A Post of Importance... Kind of.

Today was a pretty big day for me. I didn't have too many appointments, but the one I did have was definitely an important one. I'd been waiting for this one for a while, thanks to the military and their stupid scheduling system, I have to make my appointments months in advance, so it's always a waiting game. Anyway, said appointment wasn't until 1510, so let's just back up a bit.

I woke up at 1030, still sleepy, of course. I was expecting the ThriveRx ladies to come by soon, so I couldn't go back to bed after I unhooked. They got here at around 1130 or so, and we discussed my history and my condition, my TPN options, etc. We also talked about Thrive and what they do, and I'm very interested in switching from Amerita to ThriveRx. They were extremely helpful and nice and I still can't believe they came from Denver for free to see me. They suggested something to add to my TPN that could possibly help me with my weight, but of course I forgot what they said, so I'll have to add that in later. *facepalm*

*UPDATE!*
The thing they wanted to look into is called Carnitine.

(Carnitine plays a critical role in energy production. It transports long-chain fatty acids into the mitochondria so they can be oxidized ("burned") to produce energy. It also transports the toxic compounds generated out of this cellular organelle to prevent their accumulation. Given these key functions, carnitine is concentrated in tissues like skeletal and cardiac muscle that utilize fatty acids as a dietary fuel. The body makes sufficient carnitine to meet the needs of most people. For genetic or medical reasons, some individuals (such as preterm infants), cannot make enough, so for them carnitine is a conditionally essential nutrient)

They left at like 1300, and then I had to get ready to go to Evans for our appointments. John had one at 1400, so I had to go with him. I waited for his doc with him until around 1445, then headed to my GI appointment by myself. I never have to wait too long for my GI appointments, so it wasn't too bad. And John was able to come to my appointment with me for the first time in forever for GI, so that was nice.

My GI doctor is Dr. Peter McNally, and he's pretty well-known across the country. I'm very lucky to have such a thorough and intelligent GI doc. We talked about how my symptoms were doing and whether the Xifaxan he prescribed me last month worked at all (it didn't), and we decided to try Flagyl this time to see how I do on that. He suggested I look into getting what's called a "bedge" which is a foam pillow-like thing that's wedge-shaped; it's supposed to help with GERD and acid reflux by keeping you elevated. We discussed my appointment with Hirano I had in New York, and he seemed pretty disappointed at how that went (same here, doc) but accepted the prognosis. When I asked him about having a G-tube placed, and explained that I knew the risks but I felt like it would help me, he told me he can see how I would benefit from it, but because of all the surgeries I have had, he wouldn't want to go that route unless I went in for surgery again. So basically, a G-tube will not be placed unless I absolutely have to be cut open again. Which is totally understandable, and that answer is much better than what Dr. Jung told me. At least McNally explained WHY. He also said that option would definitely be something to look into if it comes to surgery again.

After that appointment we went to see my case manager, Johelen, to tell her about ThriveRx and see what she could do about helping us switch, and to see if we could get Tricare to cover a "bedge"... Hopefully it works out with Thrive, because they seem much more knowledgeable about everything and much more efficient as far as supplies and TPN goes, so I would really REALLY rather have them as my infusion company. As for the "bedge" I don't know if Tricare will cover that, but it's worth a shot. May as well ask, right?

So that was today. Friday I have my iron infusion, so I'll have to hook up my TPN a few hours early the night before. Have to be at the cancer center at 0830 and I'll be there for about 5 hours for the infusion. Yay. Thank goodness I don't have anything tomorrow. I just want to take a day to sleep.

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.

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.

Sometimes.

Sometimes you have to be a total bitch to get what you want or need. Especially with doctors. I have a problem: I'm not assertive enough to get what I need. Doctor appointments make me nervous, and as much as I want something, whenever I bring it up to a doctor, and he turns it down, I go with the flow and just let him do whatever he wants. This is not the way to be when you're dying of a chronic illness. So I need to step up and fight for what I want regarding my treatment.

I have therapy in a couple hours... Last week was okay, there was no crying. This week I'm not sure how much talking there will be, because I haven't really had anything happen. I did have a small breakdown yesterday, though... I don't know what happened but I just started crying and couldn't stop. I needed someone to listen to me scream out my anger, but all I have are my cats, and when I screamed in my pillow they just ran away. haha... John wasn't home, so screaming and yelling was easy. I hope I didn't freak the neighbors out. Anyway, it made me feel better, and it tired me out enough to take a good nap.

I couldn't get to sleep last night though until around 2am. I was busy playing with my iPad/iPhone apps and researching diverticulitis in the small intestine. I found a research study article done on 3 patients, all over 65 years old, all women, who had diverticulitis in their small intestine. (Yes, I said over 65. So I don't understand why the fuck I have to deal with this. I'm only 20 years old. And the diverticulitis started when I was 16. It's not fair!!) In the study, two of the patients had small bowel resections (where they remove part of the small bowel), and were given antibiotics post-op. They were fine afterward. The third patient was like me, with diverticula all throughout, and they didn't want to risk anything so she didn't have any resections. They just gave her antibiotics and hoped for the best. She got better some I guess. But according to the article SBD (small bowel diverticulitis) is very rare, usually isn't diagnosed until post-operation, and there isn't any known treatments for it.

So, as far as I'm concerned, I'm pretty much screwed.

As for the MNGIE disease, I already know and have accepted that it'll only get worse with progression. Dialysis may help slow things down, and that seems to be the only option that isn't too risky for me. For the gastroparesis, I'm going to see what Dr. Jung thinks about me getting a G-Tube. I don't know how that will go, though.

I guess my spirits haven't been too great lately, but I'm still trying. I've been reading Bible verses like crazy. They do help sometimes, until I run across one that pisses me off or something. My high school chorus teacher sent me a book to read called Everyday Grace by Marianne Williamson. I've started it, it seems pretty good. I'm excited to finish it. It was really nice and thoughtful of Boehm to send it to me. She wrote me a nice note with it, too.

I think now I'm just more frustrated and angry than depressed about all this. Or maybe not. My feelings are always changing, I don't know...

Tonight we're going to a friend's house for dinner. I'm excited because we haven't hung out in a good while because of all the crap going on. She's cooking burritos for John that he loves so much. I'll be sipping on soup. I don't like burritos anyway so it won't bother me. I have been craving Musashi's food SO BAD recently, though, and if I don't eat it soon I might kill someone. ha.
I'm rambling now.

hm.