playing a violin while blindfolded…you will be able to do it! Never doubt yourself or what you are capable of.

Jessica here knows that she is gonna go and meet Micky Dolenz and meet her boy from Simple Plan again. And if I have to be wheeled in on a stretcher to do it, so be it. I am not gonna let this hold me back from doing what I want to do…no sir.

Seriously, you can kick dysautonomia’s butt. Don’t ever let it control you.

Being sick, you get the chance to come across really nice amazing people in the medical field…if you are lucky. I know we have all had our share of evil doctors who have not believed us, not believed our parents, and just never listened to us! And when those sadist doctors keep us in the hospital for tests and more tests, nice nurses really can be a silver lining.

When I was 11 and in the hospital getting my first pacemaker, I ended up being in the hospital for about two weeks. Needless to say, it was not the happiest time for me. But I did take away some positive moments from that terrible experience. One of them was a nurse named Dan who helped make me smile even when I was feeling sick beyond belief. I remember one day when I was really sick from all the medicine I was given and just upset that I was stuck in bed and couldn’t really do anything. Dan came into the room and asked me what movie I would like to watch because he would bring in his own movies from his house, wheel a TV and VCR into my room so I could watch them. He brought me “The Mask” with Jim Carrey, and he brought me some snacks and it really helped make the days go by a lot easier.

Another great thing he did was when my doctor was telling me I was faking being sick because I didn’t want to get up out of bed. The medication they were giving me would make me throw up after I got up and walked around, but he kept insisting I walk around and wouldn’t stop the medicine. So, I was bawling my eyes out while Dan helped get me up to walk around. Through me crying my eyes out, he led me over to the neo-natal unit where the babies were laying. I remember a nurse holding up the smallest baby I had ever seen and I was just amazed at seeing something that small, and it helped me stop crying. Mind you, I threw up everywhere when I got back to the room…all over my doctor as well. Ha!

I wish I could have gotten Dan’s last name and just told him how great he was, but I can just remember him and know that there are really kind people out there, and not just people, but nurses. My mom is a nurse, and I know she isn’t on the dark side. So I am very lucky to be a dysautonomic disaster with a wonderful nurse as my mom. Two for the price of one.

Back to work for me…