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.

Wow.

Isn't it absolutely amazing how we change over the years? I just spent about an hour and a half reading a journal I had written in from December 2008 to like... September 2010. I can't believe how dramatic I was during high school. Always worried about John cheating on me, complaining about not being happy at home. There was nothing wrong with my home life at all. I was just a selfish teenager. There were so many entries where I'd go from hating my life to happy as ever. It's kind of funny, looking back. But then I realize how nowadays everything's so different. For example, the MNGIE is here. That definitely changed my perspective on things.
Anyway, I just can't believe how much stress I let myself go under. I still do it, too, I over think everything and I always have to know things that maybe I'd be better off not knowing. My situation is difficult because I am able to admit these things, my flaws and whatnot, but I don't know how to go about fixing them or coping.

I was going to wait until tomorrow to blog, but I figured I'd get these things down tonight.
Today was terrible. We went to get my dressing changed today and Leo (the nurse who changes my dressing each week) wasn't in, so we have to try again tomorrow. We're going to start calling before we go because even a simple trip to the clinic exhausts me now.
I had a little breakdown when we got home because I was pissed that nothing was going right. My PCM sucks, and it seems like he isn't doing his damn job. Then there was a bunch of confusion with my GI appointment that's next week, and it was almost cancelled. Which would have been absolutely TERRIBLE because it takes them forever to get me in for an appointment, and rescheduling this would be hell. Not to mention I need to discuss a g-tube option with McNally. So I need this appointment.
I ended up getting frustrated, John ended up slamming the door when he left for work, and I ended up screaming bloody murder and crying myself to sleep. The two-hour nap made things a little better.

I've been making friendship bracelets. So far I've made 3; one for Kaitlyn and Kathy, and one for myself. I'm pretty proud of how they've been coming out. I figured out how to create my own patterns, so that's awesome.

I have therapy on Tuesdays now.
Looking forward to taking my bracelets and my beads to share with Pamela.

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.

Just a quick one.

Okay it's official. I am never eating again, period. It's not worth the discomfort I feel. I'm so tired of even trying.

And if any of you are ever so unlucky as to throw up pickles, just know I sympathize with you. That was a first for me and it was the most painful vomiting experience I have ever had.

- Posted using BlogPress from my iPhone

Today just sucked completely.

Jeez, what a pain in the ass. I don't know whether I should feel angry, upset, frustrated, sad... I pretty much feel all of these things. I just want to crawl in a hole and stay there.

To begin, I'll start with my dressing change. It actually went pretty smoothly, considering my past experiences. The only thing was that when he was taking out the needle and putting a new one in, it hurt like hell! I don't understand why; I didn't even feel it last week. The site looked good, no sign of infection, so I'm not worried. But it sucked. And because of where my port is, he has to awkwardly cover it with tegaderm like 3 times to fully cover it, and then the stuff ends up in between my boobs, all across my breast, and inside my armpit. Not very fun. Especially when you're semi-allergic to the tegaderm and the dressing irritates your skin. Itches in all the wrong places.

So then came my PCM appointment. I was dreading this because I knew I'd come out upset and disappointed in anything he'd have to say. Remember my list of things I was going to talk to him about? Yeah, well. That didn't really happen in detail. My appointment was at 2, and we left there at like 2:40... I don't feel like this doctor actually cares about me, honestly. My last PCM dropped my case because she couldn't handle it, was too emotionally attached. And now this one doesn't even spend a lot of time with me. I'm living with a chronic illness that has no cure, and he's up here in his little chair, typing away notes and talking 99 to nothin', when all I really need right now is someone to tell me everything's okay. Whatever.

So basically, he told me he doesn't recommend a g-tube, because of my surgeries I've had, but to ask my GI doctor because "he'll know more about this kind of thing" ...okay. Then when I told him I was concerned about my weight and tweaking my TPN, he just told me that my case manager will get with the pharmacist or something. That doesn't seem like something she would do. HE'S my fucking doctor, why isn't HE discussing these things with the pharmacist?! Everything else involved New York and Hirano, and even still we didn't get very far there.
We didn't schedule another appointment. I don't know what I'm going to do.

I'm upset because I thought maybe I found something that could help me (g-tube), only to have my suggestion essentially shot down. I know my GI doc will do the same, and now that I actually realize how much of a risk I am, I feel like the only thing I can do is wait to die.
I'm so sick of it all. I don't even want to go to any appointments anymore.

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.

Heyo Test Resultsss

The above slideshow shows my test results and consult notes from Children's in Denver regarding my MNGIE diagnosis. To see the scans better, check out my facebook album here.

ECHO?

So I've found a few apps for my iPhone and iPad regarding the Bible and inspirational quotes and whatnot... I'm trying to work on my positivity or at least regain my faith to help make this road less bumpy. I don't know when or if I'll be fully happy again, but I guess now all I can do is try. It's hard. I don't know if I can do it, but so far I have a lot of support from people I haven't even met in real life, along with the support of my husband, which is more than most people have nowadays.

Okay, so there's that.

