Happy Easter and all that holiday junk.

I'm having an okay weekend. I've been feeling pretty good, a little nauseated the other day during grocery shopping, but I didn't throw up. Earlier this week I had migraines like crazy, so those were two bad days. Thankfully I get these breaks where I guess my body decides to take pity on me and cut me some slack.

These next couple of weeks are going to be interesting:

• April 2nd: My ThriveRx nurse, who is flying from GA to Denver and driving down here, is coming to visit me, and my Gentiva nurse will be coming that day also to change my dressing. She usually does this on Mondays but she wants to meet Kristi. Kristi will be bringing me more info on Thrive, I'm assuming, and a few TPN pumps for me to look at while she's here.
• April 10th: People from the wheelchair company are coming to see me; I don't know if they're coming to fit me for one or if they're actually bringing a standard one. I've never gone through this before, so I don't know what to expect.
• The week after that I have two appointments following up with my hematologist about my iron infusion I had a few weeks ago.

All in between this I'll be supporting the husband with his new unit transition and getting ready for his uncle to come visit us on the 11th. I'm excited about that, because John really needs a break from everything.

I got that bedge pillow thing Friday, and I've been using it. It's super comfortable! And only a 4-inch incline. It's firm, so I don't have to fluff it like I do my pillows. And it fits perfectly on the couch, which is where I sleep now. It only ended up costing us $35. Much better than $300.

I was also surprised by a friend with a snow cone machine earlier this week. I had no idea she was going to get me one until she had already ordered it. She got together with other people and got it for me. It works amazing and I am so thankful for them. I wish the whole world had such compassion.

I suppose it was a good week overall, other than the shock of planning my own funeral. I'm over that hump now, though. If it's mentioned again, I'm just going to tell them I'm not ready to plan something like that. Or just let John handle it.I'm still not sure what I want done with my body.

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.

Posty post.

This week has been so slow for us. Aside from John finally starting his med-board and getting switched to the Warrior Transition Unit (WTU), not much has happened. Now we're just waiting on answers. I wish we had more answers sooner rather than later, because we really don't have a lot of time for planning.

We started my ThriveRx services! I'm so excited about it. This will be my second week with them, and already I've had more communication with the staff than I have with my PCM. Everyone is aware of everything and I couldn't be more happier with how much care they put into their work.
Just last week one of them drove down here from Denver to pick up my insulin prescription and bring it to me! I mean, seriously, these people go all out. My Thrive nurse, Kristi, actually lives in Georgia and she's flying to Denver and coming here to meet us! I'm loving this.

Did I mention I have my home health care back? My nurse, Tina, sees me every Monday to let me shower and change my dressing, take my vitals, etc. I'm so happy we have her back, and it's really going to suck if we do end up moving to TN. I'll really miss her. It's not every day you find someone capable of doing so much who you trust.

Yesterday was my last day of therapy. Pamela asked me if I felt like I got what I needed while seeing her, and it kind of caught me off-guard, but I had a feeling she was going to discharge me soon. I mean, she was my therapist, and John always had more to say than I did. haha. But honestly, I do feel like I'm at a point where I've accepted what's happening to me, and now all I can do is take one day at a time and hope for the best. I need to start focusing on John now. He's been helping me with so much and I feel like I'm brushing him off. If I told him this, he'd deny it and tell me everything's okay, and he doesn't need anything. But that's just like a man to say something like that, right?

Anyway, I feel like I've been happier. I have more closure, I guess. The grieving process has passed, hopefully for good. I know I'll still have my bad days, and that's okay. Lately I've been doing well, physically. I think the iron infusion helped. I've been trying to eat again, and so far I can handle potatoes okay. I'm afraid to try anything else. Hopefully soon we can get my TPN situated and I can start gaining again.

asdfghjkl;

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.

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.

Starting to hate weekends, too.

This weekend started off absolutely terrible. Friday we spent five hours at the cancer center, I had my iron infusion. It was alright, I mean I really like there. The staff is great, like I mentioned before, and I even got compliments on my MNGIE bracelet and the hat I was wearing. So that was nice. It was just a grueling five hours. I had my iPad, but their WiFi was kind of slow and the fluids and iron they gave me were making me tired. I was already tired because I had to get up at 7:30 that morning, so... 

Anyway, John got sick while we were there, poor thing. He rarely gets sick. We believe it was food poisoning. He has this terrible habit of leaving pizza he ordered out on the stove overnight, and eating the rest the next day. I try to tell him to put it away, because leftover anything at room temperature overnight is dangerous, but he's a guy, so he doesn't listen. He's barely eaten anything since Friday.

After we got home, I pretty much slept the rest of the day. Took a few baths. Saturday morning was the worst; I threw up at around 4:30, and then woke up again at like 8 with an intense pain in my hips. I was freaking out, I could barely walk. I had never felt this pain before. John had stayed up late the night before, so he was totally out and probably couldn't hear me crying. I decided if a hot bath wouldn't help, I'd wake him up to take me to the ER. It helped a bit, but as soon as I laid back down the pain slowly came back. I eventually fell asleep through it, woke up at like 2pm, and it was gone. Just gone. I still don't know what happened.

