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This is gonna be short. I thought I'd be posting a long one today, because I was expecting more to happen, but it didn't. So, here we go.

Yesterday I had therapy. Spent most of my session talking about my past and showing off old pictures of my family. It was nice. It was a happy and sad nostalgic session at the same time... I like remembering things but then again it really sucks because I can't go back to that. I miss how close my family used to be.

Anyway. After that John decided he wanted a McFlurry, so we went to McDonald's. Do you see what's coming? Yeah. Of course I had to have a happy meal and John just can't say no. I ended up eating a few fries and the apple slices. Big. Mistake. I went to bed at like 7, woke up a couple times to go to the bathroom, and then I suddenly had to vomit at around 9 this morning. Let me tell you, it is NOT FUN throwing up apples that haven't been digested. This was even worse than the pickle incident. Very painful.
But I felt better after it was all over.

You would think I'd learn a lesson from this, but oh, no.

We'll get back to that in a minute. I had my appointment with the clinical pharmacist today to talk about my TPN. This is where it gets short. I don't think much was established besides my concerns and what I wanted from her. She basically asked me about my current meds and whatnot, and didn't really suggest anything. I'm going to try melatonin again for my sleeping issues. She gave me prescription tylenol because she saw that I had midol PM. So we'll see how that goes. I think I'd prefer to continue taking my midol though because the PM helps me sleep. Whatever. Anyway, my TPN wasn't discussed much. Which kind of pissed me off because we kept bringing it up. It seems like no one has any idea what to do when it comes to TPN.

And I may be wrong for this, but I felt like I was being judged in there. I'm probably over thinking it, like I do with everything else. But I mean, I was in there with a giant bag of different medications, some being OTC pain relievers, and she kept looking at me as if I was an addict.

I'm just having a really tough day and I don't feel like being fucked with.

Now back to learning a lesson. I don't think I'll ever learn. I just made John two bacon/egg/cheese sandwiches for his dinner, cut one in half and ate half. I'm not bloated, not nauseous. But I just KNOW, tomorrow morning is going to absolutely suck for me.

Cheers.

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.

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.

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.

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.

Shouldn't have eaten that pizza.

I hate not being able to enjoy food. I mean, I can enjoy it, I guess. But the aftermath completely sucks. Sometimes even during the eating process, it sucks. My stomach gets all crampy and bubbly, and sometimes (TMI ALERT) I lose control of my bowels. This is actually a problem I have to deal with all day, every day, and it is probably the most embarrassing part of dealing with MNGIE. I can say with confidence that every last bit of modesty that I once had has completely jumped out the window. I warned you, and so did the blog before you entered it.
Anyway. Aside from my uncontrollable angry bowels, I also bloat. And the bloating isn't like menstrual bloating. Not just a little bit of pressure every once in a while, oh no. It's more like a sudden 7-month pregnancy bloating. It literally looks like I'm carrying a child. I used to be self-conscious about this, but ever since all the hospital stays, like I said, modesty is gone. I don't even wear bras anymore. No shame, it's the best thing I've ever decided for myself.
I just finished writing a letter to my friend, Bre. She was my first and only friend I made at Berry, when I attended. We instantly clicked, it was amazing. I got a card from her in the mail today and she has requested we be pen pals and start writing letters more. I love this idea. I wish more people would start writing to me. Letters mean so much and reading them, especially when they're long, helps to take my mind off things.
I also wish I were a cat. I mean look at him, he looks so comfy and cozy.

He's even snoring.

This was a totally random blog post. I just feel a need to get my thoughts out tonight.