Date: July 14, 1998
Interstitial Cystitis Network - Chat Log (
#icchat created on Tue Jul 14 20:20:12
<icnmgrjill> WHAT I'D LIKE TO DO BEFORE WE START OPEN CHAT...
<icnmgrjill> HAVE YOU HELP ME, FOR A FEW MOMENTS, DEVELOP SOME NEW RESOURCES FOR IC NEWBIES...
<icnmgrjill> WE ALL REMEMBER THOSE DAYS.. WHETHER IT WAS LAST WEEK OR TEN YEARS AGO
<icnmgrjill> THAT DIAGNOSIS OF IC.. GETTING THOSE WORDS... WAS REALLY ODD...
<icnmgrjill> IT WAS CONFUSING, FRUSTRATING, IT WAS GREAT TO HAVE A NAME..
<icnmgrjill> WE WERE RELIEVED.. WE WERE SCARED... JUST SO MANY THINGS THAT WENT THROUGH OUR MINDS...
<icnmgrjill> AND, TONIGHT, WE HAVE SEVERAL NEW PEOPLE AS WELL...
<icnmgrjill> AND.. SO..
<icnmgrjill> I'D LIKE TO DEDICATE TONIGHT TO THOSE WHO WERE JUST DIAGNOSED WITH IC...
<icnmgrjill> AND .. I'D LIKE TO HEAR FROM YOU ALL...
<icnmgrjill> WHAT IT WAS LIKE WHEN YOU WERE FIRST DIAGNOSED??
<icnmgrjill> WERE YOU RELIEVED.. BECAUSE YOU KNEW YOU WEREN'T CRAZY AFTER ALL?
<icnmgrjill> WERE YOU SCARED???
<icnmgrjill> AND ... WHAT WAS THE MOST IMPORTANT THING YOU DID AFTER YOUR DIAGNOSIS!
<icnmgrjill> wHAT GOT YOU THROUGH IT WITH A SMILE.. OR WITH DETERMINATION, AT LEAST..
<icnmgrjill> ANYONE...
-> [mexifood] PING
<icnmgrjill> LET'S HEAR WHAT YOUR EXPERIENCE WAS AS A NEWLY DIAGNOSED PATIENT??
-> [#icchat] PING
<icnmgrjill> ANYONE??
<Terri_ic> They said there was nothing that could be done, so I left and didn't do anything about it until it got bad enough two years later to feel the need to go to the doctor and see just what was really going on.
<Terri_ic> You have to do your own research now...
*** <=- °SD v7.7 PrO° -=> Your On Join Advertise Is °(ON)° ! Now Everyone Who Joins A Channel Where You Are On Will Get Your Message ! REMEMBER That Now You Can Be Only In 3 Big Or 5 Small Channels ! If You Join More You Will Get Flooded Off By Your Own Messages !
<andrea808> I was very sad and depressed because before I thought it would be something that could be treated and would go away. I felt a lot of greif and that my life was doomed to be one of constant pain.
<icnmgrjill> HMMM.. TERRI.. THANKFULLY, WE HAVE SO MANY TREATMENT OPTIONS TO EXPLORE.. THAT'S NOT UNUSUAL!
<icnmgrjill> EVERY MONTH WITH IC.. BRINGS NEW AND VITAL INFORMATION!
<Terri_ic> Now that I've done research, I'm discouraged again.
<icnmgrjill> HMMM... ANDREA.. THAT MAKE SENSE...
<icnmgrjill> ESPECIALLY IF WE DON'T HAVE A REALLY GOOD DOCTOR
<RebaJo> I suffered for 13 years before I was finally diagnosed. The doctors looked at me like I was crazy.
<Rabbit_Stan> Coopie!!
<icnmgrjill> BUT JUST REMEMBER THAT NOT EVERYONE HAS PAIN...
<icnmgrjill> BUT FOR THOSE OF US WHO DO, LIFE IS STILL GOOD!
<icnmgrjill> WE JUST HAVE TO WORK AT PAIN MANAGEMENT A LITTLE HARDER!
<RebaJo> I was very relieved to at least know I wasnt crazy.
<JenW> It took me 3 doctors and 3 mos to get any treatment at all.
<icnmgrjill> TERRI... WHY ARE YOU DISCOURAGED???
<RebaJo> COOPIE!!!!!
