31-Aug-2010 (Infusion Day: Status Indeterminate)
"Prednisone makes me hungry and I mean fungry[sic]. But I have to take it the three days on and around my infusion day to help with my allergic reaction to the Remicade. Prednisone itself should help my symptoms because it reduces the inflammation in my colon, but it also forces me to ingest a tremendous amount more food than I am not used to eating. See fungry."
VC lays out his preparation leading up to receiving his 3 hour infusion of Remicade, an immunosuppressant. He takes Benadryl and Tylenol in addition to the Prednisone to fight the side effects of Remicade.
"On the day of [the infusion] I have to eat something; Me and needles on an empty stomach is not a good idea. But by this time all the extra food I consumed from the previous day starts giving me trouble, so I rebound back to not eating very much. I eventually eat something neutral, but I have to be careful not to eat to close to my infusion start time so that my blood pressure doesn't drop to low. Needles and low blood pressure is not a good idea either. All the while drinking plenty of water and [electrolytes] so that my veins don't collapse during the stick."
VC pauses a beat.
"Getting the IV stick hurts, I mean I feel every millimeter pierce my skin and advance into my hand. After my third infusion, the Remicade put me into remission for 97 days. After having suffered for 9 consecutive months, [during] those 97 days I felt so incredible; almost invincible. From that point on no matter how many times I relapse, no matter how many days I suffer with symptoms, I no longer view the stick as causing me pain. It pales in comparison to the alternative. I sometimes catch myself smiling when I get stuck... sometimes I laugh too."
-xxxx
Today could be the day...
31 August 2010
29 August 2010
29-Aug-2010 (37 Days in Relapse)
The new season has officially started, with the kick-off party this past Thursday (26-Aug) and the teams first group practice yesterday (28-Aug). The team is 50 members strong and still growing. People from all over metro St Louis, all from different backgrounds unified for one purpose.
Choices: During the team practice a few of the team members decided to share their back stories. [Safari] was the last to share. He stood up and announced that he had Ulcerative Colitis; that his UC was under control on his current battery of medications. Only one side effect of the medications is kidney failure. [Safari]'s wife wanted to find some thing else, something with out a serious side effect but [Safari] didn't. He wanted to continue because Kidney failure is a chance, but the affect on his UC was proven.
-xxxx
what you see here...
The new season has officially started, with the kick-off party this past Thursday (26-Aug) and the teams first group practice yesterday (28-Aug). The team is 50 members strong and still growing. People from all over metro St Louis, all from different backgrounds unified for one purpose.
Choices: During the team practice a few of the team members decided to share their back stories. [Safari] was the last to share. He stood up and announced that he had Ulcerative Colitis; that his UC was under control on his current battery of medications. Only one side effect of the medications is kidney failure. [Safari]'s wife wanted to find some thing else, something with out a serious side effect but [Safari] didn't. He wanted to continue because Kidney failure is a chance, but the affect on his UC was proven.
-xxxx
what you see here...
24 August 2010
24-Aug-2010 (32 Days in Relapse)
"So I'm back in the same boat I was 6 months ago. Same [sinking] boat." VC remarks after what he calls a short workout. "I want to do this [half marathon], I really do. That's why I keep signing up. But the disease wont let me run. Every time I try [it] keeps knocking me down... Well, maybe thats the point. Maybe that is why I am here, now..."
-xxxx
Help me, help us
"So I'm back in the same boat I was 6 months ago. Same [sinking] boat." VC remarks after what he calls a short workout. "I want to do this [half marathon], I really do. That's why I keep signing up. But the disease wont let me run. Every time I try [it] keeps knocking me down... Well, maybe thats the point. Maybe that is why I am here, now..."
-xxxx
Help me, help us
15 August 2010
12 August 2010
12-Aug-2010 (20 Days in Relapse)
A new season has started for Team Challenge, and the start of every journey begins with a single step. The first of the informational meetings took place last night (11-Aug) with what the team deemed a really good turn out: a lot of RSVPs; a lot of walk-ins, and most important of all, a lot of participants signed up. AC and VC were in attendance to talk about the fundraising portion that the participants are required to do. AC did the speaking and VC sheepishly stood in the back:
"It's intimidating, now from a different perspective. It's my second event but I'm still in a first; first time as a mentor. [I] had to meet a lot of people and socialize. Which is still not something I do well..."
-xxxx
A new season has started for Team Challenge, and the start of every journey begins with a single step. The first of the informational meetings took place last night (11-Aug) with what the team deemed a really good turn out: a lot of RSVPs; a lot of walk-ins, and most important of all, a lot of participants signed up. AC and VC were in attendance to talk about the fundraising portion that the participants are required to do. AC did the speaking and VC sheepishly stood in the back:
"It's intimidating, now from a different perspective. It's my second event but I'm still in a first; first time as a mentor. [I] had to meet a lot of people and socialize. Which is still not something I do well..."
-xxxx
09 August 2010
9-Aug-2010 (17 Days in Relapse)
Today is a milestone day for VC. He has now been in relapse for as many days as his last remission. "This flare up is considered over as soon as I have as many days in remission as I have in relapse." That is his philosophy he tells me. So now VC will start accumulating deficit days pushing his absolute recovery day further into the future.
"Does today have an impact on your decision?"
"On a long enough time line it shouldn't have any impact, but seeing how things are now, it definitely is a factor."
"What is your decision?" I ask him directly.
"[AC] and I made up our minds, and in light of what today is just reinforced that decision. One of us is going to have to give [H] the bad news.... she is going to have to put up with us for another season."
"A few days ago you were concerned about this being difficult-"
"Yeah its going to be hard, so is living with this [disease], maybe that's the point. There is always going to be someone out there who has it worse than me, so may be I just need to suck it up and do it cause things can always be worse. Remember: I am still trying to forget what having Crohn's disease feels like. Until that happens, and as long as I am able.. I've got to keep on movin." VC said that last part in a sing song type voice...
-xxxx
Today is a milestone day for VC. He has now been in relapse for as many days as his last remission. "This flare up is considered over as soon as I have as many days in remission as I have in relapse." That is his philosophy he tells me. So now VC will start accumulating deficit days pushing his absolute recovery day further into the future.
"Does today have an impact on your decision?"
"On a long enough time line it shouldn't have any impact, but seeing how things are now, it definitely is a factor."
"What is your decision?" I ask him directly.
"[AC] and I made up our minds, and in light of what today is just reinforced that decision. One of us is going to have to give [H] the bad news.... she is going to have to put up with us for another season."
"A few days ago you were concerned about this being difficult-"
"Yeah its going to be hard, so is living with this [disease], maybe that's the point. There is always going to be someone out there who has it worse than me, so may be I just need to suck it up and do it cause things can always be worse. Remember: I am still trying to forget what having Crohn's disease feels like. Until that happens, and as long as I am able.. I've got to keep on movin." VC said that last part in a sing song type voice...
-xxxx
06 August 2010
 |
| merry married mentors |
6-Aug-2010 (14 Days in Relapse)
AC and VC are still debating being mentors for 2010 Las Vegas. H assures them that there is: "no pressure" but she is under time constraints to have everything finalized; everyone has deadlines And the merry married mentors have already signed putting more pressure on AC and VC.
"Of what are you afraid?" I ask him.
A beat. "Is life always this hard? or just when you're a kid?" VC responds with what I later realize is a quote from a movie. He never answers my question directly...
"Of what are you afraid?" I ask him.
A beat. "Is life always this hard? or just when you're a kid?" VC responds with what I later realize is a quote from a movie. He never answers my question directly...
-xxxx
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