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.
In December 2012, I was diagnosed with Mitochondrial Neurogastrointestinal Encephalopathy. (try saying that five times fast!) This blog is to help me cope and try to share with friends and family in hopes to spread awareness about this rare and terrible invisible illness.
Showing posts with label love. Show all posts
Showing posts with label love. Show all posts
Wednesday, March 13, 2013
Thursday, February 14, 2013
Happy Valentine's Day! ♥
Love is in the air and the sun is shining and birds are singing and I feel GREAT!
...aaand I am totally lying through my teeth.
Nah, it's been an okay day I guess. John gave me my Valentine's gifts like a week ago, though because he simply couldn't wait. haha. He got me a card, in which he wrote a sweet note in), a box of chocolates (which I can't eat, but he saw me eyeing the box at the store), and some iTunes credit. He knows me oh so well.
...aaand I am totally lying through my teeth.
Nah, it's been an okay day I guess. John gave me my Valentine's gifts like a week ago, though because he simply couldn't wait. haha. He got me a card, in which he wrote a sweet note in), a box of chocolates (which I can't eat, but he saw me eyeing the box at the store), and some iTunes credit. He knows me oh so well.
The card says, "I love you so much baby, your my everything.
Id do anything for you and I hope you continue to stay strong. Im always here for you.
Ill love you forever, never less always more.
I Love You XOXO"
I love him so much, grammatical errors an' all. haha.
So today we went to Musashi's for lunch. I had been craving it for a few months now. I got what I always get, the #8 (filet mignon) with fried rice and a Shirley Temple. John got two orders of fried rice and two orders of shrimp. We were the first ones seated because we got there as soon as they opened, and then everyone else started coming in, so I'm glad we were there early.
As always, the food was amazing. I couldn't finish even half of it, though; the rest is sitting in the fridge. Ever since we left the place my tummy's been rumbling and I've been pretty uncomfortable. And when we got home I went straight to the couch to lay down. All day I've been having to run to the bathroom every few minutes, and tossing and turning with my heating pad on high...
But I'll be damned if I let this get me down today. I went to Musashi's Japanese Restaurant with the love of my life for lunch, and all this gross uncomfortableness was SO worth it. So suck on that.
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