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."

Thursday, December 30, 2010

New Year's...

Here's wishing you all a safe and Happy New Year's!

Tomorrow is New Year's Eve, and it's the last holiday I have to get through (thankfully).

My mom decided that this year she wanted to do something special, so we're going to a pretty pricey restaurant in the area. To be honest, I'm dreading it. Eating in restaurants makes me nervous because I've had a lot of bad luck with them. Plus, my mom makes me incredibly anxious so trying to eat with her is a nightmare.

Also, I know it's superstitious, but the last 3 years I've been sick every New Year's. So I'm extremely nervous about this dinner tomorrow.

So, cross your fingers!

Tuesday, December 28, 2010

ugh.

I'm wondering if trying to gain weight would go a lot better if I didn't live at home.

My mom and I haven't always had a great relationship, but now that she's going through menopause? Forget it. I'm fending off mood swings a hundred times a day.

On top of that, she feels like she knows everything because when she was my age she got sick once too. So she feels the need to dole out advice and shove food down my throat (or harp on me about it) constantly. If I say something she doesn't agree with, it's "you need to go to therapy." -or- she gives me the silent treatment and slams everything. (we're talking stupid things...like, I say I don't like a show she does).

Clearly I need therapy for that *rolls eyes*

She's constantly cutting me down when she's not throwing a temper tantrum and it makes me feel like hell about myself so I stop eating. Which, of course, only makes her harp on me more.

Hell, I can't wait to get out of my house.

Sunday, December 26, 2010

Holidays survived!

Well, the Christmas holidays are over!

On the whole, I'm quite pleased about them.

Christmas Eve? Went exactly according to plan. I didn't even get my usual anxiety about it! The only issue, was that when we (my boyfriend and I) arrived, the rest of my family decided to eat really early - which is what I was trying to avoid. I planned on being there, watching them open presents, and then leaving before they ate so I wouldn't be the only one not eating. They decided to change the order and eat first, so that was awkward.

Christmas Day? Oh the day I was dreading. My mom makes a ton of food and is very pushy about it, and my boyfriend's family wants me to come for dinner (which I've already talked about). Things went mostly according to plan. Got up, presents, brunch, exchanged with the boyfriend, THEN showered (ugh I hate waiting that long but I hat to wait for hot water), then had dinner. I was starting to get really anxious about eating then going to see my boyfriend's family but I sucked it up and did it. I ate, waited about an hour, then went to his parent's house. This is huge for me. I could easily have backed out, but I didn't.

Seeing my boyfriend's family was interesting. They just got a new puppy (it's cute, in a you're-adorable-but-not-so-cute-I-want-to-take-you-home kind of way) and his dad was really happy to see me. I love his dad, the nicest man I've ever met. Now that my dad doesn't live here anymore, I could easily see him being my surrogate dad. My boyfriend's mom? Didn't even come say hi to me. It was odd, especially seeing as she's the only who constantly asks him if I'm going to show up. To be fair, I could have gone to see her but she was busy with other people. I stayed about an hour then went home. I would have stayed longer, but something from dinner did not agree with me.


Anyways, on the whole- I made it! I pushed myself and made it through. It made my boyfriend and his dad really happy, so it was worth it. I even managed to eat normal meals and extra food instead of stopping eating out of anxiety. I'm very pleased with how the holiday turned out.

Thursday, December 23, 2010

Holiday Game Plan

To all of my readers, have a very Merry Christmas and/or Happy Holiday!


I'm a very...schedule-oriented person. Let's just say it's the OCD in me. In some ways it's great; I get to pick my schedule and get it done. In some ways it's not great: getting off schedule is very...upsetting to me and can throw off everything.

So, tomorrow (Christmas Eve)'s plan is: Get up, get stuff together, go to my Aunt's with my boyfriend, then come home and have dinner. Yes, I'll be eating alone, but I'm okay with that.
I would go with my boyfriend to his family's dinner, but I absolutely hate his cousin - who is hosting this year's festivities because the person who usually does is in the middle of a move.

Christmas Day: Get up, open presents, shower, eat brunch, exchange presents with my boyfriend...then eat dinner, and possibly go to my boyfriend's house after they eat dinner. I know I should go there for a meal, but my sister flew home for Christmas so it would be rude to ditch. Plus, it's too stressful to have a meal with all of them (see my last entry). But, I may go after to see everyone and say hello then come home.


Monday, December 20, 2010

Feeling the pressure...

Christmas is this week (obviously) which means huge family get-togethers and lots of food. Sounds like everyone's dream right? To me, it's a nightmare.

My family, extended and immediate, have grown distant in the last year or so (something that I'm having a hard time coping with) but my aunt has decided to hold a Christmas Eve 'dinner' that everyone's invited to.

First, it's going to be awkward considering how my family has drifted apart. Second, and more importantly, everyone knows I was recently in the hospital and they will be trying to force-feed me the entire time. They'll comment on my weight, and be counting my calories while I sit there. It's extremely stressful and anxiety inducing. Who wants to eat knowing/feeling that everyone around them is keeping track of everything that goes into their mouth?

Plus, it's not just my family. My boyfriend's family has invited me every year to spend the holiday with them. The first year we were together, I did. After being there with them, I don't think I could do it again. They all eat a repulsive (to me) amount of food - we're talking...one slice of every dessert (8 or more) for EVERY person. Plus they drink a lot, which makes me uncomfortable. My boyfriend's mom is a nurse, so it's the same deal. She's (unintentionally probably) counting the calories that I eat and constantly pushing food on me. Which I'm sure is well-intentioned, but makes me extremely uncomfortable and gives me horrible guilt to turn down. So, for the last few years, I've skipped out which I feel terrible about. But I know if I go, I'll be harassed about what I'm eating, and I'll be extremely uncomfortable trying to eat in front of people who eat an inhuman amount. (Plus, it's nauseating to watch someone eat that much food)

I know it's still almost a week away, but I'm not sure what I'm going to do. I'm already feeling the pressure!

