A post.

Like every other week, I'm not looking forward to this one. Honestly I'm just tired of it all. I'm tired of going to my appointments only to come home depressed, exhausted, and disappointed in how it went. I'd much rather live my life and just continue to take what I get. I mean, hell, it seems like they're not even trying for me anymore.

I have a few this week. Tomorrow is hematology and Gentiva (the home health company) is supposed to call us. Tuesday is therapy. And Wednesday two ladies from ThriveRx will be visiting me to check out my TPN and see what can be done about my weight, and I have my GI appointment, in which I'll bring up the g-tube again. I'm doubting that he'll condone it. Somewhere in all this, my case manager will be in contact, either regarding my wheelchair or an appointment with my PCM.

Lately my abdominal pain has been unbearable. It's not the pain I feel when I perforate, thank god, but it's more like an annoying cramping/nauseating pain... The best way I can describe it is really bad menstrual cramps. I've been taking midol PM every night for the past three nights to help me sleep. I need to ask for pain meds and/or sleeping meds. I don't even care about being knocked out anymore, I just need to get away from all this discomfort. I can't live in my bath water (oh if only...).

My diarrhea has gotten worse, too. Go figure.

Right now my stomach is gurgling and my legs are weak, like I need food, but I can't eat. I just hooked up my TPN, so that feeling should subside in about an hour. Water doesn't fill me up anymore, and I keep having immense cravings for food. I try to avoid cooking for John now because it either makes me nauseous or it makes me upset and hungrier.

None of this is fair.

I saw a post on facebook a bit ago, that said, "God gives us only what we can handle. Apparently God thinks I'm a bad-ass." That's how I feel. It's like he's playing with me, poking at me like I'm a fucking voodoo doll. Just sitting back and seeing how much I can take. Well, God, I don't feel like I can take much more of this.

The Big Apple

New York, New York!

Okay, so it took me a while to decide to try this again, after I started a post two days ago about this trip, finished it this morning, only to lose it completely. So it probably won't include every detail of my trip like I had planned. Needless to say I am still very upset about it.

I guess I'll start with a little list of highlights that happened:

My power port needle set off the security thing in the Colorado Springs airport, and I was patted down by the TSA. That was interesting.

Our flight to Dallas got upgraded to first class, I guess because I was in a wheelchair and they wanted me to be comfortable. Nice people. Thanks, American Airlines.

Landing in New York, we flew over the Statue of Liberty and she looked about an inch tall. Very cool to see such a major landmark!

It took us about 3 hours to find our hotel, and by the time we did, I was miserable and cold and I already wanted to go home. I don't know why they gave us a rental car in New York City.

This was the view from our hotel.

The next morning we had to get up early to get ready for my appointment. We knew we'd have to leave a few hours early if we wanted to get there on time, so we left at 8:30. My appointment was at 11.

Not even five minutes in the cab, and we wreck. An hour and a half later. We get out and find a new cab.

We finally arrive at the medical center, sign in, and then wait another hour for Dr. Hirano. I'm already exhausted and John has to be stressed out as hell.

The appointment pretty much goes like this: We discuss my history, my symptoms, what MNGIE is, etc. Hirano tells us about the trial and then tells me that I wouldn't be eligible due to my diverticulitis. He says there are other options, such as a bone marrow transplant elsewhere, or dialysis, or platelet treatment, and some other things I guess. But by now I'm only half listening and going in and out of attention because he said that all of these could be fatal for me due to my diverticulitis. Tests are done, I'm told my ptosis is evident and I have minor muscle weakness. More testing is done and we don't get back to the hotel until around 4:30.

The view from a bridge at the medical center.

John hadn't eaten a thing all day, so we order pizza and Chinese take out.

Next morning, we get up at 7, pack, and call down for our rental car. We miss our flight because the idiot valet brought us the wrong car and we had to wait for him to bring the right one. On our way to the rental car place, we drove through Times Square and down Broadway, so I got to see all the big billboards and Times Square up close. That was neat. Some pictures:

So. I guess the trip overall sucked, really. The entire time I felt horrible, John and I were both stressed and overwhelmed at the city. And my appointment only made me more upset about my situation. I don't ever want to go back. Maybe if I were actually healthy, and had time and money to spend, New York City would be a fun place. But I'm not, so I have absolutely no interest in making a return visit.

My thoughts on the whole thing? I'm sad. I'm angry at my diverticulitis for keeping me from treatment. The fact that anything could kill me just sucks completely, and it's not fair. I have no one to blame, and that makes me even angrier. I want to blame God, but I don't even feel like he's beside me anymore. I don't think I've ever felt him beside me. I'm afraid of what's to come, but I know that I need to stop living in fear and just accept it all. It's hard to take in, though, and putting so much effort into trying to be calm and collected is the most exhausting thing I've ever done.

I guess it's back to my weekly appointments and nighty nausea.

Nerves.

I got my dressing changed for the first time today. It wasn't a big deal, actually. I was expecting a lot more pain, but the dressing doesn't even itch too bad. So that was a huge relief.

Tomorrow morning we leave for New York, and I haven't even started packing yet. Not that I need to pack a lot, mostly paper work and medical supplies. We'll only be there for two and a half days, so I don't need a lot of clothes. I don't know if I'm more excited or nervous about the trip. I've never been to a city bigger than Atlanta before, and lord knows I have this god awful country bumpkin accent, haha. But I've heard that New Yorkers are actually very friendly to tourists, and I hope that's true. Coloradans have been pretty friendly, but these people are more like a rural friendly, especially in the springs. I don't know how to explain that.

Anyway. I think I'm more nervous about meeting Dr. Hirano. Yeah, that's definitely it. Excited about seeing New York, nervous about the reason I'm going there... Oh, bother.

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