A few updates.

My blog now has its own domain! Welcome to LivingWithMNGIE.com!!!

I received an email response from Dr. Bax. She said that the experience they've had with the treatment is that results usually don't show until at least 10 months in. I expected this, but I only set my campaign goal for one month. It's kind of discouraging, but then again if Dr. Bax will still have me, I could still contribute to the research being done on my disease and on mitochondrial disease in general. Not to mention I'll get to see London. So I guess I just have to keep myself focused and determined.
I sent her my doctor's contact information, and she said she would get in touch with him and discuss my case. My fingers are crossed that everything goes well and we hear from her again soon.

A recent change we're trying now is continuous TPN. That's me being hooked up for 24 hours. All day every day. We are trying this because it seemed like every time I'd unhook, I'd experience the diarrhea I've been trying so hard to control, and this never happened when I was hooked up. I talked to my nurses and my doctor, and they all told me there's no reason I shouldn't give it a shot, so here we are. Of course, my freedom is gone now. I will no longer be able to take a semi-free bath (laying in the tub, unhooked but keeping my port dry). Now I will have to stay hooked up and keep my line out of the water and sacrifice a lot of free movement. And of course now I will be sleeping with my TPN again. That can get pretty uncomfortable and my bladder tends to reach that exploding point because of it. Wish me luck!

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I just wanted to share an email that was sent to me by a nice guy who graduated my high school 3 years before me, and my response:

Hi Melissa,

 

My name is Matt. I was an Armuchee graduate in 2007. I read your story today online via Rome News Tribune and then the full story on the Gazette. My family doesn't have much money to give, but I wanted to send you a personal message of encouragement. I was very moved by your story in the way that people responded but also your courage and willgness to fight for your life. I don't know if you believe in God or not, but I can tell you that he probably was smiling at the response that you received. I often question why things like this happen to people because it really seems like it makes no sense or that it's meaningless--but that's just the thing, it isn't meaningless. The way people came to your side to provide you with the means to fight for your life shows that there is hope for humanity still, and that people still value life over death. To me, that's proof of God... just know that your story has moved my life in that way. I'll pray for you and your husband throughout this fight. Keep going as strong and as hard as you can--God uses the weak to show his strength. And while you're in London, try to eat something English--I had a friend that went there and said the Fish and Chips are pretty astounding.

 

"Cheers"

 

Matt Palopoli

 

P.S. I'll be sharing your story!

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Hi, Matt

I'm sorry it's taken me forever and a day to get back to you. My mind has been all over the place this week. It's all very overwhelming and on top of having a cold and my symptoms, it's been hard keeping track of everything going on. I wanted to respond to you, though, so I saved your email. I remember you from high school, though I was just a sophomore when you graduated, but I do remember you. I really appreciate your kind words, and I am happy to say that I do believe in God. I've had a lot of problems with my faith throughout my life, especially in the last 5 years, and until recently I was very doubtful about him with everything I was going through. Now that I'm getting closer and closer to dying, though, it seems he's making himself more available to me and my faith has grown a lot this year. Part of it is like you mentioned, the response I have gotten in such a short amount of time from everyone trying to help me in my time of need. It restores my faith in humanity when I thought that people just didn't care about each other anymore. It's a great feeling. But this has also made me come to accept the fact that this isn't the end of my life. It's going to be a new beginning, because whatever comes after this life, it will be so much better than anyone can imagine and I truly believe it. I feel very humbled and blessed to be able to experience all of this, even if it comes with nausea, vomiting, and pain you wouldn't believe. I have met people who I would never meet otherwise, and when I'm gone I know that I will be leaving a legacy that will continue to touch people without me. And even if the treatment in London doesn't do much for me, I can say that I tried, and my statistics will help will more mitochondrial research. And I mean, London. Come on. I am dying to see Europe!!! Maybe I can head over and fulfill my dream of seeing Italy and Paris! :-)

Thank you for emailing me, Matt.

Where to begin?!

