RE-POST (with added link below):
IC Disease - It's IC Awareness Week: What's Happening
I apologize for posting the above link a little later than I had hoped. I am having a really rough week with pain.
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Original Post:
I wanted to give readers some notice that National Interstitial Cystitis Awareness Week is October 20th through 26th, 2008.
There are numerous ways interstitial cystitis (IC) patients and their loved ones can help raise awareness about interstitial cystitis.
Here are some ideas for how you can make your voices heard about this illness, which can often be debilitating...
++ You can write to your legislators and explain how interstitial cystitis affects you and your loved ones. Advocating for ourselves is so important. Contacting our representatives can have a positive impact! Awareness and research dollars are crucial to making headway and progressing in improving the quality of life for interstitial cystitis patients.
++ Another idea is to contact the media (print, radio, local TV news, etc.) and volunteer to share your story. You might be surprised that they might be responsive to your offer to be interviewed. I was interviewed about endometriosis a few years back on the health segment of the local TV news and it was an interesting experience that reached more people than we could have from other methods. If you contact media, you may want to do so as soon as possible. Newspapers have lots of deadlines... so the sooner you approach them, the better your odds for being featured. I would definitely suggest mentioning to them that Interstitial Cystitis Awareness Week is October 20th-26th, 2008! It could greatly increase your odds your being featured.
Thank you to Sandy of IC Disease: Life With Interstitial Cystitis, Vulvodynia, Incontinence, and & Other Bladder Conditions for bringing this awareness week to my attention.
See the "IC Disease" article about awareness week: October 20 - 26: National Interstitial Cystitis Awareness Week
For a resource on interstitial cystitis, see: The Interstitial Cystitis Association.
Related links that have mentioned interstitial cystitis previously:
Sunday, October 12, 2008 Endometriosis Blog: Vulvodynia And Vestibulitis, Launch Of Polish Website About Vulvodynia
Wednesday, October 8, 2008 Endometriosis Blog: Obituary Of An Endometriosis Support Group Or Beginning Of A Better System?
Monday, September 22, 2008 Endometriosis Blog: Interstitial Cystitis & Endometriosis
Friday, September 19, 2008 Endometriosis Blog: Spotlight On The Interstitial Cystitis Association!!
Sunday, September 7, 2008 Endometriosis Blog: NEW YouTube Video Clips! Endometriosis, Chronic Illness And Other Topics Of Interest!!
Monday, August 11, 2008 Endometriosis Blog: Check Out Newly-Added Co-Existing Illness/Chronic Illness Links in "Frequently Visited Sites" At Bottom Of Homepage!!!
Friday, August 8, 2008 Endometriosis Blog: SEVENTH Anniversary Of My Local Endometriosis Support Group!!!
Saturday, July 26, 2008 Endometriosis Blog: The Importance of Relaxation To Your Health...
Friday, July 25, 2008 Endometriosis Blog: Results Of YOUR FEEDBACK On Endo Blog TOPIC CHOICES POLL!
Tuesday, July 22, 2008 Endometriosis Patient Survives Yet Another Annual Exam Without Perishing On The Table :) :)
Wednesday, July 9, 2008 Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses
Saturday, June 21, 2008 Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
4 comments:
I was pretty-much written off for ever having a baby due to to my years and years of endo, plus a partially septate uterus. Oh joy oh bliss.
But a few operations and 3 miscarriages later, there came along a Kelly, who is now 7.
By Jeepers, I remember the monthly curling up on the bed with that pain which my remedy for was 2 shots of whisky and 2 ibuprophens. But that was some years ago so hopefully better remedies are used.
I feel for anyone going through endo.
And thank you for this blog!!
Jannie,
It's interesting that you mention a septate uterus. My sister was diagnosed with a bicornuate uterus (one uterus with a septum dividing it into 2 parts). However, that was a misdiagnosis. She has had 2 children. When she was pregnant the second time, some tests showed there may be fetal distress. So she was referred to a maternal/fetal subspecialist. He said she has a didelphus uterus. That means she actually has 2!! So, apparently, one uterus is where the fetuses grew and the other one was "inactive". Her regular gynecologist should have figured this out because she has 2 cervixes and she should have been getting a pap smear on each one. However, it wasn't until this subspecialist discovered her misdiagnosis that she knew she had 2 cervixes.
I'm so sorry you had 3 miscarriages. I can't imagine.
I'm very happy for you that you have your precious Kelly. It's always nice to hear a hopeful story like this!
Well, I can't say I've ever heard of the "whisky-ibuprofen" regimen. :) Treatment options still have plenty of room for improvement but there are some great researchers out there working on it. (It's too bad more research wasn't done sooner but I'm happy to know of a couple of great researchers working on endo now).
Yes, endometriosis is definitely challenging! It's great to be connected with fellow patients, though. It helps people feel less alone. It also informs and empowers people so that they can better advocate for themselves... which is huge!
I'm glad you like the blog. :) There's nothing to thank me for...
Please come back here for a visit sometime! :)
Jeanne
Jeanne, my new BFF, thanks for visiting and commenting.
Whoa, 2 uteri and cervixes, I'd read about that. But 2 blessed kids, you can't beat that!.
I will for sure come back to your uplifting blog.
And of course - thanks!
Jannie
Jannie,
Hi again! I enjoyed visiting your site.
Yes, I think my sister was very fortunate that things worked out the way they did.
I'm happy to hear you'll be back to visit here. :)
Thank you!!
Jeanne
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