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.