This week has been the best and the worst for me in a very long time. The best being because John and I were able to raise double the amount we were trying for, and people are still donating and offering help! The worst being because I have been sick all week. And when I say sick, I mean vomit everywhere, abdominal pain like crazy, fevers, headaches, weakness, all happening while I'm coming down with a cold. I have been overwhelmed, stressed, sick, and weak for the past 5 days, and it's really bringing the London mood down.

First things first. I wish I could thank everyone personally for donating and helping us with spreading awareness, but I can't do that. So I thank you all by posting updates as often as my body will let me. Sadly, I am at one of my really low points; this whole thing has been really unbelievable and I am still in shock from it all. I have gotten so many messages and people wanting to be involved, and it's been hard to manage. Some people aren't being very patient with me, and that can become a problem. So I've been hiding away under my blankets, in my own little world, occasionally checking facebook and the campaign site with my phone. I have been telling myself to get up and come type a blog post, but my body was telling me No, you're too weak. Lay back down. Stress does not help me.

However, I am determined to keep the people who have made this possible updated, so here I am.

I know the number one thing everyone is wondering is if I've heard from Dr. Bax yet. The answer is no, I haven't, and I probably won't for quite some time. People forget that doctors are busy people. I probably won't even have an appointment to see her until sometime next spring. So y'all just hold onto your pants. I will let everyone know as soon as I do, and that's a promise.
We have a lot to figure out and get done. A few being getting our passports, getting my TPN situated, getting my medical records to Dr. Bax, etc. It has come to our attention that this whole thing may end up being more stressful and more difficult than our NYC trip, because now that we have enough for at least two months worth, what will we do with that? Will we live in London for two months? Will we have enough money or will John have to get a job in London?

Another thing we've thought about was actually moving to London. But then, my TPN would change drastically. I wouldn't have my formula, but a more simplistic formula. It could very well make me worse off than I am. Europe is very different from the states, and we wouldn't have the care or support that we have here. And what will we do with our cats? So. I highly doubt that we'll be moving to London. I wouldn't want to, anyway.

I think my biggest worry is what if Dr. Bax says I can't do it? Like our trip to NYC, Dr. Hirano told me I was progressed too far along, and the treatment would more than likely kill me before it helped me. What if that happens to us in London? I figured we would just make what we could of our London trip. Maybe fulfill my dreams of seeing Rome and Paris. And then I suppose go back home. We would have the money to pay off our credit card debts, too. Of course this is not what I wanted to raise the money for in the first place. And the last thing I want is for those that so generously donated to be angry at us. But it's the only thing I can think to do.

This treatment is my last chance, my last hope. This is the one thing that could actually make my life a little bit better, relieve me of some of my symptoms. I will be absolutely heartbroken and devastated if I can't at least try it.

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I saw my primary doctor, Dr. Tebo, yesterday. The appointment was primarily for getting an Rx for the Max Mobility add-on for my wheelchair, but since we made the appointment, I had compiled a list of things to discuss with him, including: some med. refills, contacting Dr. Bax, switching my TPN to 24 hrs, pain medication, and the nosebleeds I've been having. So he put in more the Rx and all the refills I needed, and we discussed everything. Nothing worth blogging about, really; he said he could try to contact Bax, and that we should send her my records (glad he thought of that, because I sure didn't). He said he doesn't see why giving 24 hr TPN a shot would hurt, and told me he'd order nasal spray for my nose. I chickened out and didn't ask about the pain meds, and ended up emailing him later, but I don't even think he's in the office now until after Christmas. So it'll be OTC for me until then.

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A woman messaged me a couple of days ago saying she wanted to send me some art supplies. I assumed she'd send a sketchbook and some pencils or something, but boy was I wrong. This amazing woman sent me a ton of watercolor supplies! Paints, brushes, accessories, canvas paper! I am so ecstatic and I even went out and bought an easel tonight so I could start on something as soon as I can! This is the kind of donation that really gets me excited. Of course, I appreciate each and every donation I receive, no matter what it is, but ART SUPPLIES!!!! I can NEVER have enough! So thank you very much, Sarah!