<icnmgrjill> REBA.. WE KNEW YOU WEREN'T CRAZY! <GRIN>
<RebaJo> LOL
<Shava1> I was just relieved to finally know what was wrong . Even though there isn't a lot of options medically to help.
<mexi> Got bumped off - back as mexi but same as mexifood
<RebaJo> But I am ......LOL
<Terri_ic> cuz it looks like I could try all kinds of treatments, and still be in the same boat...for years...
<Rabbit_Stan> Mary was in shock and sat and thought about all the wrong dianoses
<RebaJo> :)
<icnmgrjill> aHH... i GET IT TERRI...
<Rabbit_Stan> over 25 years of misinformation
<Terri_ic> I really try not to be gloomy! :)
<icnmgrjill> BUT, IF YOU HANG AROUND ICERS LONG ENOUGH, YOU DO FIND OUT THAT THERE IS RELIEF OUT THERE.. WE JUST HAVE TO REALLY WORK AT IT.. AT TIMES..
<icnmgrjill> VERY GOOD!
<Rabbit_Stan> wb coopie
<icnmgrjill> STAN AND MARY... AND HOW DOES IT FEEL NOW??
<JenW> I did alot of research on the net before being disgnosed. Helped tremnedously.
<Rabbit_Stan> Today it feels good - like normal
<Rabbit_Stan> Some days it have scared Mary
<icnmgrjill> GREAT!
<icnmgrjill> OKAY...
<icnmgrjill> SO.. HERE'S A TOUGH QUESTION...
<icnmgrjill> WHAT WAS THE MOST IMPORTANT THING YOU DID WITH YOUR IC AFTER YOU WERE DIAGNOSED??
<icnmgrjill> WHAT GOT YOU THROUGH IT??
<icnmgrjill> WHAT HELPED YOU GAIN SOME CONTROL??
<icnmgrjill> <--- MEETING OTHERS.. SO i WASN'T ALONE..
<Rabbit_Stan> Diet! and husband helping with research - Mary says
<icnmgrjill> <-- WHICH ALSO GAVE ME PERSPECTIVE.. AND I REALIZED I WAS IN PRETTY GOOD SHAPE.. AND HAD REASON TO BE HOPEFUL..
<Rabbit_Stan> right up there w/ diet - husband being OK waiting for sex
<coopie1> learned more about total health and my limits
* Rabbit_Stan blushes
<andrea808> Cried a lot, grieved a lot.
<JenW> Diet for me too. Now have to REALLY stay away from what I'm allergic to.
<Rabbit_Stan> Mary was VERY angry w doctors
<coopie1> diet very essential
<Terri_ic> THE ICN!!!!! Keep coming!!
<RebaJo> Me too Andrea.
<RebaJo> I know how you feel
<Rabbit_Stan> yea Terri
<coopie1> reba!!!!!!!!
<JenW> Limits, Coopie. Good point. I think I appreciate things more now ..
<andrea808> Thanks Reba.
<Rabbit_Stan> Mary went to lawyers
<RebaJo> COOPIE!!!!
<RebaJo> hellooooooo
<Rabbit_Stan> they didn't know about IC either
<JenW> Why?
<RebaJo> Your welcome andrea.
<Rabbit_Stan> one asked if she was permiscous
<RebaJo> :)
<coopie1> omg mary rabbit
<icnmgrjill> STAN.. I THINK MOST ICERS ARE USUALLY TESTED FOR EVERY SEXUALLY TRANSMITTED DISEASE KNOWN TO MAN...
<Rabbit_Stan> and thoight endometriosis was an infection -- insisted actually
<icnmgrjill> EVEN IF WE AREN'T WITH PARTNERS...
<icnmgrjill> :::SHAKES HEAD:::
<JenW> Why lawyers, Stan?
<coopie1> I was told it was the superwoman's A-personality diesaese
<Rabbit_Stan> Mary had blood in her urine for 10 years, and it was in the records
<Terri_ic> lol
<icnmgrjill> COOPIE.. OH YEAH.. WE'VE HEARD THAT BEFORE TOO.. MAKES NO SENSE..
<Rabbit_Stan> Docotor acted like she was a nut, and Mary thought she was too
<JenW> Wow. Thought maybe an accident ...
<Rabbit_Stan> nope Jen
<coopie1> Doctor told me "go home, this bladder thing is like some people's migraines, you have to live with it
<Rabbit_Stan> coopie :(
<JenW> Funny -they only think you have a problem when there's bacteria.
