Tuesday, February 28, 2012

On days like today... Coloring is awesome!

Facebook statuses this week... gotta laugh at the bad stuff...


Me: The floor at Costco is very hard and dirty... I know this now from first hand experience... And have the headache to prove it.
Me: (two hours later) And I just passed out again. Thats 6x in 9 days! Whoo!


Me: In the hospital again. If I knew the nurse would be this cute I would've shaved my legs... Maybe brushed my hair... Taken a shower...
Friend: Just wait till the cute nurse comes back to do the EKG and then you'll really cry!
Me: Nope, a girl nurse did the EKG... That reminds me, now I need to go search for all this sticky pads all over me...


Me: Five hours later... And yes. I have a concussion.


So I spent the day in the ER waiting to be told that I have a concussion from my recent POTS episodes. These made me smile today. 

I know it sounds childish, but coloring is awesome!

Friday, February 24, 2012

I had forgotten...

I recently went to a friend's goodbye party at a local bar. I hadn't been sure I would be able to make it considering how bad I've been feeling, but I lucked out with a good day. I lucked out again by having friends who could drive me both ways so I didn't need to worry about getting too tired to drive or getting stranded if my POTS acted up. So I jumped at the rare chance to get out, to get away from it all. Get away from it all sounds strange considering the fact that I can't and therefore don't do anything, but in a backwards way, thats what I need to get away from.
Maybe its that I am scared that if I go out I'll pass out; if I pass out, will I hurt myself on my way down or will I embarrass myself or friends. Maybe I'm nervous about how people I know will react to me not being how I used to be; if I act or look like I don't feel like my bubbly self. Maybe I've just become complacent with being in bed all day and don't have the energy to fight anymore. Maybe its because I don't have many friends and the ones I have are busy having lives. Maybe its because I'm getting to the point where I can't drive by myself anymore and live too far from my friends to go see them. Maybe its a combination of all of those factors. Whatever the reason, I haven't been leaving the house and I wish I could. I've been going to dinner with my family, running to the grocery or doctors, but nothing really fun. 
So I went to dinner before the party with two friends, we seriously were laughing most of the time! It was so much fun to just sit and chat with friends... in person. On the drive to the bar we were singing and dancing in our seats to silly dance songs like "hit me baby one more time" and "single ladies", it was fun. It was me being me. I've missed that. Once we got to the bar I had a second when I got out of the car that I thought I might pass out. I was so nervous that I'd end up waking up on the ground in the freezing cold parking lot with friends all standing around me freaking out, or worse, an ambulance. As I tried to fake that I was okay, the feeling passed. Thank God!
Once we got inside the bar and found our group of friends and (former) co-workers, I found a perch on a bar chair near some friends. We chatted for a while, which was great. I sipped shirley temples (my favorite non-alcoholic drink!) and was really enjoying myself. Many of the people there I had not seen in months, these were people I saw at work almost everyday. Its funny how you learn who your friends are when you're sick. Many people there were asking me if the doctors ever got a diagnosis; I was diagnosed in 2010. I don't think I've explained POTS that many times in my entire life. It seemed strange to be talking about my sickness in a bar, but I don't have anything else going on in my life. What do you say to someone who asks "so how have you been doing?" when all you've done is spend time in bed and do chores at home? Once everyone was up to speed, it was as if no time had passed. We were chatting, laughing, cracking jokes, and having a great time. I actually didn't feel bad for about an hour! It was great! Such a relief to just be me and be able to hang out with friends. I've missed that. I've missed going to bars with friends like I did at school. I've missed getting dressed up to go out and look nice. I've missed having guys looks at me like I'm pretty instead of having them look at me like I'm sick. I've missed being there for the jokes instead of hearing them after the fact. I've missed just being in the moment.
I had forgotten.


Ps: the post "the elevator speech" is related to this post. I just took it out because it is worthy of its own subject and post...

Wednesday, February 22, 2012

Brain fog and POTS

Imagine yourself with POTS.
Now hold a conversation.

One thing that I don't think people understand about POTS. I may seem tired and flighty lately, but thats because I am dealing with way more things than it looks like. At any given point in time, I may have chest pains, a headache and feel like I am having a heart attack. A few seconds later my blood pressure may drop and I feel like I'm going to pass out. The slightest things like bending over to pick something up or getting out of a seat can mean I go from feeling okay to feeling like my body is out of control. It is incredibly distracting and upsetting to feel you heart racing and to have it hurt for no reason. Little by little I've become deconditioned and now I can barely make it up the stairs most nights because my heart rate jumps so dramatically.
"Its an invisible disease...
Until you're passed out on the floor."
With POTS, when you're having a bad day you can get what is called brain fog. In addition to all the other distractions that go along with it, the lack of blood getting to our brains (the same lack that eventually causes out passing out) causes a kind of cloudy and confused state of mind. Everyone experiences it slightly different, but from my conversations with other POTS patients, we all kind of get fuzzy and have memory problems. Add all that to the fact that my hair is falling out, my toes keep getting Raynaud's, and my Midodrine induced goosebumps and any attention I have left tends to go straight to basic daily functions. Its important for people who are supporting or around POTS patients to understand this. No, we aren't ignoring you, no we aren't being flighty or ditzy. We're dealing with an incredible amount of physical  stimuli and our brains sometimes just aren't able to keep up with that and a conversation. Patience and understanding with POTSies is very appreciated. Be well POTSies!

Sunday, February 19, 2012

What gives us strength

This month has been both amazing and really tough. I drove with my family to New Orleans for a funeral and spent two weeks with family there. While it is always hard to have someone we love leave this earth, my Gramma hasn't really been "all there" since Katrina. For the last few months, a good day was one that she opened her eyes. To us, while we were sad that she died, it was a blessing for her suffering to be over and for her to finally be at peace.
While I was out of town I had some great times with family. We enjoyed food, we played with the kids, we saw the sites. It was great to be in the city I call home again. It was great to be with family again.