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.