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There are 11 days left to donate to my campaign site.

However, if anyone would like to donate directly to us, you may email me for our address or you can call or visit any Wells Fargo bank and tell them you would like to donate to the Melissa Klein donation account. My first and last names must be used.

Article in the Gazette!

Post by Living with MNGIE.

I want to thank Erin Prater and Christian Murdock for helping us share our story! This has so much potential to help us in so many ways, and I'm hopeful and trying my best to be as optimistic as I can be.

Update!
Since the article has been posted, people have donated $1,964! I have also received emails from people who would rather send me a check! I feel so very blessed right now. I am being flooded with emails and notifications of people donating and wanting to help me in some way, and it's so overwhelming and humbling, I almost feel like it's a dream. It has been such a long and grueling process and I thought my year was going to turn out to be the worst, but it turns out that maybe it's my chance to kick 2013 where it hurts and start 2014 with a new outlook on things. Thank you so much to everyone who is helping us!

This isn't easy.

There is a month left in my campaign and I have only raised $1,285. I'm losing hope and I honestly don't think I can get even half-way to my goal, let alone exceed it. John has pointed out to me that I would need multiple months' worth of treatment, and I can't afford that. And if this did work out, by some kind of miracle, we would end up moving to London because travelling there every month wouldn't be possible for me. Besides, no one is really sharing anymore, anyway. All of the people who are, it's the same people, and their friends/families are just ignoring it. So I have decided that this will be my only campaign. I won't be continuing after it's over, and all of the money will be put into my bank account for safe keeping. I don't consider this giving up, because there have been days where I actually did want to give up completely. I'm going to keep going, I just can't keep doing these fundraisers and selling all of my stuff just to be ignored and overlooked. I need to focus on living the rest of my life, not chasing after a treatment that is way out of my reach.

Now that that's out of the way... I have met with the writer from The Gazette, and hopefully I'll be featured in the paper. I don't have a lot of details, but maybe I will this week.

Christmas is coming! I love Christmas. But I have a feeling this one is going to bomb because I'm getting pretty worse. We had an early Thanksgiving, and even though the food turned out incredible, it took me two or three days to prepare and I was exhausted and nauseous the entire time. I guess I'm still getting used to these patches. I also really miss my family around the holidays, of course, so it'll be a hard hitter. And we don't have the means to decorate, so the house is always a buzzkill.

Well, I'm making John take me out of this house, so off we go. Tonight is my Doctor Who night, and I'm super excited about it. But it's not until 7:30 so I have a few hours to wait. Anyway, I'll update more later.

I can't stand waiting for things to happen.

I have 41 days left on my campaign, and I feel like each day is going slower and slower. I have resorted to adding a bunch of people from high school who I either didn't talk to much or who didn't even give me the time of day, because it seems like my actual friends aren't getting results.
The problem is that people are sharing my link, and other people see it and they either scroll past it or visit my page but don't share it also. That is where we come to a halt. So, I don't know where to go from here. Another issue is that John is very pessimistic ("realistic" he says) and doesn't think I'll raise the money. Hell, I didn't even think I'd be able to raise $500 let alone $1200! I truly believe I could do it, but I need his help.

A few things I have done as far as advertising goes have been calling and emailing TV shows, news channels, grocery stores, and we're even working on getting in contact with mayors and senators. The only thing that has come of that as of now is a possibility of being featured in The Gazette, which is Colorado Springs' local newspaper. I think that's freakin' awesome, but I haven't heard from the person writing about me in a couple of days, so I'm a little worried.

It's really hard to have hope when I try to pray and it's not really working for me. I'm not expecting God to rain money down upon me instantly, I know he will answer my prayers eventually. It's just so frustrating to be going through what I'm going through every single day with no help except from prescription drugs. I still don't think I've accepted it...

There is no cure.
There is no cure.
There is no cure.

