It's a slow week.

Not much is happening for me this week. John got all four of his wisdom teeth taken out yesterday so he's got the rest of the week off, and I just don't have any appointments. I would have had therapy yesterday but John cancelled it because he would be too doped up to take me. ha. Anyway, hey, I'm not complaining. It's nice to be able to do whatever without having to think about all my medical bullshit.

A few things I'm keeping tabs on, though. I'm in the process of switching infusion companies, from Amerita to ThriveRx. We have no problems with Amerita, they're great, but ThriveRx just seems much better. I'm also still looking into having my TPN adjusted... I have an appointment on the 20th to see a dietitian/pharmacist/whatever to discuss that. My wheelchair has been approved, waiting to hear about that. That bedge pillow thing? Not approved. I didn't think it would be, considering it's a piece of foam that costs $300... I mean I could easily get something much cheaper at Wal-Mart if I really needed it.

This week was the start of my home care, and we were able to keep the nurse I had last time. She's absolutely incredible. Very professional, nice, funny, down to earth. And she always knows what the fuck she's doing. My dressing change hurt a little, and we're gonna try to get some lidocaine spray. While she was here we talked about what she's missed since she was last here (like November 2012), including my diagnosis, New York, my symptoms, my stupid doctors, etc. She checked my vitals, changed my dressing and needle, checked my supplies. It's so great to have her back.

Kinda sad that I missed therapy this week. I was looking forward to showing Pamela a scrapbook I've been keeping. It has a bunch of old family pictures, my parents, me, my aunt and cousins, sisters. I miss how close my family used to be. And I really miss my Aunt Lynn. It's a shame, how she has to live... but... that's another story, let's not go there.

I've been making bracelets and keychains for people, sending them out. That and watching Doctor Who keeps me busy/entertained. We get paid tomorrow, so I've been planning my bill-paying session, and making a grocery list. Since I don't eat anymore our grocery bill has been cut in half, pretty much. It's the only nice thing about not eating.

I think this Flagyl is working, but I've been running to the bathroom every few minutes it seems. That makes trying to relax or going places very difficult. No matter where I go the very first thing I look for is a bathroom, and I make sure I'm close to it. Isn't that an awesome way of living? Constantly thinking about the bathroom and trying to concentrate on not shitting yourself.

And that, my friends, is where I shall end this post.

Wow.

Isn't it absolutely amazing how we change over the years? I just spent about an hour and a half reading a journal I had written in from December 2008 to like... September 2010. I can't believe how dramatic I was during high school. Always worried about John cheating on me, complaining about not being happy at home. There was nothing wrong with my home life at all. I was just a selfish teenager. There were so many entries where I'd go from hating my life to happy as ever. It's kind of funny, looking back. But then I realize how nowadays everything's so different. For example, the MNGIE is here. That definitely changed my perspective on things.
Anyway, I just can't believe how much stress I let myself go under. I still do it, too, I over think everything and I always have to know things that maybe I'd be better off not knowing. My situation is difficult because I am able to admit these things, my flaws and whatnot, but I don't know how to go about fixing them or coping.

I was going to wait until tomorrow to blog, but I figured I'd get these things down tonight.
Today was terrible. We went to get my dressing changed today and Leo (the nurse who changes my dressing each week) wasn't in, so we have to try again tomorrow. We're going to start calling before we go because even a simple trip to the clinic exhausts me now.
I had a little breakdown when we got home because I was pissed that nothing was going right. My PCM sucks, and it seems like he isn't doing his damn job. Then there was a bunch of confusion with my GI appointment that's next week, and it was almost cancelled. Which would have been absolutely TERRIBLE because it takes them forever to get me in for an appointment, and rescheduling this would be hell. Not to mention I need to discuss a g-tube option with McNally. So I need this appointment.
I ended up getting frustrated, John ended up slamming the door when he left for work, and I ended up screaming bloody murder and crying myself to sleep. The two-hour nap made things a little better.

I've been making friendship bracelets. So far I've made 3; one for Kaitlyn and Kathy, and one for myself. I'm pretty proud of how they've been coming out. I figured out how to create my own patterns, so that's awesome.

I have therapy on Tuesdays now.
Looking forward to taking my bracelets and my beads to share with Pamela.

I hate Sundays.

It only means Monday is right behind it. Ugh. I hate the start of a new week.

There's a program called Beads of Courage that helps families and patients cope with their illnesses, and I wanted to get involved somehow. I'm almost too old to apply for the program, so with the help of a friend, I decided to start my own. I had to tweak the guides a bit but eh, same difference. I tried to add beads corresponding to as much as I could remember. Each bead represents an obstacle or milestone I've gone through in the last 5 years. My name represents when I was diagnosed. Some of the obstacles are condensed because, well, my string would be 10ft long if I included everything. Right now this string is about 3ft long. I'm hoping this (and the rest of the crafty stuff I'm starting) will help me cope with all I'm going through.

The rest of the crafty stuff I'm talking about includes friendship bracelet-making, and various things involving gimp string. I've been wanting to draw more, but every time I get my materials out nothing happens.

I ran out of my script of Zantac Thursday and just got some OTC today. Between then and now I've been absolutely miserable. Last night I barely slept at all because I spent most of the night in the bathroom dry-heaving. It's really uncomfortable when you have nothing in your stomach but get the urge to vomit anyway.

This weekend was a four-day for the hubs, because of President's Day. It's been pretty fun. Friday we had our friend, Kathy's son over (who of course stayed the night), and hung out with Spencer. I tagged along to gun places and went to lunch with them. It was fun and good to get out, but I was achy and nauseous the whole time and eventually barfed at the brewery we went to... good times...

Austin, John, and Spencer

Saturday, we went to Walmart and I bought all my artsy supplies. Also went to the mall for a bit, and I got some Auntie Anne's pretzel bites. Best ever! I couldn't eat them all but it was delicious. Today was slower than yesterday; Austin went home yesterday afternoon so John and I had the day together. I had forgotten a few things for my beading, so we went to Michael's to pick some stuff up. Then we got groceries and came home, him to his video games and me to my beads. It was a long day.

My PCM appointment is Tuesday. Sometimes I hate holiday weekends, especially when there's something you really want to get over with. Mehr.