11-05-2004, 06:17 AM #1
The next time you're up at night struggling with a flare!
It's another day here at the IC offices in Northern California. The trees outside the window have beautiful reds and golds. The vineyards have gone from green to russet just down the road. The grape harvest was one month early and now it appears that Winter has arrived as well. It's been very cold here. Ski runs are open at Tahoe with a surprising 4' of snow that fell the third week of October. We're shivering in our beds as the temperature hits the low 30's. Jumped up to hit the restroom twice last night and felt the cold all the way to my bones... though I didn't give into the temptation of turning up the furnace until 7am this morning.
Had a flare last night.... not sure why but it was probably an accidental bite of a very hot dish at a chinese restaurant. My sister Jan said that my face turned bright red... and that I had a deer in the headlights look for about 5 minutes. You know the concept of brain freeze??? Think of this as brain boil instead. I'll never do that again.
My bladder was sore throughout the night and the heating pad really helped. Have to remember to go buy a new electric heating pad with an automatic turn off soon. It's just too risky using an electric heating pad in a bed.. if you're not awake to turn it off. Most mattresses made before 2000 are very flammable and mine definitely is. I'll do that this weekend.
Yesterday, we had a few things going on with the boards... including a discussion about the election. Over the years, we've learned that two topics are always destined to cause great conflict and consternation among our users... discussions of religion and politics. It's a veritable rant fest. Therefore, we gently but firmly request that patients who want to argue, discuss, vent etc... find a more appropriate message board to vent their ire, such as the message boards at msnbc.com!
However, I will say this. When I wrote both the Democractic and Republican candidates in 2000 requesting asking if they would support an expansion of the NIH & NIDDK for urology research... the results were interesting. Al Gore's staff sent me a letter thanking me for my interest in heart problems. Yes, apparently they confused my request with someone elses. From Bush's office, I received what I believe is a personally signed letter from him which I have framed here in my office. He (his staff) responded in depth to my written concerns. Yes, I'm even a Democrat.
While the 2004 election didn't go the way that I thought it would, I'm really proud of the American people. More people voted in this election than had been seen in the previous 30 years. That's wonderful.. for if we don't speak out.... then we do let the special interests control our fate. Your vote is your way of fighting back... and I'm GLAD to see that people believe that their opinion, whatever it may be, counts.
As IC patients, this is doubly true. We have to speak out and let our needs be known. We have to ask for more research funding.... and, thankfully, the ICA is pretty good at this. But, we can't depend upon any group to do this for us... we have to take responsibility for it too. So, this is my challenge to you.
The NEXT time you're up at night struggling with pain or a flare, please pour your stress, your frustration, your anger into a letter to your senator or congressman. Tell them how IC has changed your life... and why it's so important that they support urology research. Use that pain constructively, pour it out, express it, give it a voice ... .. for your letter might be the one that gets that addition $1,000,000 of research funded. Just do it. If not you, then who??
That's the news from the ICN offices, where there is never a line at our bathroom!
(I have to work on coming up with something more like Lake Woebegone's exit... where the women are strong, the men are good looking and the children above average.)
Last edited by icnmgrjill; 11-05-2004 at 06:47 AM.Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Diana Brady CNC on alternative medicines. http://www.icnsales.com/icn-personal-coaching/
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