Wednesday, September 30, 2009

POTS Petition

Do you want to raise awareness for POTS and Dysautonomia? Of course you do!

*Sign the POTS petition!*

Just need your name and email address, takes about 10 seconds. Or you can sign it anonymously too! The group that wrote it is working towards getting enough signatures to earn national media attention for POTS. The agony we've been through, and the fact that our doctors haven't even heard of it -- time to make some NOISE! (*air horn* haha)

Seriously. Do it now. Send it around.



Sunday, September 27, 2009

Kit Kat Bar

Still feeling crummy. The constant battle of it, physically and mentally, completely drains me. Focusing everything on my health right now. Numbers are weird: 135/80, HR 44. What a mess.

But we got good news! My dad's company just announced that starting next year I can't be denied health insurance based on my status as a student. Huge relief. My mom is working so hard, talking with all the docs, profs, and insurance reps. What an awesome blossom, my favorite researcher. Ahh and I am so happy about 1/1/10!

Break me off a piece of that... (Andy Bernard... The Office... Anyone?)

dunder mifflin,

Wednesday, September 23, 2009


Navigating the highs and lows, pain and paperwork. Exhausted. Haven't been able to make it to class, but trying to keep our options open. Complicated, unpredictable stuff.

Favorite song of the moment: Clock of the World by Krista Detor. Brilliant voicing.

love and love,

Monday, September 21, 2009



Basically bed-bound. Day 10. Really tired. All the time.

Working with the docs and school administrators to get special accomodations...?

...gonna get through this. Absofruitly.


Friday, September 18, 2009

Mega Warheads

Extreme fatigue; nausea; chest pain. Missed class again this morning. Ugh. One day at a time.

My numbers are looking better, but I could really use some prayers for pain relief.

We're trying to figure this out -- could it be the "fall slide" that some POTS patients experience with the change of seasons? Who knows. *Shrug*

roller hockey,

Thursday, September 17, 2009

Sour Patch Kids

Activity has been very limited for the last six days. Super tired. Pain, esp shoulders. Palpitations. Rar. Missed class yesterday. Womp-womp. Major, major womp. : (

lying down 111/55 ..... HR 60
sitting up ...113/62......HR 69
standing .....93/62 ......HR 84

Today- titrate up the Midodrine to 10mg 3x/day and see how it goes.

Relapse is such a strong word. I prefer Remix. Not what you'd expect, so find a new groove and let the beat rock.


Saturday, September 12, 2009


Last couple days, not so good. Exhausted, palpitations, joint pain. So frustrating. Agh.

BUT I am so, so blessed! My blog lurkers are the coolest. Hang in there, POTSies!

  • Here's the National Dysautonomia Awareness Week event page on Facebook.

More later, gotta rest!

Keep those spirits up, yeah yeah?

Tuesday, September 8, 2009

Take 5

Pacing, timeless jazz, and a candy bar.

Swim, school, rest rest rest.

Thinking fondly of Krannert and the School of Music,

Thursday, September 3, 2009

Almond Joy

This month's titles will feature - you guessed it - candy!

Starting classes at community college has certainly been a test, physically and mentally. My good hours are great, yet the bad days are totally consuming. It's a lot of uncertainty, but we're just taking it day by day. After exploring the droptions (ha), I changed my schedule, trying to space out my classes more. I need a lot of time to gear up and then to recover. The goal is to stay a full-time student. New sched: EnviroBio, Film, starting Speech in a couple weeks, and taking Linguistics online (oh the irony!).

For Linguistics, I like the online setup so far. It's such a relief that I can work around my own schedule. If I need to rest, no worries, I rest. I can choose to be "in class" whenever I'm feeling well. Like today, I'm having a really good day, so I took 2 weeks' worth of notes, just to get ahead. All the resources are right there. In terms of socialization and motivation, I think a real classroom is preferable. Plus there are still deadlines and papers and projects; this format is not for everyone. But in my condition, I think the option of an online class is fab ... especially when my mental clarity is good but my physical symptoms aren't always reliable.

Extra-Strength 5-Hour Energy? Get me a shovel, cuz I dig it.

This is your brain on B vitamins,

Most recent stats:

Temp: 99.5

Lying down: 128/75 ... HR 61
Sitting up: 120/78 ...... HR 59
Standing: 116/70 ........ HR 67