IC Awareness Day

[babykahuna1]

Hi I Wasn't Sure Where To Post This. I Found A Site That Gives All Awareness Days And Weeks. October 31 Is Interstitial Cystitis Day. I Just Thought I Would Let The Rest Of You Know.

[Claredale]

Thanks for the info.

[traceann]

Hey neat!!! And it falls on my favorite holiday - that's even better! Thanks for the info! :)

[laura dove]

that's the day of my pain managment appointment!!

[katjonez]

THANKS for letting us all know !!

[sandramac]

:smile tee Cool I had no idea.
Hugs Sandra :cat: :cat: :cat:

[Katrina]

Could you let us know where the site is? If you can't post it can you private message it to me...thanks!!

Sort of ironic to have IC awareness on Halloween

[MakinIT]

Hmmm...between Halloween and IC day, how do you suppose we should make people aware? I vote for dressing in bright red bladder costume, and flexible tubing (representing a catheder) dragging behind. Be an easy cosutume to put together....

ha, ha...I'm just joking...no...Should be something like some very easy to understand literature/ advertising that explains the syndrome. During Halloween parties, when everone is partying and has full bladders...lock bathroom doors and tell them tough cookies...It is IC awareness day and they are going to become aware of one of the symptoms/difficulties.....
Geez...call me jaded and mean after 4 years. (I am just joking)

[babykahuna1]

here's the web site i found the awareness day on.

http://www.healthfinder.gov/library/nho/nhoyear.asp?year=2007

[ICNDonna]

I think the week before IC day is a good time for each and every one of us to write a letter to the editor of our local newspapers. I suggest that we refer to our disease by its full name "interstitial cystitis" in our letters. We could also send the same letters to our local radio and TV stations --- we might get some mention.

Anyone willing to participate?

Donna

[verdicries]

that is a GREAT idea donna...i'm in! and to the original poster, thanks for letting us know.

i'm going to start writing my letter now...;).:smile tee

[hdb1982]

This is a copy of the email I sent to everyone I know:
Interstitial Cystitis Awareness Day is Oct.31. Please help myself and other IC sufferers in educating the world about this painful, often debilitating, disease. Please forward this information to everyone in your address book. IC is often misdiagnosed with other medical conditions. There is only 1 FDA approved medicinal treatment for IC, Elmiron, which helps protect the bladder lining while it heals. This treatment is only effective in 30-60% of suffers. THERE IS NOT A CURE FOR IC. Only treatments to help minimize our symptoms. The cause is also unknown. There are many theories. Some say it is autoimmune others say it is fungal or bacterial. So please help us in our mission. If this email helps one person who has these symptoms but has yet to be diagnosed it was worth our time. Thanks for you attention and assistance in helping us with this cause ~ Heather

Interstitial cystitis is a chronic, and often severe, inflammation and/or injury to the bladder wall. Primary symptoms are urinary frequency, urgency, and, for some, severe lower abdominal or perineal pain. However, IC patients rarely test positive for infection in standard urinalysis and urine cultures.
Unfortunately, there is no definitive diagnostic test for IC. A diagnosis is usually based upon a patient's symptoms, a cystoscopic examination of the bladder under anesthesia and exclusion of other bladder diseases. During the cystoscopy urologists carefully examine the bladder wall for signs of IC, including small petechial hemorrhages (aka glomerulations or small wounds) and/or larger Hunner's Ulcers.

Doctors classify IC patients into two distinct categories. The great majority of patients are diagnosed with "early non-ulcerative" IC, as identified by the presence of glomerulations during cystoscopy. An estimated 5% to 10% of IC patients are believed to have the second, more severe, "classic ulcerative" IC, as demonstrated by the presence of Hunner's Ulcers and glomerulations during cystoscopy. These patients may also have reduced bladder capacities and stiffened bladder walls. Patients have a variance if symptoms including urgency, frequecny and pelvic pain. Some have 1 or 2 symptoms other have all. The symptoms often range in severity.

[leelee88]

Great Idea Donna! Im IN..

hdb1982- great letter!!:smile tee

[MakinIT]

Ditto: Donna...you get the Register Gaurd...I'll do the Oregonian...Or we could try both. (I got published this summer in the Vancouver Washington Paper so maybe I could again!)

