Ugh not this again.

We've been discussing hospice and palliative care again, and John thinks hospice is the way to go. I understand his reasoning, but I don't want to do it because of my own reasons, being:

• I wouldn't be able to keep my home health nurse, who comes to me every Monday to change my dressing and draw labs, who I trust and love because she knows what the fuck she's doing.
• We're moving eventually, and if we don't stay in Colorado, what then?
• We may end up having to switch back to my old infusion company, unless ThriveRx contracts with the hospice company.
• We're not even sure what will be covered by our insurance.
• I realize I am dying, and that fact just rears its ugly head every time I think about hospice care, and I am not ready to die yet.

My reasoning doesn't seem like much but... I just don't feel like I'm ready for such a drastic step. It's like that time they wanted me to go casket shopping. Like seriously? I'm only 20 years old. I know my life is cut short, but I'd also like to keep trying to stay alive as much as possible. I'll be 21 soon, and I won't be able to have a party or go out for drinks or anything like that, but I'd like to celebrate the fact that I've made it this far, without being depressed about my disease.

I've been really struggling with all this. I don't want to have to make this kind of decision. I'd almost rather be unconscious and have someone pull the plug to put me out of my misery. It's really getting to me and it's becoming harder and harder to stay positive.

There are no treatments I can undergo. Every one is too risky for me, or too invasive. We talked to my GI doctor today, and we didn't really get anywhere besides him talking about how he's clueless and my disease is so rare...

I guess nothing can be done.

Hospital stay number...What was that one?

I got home from the hospital about five hours ago. I went in on Tuesday afternoon because I couldn't hold anything down and I felt very lethargic. I was pushing a low grade fever of 99.7, and we (my doctors, myself, and John) were concerned that I had an infection from my port. Thank goodness that wasn't it... but with all the tests and samples they took, I was hoping they'd find something so I wouldn't be left in the dark. And yet all the tests came back normal and it looked like everything was fine.

I had to have two IVs put in while I was there. First was in the crook of my arm; it ended up bending and not working anymore. So then they stuck me in the left wrist. I hate IVs. I cry every time. My anxiety goes through the roof, it's a wonder I don't freak out when my nurse changes my port needle.

Among the tests they did were urine and stool samples, x-rays, and blood tests. The x-rays showed a lot of air in my stomach, but no perforations or obstructions. Later they took a second stool culture to test further for C. Diff, but instead of finding that, they found a bunch of white blood cells working to protect me. The doctors just said it was some kind of infection and gave me some antibiotics.

I discussed a G-tube with my PCM and GI doctor again, but after some convincing they apparently changed my mind about it. But then we discussed an EG procedure, and that was done the next day. I was put under and they went down my throat with a tube and camera to look at my gross-ness. After it was done and I was awake, they told me they saw at least half a liter of bile just sitting in my stomach. Didn't really find much else. Picture time! Gross, huh?

They also mentioned superior mesenteric artery syndrome. So I'm not sure what's going to happen with that.

During my stay everything was nice. The fifth floor of Evans has been remodeled, and it looks even better than the maternity ward. The staff was super awesome, and most of them recognized me and remembered me from when I was there last year. I was given meds for pain, nausea, and my antibiotics. They did more blood draws but it was from my port. I was happy with that.

Hospice and palliative care was discussed yet again. I wouldn't mind help but I don't want to have to deal with people I barely know who are going to take care of me. I also don't want to lose my HH nurse, because I trust her more than anyone to change my dressing and needle. I don't know.

The hospital Chaplain came to see me on the second day I was there. He was wearing a robe, like a monk, and balding. And he was extremely quiet, I had to ask him to repeat himself a lot. He didn't really help me with my spiritual walk, but he did pray with me and that provided some comfort...

I am so glad to be home. I look back and I think, "Holy crap. I was once hospitalized for a month, how did I not go insane?!" because these past few days have been pretty intense for my emotions. Today, right before I was discharged, I threw up. I threw up the breakfast I had this morning, which was mostly hash browns. That hurt so bad. The rest was bile, of course. I was afraid they were going to keep me another night, but they didn't. I guess that's the beauty of having a disease no one really knows about.

As of now we're just watching how I do, I guess. I see Dr. McNally, my GI doctor, again on Tuesday. I almost don't want to go because he always tells me I'm strong and even though I know he means well, I feel like he feels sorry for me, and I hate that. He's very nice, and very good at what he does, but for me to be the patient to stump him... it's pretty frustrating.

I'm off to play some more Animal Crossing now.

ER trip.

For the last few days I've been really on-edge about things. My depression has gotten worse and I haven't been sleeping like I should. Almost anything will make me cry. I asked John to call Pamela's office to make me an appointment... She discharged me months ago, but everything is hitting me again.

