SERIOUSLY?!?!

What would you do if your husband came home from work and told you that people were willing to pay for your funeral expenses, and they want us to visit funeral homes and pick out the details?

That's all fine and dandy, a real weight lifted off of my family's shoulders, so excuse me for a moment when I say I am not okay with this. I am only twenty years old. Never in my life did I ever imagine I'd be having to do this right now. I know my life has been cut short, and I realize it's something everyone has to face one day, but I really don't want to face it right now.

I don't even know what I want to happen with my body. I don't know if I want to be buried or cremated. How in the hell am I going to discuss this with my parents?! I don't even know where to begin. I guess I'll just start here...

Ugh I am an absolute wreck right now... I don't even know what to think.
These people, the ones who want to pay for it all, they don't even know me. I don't want to start meeting them just to watch them pity me. I don't want to be treated like a dying person.

I can't even finish this post. I feel sick to fucking stomach.

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.

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.

UGH

I can't take this anymore. I'm going absolutely insane not being able to eat what I want. I started my period yesterday and ever since I've been craving everything under the sun, and it's not fucking fair. I don't know how other patients do it. I'm still not completely NPO (nil per os (nothing by mouth)), but what little I do try to eat makes me absolutely miserable.

My diet literally consists of water and various pills right now. And I don't even know if I'm absorbing the pills. I don't wanna sound like a druggy or anything, because I'm not, but I really wish they'd give me IV meds I can stick in my port. I need a pain management doctor. My back has been aching like crazy and these stomach pains are getting out of hand. I don't know what else I can do about it.

It seems like I have no options. Nothing would work for me, and if we tried anything it'd be too risky. So I'm just waiting to die. How morbid is that? Like seriously, I would have never in my life imagined that I'd be saying or thinking such things, but here I am. I bet anyone reading this right now, if you know me personally, I bet you've suddenly got the urge to stop reading. That's okay, I can't force anyone to read my crap.

Now I'm just babbling; it's the fatigue talking.

Let's talk about today. I had another mini breakdown, I guess you could call it that. John was taking a shower, and I was wanting to get in the bathtub, and he said he'd be quick. He was, took maybe 15 minutes. Then he came out and told me I better get in the tub before the water he ran for me got cold. I didn't even think about how sweet he was for running me a bath, bubbles and all. No. I immediately got pissy because I wanted to run it myself. Now that I think about it, how fucking petty was that of me? He didn't have to run my bath for me. But he did, because he knew I wanted a bath. So I pretty much stormed in the bathroom, stripped down and put my foot in. The water was scalding hot. I don't blame John for this, because I do like my baths hot, just not boil-a-lobster-hot. This made me even more upset because the water hurt, and that only meant I had to wait longer for my bath. So I started crying and ended up bawling like a nit on the bathroom floor, naked and cold.

Of course that only led to more crying, and since I was naked, seeing myself all skin and bones didn't help much.

I have these breakdowns a lot nowadays. This one probably had a lot to do with my hormones and that time of the month or whatever. But that doesn't change the reasons I broke down. I've become a lot more angry, I guess. I dread waking up in the mornings. I don't want to leave the house, and when I do, the places I want to go can't be reached. I don't have the energy to do anything anymore. I try to read and draw and make things as much as I can, but one little thing can set me off. I want to spend time with John but almost instantly I get annoyed and just want to be alone. But deep down I know that being alone is the absolute last thing I want.

I feel like I'm not making any sense anymore.

An angry and frustrated TMI post.

I am one pissed off little woman right now. There seems to be so much going wrong nowadays and it just doesn't help that I'm losing control of my bowels. I swear, it's probably the worst and most embarrassing part of my situation, even worse than the pain and discomfort I feel on a daily basis.

This morning I woke up, unhooked, went back to sleep. I felt terrible, I was bloated because I ate last night, so I knew either I was going to throw up or I would eventually have to run to the bathroom. So I was waiting to see what would happen, I guess. Needless to say, my bowels woke me up from the nice sleep I was in, and I ended up having to wash my undies and yoga pants. Clean up on isle couch. Actually, I didn't make a mess on the couch, thank god. But it was enough to have to change clothes.

How embarrassing all this is. John came to check on me and asked if I needed anything, and got me a change of clothes. I'm so happy I have him, and I'm so glad he's never made fun of me for shitting myself. It's not fun. And I feel like a damn old lady who needs diapers. It's bad enough I have to depend on panty liners and pads all the time now.

Anyway, I've been constantly running to the bathroom all day, and it's usually an every day thing. It's terrible. I'm almost always thinking about it and worrying about going in public. Especially when I have a lot of appointments in one day. Have you ever seen someone have to actually hold their ass in order to keep from losing control? Yeah, that's me. I'm the girl who shits all the time. Go ahead and laugh it up, Karma's a bitch.

So this is one of the reasons I'm going to talk to my doctor about getting a Gtube put in. I'm hoping having it will allow me to drain my stomach and eliminate the chances of having so many accidents all the time. I'm so glad I haven't lost control of my bladder yet. I would hate to have to cath myself, or cath period... I've had so many UTIs from the catheters in the hospital. That would suck. And they're so uncomfortable.

Back to my shitty day (pun intended). I had two appointments today, one audiology, and one for my SSI/Disability interview. The audiology one went well, as always. Dr. Illif is awesome. I won't see him again for another 6 months. The SSI one, however, sucked immensely. It didn't take long for us to be called, to the waiting part was fine. But during the appointment, we learned that I'm not eligible for either SSI nor SSDI. Why? Because of my work history not being extensive enough and because of John's base income.

What the flying fuck.

It's not fair!! They don't even consider my medical problems until I'm already accepted. That's complete bullshit. And here's a kicker! John would be eligible for an extra $900 a month because he can't work his normal job. So he'd get disability, but I can't get jack shit because I'm married to him. Seriously. I'm over here dying of an illness that has no cure, and he can get $900 because he can't lift a box.
I'm not complaining about him being able to get that extra money. By all means, please let us get it. But it doesn't seem right that they only consider income and past work experience to be eligible for anything. Especially since the income they consider isn't even the income we actually receive. No, he doesn't even see that $6000 a month. We only get about $1500 a month, and all of that goes to groceries and bills. We haven't been able to put any money in savings. What the fuck are we gonna do when he gets out?!

I'm just so mad right now. Stressed out, worried. And that does absolutely nothing for my illness. It only makes things worse. So why can't something, just one thing, go right for once?