Pacer Chick

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…

New Year coming up. I don’t like making resolutions because I think they are stupid. No one keeps them it seems. I mean, Britney Spears said for 2007, she was going to take care of herself. And we all saw how well that turned out.

Anyways…this year is gonna be about building me back up. 2007 was a bit of a rough year for me. But I started to build back up from that later on in the year. So that means 2008 is going to start out on a good note. I am back in school, doing well. I am working and able to live on my own in a cute apartment. I have made new, great friends. I have gotten to see my family a lot this year, and I love them all so much. I haven’t been too sick this year. I have a lot to be thankful for, and I gotta try to keep that in mind. I went through a horrible breakup the beginning of 2007 and thought that that was the end of me pretty much. I have grown from that though. I thought the whole “What doesn’t kill you, only makes you stronger” was a stupid quote, but its true. I made it through dating a complete loser. There is a real guy out there for me, and for all my lovely girl cousins!

So, here is to a great new year for everyone! I wish you all happy health.

Santa-Mommy was good to me this year. Jessica is typing this on her brand new laptop. And to celebrate this event, I went to Panera on my lunch break to “blend in” with the in crowd of laptop users/cafe patrons.

On that note…I suppose getting back to work would be a good idea now. Just wanted to share the good news. Now you can get some niiiiice blogs.

I found out I have something else wrong with me! Go figure!

Well, it really isn’t a NEW thing…its more a branch off of my form of dysautonomia. I was looking online to see exactly how sounds affect us dysautonomics and I found out there is something called “Overactive Dysautonomia”. Here is the little blurb that explains what it is:

Dysautonomia is when the autonomic nervous system (ANS) fails to work correctly, causing problems with unconscious regulation of multiple body systems and functions. Many doctors are familiar with forms of dysautonomia in which the ANS is underactive, but the opposite problem can also occur: the ANS can be overactive. This type of ANS dysfunction is rarely even recognized by doctors, because it has never acquired the official status of a specific disease.

A person suffering from overactive dysautonomia may have overactivity of the sympathetic branch of the ANS, causing symptoms such as hypervigilance, insomnia, anxiety, panic attacks, tachycardia, muscle spasms and pain, irritable bowel, and excessive vasoconstriction and oxygen deprivation anywhere in the body. Other times, the parasympathetic branch of the ANS may be overactive, causing fatigue, weakness, orthostatic hypotension, lightheadedness and dizziness, etc. A person may alternate back and forth between these two states, as the ANS constantly overreacts and struggles to maintain homeostasis. Often, people with this disease have a very difficult time dealing with stress, and normal stimuli of daily life (lights, noises, smells, temperature changes, work demands, emotional conflicts) affect them in exaggerated ways.
 

I thought that was kind of interesting because I had never heard of it before. My mom, the nurse, had never even heard of it before. It explains a lot though because if there is too much going on…too much noise, I start feeling goofy or spazz out. Or when I was younger, when the Fermi siren went off, I would freak out. My mom didn’t even like to take me to malls, just because too much was going on for my head to deal with. Maybe that has to do with how sometimes before I pass out, if people keep asking me how I am doing…I will get M-E-A-N!!!

How much does that suck though? “I have a heart condition…but here is a list of all my symptoms. Oh yeah, and don’t make too much noise.” Its ridiculous! Sometimes I wish I had something nice and simple so that when people ask me what I have, I tell them, they know what I am talking about. Usually when people ask I am like “I have a pacemaker and I pass out.” Clear and simple.

So I wanted to share that with you all out there with may experience some of those symptoms. Hope you guys have a great Christmas!!

Well, I hope I am not going to pull a “Sanford and Son”…

 For some reason today, I have been getting really weird chest pains. Almost like how you get if you run around a lot and get way out of breath. I have no idea why, but I do know its not a lovely feeling. I was going to go to the gym today, but I think for the sake of myself and for those who would most likely freak out around me, I should just lay low and hope that it passes…

I got an early Christmas present from my dad, the body builder. I got a YMCA membership! Yay!! I used to have one back when we all lived in Monroe, but now I get my very own! Who’s a big girl now?! And no, I am not being literal…

That is right ladies and gentlemen. Cute Jessica will be coming back. I seem to be hidden beneath all the fat I gained from my last medication. But I think it will help A LOT going to the gym, burning off calories, and burning off stress…thats a big one.

One of the many symptoms of NCS, POTS, etc. is that we are exercise intolerant. (I’ll use that as an excuse for my weight gain too). I didn’t take a gym class in my middle school years because it was still too “dangerous” for me to do it. God knows what would have happened if I was made to play kick ball. It was okay though, because I got to be an art teacher’s assistant, and that was way cooler than having to be in gym class. I think its all about pacing yourself and knowing your limits. If you can’t run 50 laps around the gym, then don’t. Don’t push yourself too much, but how will you know if you can do it if you don’t try?