I will die too soon.

And it's not fair.

Iron infusions suck.

Sometimes I wonder why I get into the things I do. Allow me to explain.

I have thrown myself into the world of buying, selling, and trading things online, for kicks as well as because I need to get rid of a lot of crap. However I had no idea how much work it entailed, and I have officially buried myself. I have ordered shipping supplies off ebay, amazon, and papermart. I ordered ink for my printer so I can print shipping labels (I also needed ink anyway, so even better excuse). I have junk laying out all over the place, surrounding my desk chair; it's getting ridiculous and it's only been like a week.

I guess it's the best way to keep myself busy... That and writing letters/sending cards when I can. I'm just trying to take my mind off of the campaign for a little bit. It seems like the same people are sharing my link every day, which is awesome, but there's not enough shares. People just see it and scroll past it, I just know it. Or maybe that's just me being my Negative Nancy self again.

I had my iron infusion yesterday. I definitely do not remember having any side effects with my first one, but yesterday's made me want to kill myself. After the infusion, I was nauseous all day and night, vomited at like 3am, and lost a lot of sleep. Then earlier today my hip joints decided to play 'let's fuck with Melissa' and I felt like I had been hit by a bus! I fixed that, though, by taking a hot bath with my eucalyptus oil and some pain killers. I feel much better, thank goodness. I swear, that hip pain is right up there with abdominal pain on my list of the worst feelings ever.

Tomorrow is going to be fun. We're going to have lunch and see Last Vegas with our GI Granny, Terry. I enjoy spending Saturday afternoons with her. It's nice to get out and forget about everything.

I'm off to paint my nails, now! I got my brushes in the mail today so I'm super excited to try them out.

I feel really lucky to have the support that I have. I have like 50 days left in my Indiegogo campaign and I'm up to $625. That's awesome. I only started the campaign a few days ago, and there have been so many shares and likes and already 8 donations. I wish I could pay everyone back.

Today is Monday. I love Mondays. Why? Because my nurse comes to change my dressing and I can take a needle-free bath! Ugh it feels so awesome to be able to submerge my entire body in that hot water. Usually I have to keep my chest out of the water; if my needle gets wet, I get infected. Which is something I can't really afford to happen at the moment. Anyway, she'll be here in an hour or two, and I am getting antsy.

John and I saw Free Birds this weekend... I don't recommend it...

I've become addicted to Listia. It's kinda like eBay, except it's basically giving things away for/buying things using credits. If anyone's interested, sign up here. Finish your first auction and we both get bonus credits. ;D

I think I'm coming down with something. My nose has been running for like 3 days, ever since I threw up Friday night. And I just haven't felt like myself. I hate winter. I love fall and I love the changing of the leaves, and I love the holidays. But once winter comes, my body decides to go into crazy symptom mode, and everything starts to hurt all at once. It's not fun.

I'm going to stop for now, because I don't have much else to say. Other than having an iron infusion this Thursday, I don't have any appointments this week. So that's all, folks.

Let's go, Indiegogo!

If you haven't noticed, I've rearranged the blog a little bit. What do you think? Too green? I don't know. I also added a page that lists my contact information. I'm hoping you guys will utilize it and send me emails, mail me some cards, whathaveyou. As negative as I always am on here, I do love getting encouraging comments and emails from people, and I do respond.
I have also added a wishlist page, where links to my Amazon wishlists are provided for those who would like to send me a gift.
If you've noticed all of that, I'm sure you've noticed the Indiegogo widget to the left of the blog. I would love it if you visited my Indiegogo page and donated toward my cause. And of course, if no one can donate, everyone can share the page! The more people who see it, the more chance I have of reaching my crazy goal to get treatment.

That's it for this post. Hope everyone has a nice weekend. :-)

Happy Halloween!!

I love Halloween. I was gonna go trick-or-treating but I don't think I can handle the cold weather. So I made John carve a pumpkin (our second one because our first one collapsed...) and we bought a big bag of candy to hand out. I'm pretty excited, but I don't think he is. He doesn't get into the holidays much.

