Yeah, I'm a Jeopardy geek.
Anyway, sorry it's been so long since I've checked in. I was sick for a month and without internet access (besides my iPhone) due to a glitch between when the old service was disconnected and the new service hooked up. But I can't say that there was a whole lot to write about that I didn't get to fill you folks in on; it's been relatively boring around here. picking and carving pumpkins, sponge painting pictures of the gorgeous fall leaves, watching copious hours of House (I'm now an official addict; a state that becomes official when you start having conversations about the lead character as if he actually were a person), watching the Phillies finally make good on their World Series dreams, and researching the hell out of stem cell transplants.
I don't usually watch baseball, but I've got a big soft spot in my heart for the sport, and our home team especially. My grandfather loved baseball and for the four years that I lived with him before his death from Parkinson's disease, he watched every single Phillies game. He almost got to play pro-ball, made it all the way up to the local AAA team, but first WWII and then a growing family made it a rather impractical career choice. I don't know how many people know about this, but many baseball players that enlisted during WWII were sent to Hawaii for a bit of extended Spring Training. After his brother was killed in the war, my grandfather enlisted to avenge his brother's death, only to find himself being sent to Hawaii to play ball with the greats. The only shot he fired during that war hit a cow that they had mistaken for a Japanese spy. So baseball gives me warm and fuzzy feelings. I wish that I had gotten to know him better, but I know how excited he would be to be sitting here watching the Phillies playing such excellent ball, only minutes away from winning their first World Championship in twenty-eight years. But enough of the tear jerker reminiscing stuff...
I had a really great weekend this weekend. Sunday was the 17th Annual Lupus Loop for the Tri-State Chapter of the Lupus Foundation of America. I didn't walk it, but at least four of my awesome family members pushed my wheelchair through Fairmount Park on a beautiful morning. It was so great to have so many of them show up; my mom and dad were both there, as were my brother, BF and the little man, step-mom and all of the kids, my uncle, two cousins from my mom's side, and two from my dad's side that I rarely ever see, but really enjoy when I do. Oh and my oldest cousin brought her fiancee, who is really a great guy, and their five year old daughter. It was so great to have so many people that I care about and who care for me there and afterward most of us went back to my mom's for lunch and just got to hang out and visit for a while. It was really enjoyable, even though I was exhausted by 3pm and went home and slept from 4 til 7pm.
I also got to stop in to my old job today. They were doing flu shots for employees, their spouses, and kids, and BF still works there, so we got the little man a flu shot and a tour of "where daddy works" that he has been aching for for almost a year now. It was nice to see some of my former colleagues. It's been two years since I worked there and so many people are gone, it was odd, but so familiar. As I've said before, I'm sure, I was fired, but it was really the best move for both me and the company, my poor health on top of a full-time job was really putting me in a pinch with school and I can only juggle so many balls at once.
But hopefully I'll be leaving one of those balls behind in the upcoming months; I'm pushing hard for a stem cell transplant. I see my PH specialist tomorrow where we'll discuss the results of my pulmonary function tests and whether she wants to move me from Imuran for immunosuppression to Cytoxan. If she wants to use Cytoxan and my lung function is within the eligible range, I'm going to advocate as hard as possible for the more extreme treatment. The way I look at it, if I'm going to need to be on Cytoxan then I would rather be on a high dose and very sick for a short time and have a cure or extreme improvement than take a low dose over a long period of time that will leave me open to every infection that comes along and still not be a possible cure. I'm too young for this. There is a definite chance with stem cells that at some point I will relapse and my immune system will go haywire again, but I really just need a few years to get my life on track; five, ten, fifteen would be nice, twenty would be a dream, but I really just need enough time to get my career on track and to get my family on track. I still wouldn't be able to become pregnant because that could trigger a relapse, but I could do the surrogacy thing and be confident that I could be there to care for the child rather than always being sick. I know I'm putting the cart before the horse, but hope and dreams are all I really have right now. I've been feeling pretty awful. I had a sinus infection and a GI infection at the same time and then had an allergic reaction to the antibiotic I was taking. It's taking forever for me to get an answer from disability. My house is a mess; we have so much crap that's just taking over. So all I can do right now is dream about what life could be like if I can have the transplant and if it works. The best case scenario hasn't ever seemed this good. Before I got PH I wasn't in the category of patients with life threatening complications so I wasn't in the group that was eligible for the transplant, which is the only real possibility of a cure that's available. So it's odd that it took this horrible illness to get me to a place where I have the hope of being well again...and it's pretty awesome.
Well, the Phillies just won and I think I'll end it on a high note for tonight. I promise I'll be getting back to my normal yappy self now that I'm back online.