Today we went to get my dressing changed, but Leo, the only certified RN there, wasn't at work... Sooo I guess we'll have to go back tomorrow. Hopefully he's there. Once I have home care again this won't be an issue. And maybe I'll be able to take a normal shower once a week. I was referred to be in the ECHO program, which is Tricare's Extended Care Health Option, and is basically an extra insurance program that'll help us pay for the home care. For more info on this program, clicky click. We just have to get some paper work in and that'll be set.

I think I might try drawing some tomorrow. Who knows what, but I haven't tried in a while, and I feel like I need to get something out on paper. I wish I could paint, that seems to be a huge stress reliever for some people. Ho hum.

I need something.

I feel like I'm losing control. I don't want to feel this way. I know deep down that I can choose to be happy, I can choose to see my body as getting better. But the fact that I feel worse every day just puts those thoughts back where they came from. It's like living in hell. No matter what I do I can't seem to shake the nausea. I can't stop the stomach pains. Even if I stop eating food completely, I still have problems.

I weigh 64 pounds. Since my TPN started helping me gain, I got up to 69, and now I've lost 5 pounds. I don't know how or why, but I'm scared. Really, really scared. I look in the mirror and start crying because all I see are bones. My back is constantly hurting, but I can't pop it. I can't really eat because of everything going on, so my TPN is pretty much the only thing keeping me alive right now.

I remember a moment when we were in New York, in the hotel, I asked John if assisted suicide was legal. Like if I just couldn't take it anymore, would the hospital essentially euthanize me... My logic in this is that I don't want to die from the pain of a diverticulitis attack. And I don't want to slowly go from MNGIE, because I know it'll only progress and things will get worse. But I would be okay if someone could just put me to sleep.

That's hard for me to think about, because I know that's definitely not the attitude I should have. But being optimistic is so hard. I want to know a god. I want him to be there for me and answer my prayers, to give me some kind of peace. I want to have faith in him, and be okay with everything happening... I just don't know how I can get past this pain.

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?

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.

The Big Apple

New York, New York!

Okay, so it took me a while to decide to try this again, after I started a post two days ago about this trip, finished it this morning, only to lose it completely. So it probably won't include every detail of my trip like I had planned. Needless to say I am still very upset about it.

I guess I'll start with a little list of highlights that happened:

My power port needle set off the security thing in the Colorado Springs airport, and I was patted down by the TSA. That was interesting.

Our flight to Dallas got upgraded to first class, I guess because I was in a wheelchair and they wanted me to be comfortable. Nice people. Thanks, American Airlines.

Landing in New York, we flew over the Statue of Liberty and she looked about an inch tall. Very cool to see such a major landmark!

It took us about 3 hours to find our hotel, and by the time we did, I was miserable and cold and I already wanted to go home. I don't know why they gave us a rental car in New York City.

This was the view from our hotel.

The next morning we had to get up early to get ready for my appointment. We knew we'd have to leave a few hours early if we wanted to get there on time, so we left at 8:30. My appointment was at 11.

Not even five minutes in the cab, and we wreck. An hour and a half later. We get out and find a new cab.

We finally arrive at the medical center, sign in, and then wait another hour for Dr. Hirano. I'm already exhausted and John has to be stressed out as hell.

The appointment pretty much goes like this: We discuss my history, my symptoms, what MNGIE is, etc. Hirano tells us about the trial and then tells me that I wouldn't be eligible due to my diverticulitis. He says there are other options, such as a bone marrow transplant elsewhere, or dialysis, or platelet treatment, and some other things I guess. But by now I'm only half listening and going in and out of attention because he said that all of these could be fatal for me due to my diverticulitis. Tests are done, I'm told my ptosis is evident and I have minor muscle weakness. More testing is done and we don't get back to the hotel until around 4:30.

The view from a bridge at the medical center.

John hadn't eaten a thing all day, so we order pizza and Chinese take out.

Next morning, we get up at 7, pack, and call down for our rental car. We miss our flight because the idiot valet brought us the wrong car and we had to wait for him to bring the right one. On our way to the rental car place, we drove through Times Square and down Broadway, so I got to see all the big billboards and Times Square up close. That was neat. Some pictures:

So. I guess the trip overall sucked, really. The entire time I felt horrible, John and I were both stressed and overwhelmed at the city. And my appointment only made me more upset about my situation. I don't ever want to go back. Maybe if I were actually healthy, and had time and money to spend, New York City would be a fun place. But I'm not, so I have absolutely no interest in making a return visit.

My thoughts on the whole thing? I'm sad. I'm angry at my diverticulitis for keeping me from treatment. The fact that anything could kill me just sucks completely, and it's not fair. I have no one to blame, and that makes me even angrier. I want to blame God, but I don't even feel like he's beside me anymore. I don't think I've ever felt him beside me. I'm afraid of what's to come, but I know that I need to stop living in fear and just accept it all. It's hard to take in, though, and putting so much effort into trying to be calm and collected is the most exhausting thing I've ever done.

I guess it's back to my weekly appointments and nighty nausea.