I, on the other hand, love holidays, and I'm always looking for some way to be festive. We can usually never afford to really decorate the house, so I just do other things, like paint my nails:

Pretty cool, huh? The white parts are glow-in-the-dark.

We don't go see the horses anymore, at least until it starts to warm up. So last Saturday we went to Happy Apple Farms; I wanted to go for the apple cider and the pumpkin patch mostly. It was fun. There was a "hayride," too. It wasn't much of one, but the whole experience was still fun. You can view the pictures here.

As far as health stuff goes, we have officially invested in a bedside commode. And I have moved back into the bedroom, so no more on-the-couch for me. It's been a struggle to stay in there overnight because it's always so cold in there. But we put the heated blanket in there so that should make a difference.
The cramping and bloating from the imodium has stopped, finally. I still have a cramp here and there but nowhere near as bad as it was.
I got my birth control patches last week, so now I'm just waiting for my period to rear it's ugly head so I can start applying them.12 weeks on, 1 week off, repeat.

Tomorrow is mine and John's 3-year marriage anniversary. We have been together for 6 years and married for 3. I can't believe how fast time flies... I think we're going to stay in, though. I don't really have any ideas. Oh well.

Happy Halloween, everyone.

The world lost an amazing man Sunday afternoon. Kenny was basically my big brother. He was a part of our family. I feel like I should be over it but I haven't stopped thinking about him since my dad told me Monday night. I thought I was done crying, too, but I broke down again earlier today. I've never lost anyone so close to me before, and I'm having trouble grieving. Well, maybe I'm grieving right, but I'm having issues accepting things.

The funeral is Friday. Of course I won't be there, and that kills me. I am looking into information about skype or facetime services, so hopefully something happens.

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I had to get a blood pressure monitor to keep track of my BP and HR until I see my cardiologist again. I probably need to check it, because I haven't remembered to check it in two days... oops. Just getting over my period, thank god. Every time it comes everything gets worse and feel absolutely terrible the entire time. It's not fun at all. My next appointments are on the 23rd; I see my PCM and my cardiologist. We (my PCM and I) are going to discuss birth control. I have to get my hormones on track because it seems like they really wanna kill me. Seeing my cardiologist to figure out what's up with my heart. It's been working harder than it should and he prescribed me atenolol for my palpitations. My nurse said my BP was fine, but he may be trying to slow my heart rate a bit... who knows. I suggested POTS and dysauotnomia.

Other than that, no big appointments.

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This weekend has been a good one, overall. If you don't count the accidents, I'm happy with how things have turned out. John and I saw Carrie on Friday, and of course I loved it! We've been playing our game together, cooking together, watching things together... and we're in the process of having an Iron Man movie marathon, Avengers included. We carved a pumpkin today, I'll be adding photos very soon.

Things weren't going very well between us when we had roommates. I felt alone most of the time and I was getting sick of watching the guys play GTA V and Diablo III. Seriously, sometimes I wanted to take a hammer and bash their TVs in. Now that it's back to just us two, I don't feel as claustrophobic or left out of anything, which it's much better. I'm also only having to share the bathroom with John and not three other people. Jeez.

This post has been in the process for a week now, because I've just been really stressed out and overwhelmed with some things that happened. But I'm going to post it now, and I probably won't update again for another few weeks, knowing me.

Until then...

I was going to try and type up a happier blog post, but I swear the universe is out to get me right now. I just can't win, can I? This morning around 2am, I threw up everything I ate yesterday. That wasn't fun at all. I'm angry because everything I ate yesterday were easy things and things I knew I could digest well. Including chicken noodle soup. It's not fucking fair!!

When I woke up this morning, I weighed myself, and the scale said 59.6 lbs. FIFTY-NINE. That's a new low for me. I feel like yelling and kicking and screaming and crying. Throwing things. I can honestly say now that I am not happy with the life I have been given. I am so pissed at God it's not even funny, and all I want to do is pound on something and ask why the fuck he had to do this to me.

