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."

Tuesday, February 22, 2011

harder than I thought

I never knew recovery would be so difficult.

You literally can't do anything for 6 weeks. I mean...zip.

For someone who constantly is moving around, it's almost torture!

However, I know I'm still doing too much. My insides swell up, they hurt me and make me unable to pee. It's ridiculous.

I'm only 2.5 weeks in to my 6 week recovery period and I'm already going crazy!

Tuesday, February 15, 2011

twoish more weeks!

Well, today was my follow up...

The surgeon said I looked good! The swelling in my abdomen is normal and to be expected. It turns out they actually made a surgical site in a new area: two in my lower abs and one in my belly button. Normally, there's one in the belly button, one in the lower abs and one in the upper abs/rib cage area. So the 'new area' surgical site is the one that's swollen, but normal so that's good.

I should be back to 'normal activities' in two to three weeks. I'll be bumming around until then and still in my pjs until the swelling goes down more.

Monday, February 14, 2011

mmm recovery

I'm just over a week into my recovery, and (thankfully) I'm feeling a bit better.

When I first got home, I was horribly nauseous for the first three or four days. I couldn't eat. I ate pureed baby food and saltines and dropped a ton of weight. I was taking at least 16 pain pills a day

(don't be concerned, my doctor said I could take 4 motrin every 6 hours = 16 pills...I wasn't overdosing myself)

Then, finally the pain broke. I'm still incredibly sore and uncomfortable, but I can breathe.

A section of my abdomen is pretty swollen and some blood blisters have popped up, but tomorrow's my follow up so we'll see.

Hopefully, I'll get a better idea of what kind of recovery time I'm looking at.

Tuesday, February 8, 2011

surgery update

I got to the hospital two hours early, and it turned out the surgeon was running ahead of schedule. I wasn’t there fifteen minutes before they stole me away, put me in a hospital gown, and I was saying goodbye to my boyfriend and mom. All in all, better that way. Better than having two hours of anxiety first!

I woke up over five hours later. The surgery only took a half hour, but I had a really hard time with anesthesia again (I guess POTS isn’t why I had problems the first time). Two rounds of benadryl, and three rounds of anti nausea stuff and I was finally able to go home.

My instructions? No driving for a week, no stairs for a few days, no lifting anything for 6 weeks(!) (Holy crap, 6 WEEKS?!) That means no laundry, no exercise, no cooking, no cleaning, no nothing. I’m literally an invalid! The hardest part? Not being able to get into bed with my puppies or have them snuggle on the couch. (Today, I felt better so I thought I would try…and my dog stepped on my stomach. HOLY PAIN!)

Yesterday, I took my first shower. It was the most wonderful, and excruciating, experience. They waaaaaay underestimate the pain. I’m maxing out on pain killers and am not getting relief. The first two days, I couldn’t even get to the bathroom on my own. The reason it’s so painful? They inflate and stretch out your entire abdomen wall to get to the appendix better (think: you worked out your abs way too hard for days). They also make three cuts through your abdomen wall, and those are extremely painful too. (Maybe pictures to come, maybe not…I don’t want to gross anyone out lol)

Really, it shouldn’t be shocking. Think about how often you use your abs. Getting up, standing up straight, walking, balancing, rolling over, going up stairs, going down stairs, sitting, leaning over to wash your hands in the bathroom, turning a doorknob and opening a door, etc. It’s incredible what your abs do, and you don’t become aware of how you need them (and how often you use them) until you’re unable to! I can’t blow my nose, cough (which is tough because having the breathing tube down your throat makes your lungs make junk to repair themselves so you have to expectorate it) or sneeze.

Plus, your back/arms/shoulders hurt from compensating. I can’t use my abs to get up, So I have to rely on my arms/shoulders/back to push myself up.

Thankfully, ice packs and heat packs have made it tolerable now. If I try and swallow another pill, I’ll choke on it. I’m not a pill taker, and have already gagged on them from taking so many. (On a sidenote: My boyfriend has wanted me to get a heating pad for over 2 years because my cramps are so bad. Now, because of the severe abdomen pain, I need one…so he got a kick out of the fact that I finally have one lol)

I’ve just finally started to eat solid foods. This is really going to kill my weight gain. Last night, for the first time, I got more than two hours of sleep. Hopefully, that’s a sign of finally recovering!

Sunday, February 6, 2011

three words

holy excruciating pain.

more update to come later in the week

Friday, February 4, 2011

It's a go

I had my bloodwork this morning (long story) but I'm officially cleared for surgery this afternoon.

See you all soon!

Tuesday, February 1, 2011

Small Blip

It turns out that my potassium level was actually low instead of high.

Which, generally, is better. It's always easier to add more of something than to take it away.

So, for the next few days I have to take a potassium supplement, and then I'll get my blood retested the day of my (I hope) surgery and they'll make the call then.