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.
--------------------------------
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.
--------------------------------
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!
--------------------------------
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.
No comments:
Post a Comment