I've tried to count my blessings and show my gratitude for the things I have, but do you even know how hard that is while I'm carrying this stupid disease around? Shit keeps happening to me and it's like I'm not allowed to be happy or okay.

I do know I have plenty to be grateful for, and more than what I could ever imagine. But is it so bad to be angry and hurt that I can't really enjoy anything without feeling like shit first?

I am so done.

Today is one of those days where I can't stop throwing up. It's been a good two weeks since I last barfed, and then Monday it happened once, and I was okay. Nausea has been all over me since, and the night before last I jolted awake and vomited on the floor and had to run to the bathroom. Now today, I woke up feeling nauseous as hell, took my pills, and went and threw them up. Played my game for a bit, went to use the bathroom, and then instantly got nauseous again. Turned around and barfed. By two o'clock I was already exhausted from throwing up all morning, so, still nauseous, I went to sleep for 2 hours.

It is now 5:16pm and I just spent an hour in the bathroom vomiting, dry heaving, and then brushing my teeth.

I didn't tell you guys, but... I had gained 4 lbs in the last 2 weeks. I was at 68 lbs. They're adjusting my TPN. I guess my body is trying to tell me that I can't gain anymore. Because now I weigh 62.8 lbs.
I feel like crying.

My mom's birthday was yesterday. I called her, but we didn't talk long because I can never understand people on the phone. I'm probably going to write to her soon, hopefully I will be able to regain the strength in my hand.

I got my AFOs finally the other day! I'm very happy with them, and I didn't want to take them off until they started hurting. My feet are too bony, so the brace up against my bone in my feet kills me. We're going back Tuesday to try and fix it.

Anyway, here's a picture:

Gotta love that derp face.

I'm hoping to go to Glen Eyrie again, this time for tea. I just need to figure out John's schedule...

So, what have I been doing with time other than throwing up and whining about it? Playing video games, reading the Bible, and sleeping.

Not all that enlightening. Hoping to see some movies in the upcoming days/weeks, including Prisoners, Don Jon, and Runner Runner... But the only one that John wants to see in theatres is Don Jon, and he doesn't even want to see Prisoners. So... whatever.

I'll just go wherever he goes I guess.

I'm tired.

I am so tired. I don't know for sure if it's the gabapentin or that I'm actually just plain tired. I haven't had the greatest couple of days. Yesterday and this morning I woke up with soiled clothes. I had to wake John up both times for help. I'll have to buy more underwear because I've ruined so many. I don't think people understand how embarrassed I am of myself now. I almost don't like going out anymore because we have to drag my wheelchair out, and I feel like I'm in everyone's way.

How do you adjust to a life of illness and disability when all you've known for 17 years has been semi-normal? I thought it'd be easier than this.

John and I are getting sick of each other, I think. We had a fight the other day, it was stupid. I was being a bitch and he was holding everything in... It ended with him throwing my phone through a wall. We didn't talk to each other for a couple hours, and then he acted like nothing was wrong. I'm still kind of irked at him for that, and I try to get him to open up with me more, but I know he won't. I told him I think we need a break, and he agrees, but we can't take one because I need him. I just don't know how much he needs me...

This whole thing is frustrating for everyone involved. That's one reason I don't want to move back home. Everyone will have to take care of the sick bitch in the wheelchair. Want to go somewhere? Gotta take the sick bitch with us. The sick bitch shit herself again, gotta clean it up. Watch out, she might barf on you.

There has been quite a lot of rain here in the last few days. Flooding all over Colorado. I like it, but the flooding really gets in the way. I won't be able to go see the horses tomorrow because I don't want my wheelchair getting stuck. (oh, did I mention I'm seeing them again?)