<coopie1> :{
<RebaJo> Hey stan.....I am glad I am not the only one that felt crazy.......Grin
<icnmgrjill> OKAY... SO.. IF YOU HAD TO SHARE YOUR SUCCESS TIPS WITH A NEWBIE.. WHAT WOULD YOU SHARE??? WHAT GAVE YOU HOPE???
<JenW> When it's much worse if there is no bacteria ...
<Terri_ic> There is an awful lot of support out here.....
<Rabbit_Stan> living with pain for years makes you a superwomen/ super reasonable
<Rabbit_Stan> etc
<coopie1> It isn't cancer
<Rabbit_Stan> diet
<icnmgrjill> JEN.. TOUCHE!
<coopie1> it isn't life threatening (maybe challenges your mental health), but we aren't going to die
<Rozy> Try to keep a positive attitude
<DebbieB-IC> <DebbieB> My family and IC friends
<Rabbit_Stan> New docotr listens and belives symptoms much more often especially at first
<icnmgrjill> WHAT ELSE??
<icnmgrjill> WHAT WISDOMS DO YOU HAVE??
<icnmgrjill> LET'S HEAR THEM...
<Rabbit_Stan> Icn helped oodles
<coopie1> I had a baby through it and worked and did fine - so you must stay positive
<icnmgrjill> COOPIE.. THAT'S RIGHT.. LIFE GOES ON AND WE CAN HAVE A GOOD LIFE! MANY OF US HAVE VERY SATISFYING AND HAPPY LIVES EVEN WITH IC!
<Rabbit_Stan> oodles and oodles and oodles
<JenW> That's encouraging.
<coopie1> I look at pictures of ME at Christmas
<coopie1> I am having as much fun as everyone else
<Rabbit_Stan> facts and research helps with doctors
<Terri_ic> :) coopie
<Rozy> Know where all bathrooms are when you go out
<icnmgrjill> OKAY... WHAT ELSE?? WHAT WORKS FOR YOU??
<icnmgrjill> LET'S ASSEMBLE BEST LIST OF COPING TIPS TONIGHT..
<icnmgrjill> lol ROZY... :)00000
<coopie1> I feel better if I take extra good care of my appearance, clean showered fresh clothes - makes me get up and get going
<icnmgrjill> TRUE.. WE COULD SELL MAPS OF BATHROOM STOPS AROUND THE WORLD!
<Terri_ic> Cold wet towel draped over tummy - wonderful!
<coopie1> cold, terri?
<Rabbit_Stan> have a picture of the IC distention for times when u expect too much of your self - and to show nea doctors
<Rabbit_Stan> new not nea
<bbird> sense of humour keeps me going
<coopie1> massages at the massage therapy place
<DebbieB-IC> <DebbieB> I can surive ,, I live in the washroom!!
<Rabbit_Stan> cool coopie :)
<icnmgrjill> STANMARY... WELL SAID..
<JenW> You have back problems too coopie?
<Rabbit_Stan> baking soda in water - Prelief
<icnmgrjill> <-- PERINEAL WASH BOTTLES TO USE AFTER URINATION... COOL WATER.. VERY SOOTHING
<RebaJo> I want a massage too..... :)
<Rabbit_Stan> Tums
<coopie1> I rent a movie when the pain is bad, and get in bed and laugh with husband about how nice it is to be in pjs and watching a movie at 8 oclock at night
<Rozy> develop stress releasing techniques
<Rabbit_Stan> loving animals - especially rabbits >:)
<coopie1> JILL, perineal wash bottle after sex is important too
<icnmgrjill> ONE OF THE BEST THINGS i EVER FOUND WAS SPRAYING COOL WATER OVER MY VULVA AFTER BATHROOM STOPS... REALLY SLOWED DOWN THE VULVADYNIA
<icnmgrjill> VULVODYNIA
<Terri_ic> The "Tim the Tool Man Taylor" Toilet seat in the special bathroom for men show - the lounger seat.....:)
<coopie1> jen, no i have no back problems, just get massages for relaxing
<coopie1> :} terri
<icnmgrjill> ANY OTHER TIPS???
<Rozy> Educate your family & close friends about IC so they will understand what your going through
<icnmgrjill> EXCELLENT ROZY.. VERY TRUE!
<Rabbit_Stan> avoiding family if necessary :)
<Terri_ic> And find more info for them if they still don't understand!