Friday, December 17, 2010

Measurements

Out of interest, I found a link off of WebMD's website that tells you your BMI (body mass index) and where you are on the healthy weight scale.

Not surprisingly, I'm underweight. My Healthy Weight Range: 104-141lbs.

Personally, I don't get that. You can't tell me that if I gained 15lbs I would be just as healthy as my sister who is closer to 140. She's overweight, and certainly not healthy (yes, I know there are other factors in there as well) but I think that range is far too broad to be appropriate.

My BMI is 16.1 and 'healthy' is 18.5-24.9 (again, holy range).

A different website says I should aim for 2413 calories per day to gain one pound per week. Also, it tells me that to maintain my current weight I'm only eating around 1500 calories per day. I know for a fact that's not true (I've kept food journals) and doctors have told me that that's approximate. Just like for people who lose weight, sometimes doing only what they tell you is just not enough so people have to eat less than they're supposed to (or in my case more).

I think in this case, I'll split the difference and try to gain half a pound a week, or about 2000 calories a day. I'll try to exceed that as much as I can see as I've tried that before and it didn't work but I'll give it another shot.

Tuesday, December 14, 2010

Official Post-Hospital Weigh In

I stole this from my progress entries on 43Things, I thought it was worth mentioning here:

Last night, I decided to weigh in; something that I've been avoiding ever since I came home from the hospital. I knew that I'd lost some weight (they weighed me at my follow up) but I had no idea how hard readjusting to food would be. (I give people who are lost at sea or stranded in a desert for an extended period of time a LOT of credit.)

So, I figured to make myself feel at least a little better, I would weigh myself last night. I ate like a pig yesterday, and thought it might stick with me.

The result: 91 pounds.

Yeah.

I lost more than 7 pounds in a week and a half. That's almost my entire year's worth of work toward gaining weight. I'm trying to not be _so_ hard on myself, because most of it was out of my control, but it's hard to find the urge to try. It took almost a year of pushing myself to eat to the point of wanting to throw up to gain that weight, and now it's gone and I have to start all over again.

How incredibly frustrating/annoying/disheartening/you name it.

Monday, December 13, 2010

Progress and setbacks...

So, I had my follow up with a GI surgeon and he said that I'll get another CT in January (happy new year to me- not) and if my appendix is still swollen then, I'll have it removed.

I'm torn on this. On the one hand, no one wants to have surgery. On the other, once it's out I'd never have to worry about it again! The surgeon also said if they remove it, it would be an outpatient procedure and would only take about 20 minutes. Awesome. That's because it wouldn't be infected or ruptured; otherwise it would be a huge invasive surgery. It almost makes me want to get it anyways lol! Plus, I would hate to have spent all this money and gone through all of this for absolutely nothing. Either way, we'll have to wait and see.

The worse part of all of this is that I'm having a huge setback as far as weight gain goes. Trying to eat again for the first time in almost 3 days was extremely tough. It was like learning how to eat. I had to start with easy foods and work my way up to eating something that was substantial and if I ate something that wasn't right, I knew it almost instantly. I would get a horrible stomach ache and feel sick for hours.

So working into eating has been a really slow process, and I lost quite a few pounds. A few pounds seems like nothing to pretty much everyone...but when it's 6 months of serious weight gaining effort for you, it's extremely disheartening.

Thursday, December 2, 2010

three hospitals and two days later...

I went to the GP, and was immediately sent for a CT with Barium contrast (which made me horribly ill). Barium is the most repulsive thing EVER. But I forced myself to do it, and was rewarded with a lovely "your appendix is inflamed and you have a lot of fluid in your abdomen, you need to go to the emergency room NOW."

So the emergency room is where I went. They weren't sure I had "true" appendicitis (meaning it would burst or rupture) so I was given a room, a lot of antibiotics and kept overnight- which was HELL. My roommate was incredibly noisy and occasionally verrrrry drugged up and moaning. Plus they woke us up every 3 hours to check our vitals.

I hadn't showered before I went to the GP because I figured, I'd go and they'd say it was fine and would go away and I'd go home and shower. How wrong I was. 2 days in the hospital later, I felt repulsive and they wouldn't let me shower because it was 'introducing liquids into' my body. So, I got to wash my hair in the sink, and couldn't change my clothes or wash anything else- gross.

I also hadn't eaten before the GP in case they sent me for tests, so the last I'd eaten was Tuesday night around 5. Because they weren't sure if/when I'd need surgery, I wasn't allowed food. After 4am today, no liquids either. So, I went 48 hours without food, and 46 hours without liquids (I drank some for about two hours) although they did give me an IV.

Today around 5pm I was officially discharged, after 2 rounds of intense antibiotics and starved. They aren't sure if it was moderate appendicitis, or a ruptured cyst but thankfully my vitals got much better and my lab work. (This morning around 6 am the Resident Surgeon said he thought I'd go home- what took 11 hours I'll never know.) I have a follow up next week.

So now, I'm finally home and exhausted. I took a showered right away, and made some pancakes to eat and am looking forward to (hopefully) a decent nights sleep. I'm still extremely shaky and disoriented from being literally starved. Plus without food, my heart meds don't work right so my blood pressure is all over the place (which also makes me feel sick). So we'll see.

Wednesday, December 1, 2010

Pain still around...

I still have the pain in my abdomen, and it's irritating as hell. I don't really have a fever and no nausea/vomiting *knock on wood* so the odds of appendicitis are remote, but it still hurts and my mom and Zack are worried about it. So, tomorrow we're going to hopefully get it checked out.