I've been praying... But I haven't felt God for a while, to be honest. It seems like I give up more often than not now. I always want to cry, and I'm always on edge. Yesterday we went out to a Chinese buffet for dinner, and it was raining really hard on the way home. I guess John hit a dip in the highway and I had I small anxiety attack. I was hyperventilating all the way home. I've become more and more scared of things, like driving. I don't drive, obviously, but my body immediately tenses up when I get in the car. Maybe I'm just still afraid of dying, and the car has nothing to do with it.

Grocery shopping day. I hope it goes better than the last time we went.

I'm not sure how to start this. I don't remember what I mentioned in my last post, if I mentioned anything about this at all...

I've been talking to a doctor in London, Dr. Bridget Bax. Mostly updating her on my condition, and asking for details on the latest research and therapies for the disease. Well, come to find out, this therapy costs $6,100 a month. And I would have to travel to London to have it done. Unless of course, arrangements were made for me to have it done in the states, and my insurance would cover some of it... But I'm not sure about any of that yet because I haven't talked to anyone about it. I don't even know if I want to try another treatment attempt, to be honest.

I haven't been feeling too happy lately. Pretty depressed. I sit back and watch my friends back home go on with their lives, taking care of their families, going to school, having fun, etc. It's hard to watch when I feel all alone here. John has his friends, and I have a few people who would visit if I asked, or if they had the time, but I don't want visitors. I want to hang out. I want to go shopping, have fun with my friends. Instead I'm drowning myself in my artwork and internet and video games, and I feel alone.
My problem, though, is that I don't want to go home. I don't want to live there. I'd rather be where I'm already taken care of, with my doctors and everything. There's more to do here...

The last thing I want is a pity party, so I'm gonna stop complaining.

Maybe tomorrow will be better. Terry is taking us up Pikes Peak on the Cog Railway. I've never been, and I'm hoping it won't be too hot or cold for me. I better charge my camera.

breaking down

I'm not really doing too well.

First, let me just apologize for not updating this as often as I know I should. I made this blog for future MNGIE patients, to be able to see how the symptoms affect the person. My goal is to update at least once a week, and it's been like two... So. Sorry 'bout that.

Another thing, I've been letting myself drown in things in order to try and forget about life. I don't enjoy my life right now because of how I feel in it. I'm trying to stay positive but that's so hard when I'm trying to stay alive at the same time. By "drowning" I mean letting myself get lost in my video games, internet, and books. John stays entertained by his friends and our roommates, so I just stay quiet and try to forget the fact that I'm dying.

It's really difficult.

I weigh 61 lbs. If you're wondering what 61 lbs looks like, try imagining one of those fucking anorexia advertisements. Literally skin and bones. My husband was rubbing my back the other day and he ended up at my lower back; I couldn't help but want to cry because his hand was resting on my pelvic bone. I don't think people really understand how much this is affecting me. I always thought I was skinny as hell, but once my bones start showing, it gets terrifying. The more weight I lose, the worse things get.

My symptoms are getting worse, too. Especially since I started my period two days ago (why does it make everything worse?!?). Go figure, just in time for my birthday. I was doing okay with vomiting, with a record 3 days without dealing with it, and then I jolted awake from nausea last night and spent a good 45 minutes throwing up whatever was in my stomach. I'm running out of patience.

Another nice kicker is that now I guess I'm not retaining any hydration by mouth. Meaning no matter how much I drink, I'm still borderline dehydrated. Doesn't that just take the cake? So I wake up in the mornings feeling like I'm already dead, except my heart is beating so hard and fast in my chest that it feels like it's in my stomach. This in turn makes my anxiety flare up, I'm panicking because I don't want to die at that moment, and I just sit there waiting for the ability to get up and get some water or something.

So I'll probably need to keep doing my fluids every other day. Can't do them every day because I'll blow up like a balloon.

Yesterday was ridiculous. Of course, it's that time of the month for me, and also pay day, so John and I try to go run errands. I'm on the brink of tears, just because, so anything would be able to set me off. I do okay up until we get to King Soopers, and I get in that stupid fucking power chair. For one thing, it's warped or something and the wheel keeps trying to turn to the right. Then it kept stopping even though I was pressing forward, and that frustrated John so at that point we were both agitated. Long story short, I ended up in embarrassing, ugly-sobbing, snotty tears, and John took me home and had to go get groceries himself.