<coopie1> If you can do it, it helps a lot to swim or walk -helps a lot
<icnmgrjill> HOW ABOUT SOAPS AND CLOTHES?? ANY SUGGESTIONS OUT THERE??
<Rabbit_Stan> loose clothes
<JenW> Aveeno oatmeal bath - no acid in it
<Terri_ic> husbands shorts
<Terri_ic> :)
<coopie1> husbands boxers flanneltype
<icnmgrjill> HEY.. DID ANYONE HEAR DR. DEAN EDELL TODAY.. WHO SAID THAT WOMEN
<coopie1> terri :} same thing !!!
<Rabbit_Stan> we use Ivory body soap - is that a good choice????
<Rozy> Use white soaps and tolietpaper to avoid irritating the IC
<icnmgrjill> HAD AN INCREASED PAIN THRESHOLD DURING SEX AND ORGASM??
<andrea808> No underware and long skirts.
<icnmgrjill> THAT WAS INTERESTING...
<Terri_ic> Coopie, I actually wore some to our big amusement park here in Denver!!!
<JenW> Dove is much milder.
<Shava1> I have found that dove soap is okay
<icnmgrjill> LAST CALL FOR TIPS.. THEN WE OPEN TEH FLOOR...
<coopie1> lol terri
<Rabbit_Stan> thanx Jen
<RebaJo> I use Ivory soap too Stan. I like it. It doesnt bother me.
<icnmgrjill> STAN... i USE DOVE OR BASIS TOO.. WASH MY CLOTHES IN IVORY
<JenW> Ivory bothers me
<coopie1> I use dreft baby clothes detergent when I was my clothes
<Rabbit_Stan> thanx Reba andshava
<Rabbit_Stan> thanks jill
<coopie1> wash my clothes, I mean
<icnmgrjill> HOW ABOUT SWIM SUITS??
<icnmgrjill> NOW THAT IT'S SUMMER...
<RebaJo> :)
<NanciK> what's a swimsuit? :-)
<icnmgrjill> ANYONE HAVE ANY SWIMSUIT TIPS???
<NanciK> I look so pregnant I won't put one on for all the tea in china
<icnmgrjill> OTHER THAN TAKING THEM OFF IMMEDIATELY... AFTER SWIMMING
<coopie1> One piece and wear big shorts over the bottom once you get out
<RebaJo> I wear one that's easy to get off when you gotta go potty..... :)
<Rabbit_Stan> Mary bought a charcoal filter mask for the PT pool to keep out the chlorine
<DebbieB-IC> <DebbieB> I don' t swim!!
<coopie1> I need a charcola filter for my urethra
<coopie1> charcoal
<icnmgrjill> LOL COOPIE.. YOU SOUND LIKE ME..
<Rabbit_Stan> Mary wears oone piece too
<icnmgrjill> OKAY FOLKS.. LET'S OPEN THE FLOOR TO QUESTIONS
<icnmgrjill> AS IS OUR TRADITION
<icnmgrjill> WE TAKE QUESTIONS FIRST FROM ANYONE WHO IS NEW TO THE ICN
<coopie1> We forgot a tip, Jill. YOGA !!
*** Terri_ic is now known as TerriDan
<icnmgrjill> AND/OR IF THIS IS YOUR FIRST CHAT MEETING.. WHERE YOU ACTUALLY ARE WILLING TO TALK <GRIN>
<LindaPo> I have not been diagnoised with IC,, but think I may have it. Does having a cystopscopy mean that the doctor should find something and diagnose IC? I had one but Dr, found nothing. I felt better after it for awhile. Dr. just dialated my uretha, but that did not help. I do not have pain my bladder always feels full, urinate 30 or more times a day.
<icnmgrjill> LINDA... EXCELLENT QUESTION
<icnmgrjill> YES.. WHEN A DOCTOR DOES A HYDRODISTENTION (WITH GENERAL ANAESTHESIA)
<icnmgrjill> THEY LOOK FOR CHARACTERISTIC SIGNS OF IC...
<icnmgrjill> CALLED GLOMERULATIONS AND/OR HUNNERS ULCERS..
<icnmgrjill> BUT THESE CAN ONLY BE SEEN DURING A DISTENTION..
<icnmgrjill> IF YOU HAD A CYSTO IN THE DOCS OFFICE, LIKE i DID, I HAD THREE BTW...
<icnmgrjill> THAT USUALLY DOES NOT REVEAL IC..