I weigh 61 lbs now. Down three. Not cool...

I've been distracting myself with my 3ds and movies we've been seeing, John got his new computer and he's been all giddy with it.

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Sorry about the sudden break. I stopped typing and just closed my laptop.

This morning was terrible. At around 5am, I jolted awake choking on my dry throat and acid. That sucked. Finally I was able to catch my breath again and go back to sleep. But then at around 7am I woke up again, but as soon as I moved, I felt an intense sharp pain starting in my left rib area and going up my back and over my shoulder. It hurt to inhale, and I started panicking. The only thing I could think of was my port, but it didn't make sense seeing how it was working perfectly fine.

I tried to wait it out for a few minutes, but it hurt so bad to the point I could barely breathe, so I went to get John up to take me to the emergency room. When we got there, we didn't have to wait long at all. Within 5 minutes, we were called back to answer some questions and get my vitals, and then not even 10 minutes later I was wheeled into a room. They used my port for fluids and morphine, so I didn't have to have an IV. Being in the hospital again was almost too nostalgic for me. Sometimes I actually want to be back in there, having people always there for me, asking me how I am, if I need anything. People coming to visit me. It's a weird feeling. Like I don't want my intestine to perforate, and I don't want anyone to worry or be stressed out over me. But at the same time I just want to escape from my life at home and just have a few things to do in bed.

Anyway, the doctor ordered chest x-rays, which came back "beautifully" and there was no sign of issues with my port. A few hours and more pain medicine later, they decided that it was pleurisy chest pain, and I would go home with naproxen and hydrocodone. I'm not sure what could have caused this. When I looked it up, it seems it has quite a lot of causes. So I'm just going to take my meds and hope for the best.

I have concluded that I'm a morphine junkie. While I was in there, all I could think about was "more morphine." I wanted more because I like the way it makes me feel. But I was afraid to ask for more because I don't want to seem like a drug addict, no matter how much pain I was in. After the morphine, they gave me something like tylenol in my port, which didn't do much at all, so then they gave me something stronger, but I don't recall what it was. It had the same affect on me that morphine did but it was a lot stronger. The pain was almost completely gone, and I was comfortable.

That's basically it for today. I've been sitting on my ass playing my 3ds ALL day, and I have no regrets. Tomorrow John is taking Pandora to the spay/neuter clinic to get her shots and to be spayed. I hope it goes well. I'm nervous for her. It was easy for the boys, but spaying females is a bit more invasive, and she's so young... I better just try not to think about it...

It's almost 3am. I need to go the bed.

Better late than never.

I meant to update this a few days ago, but I was too lazy and decided to stay on the couch instead.

My current weight is 63.2 lbs. I tried to eat at Applebee's over the weekend, and I lasted like 5 hours before throwing it all up, but oh my god it was delicious. I don't want to give up trying to eat. Food is a staple in my life that I just cannot give up.

We have been going to the movies a LOT lately and we're going to be going even more when all these other awesome movies start coming out. I've said this multiple times: it is so good to get out of the house, even with my TPN in tow. I actually had to unhook last night in the middle of Man of Steel. haha.

I have thrown up maybe 4 times since Thursday... I think my phobia has gone away, and now it just annoys the hell out of me throwing up.

We were watching a dog for one of John's friends for a month, and he just went home this past weekend. Friday he ripped my needle out of my port, tripping over my TPN line as I was letting him outside. So that sucked.

Saturday we went to the PPTRC after having to wait for 3 extra weeks of not seeing them. It was amazing and I can't wait to see the pictures... whenever I actually get to anyway. It was a difficult day, though, because they had to wheel my in the corral, so I got sand all up in my tires. We're going to have to figure something out because I would rather not ruin my wheelchair. It was also insanely hot and I forgot a water bottle so I felt weird once the sun really got to me. But it was amazing nevertheless. Raven was working with some other kids, so I hung out with Jewel and Ally.

I was having an issue with edema in my feet over the weekend, so I stopped my fluids. We decided to cut it down to 500mL instead of 1000mL, and I started that change today. We'll see how it goes.

The biggest update for now is that I'm getting AFOs for my feet. AFOs (ankle-foot orthosis) go on and around my feet and calves in order to help keep my feet from dropping when I walk. It's basically a foot/ankle brace. We went to the orthopedics at Evans to see if they had any that already fit me, but they didn't. So I had to get my doctor to put in a referral for me to see a specialist off post so I can be fitted for some. Still no word on that yet. I'm assuming that my doctor will call us this week sometime because that's just how he is.

My thoughts are all jumbled again, so my blog posts probably won't be very interesting for a while.
Still, I want to thank whoever reads them.