Pacer Chick

Apparently everyone and their mother are sick with some kind of nasty cold, at least it seems that way in school. I don’t get “people” sick…which in my vocabulary is colds, flu, etc. Anything other than my heart problem is “people” sick. Anyways! I don’t get colds very often, but when I do…LOOK OUT!

If you have POTS, NCS, etc. you know where I am going with this. When we get sick, its always worse than when “normal” people get sick. And people don’t seem to understand that sometimes, they just think we are big ole’ drama queens or something wanting all this extra attention. FALSE! The last time I had the flu, I had to be put in the hospital, and I don’t usually try to milk attention to be put into the emergency room…not my cup of tea. I used to have a friend who would just complain about how she was sick and no one cared, but when I was sick, everyone freaked out and just fawned over me. Okay…first, get over yourself, and two….well, just get over yourself. Ask my family, I don’t like people bugging me. If I am sick, the LAST thing I want is a thousand people in  my face. I swear, God has given me a huge amount of self control because people who say ignorant things like that to me are lucky I don’t smack them.

If any of you dysautonomics are feeling sicknesses coming on, I’ll be thinking of you!!

My cousin Gail passed away over the weekend from a brain aneurysm. I mean, that came out of nowhere! It really makes you think about how quick you can be taken away from this earth. I learned when I was younger just how lucky I should feel to be alive. I saw kids when I was in the hospital who were worse off than I was, and it made me realize that I was lucky. I was going to be out of the hospital in a matter of days, not in a matter of months. Yes, I may have gone through a lot of horrible things a child shouldn’t have to go through, but I am here now. I can talk about how I overcame all these different things, and I should be thankful everyday for that.

When things don’t seem to be going right with the whole dysautonomia mess, just try and think about how far you have come and really take a moment to thank those who helped get you there. I have had my share of crackpot doctors, I even had one threaten to “stick me with IV’s, put me back in the hospital, and put me back on the tilt table *nightmare* if I didn’t stop passing out.” But look at Dr. Grubb who has pretty much become a lot of peoples personal savior. He is so smart and has helped me out 110% because he believed me and my mother. He listens. Yes, it may take awhile to get in to see him, but it is worth it. It was so refreshing to actually have a doctor sit and listen to your troubles and not criticize you. I should really make him read this….get some brownie points

I am at school now, and I should go and wait for my next class to start. I had to leave early from one because the kid sitting next to me would NOT stop sniffing his nose!!! It was driving me insane!! I may have compassion for somethings, but good Lord the smallest things make me wanna blow my top! I blame it on my lack of sleep…

 Okay, goodbye now.

So, we are all done eating (for now) over here at my grandparent’s house. I am on the couch, listening to my Papaw play guitar while my cousin plays banjo…yes, we are southern.

I sure am thankful for my family and most of all my health. I may not be in tip top condition, but I am up and I am living! I mean, I never thought when I was younger that I would be able to be going to school full time and work. Now look at me! I always tell people that come up to me who have just been recently diagnosed not to fret. I know the upward climb seems so hard and just neverending,  but you will get through it. It bummed me out for a little bit when my friend asked my mom if I will ever grow out of having NCS/POTS and my mom said no. A lot of my friends who have it got it later in life so they have a higher chance of going on and being healthy. I on the other hand was born with this, so its gonna be with me for a long time. I don’t let it bum me out to much though because that just means I will still be able to help and relate to those who are just getting diagnosed.

It is nice being around my family though because they understand me and my “messed up-ness” If I were to get sick around strangers, oh man…call 911, call the cops, call Scotland Yard! My family though…nope, and thats a good thing. People sometimes see my mom trying to get me up and walking around and they freak out! But my mom is 1) a nurse, and 2) she has been dealing with me for 22 years. The woman sometimes knows more about what is going on with me and my health than I do. I had to call her the other day and ask her what kind of pacemaker I had! I forgot

Alright, going back to the sing-a-long. Hope ya’ll have a great holiday!!

I think that describes us kids with Dysautonomia very well if I do say so myself. I used to wonder sometimes what life would be like if I didn’t have this heart problem, and the first word that popped into my head was “BORING” I am sure I would feel better a lot more, but who wants to be normal ya know? I must admit I do get a kick out of people thinking I am joking when I tell them I have a heart problem and a pacemaker. I am usually jumping off the wall and talking my head off in class that my classmates think I am joking. They usually believe me when I show them my stab wound *pacemaker scar* You gotta have some fun with it!

