So, if I haven't made myself clear, POTS sucks. Dysautonomia sucks. Heart disease sucks. This post isn't going to win points for positive attitude, but I really couldn't care less. When you've be this sick for this long, it gets old and frustrating REALLY quickly. So here's my little tirade that I desperately need to get out of my system:
Before POTS came along, I was managing my congenital heart defect just fine. The only treatment needed was a pacemaker: I would go to the hospital for a pacemaker check once a year (unless is was replacement time), had phone checks every 3 months, and took no medications. I knew what was ok for my body and what wasn't. I had many respiratory issues when I was younger (bronchitis, croup, pneumonia, and pleurisy), but I always knew when to go to the emergency room. Now, thanks to POTS, things that would have sent me rushing to the hospital before are now normal. When new symptoms crop up, or a weird pain comes along, I usually wait it out until I'm writhing on the floor. And even then I try to wait it out. I haven't been to the ER in over 4 years, and I'm really thinking about going if my body doesn't shape up. I've had terrible insomnia for an entire week, and it happens frequently. My chest pain has been bad. I feel like there's nothing in my chest, or like I'm having an adrenaline rush, but my heart isn't racing and I'm just sitting down. I can't explain it. It happens a lot, but is a completely unique and disturbing sensation - how do you communicate effectively with the doctors if you can't even tell them what's going on? How are they going to understand your symptoms if you can't understand them yourself? My limbs are weak, I wake up with a pounding headache every morning, my heart races with the slightest movement. There is a constant ache around the liver area (and has been there since it became enlarged last year, but with no known cause). I can never seem to get a full breath, and sometimes I catch myself barely breathing at all. And just a little while ago, this lovely stabbing pain in my left side showed up.
I know I sound like your grandmother who's always complaining about her health, and I feel bad saying this, but I totally get where she's coming from. Except I'm not even 20 yet. And that's really depressing. What's even more depressing is knowing that there are probably going to be other health issues that arise down the road as a result of the ones I have already collected. Dilated cardiomyopathy (aka heart failure), for example, is associated with heart rhythm issues. Specifically, with congenital complete heart block. Well, I've got the heart block PLUS tachycardia with POTS. Most people with dilated cardiomyopathy eventually require a transplant. We don't even HAVE long-term prognosis data for POTS and Dysautonomia, as we are still struggling to get many medical professionals to accept it as a real illness! So I don't really care if I sound like Maxine from time-to-time. You probably would too.
This is Maxine, my role model (Source)
On a somewhat unrelated note, I'm trying to go gluten-free. I've heard lots of success stories from chronically-ill people and I want to see if it helps. At this point I don't think I have much to loose. Except I might need to put this sign on my door:
See? I can be funny and sick and frustrated and upset and confused at the same time. I hope that's normal.... ;)
Hope the rest of your week goes smoothly!
Sydney
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