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 Rare Disease Day!

Er... Should it be Merry Rare Disease Day? I dunno.

So this week has definitely had it's ups and downs. Mostly downs. A few highlights:

• Dressing change went terrible. Details below.
• Choked on my own vomit; almost died. Very scary.
• Shared my beads and bracelets with my therapist, that was fun.
• Cooked a HUGE pot of spaghetti and had a breakdown.

All the while dealing with abdominal pain from hell. Not fun.

Mondays are my dressing change days. I go to the hospital, check in at the clinic, and wait for Leo to change my dressing and needle. This was the second time he wasn't there. Okay, so I'll come back on Tuesday, no big deal... A little irritated. Tuesday comes, we call and see if he's back. Nope. Now I'm pissed off. "He should be back tomorrow." Wednesday comes. No Leo. By now I'm blowing up Facebook, surely annoying all my friends, ranting and raving about being pissed and hating Evans and blah blah blah. I need my dressing changed pronto. One of my biggest worries is getting an infection and having to have my line pulled and replaced. I know it'll probably happen eventually, but I've only had this damn thing for a month. So John's head is spinning trying to find someone to change my port. He was waiting on a call back from the cancer center. The Evans ER can't do it, only god knows why. No one at my PCM's clinic can do it. I can't go to Memorial because of insurance reasons. Absolutely ridiculous. Finally, the cancer center calls back and says they can get me in. So we drive the 10 miles to their facility and voila! I get my damn dressing change three days late.

My experience there was incredible. We were only there for maybe 15 minutes, where going to the clinic at Evans would have taken an hour or two (YEAH). The staff was very nice. And even though I had to sit in a room full of elderly sick people who were receiving fluids and chemo and whatnot (reminded me of that movie, 50/50... anyone see that? Love it.), I felt very comfortable being there. The chairs were comfy, too. The nurse who came to change my dressing said my port looked beautiful, no sign of infection, aside from my skin being irritated from the dressing. She asked me like three times how we were on supplies, and gave us more dressings just in case. She changed my dressing in less than 5 minutes, and was even as gentle and sterile as she was supposed to be. My only problem, though, is the dressing she put on isn't really sticking very well, and even though she said it was safe to take a shower, I'm not gonna risk that. I just taped the sides down.

After that was done, we went back to Evans to see my case manager, Johelen. She's an amazing case manager, I can't believe how much she has gotten done for us. Anyway, we had to see her because she needed me to sign a paper for the ECHO program. I took my Palliative Care pamphlets with me to show her, she looked them over, and wrote down the info. I explained what it was and how it would help me, and she mentioned that Tricare may not pay for this if I am also receiving home care (ECHO program). The reason they want me in that is to get me a way to have my dressings changed when the clinic closes. However, I would be totally okay with going to the cancer center for my changes. So if I like the palliative care, I can just forget about ECHO. Did all that make sense? haha. In short, palliative care and cancer center, or ECHO program.

Another thing we talked about was getting me a wheelchair. I can barely walk two yards without having pain somewhere, whether it be back pains, leg pains, abdominal pains, etc. I get winded very easily and have to sit down almost immediately whenever we stop somewhere. Because I can't eat, I don't have the energy during the day that food could provide. Since I can still walk, I would get one of those fold-up wheelchairs to just take places. It's taken me a while to accept the fact that I need one, but I guess the time has come.

We finally got home at around 5, and I gave myself my insulin and started dinner for the guys. I made double the amount of spaghetti I usually make. It was okay, it just really sucked that I wasn't able to eat any. I had an icee in the fridge that John had got for me on the way home, seems like that's all I can handle nowadays, even though they go right through me. I went to take it out so I could go sit down and enjoy it, but I guess my hand slipped and I dropped the cup. Icee went everywhere, all over the kitchen floor and my right foot. John, bless him so, immediately got up and started grabbing napkins, helping me clean it all up. I started to cry, of course; had to sit down and just let the tears flow. The last time something like this happened, I had dropped the roll of paper towels in the sink while the water was running, and it just set me off. After John finished what he was cleaning, he came over and hugged me, asked me what was wrong. Honestly when these things happen, I can never come up with an answer right away. But then I realized that it's the same thing that's been wrong for a few weeks now. I can't do anything anymore. I don't have the energy. I want to clean so badly. I want to sweep and mop the floors, and use PineSol so I can smell the lemony awesomeness. I want to wipe down things with the Lysol wipes and reorganize my area. I want to vacuum the carpet and clean the tables. I feel like people see me as a lazy bum, not even trying to get up and out, but people don't understand. I AM trying. I try very hard. I can't help that I run out of spoons so fast*. One time, before I knew about all this MNGIE crap, and my energy was already starting to go away, one of my "friends" got in my face and called me lazy and boring because I never felt like hanging out. She said, "You're always moping around, doing nothing but sitting at your house online or something. You never DO anything."

I wasn't sure what to say because I didn't know why I didn't feel like doing anything. It's not that I never want to, I do. I would love to be able to go out and have fun like I used to. Go places, goof off, go window shopping, walk around outside, site-seeing. I'd also love to be able to have a damn job, and earn my own money. But the thing is, I can't. I just can't do those things anymore. People don't get that I can't just replenish my energy. It's not like taking your pokemon to Nurse Joy.

Well, I kind of went off topic there for a bit, didn't I? Oh well.

Next week I have a hematology appointment Monday, therapy on Tuesday, and a GI appointment on Wednesday. I'll be bringing up the g-tube situation then.

*For more info on the Spoon Theory, clicky clicky.

Looking for life.

Wednesday, at my therapy session, my therapist suggested we look into Palliative Care, which is medical care provided by physicians, nurses and social workers that specializes in the relief of the pain, symptoms and stress of serious illness. My disease has gotten to the point where I feel like I could benefit from this. No one wants to think about it, but my life's been cut short. I'm going to die sooner rather than later. And I don't want to go uncomfortably. I feel like my doctors are giving up on me, telling me Oh, your MNGIE is progressing, there's nothing we can do, so here's some more therapy and maybe some pills that may or may not work for you. Okay.

I don't have anymore options other than randomly dealing with the symptoms I have. And so far, no one will listen to me about my nausea and vomiting (hopefully my GI doctor will be willing to try what I want), and those are the things that have been getting worse and worse by the day. I can no longer eat. Anything. Period. Zilch, nada, no food whatsoever. I can barely handle a peppermint anymore when I'm nauseous. My weight is continuing to drop. I can't comfortably take a bath because I have to keep my port out of the water, and my bones rubbing against the tub floor is painful. My muscles ache more and more every day. I am not happy or comfortable no matter where I am.

I wish my PCM cared enough to read this blog. Then maybe he'd fucking listen to me.

Anyway, I'm going to look more into this palliative care thing. Hopefully it could provide me with some relief somehow.

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.