[ettegirb21]

Thanks so much for sharing! I sent out the e-mail and posted it on myspace (lol). If the word will get out, myspace should do it! :)

[glassd18]

Great idea Donna and great letter HDB1982.

[karen10]

My dr's office is so GREAT. They are celebrating IC Awareness Day by providing IC friendly snacks, in particular, white chocolate and almonds (yummy!), a rose for all their patients, and telling ALL their patients about it, and asking that they complete the PUF questionnaire. A couple of us wrote to all the newspapers, TV and radio stations and we did get some positive responses. My friend's story is very compelling (she's been told by several dr's that she's one of the worst IC cases so far -- has had 16 surgeries and still in terrible pain everyday, my heart aches for her). We are still working on getting on Oprah! Let's get the word out, this is the FIRST national IC awareness day! :)

[leelee88]

Karen,
That is so nice of them:angel:

[laura dove]

Karen, that is amazing!!!!I've never heard of a doctor caring so
much about this disease. You wouldn't happen to be on the east
coast?

[MakinIT]

I do think that is great about your doc. Mine too has IC "starter kits" for new patients, and she has white kisses (hershey's) in her room(s). (Large practice, each doc uses 4 rooms primarily) I don't think she's done anything re: IC awareness. She's so darn busy she barely slows down to breathe. (one year in January she broke her left ankle, worked in a boot for months..did surgery, only to get out of it break her right one 2 weeks later trying to run!!!)

Anyway, I think we struggle with getting knowledge out there because this disease doesn't A) have a face...where's the famous person who struggles, in pain, everyday to manage this and B) where's the glamour? I mean, to those who don'tknow and you try to describe, it's a peeing disease. Kinda funny...why is such a big deal? We don't look different, no cute kids to show, although we could show our cute kids suffering w/o their mommies being their 100%.
I think those are what can really get the attention of the media and the average person to our situation.
anyway..nighty night.

T

[karen10]

No, unfortunately!! We are in the Atlanta area.
I so agree, love it "peeing disease!" but still our story includes these facts: this pain can be compared to stage four cancer pain, 64% of IC patients are unable to work full time, we have some of the highest depression/anxiety rates, quality of life rates below a dialysis patient! OMG, we need to get the word out!!! We have some incredible stats, and WE ARE WORTH BEING HEARD!!! I don't plan on stopping until I am/we are heard. We may not get on Oprah, but we'll settle for anyone at this point. :smile tee Okay, well that's my speech for today! Thank you all for listening, I needed the practice! :lmao: (I am very serious about this though). One person at a time, we can make a difference!

[MakinIT]

I sure agree with you...I don't like being on Morphine...hmm..up to MS Contin ER total each day 270mgs and 200 mgs topamax. Then the inner fight not to take the valium or oxycontin when my pain flares so I can stay alert. And I really hate when people say "well, at least you don't have anything bad like cancer, you aren't going to die". I smile and say yeah...as I think about my broken life. as anyone on this site who has been around for a long time knows, I mourned my prior life for at least 2-3 years. And I had no one to understand close by. My youngest child is very withdrawn from me, my eldest sees the tension between my husband and I and is a nervous wreck in her relationship with her close boyfriend. My husband withdrew to the point that 6 weeks ago I was ready to sign divorce papers because I've starting coming back in the past year, but he wouldn't let my past 2-3 years of shock and medication and, yes, grief...and the emotions those caused, and some of my behaviors....(which weren't bad, and they would not have occured had he held his arms open and made me feel secure), but he hangs onto words said, actions performed and he wont let go of human error so my marriage has been hanging by a hair, now I'll give it a thread...(He is very analytical and cold when angry, and won't respond...I had to keep pushing and pushing and pushing until I ****** him off and he responded HOT...THAT I could deal with because I could become calm and figure out what his issues were.) Anyway, we are slowly coming back together but I do think he still believes I am not my old self. However, my mom, who I rely on, is there for me. But my dad still throws up walls between myself and her. When I call, he tells me to leave her alone. (when I was a kid, he would come home from work and tell me to beat it, and I didn't speak to my parents the rest of the evening..weekend...whatever, because he wanted her all to himself...he is still that way) They are in their 60's, my dad first told me I was a drug addict..knowing that I was college grad with a masters degree, why would I throw away the 40 grand in loans and all the work, and a career I loved? Now he just says I'm lazy and won't get off my ass. I told him that he would fire an employee like me with my illness because my work attendence and ability would be very sporatic.
Karen I agree with you. and the other issue with IC is, especially for those of us with crappy immune systems, we get all these secondary problems. I don't even tell my family anymore if I have a medical concern, am going to a specialist, or have a new syndrome. (the most recent was Sjoren's) I just keep telling them the positive stuff about the drill sargent physical therapy I am undergoing now. (I am in a physical rehab program, and the first thing they work with on me is nuerological...teaching me to walk properly and to stop falling over, ugh...I did walk 1/2 mile in 7 mins today on the treadmill.Yay.)

