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icnjill do we have a ic offical awareness day
i was wondering if we have and offical awareness day to inform the public about IC sometime in the year. Could you let me know. Thanks in advance.
Love,
Broken_Smile
Love,
Broken_Smile
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Broken Smile,
That would be a good idea if we didnt...If a date is set we could all get the word out...Hugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
http://www.ic-network.com/handbook/
Diet Reference Sheet:
http://www.ic-network.com/diet/icndi...tsheet0909.pdf
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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I LOVE this idea! I dont think there is one right now either, but I really hope Jill sees this and designates one. Then, even if we all send letters to different mags, newspapers and talk shows, thru out the year, on IC Awareness day, we could ALL do it at the same time to the same people.
Did I mention that I LOVE this idea?
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That's an awesome idea!current meds:
cytotec 200mcg twice daily
toprol
allegra
ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible
dx: hashimoto's thyroiditis 1998
dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
dx: endometriosis 2003
dx: innapropriate sinus tacchicardia 2005
meds tried but failed:
elavil (6months)- severe tachycardia
elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
a bunch of others
Me and my best friend's baby (also my Godson!)Comment
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You could always PM her and share this idea
Hugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
http://www.ic-network.com/handbook/
Diet Reference Sheet:
http://www.ic-network.com/diet/icndi...tsheet0909.pdf
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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I agree! I definately think you should PM her to tell her about your idea! Tell her we all love the idea too!Originally posted by leelee88 View PostYou could always PM her and share this ideaComment
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That is a great idea, i love that to!!! We all need something like that for sure!
Shirley2Comment
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Oh now you got me started!
We could have an IC awareness day, and we'd all wear our Tshirts and sweatchirts from my shop, and we can have a Five K or Ten K walk a thon!!!! We can raise money for IC Awareness and research!!!!!Comment
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That would be awesome! (But these days, I'd have to ride along beside you guys in one of those motorized carts like they have at Walmart...I dont think I could even walk in a 1/2 KOriginally posted by Moonheart View PostOh now you got me started!
We could have an IC awareness day, and we'd all wear our Tshirts and sweatchirts from my shop, and we can have a Five K or Ten K walk a thon!!!! We can raise money for IC Awareness and research!!!!! ) But, I could load down the cart with water for all of ya and yell real loud! :woohoo:
It would be cool to have it in Washington D.C. (like other causes do when they have those "March on Washington" rallies. You know like the Million Moms march and the Million Man march, etc. We could march over to Congress and demand better pain care for chronic pain patients! (I am just thinking aloud here...)Comment
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We're going to get it in the works. Jill and I have plans to talk about it later this week and I'm going to start designing the shirts. Even those who can't participate by walking can wear the shirts and cheer others on. We don't mind carts (I'll need one too) we can have a cart-a -thon!
I'll let you guys know when I have some news!
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Glad you PMed her!Originally posted by Moonheart View PostWe're going to get it in the works. Jill and I have plans to talk about it later this week and I'm going to start designing the shirts. Even those who can't participate by walking can wear the shirts and cheer others on. We don't mind carts (I'll need one too) we can have a cart-a -thon!
I'll let you guys know when I have some news! Let us know what you guys figure out!
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Thats so cool Moonheart.. I know Jill will come through for us
Even if we can all get together in one place we could still do a walk or ride..hehe In our cties or hometown..
And I have already ordered my shirts
Hugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
http://www.ic-network.com/handbook/
Diet Reference Sheet:
http://www.ic-network.com/diet/icndi...tsheet0909.pdf
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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I have not responded to the IC awareness day!
Hello Everyone,
I have been having a bad time with some dental work will go in to the dentist to get some teeth pulled. I will get back with you all soon. Moonheart thanks for talking with Jill as I have been having a hard time lately. I just thought why not let's get the word out some how or another some progress is better than no progress. Love you all and pray for me a my dentist appointment today. Love you all!!!!
Love,
Broken_Smile
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Sorry your teeth have been bothering you. Lord knows we have enough time just having IC, without other things going wrong too. I hope that you feel better after they pull the offending ones. Take care of yourself and hope they give you some decent pain meds that will cover all your tooth pain and bladder pain too! Big hugs, AmyOriginally posted by broken_smile View PostHello Everyone,
I have been having a bad time with some dental work will go in to the dentist to get some teeth pulled. I will get back with you all soon. Moonheart thanks for talking with Jill as I have been having a hard time lately. I just thought why not let's get the word out some how or another some progress is better than no progress. Love you all and pray for me a my dentist appointment today. Love you all!!!!
Love,
Broken_Smile Comment
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Oh you are so welcome! I'm very excited and will let you guys know what is going on when we have news. I'm in the middle of a move, so I have to try to find time for everything. It will get done though! Never fear!
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