I keep meaning to write, but I have so much to say that I can't even start. So instead I let it keep building, making it all the more difficult to write. I'm sure most of you have been here at some point with some task. It's a really great cycle to get into :)... Continue Reading →
On September 24 I reached 3 years post-BMT. This is a milestone that I never really imagined for myself, and being alive years after receiving essentially a terminal diagnosis continues to shock me every day. That said, this past year was horrific and traumatizing in even more new ways. It seared into me an intense... Continue Reading →
Hi everyone! People keep asking me questions like "where are you even living?" and "are you ever graduating?" and "what is even happening" and to be honest I haven't been answering them because I have had the same questions. But now that the dust has settled I can say that I did end up going... Continue Reading →
This is probably my longest absence from the blog while conscious. I was going to write "while not in a life threatening situation" but that wouldn't be true. The truth is that my mental health has deteriorated an amount that I have never experienced before. Remember when I bought a new car a few months... Continue Reading →
Remember in January when I said that a best case scenario was slow, painful improvement? Well, here I am in the best case scenario. Why does a best case scenario look like this? That is a great question. Probably because we don't even understand the cellular mechanisms behind GVHD, and also because having a systemic... Continue Reading →
TL;DR: Donate to my baby hero fund at the link here. If/when we reach $10,000, I can establish a fund dedicated specifically toward young adult survivorship and GVHD. Also, if you have donated to St. Baldrick's in the last year or shaved your head (or raised funds in another way) then you can direct that $$... Continue Reading →
Because I have been having such a hard time, I haven't written as much about my improvement as I could have. People are confused and I am getting a lot of questions, so let me explain: My eyes, mouth and liver are stable: this is fine for now. I do have uncomfortable symptoms and I... Continue Reading →
I literally forgot that I also have LIVER gvhd in my last post. I have more problems than I can even remember. Anyway, my health has been improving (very slowly). When the scleroderma first appeared in September, they told me it would be at least a year. They were right. I'm still not ready to... Continue Reading →