I can't do anything anymore. I feel like I'm in everyone's way. It takes me forever to get anyfuckingwhere. I can barely stand up by myself. Can't walk by myself. Do you even know how hard it is to get out of the bath? I mean even with those handles and bars, I can't really lift myself out without using most if not all my energy. I end up just sitting on the toilet in a towel for 30 minutes waiting on the strength to put my goddamned clothes on.

I just want to be at that stage where I don't care anymore. Like an elderly person on their death bed, you know, all peaceful and "ready", right? I don't want to be bitter and angry and uncomfortable. But I'm not ready yet. I'm really not. I have so much I want to do, and I feel like I'm being rushed to do it all. I keep telling people I'm taking it a day at a time but honestly I think I'm trying to shove everything into one day so I don't miss it. And even then that ends up being me playing my 3ds all day.

I don't even want to type anymore.

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.

------------------------------------

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.

Lots o' updates.

I had my levator resection Friday. It was terrible. Seriously the worst procedure I have ever gone through. I was waiting for it for about a month, anticipating and talking to other people who have had it done, being reassured and whatnot. I was okay, even after talking to the surgeon the first time. Everyone said they didn't remember or feel a thing. The surgeon said I wouldn't remember it at all.

Bullshit. I remember every single little detail, and that shit sucks so hard. They didn't put me under because the surgeon needed me to be awake so I could open and close my eyes when he told me to. They gave me a little something to "take the edge off" in my IV, and then he numbed my eyelids with a tiny needle, which I definitely felt, and it definitely hurt. By that point I was already crying and hyperventilating, so they gave me more oxygen. I was shaking, crying, squeezing the nurse's hand off. It was terrible. Mind you, once my eyelids were numb, I couldn't feel the procedure at all, but there were certain pressures I felt that I did not want to feel. And then, I think he used a laser or something, because I could smell my own skin burning. It was as if I were being tortured by SAW. Ugh!

Anyway, here are some before and after shots.

Freaky, right? Yeah. I have to put this antibiotic gunk on my stitches twice a day, and the surgeon gave me some eye drops because my eyes won't close all the way for the first few days. That sucks, too.

Did I mention that I finally got my wheelchair? Because I did. And it's awesome.

This weekend has been pretty amazing. My husband and I are pretty bad at saving money, and we've been shopping quite a bit. More than we should, really. But this isn't a financial advice blog. We went to see Monsters University Thursday as a pre-surgery fun date. It was really good. Friday was the surgery, and after that I pretty much slept all day. That night Thompson (John's friend) came over and they ordered pizza and stayed up all night. Saturday we went grocery shopping, and other-stuff-shopping. And then today, after I woke up from an accident and cleaned myself up (seriously, I hate this shit), we got ready and drove to the Town Center in Aurora because my incredible husband wanted to take me to the Disney store! I have the best husband ever. It was so much fun and even though we both came home absolutely exhausted, I am extremely happy with how the day turned out.

I'm not sure what's to come of my time with the horses... I haven't heard from anyone, but John is going to call the instructor this week to see how things are. We haven't been going to the art class on Wednesdays, but I've been drawing more, so I'm okay with that.

My next appointment is next Monday, the 8th. It's my follow-up with Dr. Slade, the surgeon who cut my face up. ha. That should go pretty good, unless my stitches decide to be stupid and continue to annoy the hell out of me. Damn these things.

My TPN just beeped at me, and it's time to unhook, so I'm gonna get on that. Oh! I don't remember if I mentioned this, since I don't read past posts. We switched my TPN infusion from night to daytime, and from 14 hours to 12 hours. So I'm getting more sleep (unless I have accidents) and I have much more energy in the daytime. They also added hydration fluids so there's that, too.

Okay, off I go. The bath tub is screaming my name.