So, for all you sitting out from gym class for fear of being sick. I feel your pain. But, like I always say, it will get better.

I want to write about something that doesn’t have a thing to do with my having a pacemaker, or even with me having a heart condition. But it is something that I am very interested in, and if you love me…you will read it regardless of the lack of medical jargin in it. Or just read it out of sympathy…I am a messed up little girl…*j/k*

If you know me, or have gotten to know me through this, you should know that I love old movies. Older the better. Silent. Black and white. I love them! I have this list of my movie stars I love and what movies of theirs I want/need to see, and the sad thing is, a lot of their movies are lost due to fire damage or they just decomposed and turned into dust. I just think that is the saddest thing. I mean, these beautiful movie stars in the good ole’ days of Hollywood…and we don’t get a chance to see some of them in action. Like Theda Bara, I love her. Only about three of her movies exist to this day because of a fire in the building storing her movies. She was so popular and made these great movies, but all we can see is pictures from these movies. Ugh! It makes me want to go back in time and go to the big, beautiful movie theaters and watch the movies while the live orchestra plays the background music.

I would love to do movie restoration as a side job. I have such a admiration for these old movies, it would be great to see more of the Talmadge sisters, or Clara Bow on these films. It would be totally cool to find an abandoned film hidden in my basement…thats where a lot of them are found. In old theaters, basements, etc. Someone even found some in an abandoned pool! If I found one….ooh, I get goosebumps! It would be very cool.

I just wanted to write about this because it is something I really do care about. Thanks for reading!!

I have known for awhile that I am just a mess. I pass out even while I am sitting down, I can’t be in the sun for too long, I can’t sit or stand in one place for too long, I can’t get any piercings because my scar tissue doesn’t heal right…blah blah blah. I am gonna be a little rebel though. I am gonna go get my ears pierced over Christmas, if my ears end up looking like that of a boxer…well, at least I tried right? I am going to a get a few more tattoos even if it means having me throw up a few more times. I am going to go to  my favorite bands concerts and stay up late waiting around to meet them in the freezing cold.

Please don’t read this and think I am just a loose cannon and a bad influence, because its not how it is with me. I am a complete nerd too. I like the quiet, I like to read, and sometimes I just like to be left alone. But, with the nerd you also get the rockstar…and she wants to come out sometimes!! I am 22 for goodness sake, let me go out and have fun! My pacemaker and I are one kick @$$ team…we can rock all night! I am all for taking care of yourself though, I really admire people who drink all the water they need and stay away from the things they should. Hopefully one day it will rub off on me.

Goodbye for now!

I think I already did a post about iPods, but oh well.

One thing about dysautonomia is that lights and sounds can affect us. Sounds crazy right? Well, strobe lights are a nightmare and too much noise going on around us can sometimes be a cause for us to get sick. Something that I know helps me at times is my headphones…and my iPod. If I am not feeling well at school, it really helps if I am walking around inside and SOOOO many people are talking and what not, it can be too much for my head to handle when I am already concentrating on being upright. If I just put my iPod on and just have one thing going through my head, it just helps with the concentration of feeling better or getting where I need to go to feel better. Don’t ask me why, but it does help. My friend Stephanie, who has since passed away, used to wear headphones for the same reason. I guess I shouldn’t be advocating for this though since iPods are supposed to be bad for pacemakers but….I would rather NOT pass out at school than worry about whether or not my pacemaker may or may not be affected.

But seriously, try it sometime. If you are ever not feeling 100% (which is most of the time) try listening to just one thing, like your iPod. It may help…

My younger sister and I love the “Golden Girls”. Between us we own all of them, although I have all of them stashed at my place *muahaha* Anyways, in one of the episodes I was watching, Blanche has to get a pacemaker. She freaks out about it because she thinks if she even kisses her boyfriend, sparks will start flying and smoke will come out of her ears. I was trying to think back when I had my pacemaker put in if I had any worries or concerns, and I don’t think I did. I mean, I freaked out when I found out that they were going to have to surgically put in the pacemaker…but other than that, I didn’t really freak out. I more or less just forgot about it.

The people around me though, well, thats another story. My teachers wouldn’t let me even go to the bathroom without a bringing someone along. I must admit though that sometimes my friends and I would say I wasn’t feeling good and needed to go for a walk, then we would go to the lunchroom and visit with our other friends or something. I took advantage, I will admit it. But hey…I have been through so much with this, I need to get some enjoyment out of it! I wanted to even get a handicap parking pass but my mom vetoed that idea. She puts me in my place.

 Oh yeah, and I have to say it…thank you for being my friend!