So..Anyway..All the talk...Nobody picked up my letters to the editor, I thought maybe I would b/c I had a letter made into an opinion piece over the summer but I guess I/C doesn't have the glitz of an indignent person being hassled over a H/C parking pass.

[karen10]

MakinIt -- I'm so sorry you had to deal with so much pain, both physically and emotionally. I am so fortunate I do have support from my family (so far). I have learned quickly though that I can't lean on them too much. And even though I need them, I know they just can't take it. So, another IC friend and I are working hard to start a support group. It's soooo important to get that support! You are also a survivor!! That's why your story needs to get out. There are other stories like that. It sounds like you're coming out the other side, hopefully it will continue! Relationships are hard!!! I couldn't imagine going thru this with my first husband, he sounds like yours, very aloof and cold. Sure sounds like you married your father -- he pushes you away too! I know the family grieves too for the loss of a "normal" wife and mother, so I can understand that too. I work very hard to do what you are doing, talk about the positive, keep the less positive to a minimum. I have other places to get it out! And having a supportive dr/nurse specialist is GREAT! Good to chat with you! :smile tee

[MakinIT]

Having a supportive family is crucial in this, I've discovered. My husband really and truly thought he was being supportive and I guess to an extent I didn't walk a mile in his shoes. On the surface, I recognized that our family income was cut, he didn't complain. He added further to his teaching load by teaching more college classes and consulting more, thus taking himself out of the family pic, unwanted. I was angry because he was taking the kids to places (Italy, New York, San Fran, Orlando) and I couldn't travel. It brought the kids very close to him, especially the youngest one, my illness started when she was about 8 and while I was trying to become accustomed to my meds I slept alot. So he saw himself working more, parenting more, and he kept all this inside. Meanwhile, the meds made me forget things, my moods were up and down, and I was lonely (still am to an extent) I couldn't drive. So he withdrew, youngest bonded with him, and she still struggles to respect me and doesn't know why. Roger could've saved us both alot of grief if he would have just shown me affection and listenes once in awhile. But he wouldn't touch me and listening was reduced to 3 mins of annoyance. AND yes, I did marry my father. (uh, figuratively) Only he values his children over me so I got screwed on both ends of my life. But things are slowly improving. After I confronted him he finally realized what was going on in my head and he started understanding I am not the same person who I was when I first had to leave my work, he has started to come around. And I have to remember, he is a moody man anyway so I
just take a deep breath and wait it out. I can tell if his mood is due to me or to other circumstances.

[BBB]

I am in Donna. I have been pulling some information together to send out to some doctors in the area who were unable to help me because they had no experience and/or education in IC.

What do you all think about it being on Halloween? I would have liked it to be on a different day as Halloween is becoming such a big holiday. Well, I guess it is a start!

[MakinIT]

As a former educator, it seemed the holiday was shrinking. i can remember we used to spend Halloween having a party and bringing costumes....just having fun. Now, nuthin at school and many of the cultures and religions won't recognize it.

(I'm not irked about Halloween parties per se being pulled from schools but anything that is fun...no Valentines, no Christmas...nuthin'...alll those things that made us look forward to things at school.) Off subject...Sorry....But I don't think Halloween will interrupt IC day. It's more of an adult awareness any way, eh?...I sent out an email to all my friends based on the one earlier in the thread. What a great idea.

[smcclafferty]

I just got an email about it!!! Wow!!!!