After being sick for so long, I finally have a name for my illness: Postural Orthostatic Tachycardia Syndrome, otherwise known as P.O.T.S.

A cardiac condition that's stripped me of my health, weight (causing me to drop to anorexic weight), self confidence, friends, jobs and continuing my education.

My goals are simple: gain weight, be healthier, and get out more. Basically, get my life back!

I'm also hoping to spread some awareness on this little known condition, and to highlight the struggles of the underweight and people with "invisible illnesses."

Monday, April 16, 2012

10 Things I Need the Most:

Write a list of the 10 things you need (or love) most.

Honestly, there are a lot of things I could live without, but these are the things that I prefer to have to make my life more enjoyable/livable:

  1. My dogs. They are the lights of my life and I would be miserable and lonely without them.
  2. The internet. I could live without it, but I enjoy having it. It allows me to connect with other people and make friends - POTSies and non-POTSies alike!
  3. Notebook paper (and a writing utensil.) I'm a compulsive lister. I make lists all of the time about things I want to accomplish, need to do, have to ask doctors, important stats, etc. I also enjoy writing actual mail.
  4. The postal system. Again, I love to send mail and packages to my family members and to friends.
  5. Meds. The last thing I ever wanted was to be on medication. I hate it. I resent it. I tried everything to keep from being on it and that just wasn't possible. I've come to terms with more-or-less needing medication. I don't NEED it; I could be a vegetable somewhere...but I greatly appreciate having it because it allows me to lead a relatively normal life.
  6. Compression stockings. Same reasons as above. They are ugly, and a pain in the neck to get on, and make me feel about a hundred years old. But, with them on, I feel human again and I'm able to function in ways that I had only craved for years. They're an ugly, embarrassing blessing.
  7. My "Type A" personality. It's kept me going and fighting long after I wanted to. It's come up with new causes for me to lend my voice to, and has pushed me to join and start and take part in things I never would have without it.
  8. My support system. Sometimes it feels like there's no one there, but even on my worst days I know there is at least one person that I can turn to.
  9. Information. Knowledge is power. Period.
  10. Bare necessities. I know that even though POTS isn't something I asked for, and that it's been difficult, so far I've been lucky enough (through family support) to have food to eat and somewhere to lay my head at night.

1 comment:

  1. Type A personality, I definitely agree! I heard that most people with POTS/EDS have type A personality, too! (who knows if it's true?) Also, without the internet and the chance to talk to other POTSy's knowledge would be so much more limited! I couldn't imagine my health without my support system and other POTS friends :)

    Love your list. I will be making one soon!

    xoxo
    Erin

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