Matt and I outside of Ace Endico. A restaurant supply store open to the public.
On this blog I know that I have mentioned my boyfriend Matt several times. :) I have also been promising to tell you all about how we met. After all, I live in New York and he lives in Ohio. Plus we both have Nephropathic Cystinosis. Since there are only about 500 of us in the United States this in itself is pretty remarkable. At least I think so. :)
So here is the story:
A couple of years ago I began to find other people with Nephropathic Cystinosis on Facebook. And then I found out that there were groups for this on Facebook. I believe about a year or so ago a Cystinosis patient from Australia named Serena started the group The Cystinosis Sanctuary. It is a Facebook support group for adults with Cystinosis. And it is only for people with Cystinosis. No parents, no doctors, just us.
In November of 2012 I get a friend request from this guy. Philip Matthew Stinson II. I see what mutual friends we have and see that they are all either people with Cystinosis or people involved with the Cystinosis community. And then I notice that he is also in the group The Cystinosis Sanctuary. So I go ahead and accept his friend request. Soon after he starts messaging me on Facebook. I find that he is really easy to talk to and that we have a lot in common. And then I ended up in the hospital for most of December.
When I got home I still couldn't really do much. He would Facebook message me every day. I started to send him messages too. And we would Facebook message multiple time per day. Somewhere around January we exchanged cell phone numbers and started texting. I got him to start watching the show Lost (my favorite show ever). In February we were both watching Lost at the same time and texting each other during it. I said "I wish I had a guy as crazy about me as Charlie is about Claire." And Matt said "About that...". Needless to say, I figured out from this comment that he liked me. But I did ask what he meant, just to be sure. (Oh and by this time I had found out that he went by Matt).
The next day Matt asked me if I would go out on a Skype date with him. If I remember correctly he said it like this "Would you do me the honor of going out on a Skype date with me?" Of course I said yes. That night we had our first date. Via Skype. (After NCIS was over. It was a Tuesday. February 19th). We talked for nearly two hours straight. But I had to go to do my medicine. We talked about all sorts of stuff. Books of course. Doctor Who (Matt's favorite show). Lost (my favorite show). Cystinosis. I also recited what I had memorized so far of Hamlet's famous "To be or not be..." soliloquy for him. (One of my Bucket List items is to memorize the complete soliloquy).
The next day he went into the hospital. He had a lot of the same symptoms that I did in December. Hallucinating et cetera. We've been together ever since February 19th, 2013.
In May he came to visit me in New York. He was here for my college graduation and my 22nd birthday. And his 24th birthday.
We saw each other again in July in Washington D. C. for a Cystinosis Conference (my first ever). At the Marriott no less.
We're a very good fit for each other. My one month anniversary gift from him was a book. The Neverending Story by Michael Ende. (I had mentioned I loved that movie as a child and would love to read the book).
Our seven month anniversary just recently passed. Below is a video (yes, without sound. Sorry. That's what happened when I embedded it from my computer) of us dancing at my Graduation/Birthday Party in May. (Graduation was the 17th. My birthday was the 18th). We're dancing to "Lucky" by Colbie Caillat and Jason Mraz. <3