Tuesday, January 18, 2011

A Selfish Plea to my Tweeps

The following is going to be a selfish plea to anyone out there listening. I apologize in advance for being so and assure you that I am not normally this selfish. Not always, at least. }-)

As most of you know, I have a pretty serious illness. It's called Myelofibrosis; it attacks the marrow inside my bones and turns them into useless fibers. It's the marrow that creates all your blood cells that your body needs to transport oxygen, fight off illness, and clot and close wounds. As more marrow is turned into fiber, my body is less able to replenish what it needs to carry on and I'm forced to received blood transfusions and take injections to force the remaining marrow to work overtime. Eventually, my marrow will fail completely and then... well... Not so nice things happen.

I am very lucky, however. While I have been afflicted by this disease (by the doctors' estimation) since I was about five and there is no known easy cure, there is a way out. A complete bone marrow transplant will cure me and I'm scheduled to have one in February @ the Hospital at the University of Pennsylvania. For those of you that don't know what's involved in a complete bone marrow transplant, I'm going to be completely irradiated and have strong chemo (bye, bye hair! My one good feature!). They then trasnplant stem cells into me with a blood transfusion and voilah! It's a whole new me! Literally. Many things might change. In fact, I was in the waiting room one day talking to someone who had a successful transplant of his OWN stem cells and he said that before the transplant, he could not stand chocolate ice cream. After the transplant, it's all he will eat! How odd, no? Well, when I saw Dr. Stadtmauer later that evening, I told him, "Listen Dr. If I come out of this thing a Phillies fan (he's a huge fan), you and I are going to have WORDS." Hahaha. For those of you that don't know, I'm a huge yankees fan. Enormous. I live and die with the pinstripes.

But I digress. Since the radiation/chemo cocktail is basically going to destroy any shred of any immunity that I've ever developed, I will be spending the next 4-5 weeks hospitalized simply rebuilding every immunity I've ever had since birth. Sounds like fun, right? I guess we'll see.

This story is getting long and I apologize. I'm going to try and cut to the chase here.

I'm going to be spending a lot of time in the hospital starting in February. Hell, I already spend a lot of time at the hospital. I had a birthday party last Saturday and was going to use any money I received to buy a new laptop to keep me connected to the outside world while I was in the joint. Unfortunately, due to issues I've been trying to resolve for a while, my paycheck from my job (I still get paid thanks to great short term disability coverage offered through my awesome employer... and THEY pay for it!) has been suspended and the money that I received will more than likely have to go to bills and other things to keep things running.

And this is where my selfish plee comes in. I'm asking for donations to "Paulash's laptop fund". I know it's completely materialistic and I'm half embarassed to even be asking this, but I'm going to be cut off from the world. I thought I would be able to buy a nice modest laptop and be able to Skype with my loved ones or stream Netflix or watch other movies or just to keep myself entertained. I'm even going to be spending some time in isolation because for a while, I'm going to have zero immunity and under heavy medical scrutiny.

I know I'm being selfish. I know times are tough for everyone. I know there are bigger things in this world that could use better attention. But if you can, and you would like to donate absolutely anything, I would be much much obliged. Thank you!





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