Ahoy mates! Bring yourself and your "booty" for a evening of activities, friends, and fun to support a great cause. BYOB and don't forget a few dollar bills and spare quarters for games. Food will be provided and feel free to dress in your pirate "get-tup!" Eye patches provided for your convenience!!
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Tuesday, March 31, 2009
Wednesday, March 18, 2009
The Medicine
It’s been a year since I was diagnosed and the only real change to my life has been the medicine. And it has been quite the change. When my doctor told me he wanted to put me on a treatment that could slow down the black spots eating my brain (that’s science), I said “sign me up!” When he said the only treatments that existed were shots that I would have to do myself, I said “let them eat my brain!”
But they don’t let you get away with that. So one Saturday a nurse came to our house with fake needles and a rubber ball to practice. And we practiced. Keith even got in on the action in case there was some emergency where my arm fell off and I couldn’t do it myself. He still begs me to let him try it, but I do not trust him. At the end of the nurse visit, I gave myself my first real shot. Right in the thigh. And I didn’t pass out. Turns out I wish I had passed out because the side effects are way worse than the actual shot.
About 3 hours after the injection, I started to get fever chills. Then the muscle aches. Then the nausea. Then more fever chills. This lasted for about 4 hours. It was basically a burst of flu. I did research on how other people dealt with the side effects and found that most people did the injection at night and tried to sleep through it. Since I have to do this once a week, I picked Friday night so that I didn’t have to get up early the next day, but I also still felt like I had the weekend. The first few months were not fun. I kept trying different “cocktails” to get myself through it—combinations of Tylenol PM, Ibuprofen, Benadryl, Melatonin—but I still woke up in the middle of the night with cold sweats and muscles aching.
Someone finally suggested that I stay hydrated on the day of the injection and it has been the greatest advice ever given to me. So now I have my routine where I drink plenty of water on Fridays, take two Advil PM (far superior to the Tylenol), and fall asleep. I haven’t woken up in the middle of the night in several months. I have also found that if I eat a protein bar on Saturday morning, it cuts down on the fatigue that I usually feel that day. It’s kind of like the medicine just zaps your energy for 18 hours, but I try to ignore that. It’s better that my brain getting eaten.
The main reason I want to help raise money for MS research is because they are currently developing an oral form of this medication. This could drastically change my life. It would be nice to be able to go out for drinks on Friday night. Or stay up past 10:00 pm. Or not have to stick a needle in my thigh (I really don't think I'm very good at it).
But they don’t let you get away with that. So one Saturday a nurse came to our house with fake needles and a rubber ball to practice. And we practiced. Keith even got in on the action in case there was some emergency where my arm fell off and I couldn’t do it myself. He still begs me to let him try it, but I do not trust him. At the end of the nurse visit, I gave myself my first real shot. Right in the thigh. And I didn’t pass out. Turns out I wish I had passed out because the side effects are way worse than the actual shot.
About 3 hours after the injection, I started to get fever chills. Then the muscle aches. Then the nausea. Then more fever chills. This lasted for about 4 hours. It was basically a burst of flu. I did research on how other people dealt with the side effects and found that most people did the injection at night and tried to sleep through it. Since I have to do this once a week, I picked Friday night so that I didn’t have to get up early the next day, but I also still felt like I had the weekend. The first few months were not fun. I kept trying different “cocktails” to get myself through it—combinations of Tylenol PM, Ibuprofen, Benadryl, Melatonin—but I still woke up in the middle of the night with cold sweats and muscles aching.
Someone finally suggested that I stay hydrated on the day of the injection and it has been the greatest advice ever given to me. So now I have my routine where I drink plenty of water on Fridays, take two Advil PM (far superior to the Tylenol), and fall asleep. I haven’t woken up in the middle of the night in several months. I have also found that if I eat a protein bar on Saturday morning, it cuts down on the fatigue that I usually feel that day. It’s kind of like the medicine just zaps your energy for 18 hours, but I try to ignore that. It’s better that my brain getting eaten.
The main reason I want to help raise money for MS research is because they are currently developing an oral form of this medication. This could drastically change my life. It would be nice to be able to go out for drinks on Friday night. Or stay up past 10:00 pm. Or not have to stick a needle in my thigh (I really don't think I'm very good at it).
Friday, March 13, 2009
Welcome
This is a blog that is dedicated (for now) to the Nashville MS Walk on April 18th, 2009. This year I haven't been very good with the advanced planning, but I'll chalk it up to lessons learned.
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