I love writing this blog, especially knowing that it helps people who feel alone out there with this disorder. I think its neat how everyone has their own way of dealing with it. Me, I don’t pay attention to what my doctor says sometimes. Do I have a death wish? No. But, I don’t want to have to stop living my life because of little things. I want to be front row at a concert, I want to ride to the fast roller coasters! (Well, I don’t ride the new ones at Cedar Point because I was told my pacemaker leads could come out and I am not really digging the thought of that)

Don’t ever let something like this control your life. If you have to move around in your seat a lot otherwise you will pass out, do it! If you have to lay down and put your feet up or throw up everywhere, do it! Don’t be self concious when it comes to your health. Yes, people will stare…I mean, we are pretty entertaining right? People care, they aren’t gonna laugh at you. And if they do, smack them.

Homework for me. And goodnight to you.

I had a few people call me bold the other day, which isn’t a bad thing so I am not gonna go nuts about it. I asked the cute boy in my class if he had a girlfriend or not. I don’t think thats bold, I wanted to know! I learned at a young age that life is short, why waste it, ya know?

I had a good time in my classes today. In one of my classes though we had to play a game where the “blind” people were led around by the sighted people and my friends and I kept smacking each other. Well, my one friend jabbed me right in the pacemaker. Can you say OWWWW?!!? I think maybe next time I need to add a disclaimer: “Kick me, slap me, do whatever. Just don’t poke me in the pacemaker.” I had fun though because it just feels good meeting new people and laughing with my friends.

Oh yeah! This girl in one my classes was playing with this handful of magnets. She kept throwing them in the air and watching them gather together. I had to stay away from her because I didn’t want to malfunction at school. Would NOT be too much fun…I would probably look like a spazzed out robot. I have always said though, before I die, I want to stick a magnet to me like a pin or something. Yeah, I’m a bit of a moron.

Alright, until next time…

I had dinner the other night with my mom, my friend Stephanie and her mom. Stephanie and I both have dysautonomia, and we met through the DYNA foundation. Hearing her talk about what she does to make her symptoms easier made me feel like a spazz or something. She was talking about how she drinks tons of water if she knows she is gonna go out that night. Do I? Nope. Its not like I am abusing my body or anything, but I don’t want to have this way me down. I applaud her for caring for herself though, I wish I could, but I don’t know…I just think its easier if I can just go about life pretending this doesn’t even exist I guess.

I am trying to focus on my mental health now more than the heart stuff though. I want a healthy state of mind more than anything. I don’t want to always be worrying about school and where my life is going. I want to be in California…scratch that, NEED to  be there. I wish I could just fast forward and be living there. I am planning a trip there in my head, maybe even by myself so I can really enjoy it. I can go celebrity grave hunting finally on MY terms. Stay there as long as I want

Wow, off track here. Hey, I have to vent somewhere right? Don’t want to give myself a heart attack although I wonder if my pacemaker would just shock that attack back into place…My pacemaker and I are a powerful match. Don’t mess with us.

Fare thee well…

That has 2 different meanings behind it. 1) I haven’t posted in awhile and 2) The old Jessica is back! I had gone through a period where I was just a depressed, miserable, fat…whatever. And now, I feel so good about who I am. I know I need to work on losing some more weight but I feel comfortable about who I am now. I love myself and I love my life, and its been soooooo long since I have been able to say that and mean it. I don’t wear my heart on my sleeve so it can be beaten up easily. Oh no. The “Wahl” is back. *MUAHAHAHA*

So, now that I got the joy out of me…let me tell you about the horrible morning I had. I hadn’t taken my pill in 3 days (completely my fault, I  know) well…I got my punishment this morning. I woke up and it literally was hurting me to even move my eyes. This sharp pain would come into my head and shoot down my arms into my fingertips. I was shaking, but my legs were sweating. Driving to the pharmacy was a nightmare because when I would have to move my head/eyes to drive I would scream out in pain, I sounded like I was in the middle of child birth. The pain was making me cry and shake, so I looked like a crack addict I am sure. Walking into the hospital I had to dig my keys into my hand so I wouldn’t pass out because a hospital stay was not on my agenda. Needless to say, I took my pill, rested, and felt much better. I still feel a little goofy, but I can move my eyes without yelling! No pity though. My own stupid fault.

Hope ya’ll had a yummy Halloween!