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

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…

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 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…”

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.

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!

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 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.

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 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.