Pacer Chick

How come whenever I get sick or some kind of ailment its ten times worse than it needs to be? I get a cold or the flu, and I end up in the hospital with an IV in my arm because I am dehydrated. And now, I have poison ivy taking over me! I had it just on my left ankle at first. Now its on my ankle, thigh on my left leg, my right hand, and on my neck. I have stuff to put on it, but that stuff BURNS!! I had a bad outbreak of poison ivy about seven or eight years ago and ended up having to get a steroid shot because it was all up my left side. Better not happen again!! I think I got it at Vince’s hot dog stand…grrr!!!

I had a friend who got mad at me once because she said people paid for attention to me when I was sick because I have a heart condition and no one pays attention to her when she is sick. After cracking up and what an idiotic thing that was to say, I thought about it, and I guess its true. But its not like its something to be proud of! Who knows…I am just a walking mess I suppose.

*yawn* Tired and itchy!! Ugh!!!

I will admit that I am not going to the fair unless I have a solid reason. Sorry. But I am not the type of person who digs walking around in the heat for no reason. I do like to sneak over there with my co-workers and grab some lunch though.  We are conveniently located across from the fairgrounds, I think just so that I can grab a corn dog or two. BUT I will be there Thursday night at the Monroe Evening News booth. They will be having a “Meet the Bloggers” shindig going on, and I will be making a guest appearance. I would love if you stopped and said hello. Don’t be to shocked if I have a corn dog shoved in my mouth though…I love those things. In all seriousness though, I think it will be fun. I hope I can meet some of the other people in Monroe who pass out like me and even the fellow bloggers who I rarely have time to talk to. (Sorry!)  So, like I said, whether you faint or not, you can still come say hello to me.

I walked about four miles this morning. I should give myself a round of applause for that.  I am weening off the pop…again. I just want to get this weight off that I gained when I was taking Lexapro. That is another bad thing about having a health condition like this. The only real “cure” is medicine, which can be a pain to figure out which one or which ones work best.  So hopefully this working out and cutting out the pop can help me get back to normal because I am not digging this Michelin Man Jessica deal that I have going on. And, as my grandma says, its not just for vanity reasons, but for health reasons too. I mean, I already have the bum ticker and the pacemaker, I don’t really need any other health anomalies. Not right now at least.

Alright. Off to home now. No idea what I am doing today. I think I will watch “21,” since I got it from work. Although its probably not a good idea since Jim Sturgess will send my pacemaker into overdrive. Way hott.

Ciao!

So, I guess its been awhile since I have been sick. My vacation time is up. Yesterday and continuing into today I have had a horrid headache. And just feeling like I was on the verge of passing out. Boy oh boy do I miss having this feeling…SIKE! I was telling my grandma I was just waiting for the angels to take me, she told me I was being overdramatic. Which, yes I was, but ugh, that sick feeling is just horrible.

Hope all my other dysautonomics have been feeling okay during the summer. It really hasn’t been bad, weather wise that is. Not too hot. Its actually really nice today. Lucky us!

Alright, back to watching “Some Like It Hot.” My head is still hurting. :o(

I, as well as other patients of Dr. Grubb received a letter in the mail a week or so ago. The letter was Dr. Grubb explaining that his wife has been diagnosed with a malignant brain tumor and he is taking time away from the office to care for her. Its very sad to hear this because his wife is a very nice lady, and it really does suck to hear that something like this is effecting such a wonderful family.

Please keep Dr. Grubb and his family in your prayers.

You know whats weird to think about? I think about all the stuff I have been through in my life, medically that is, and it blows my mind. It never did before, because it was old news to me, but now its just weird. My NCS and POTS aren’t really a huge deal for my anymore, so that girl who had to be in the hospital all the time, was passing out for no reason all the time, and had to deal with all kinds of medical procedures seems like a different person to me. I am really proud at myself looking at all I have been through and am still here and relatively sane. Not to brag or anything, but I am pretty strong. I need to keep what I have been through in mind when I am feeling overwhelmed or stressed out.

I know at times dealing with this whole mess can be stressful, but everyday you make it through is a thing to be happy about. I don’t know where I would be without my family keeping me going. There were days when I didn’t want to go to the mall with them or out to eat because I was afraid of getting sick. My family were there for me for though and dealt with it and they were the ones who pushed me when I needed it.

Speaking of NCS, POTS, and family, it would be cool if everyone in the Monroe area could get together as kind of a support group of sorts. It would be nice to be able to meet people with dysautonomia who live in the same area. Just an idea…

Yeah, yeah. I know it has been awhile since I have written. I have been busy and hadn’t found anytime to sit and write a blog. I didn’t want to write one that was only a paragraph long talking about the same old stuff over and over again. That even bores ME, and I have to live with it!

No big news on the homefront. I am starting to get more heart burn and acid reflux which is just AWESOME!! I have a friend with POTS who actually had to get dentures because his acid reflux ruined his teeth. I better not be headed in that direction. My family may be hillbillies, but I want my own teeth! I am probably gonna be put on meds for it, because it gets really annoying. Right now my cure is milk and Tums.

I was talking to my friend about all this mess and was telling her I think I really am a 70 year old woman. I have acid reflux, I have a pacemaker, and I love old movies. So…me being 23 is just a joke. I hope I can get some medicare or something…

Okay. Enough for right now. My next blog will be FANTASTIC! I just gotta think of what to write…I should write about how I wish I was Iron Man. I saw that movie a week or so ago, and I want his little glowing thing to be my pacemaker. How cool would that be to have a glowing orb in the middle of your chest instead of a boring little box under your skin? I might have to suggest that when I get mine replaced.

Stay cool! If you have POTS, stay glued to the AC!

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!