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, August 15, 2011

(Slightly) Less Compression

I went and returned my last pair of compression stockings, and they offered to give me the pressure just below the one I had. They're going to call the doctor and see if that's acceptable. For now they exchanged them for me anyways because the other ones were 100% unwearable. (These ones are still insanely tight but I can at least get them on.)

If it is acceptable, then I'll have the order a tan pair
because they only had black and those stand out terribly when you're wearing shorts. Talk about inviting gawkers!

Amount of sleep: barely any

Diet:
- Breakfast: nutella on bread, 3 cups water
- Lunch: large baked potato, sour cream, butter, shredded cheese, 'bacon' bits. 1 cup dr. pepper
- Dinner: chicken, pasta, onions and peppers, 2.5 cups water, 1 cup lime fizz
- Snack 1: half a candy bar
- Snack 2:


Exercise/activities:
- walking the nature trail
- errands

P.O.T.S. symptoms experienced:
so far: cold extremities, exhaustion, arrhythmia, pounding heart, aches, nausea, headache/migraine, visual disturbances, shakes/trembles,

Misc:
-

Sunday


Amount of sleep:
barely any

Diet:
- Breakfast: nutella on bread, 3 cups water
- Dinner: homemade, fresh veggie pizza 4 cups water
- Snack 1: handful M&Ms, 3 cups water
- Snack 2:
pretzels, 1 cup dr. pepper

Exercise/activities:
-

P.O.T.S. symptoms experienced:
so far: cold extremities, exhaustion, lightheadedness, arrhythmia, pounding heart, aches, nausea, headache/migraine, visual disturbances, shakes/trembles, heat intolerance, chest pain, difficulty breathing

Misc:
- week 2 vitamin D supplement.

Saturday, August 13, 2011

tired

Absolutely exhausted today because I stayed up until the wee hours of the morning so I could catch the meteor shower. While I know it's going to aggravate my symptoms, it was well worth it. Besides, there are big storms moving in and that's already wreaking a bit of havoc with my POTS, so it's no extra harm done!

Amount of sleep:
about 5 hours. Stayed up late to watch the meteor shower

Diet:
- Breakfast: large bowl rice krispies with lactaid, 2.5 cups water
- Lunch: potato pancakes with sour cream, cheddar cheese and 'bacon', 2.5 cups water
- Dinner: pasta salad, 4 cups water
- Snack 1: handful M&Ms
- Snack 2:


Exercise/activities:
- bathing both dogs

P.O.T.S. symptoms experienced:
so far: cold extremities, exhaustion, lightheadedness, arrhythmia, pounding heart, aches, nausea, headache/migraine

Misc:

Friday, August 12, 2011

Stressed.


Out of clutter, find simplicity.
- Albert Einstein -


Amount of sleep:
about 4 hours. horrible nightmares.

Diet:
- Breakfast: 3 pieces cinnamon swirl bread, 2.5 cups water
- Lunch: homemade pasta salad, 1 cup dr. pepper
- Dinner: steak with baked potato, 1 cup dr. pepper, 2 cups water
- Snack 1: handful M&Ms, 4 cups water
- Snack 2:


Exercise/activities:
- up early and walked around the nature trail
- laundry and cleaning

P.O.T.S. symptoms experienced:
so far: cold extremities, exhaustion, lightheadedness, arrhythmia, pounding heart, anxiety

Misc:
purpleish hand

Thursday, August 11, 2011

Interesting Info.

I was doing some research this week on a topic I was curious about: POTS+ birth control pills.

I went off of the pill well over a year ago because it was making the symptoms of my as-yet-undiagnosed condition much worse. My chest hurt, my flutters were worse, etc. Recently, I've been debating going back on it for the regulatory benefits (I find that the addition of Midodrine to my system has really thrown off my cycle- something I have to ask my doctor about) as well as the obvious protection benefits.

So, out of curiosity, I took to the internet to see what the internet has to say about POTS and birth control pills.

What I found was a bit surprising to me. On a dysautomnia message board - the topic was POTS/birth control- I found out that quite a number of birth control pills contain diuretics. The benefit of this for a 'normal' woman is that it should help with the bloating that comes before/with your period. They can also help to lower your blood pressure.

For a POTS patient, having a diuretic is the exact OPPOSITE of what is needed. Diuretics aid your body in ridding itself of water; a POTS patient needs to retain water and salt to keep their blood pressure and blood volume up.

So, it would seem (though I'll ask just to be sure) that birth control pills/patches are out of the question. I'm not sure about other methods, but I would assume they would be safe as they're not introducing diuretics into the body. This also means that period-related aids that contain diuretics are not recommended; such as Midol or Pamprin. (I don't use them, but it's good to know and share I think.)

Very interesting.

Gorgeous out

Still feeling pretty awful...but the nice part is that it's beautiful outside.
We have the windows open and it's nice to have the fresh air in the house.

Amount of sleep:
about 6 hours. Horrible upsetting nightmares.

Diet:
- Breakfast: piece of breakfast strata, 2.5 cups water
- Lunch: bologna, cheese and crackers lunchable with capri sun. 2.5 cups water.
- Dinner: pasta salad, 2 cups dr. pepper
- Snack 1: handful m&ms, 2.5 cups water
- Snack 2:


Exercise/activities:
-

P.O.T.S. symptoms experienced:
so far: headache, cold extremities, exhaustion, lightheadedness, arrhythmia, pounding heart, chest pain, depression

Misc:

Wednesday, August 10, 2011

Yuck.

I've been up since 7am because my POTS has been so bad. It's been a long time since I've woken up in the middle of the night gasping for air, but that's what happened this morning.
My chest hurts, my heart's pounding and I can't breathe.
I'm not pleased.

Amount of sleep:
about 6 hours with weird dreams.

Diet:
- Breakfast: slice of bread with nutella, 2.5 cups water
- Lunch: mini potato pancakes with shredded cheese, sour cream and 'facon', half an apple, 1 cup iced mocha
- Dinner: n/a (was feeling too sick)
- Snack 1: few slices cinnamon bread, 2.5 cups water
- Snack 2: 2.5 cups water


Exercise/activities:
-

P.O.T.S. symptoms experienced:
so far: headache, cold extremities, exhaustion, dizziness, heat intolerance, arrhythmia, pounding heart, chest pain, depression, nausea

Misc:
-