Saturday afternoon and evening got better. I felt okay because I had thrown up, so no nausea or anything. I watched Doctor Who all day and all night, until around 2 or 3am. I made a couple bracelets, too. We were going to clean the house yesterday but that didn't happen. I did manage to do a load of laundry, though. Maybe we'll get something done today. I dunno.

I still need to set all the clocks forward...

I started my Flagyl Friday. I don't know if I can tell a difference yet... I think it's helping?

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.

Oddly enough today was a pretty okay day. Isn't it terrible that having a good day is odd for me? Really, though. I'm always expecting bad days.

Anyway, therapy went well. We discussed my childhood, and some of John's. It was a nice break from talking about how my disease is making me feel. That topic can get pretty depressing.

This morning was slow. Every day I find myself more and more exhausted and always wanting to not wake up. Like I'm too comfortable to stop sleeping. It seems like I don't get enough sleep at night; my TPN causes me to have to pee every few hours (it used to be much more frequent), so I'm always getting up to go and having to fall back to sleep. Sometimes it's easy and sometimes I end up staring at the ceiling for a while.
I just really really enjoy sleeping now. A lot more than I used to. I constantly feel like I could easily fall asleep right there, no matter where I am. I never want to go anywhere anymore.

I think most of that is because of my energy level, but it's also because I can escape my pain when I sleep. Like I can just slip off to dreamland and forget about everything going on. That sounds kind of morbid, I know. But hey, it's not like there's anything else I can do. The pain is always there. Another option would be to off myself, and we all know that ain't about to happen. Sometimes I wish it was that easy, though, to be honest.

It's 7:43pm right now. I think I may try to go to sleep early tonight. I was going to work on more bracelets, but I don't really feel like it right now. Tomorrow we figure out what to do about my TPN, and I see my GI doctor a few hours later. Not looking forward to it.

What even.

Well! Today was eventful. Not necessarily in a good way.

Last night I tried eating some bread. Not a great idea on my part. I was nauseous the entire rest of the night and this morning. I tried to sleep after I unhooked my TPN until noonish, but ended up just tossing and turning and checking my accounts. We left for my hematology appointment at around 12:30, I'm bloated, nauseous, and in pain.

About half-way to my appointment, on the interstate, it all starts to come back up. I ask John quickly if he has a bag, he says no, asks me if he needs to pull over. He does, and as soon as I can without hurling myself out of a moving vehicle, I swing the door open and purge. The wind was blowing towards me, and it was getting where it shouldn't, so I stepped out and finished outside. Let me tell you, throwing up while Colorado winds are blowing SUCKS, and the cold air only made my pains even worse. And to make things EVEN worse, while I was barfing on the side of the interstate, I was also shitting myself. Isn't that just awesome?! Right?! As if throwing up without having anything to blow my nose with afterwards wasn't embarrassing enough, my bowels just had to decide to stop working. Luckily it wasn't that much, but still enough to run down my leg and force me to sit awkwardly the rest of the way to my appointment.

So we get to the cancer center, my nose is needing to be blown, there's acid and bile burning my nostrils and mouth, my pants are stained, and my stomach and back are sore from barfing in the wind. I hand John my ID so he can check me in, and I go straight to the bathroom to try to clean up. Eventually we go back to that room with all the chairs where I had my dressing changed last week, and the same nurse I had then came over and introduced us to some intern who was learning how to change dressings... I don't really like these kinds of situations. But she did a fairly good job, I guess. The needle part hurt a bit; I'm getting pretty tired of that already. Other than that my site is fine.

After we fixed a misunderstanding with my appointments there, which I'm not even gonna go into, we left. The drive home was quiet. When we pulled into the driveway, my home health nurse was there waiting, so my plan to take a long, hot, bath turned into a quick, warm one. I threw my clothes in the laundry (which I still haven't started... need to do that) and hopped in the tub. When I was done, we spent about 2 hours discussing my home care plan and doing paper work, updating the nurse on everything. My nurse will be Tina, who I had the last time we had the home care, and we're very happy about that. She's absolutely incredible.

I think the only good thing about today was the Gentiva visit. I'm looking forward to seeing Tina again.
While Sue (the nurse who saw me today) was here, it decided to snow like crazy.

I hate snow. Sure, it looks pretty, but it's cold and it sucks.

After she left I took a five hour nap, which was much MUCH needed, and ended up waking up at around 8pm. An hour after I'm supposed to hook up, but whatever.

And you know what? I just now realized I forgot to administer my lantus. Awesome. I should probably do that before my blood sugar explodes.

Well. That's that. What a day. Tomorrow I have therapy, then Wednesday I meet the ThriveRx ladies and see my GI doctor. I think I'll be watching a lot of Disney movies tonight.

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.