<icnmgrjill> DOES THAT MAKE SENSE??
<icnmgrjill> A CYSTO ALONE JUST LOOKS INSIDE THE BLADDER..
<icnmgrjill> THE DISTENTION ACTUALLY STRETCHES AND RINSES OUT THE BLADDER
<icnmgrjill> AND THAT IS THE TEST THAT THE NIH HAS SET AS THE STANDARD FOR DIAGNOSING IC..
<icnmgrjill> ALTHOUGH DIAGNOSIS CAN ALSO BE MADE BY EXCLUSION
<icnmgrjill> OH.. AND BEFORE I FORGET.
<icnmgrjill> PLEASE REMEMBER THAT THE ICN NOR ANYONE HERE.. ARE MEDICAL AUTHORITIES...
<icnmgrjill> WE ARE SIMPLY PATIENTS TALKING WITH EACH OTHER...
<icnmgrjill> AND ANY INFORMATIONR ECEIVED HERE SHOULD NOT REPLACE ADVICE RECEIVED FROM A FACE TO FACE
<icnmgrjill> CONSULTATION WITH YOUR OWN DOC..
<Rozy> Good night to everyone, I hope all of you enjoy the rest of the evening.
<icnmgrjill> ANY OTHER QUESTIONS OUT THERE??
<Rabbit_Stan> bye Rozy :(
<icnmgrjill> OR SHOULD WE JUST OPEN THE FLOOR TO CHAT..
<LindaPo> what is three btw? I had the distention when they fill your bladder with water.
<Rabbit_Stan> btw = by the way
<icnmgrjill> lINDA.. DID HE SEE ANYTHING AT ALL DURING THE DISTENTION??
<icnmgrjill> DID HE DO A VIDEO OF IT OR TAKE PICTURES??
<TerriDan> Linda, were you under general anesthesia?
<LindaPo> My urologist did see something black at the bottom of my bladder, but didn;t think it was anything.
<coopie1> Jill, WHat is the best over the counter medicine for mild IC pain? Tylenol, Aleve or Advil?
<TerriDan> coopie, I take Ibuprofen - also an anti-inflammitory
<DebbieB-IC> <DebbieB> I had pictures of my bladder , my kids said it look like Mars!!
<JenW> Jill, what about over the counter antihistamines. Benadryl seems to help..
<Rabbit_Stan> Mary can only take Tylenol
<icnmgrjill> coopie.. you know.. I can't answer that.. we're all very different..
<LindaPo> No, he didn;t do a video or pictures.
<icnmgrjill> Jen.. to my knowledge, only hydroxyzine, as an antihistamine, has had extensive IC research studies which demonstrate an improvement for some icers..
<coopie1> I read the Gillespie says NO to Aleve, but I like it. She says it can add to pelvic pain
<Rabbit_Stan> Linda was it a uniform red or did it have spots?
<icnmgrjill> LINDA.. DID HE SAY IT WAS INFLAMED.. OR IRRITATED?? AT ALL??
<JenW> Is that over the counter?
<TerriDan> Jen, Benadryl is "drying", Sudafed is "decongesting". Just found that out from the kids' doctor...
<LindaPo> Rabbit I'm not sure I think the doctor said black, but its been about 2 years
<coopie1> jen, NO it is Atarax or Visteril, prescriptions
<Rabbit_Stan> do you have a picture Linda?
<icnmgrjill> JEN.. HYDROXYZINE = VISTARIL = ATARAX
<LindaPo> jill, no he didn't say anything about it being inflamed or irritated
<icnmgrjill> JUST PRODUCT NAMES..
<icnmgrjill> HMMM... AND WHAT ARE YOUR SYMPTOMS LINDA??
<LindaPo> rabbit, no
<JenW> Thx. Seems like mine is triggered by allergies ..
<Rabbit_Stan> Mary may be getting allergys
<TerriDan> brb
<Rabbit_Stan> or has had mild ones
<Rabbit_Stan> that are worsening
<LindaPo> jill, my bladder always feels full even after I've just urinated, I urinate at least 30 times a day, Many times only a few minutes later and there normally is some urine.
<coopie1> My uro won't give the allergy thing any credit, says there is only one study on it, can that be true?
<Rabbit_Stan> sure SOUNDS like IC Linda?
<coopie1> lesa!!!! hi
<Rabbit_Stan> hi Lesa
<NanciK> Rabbit-Dan - they say that this will be the worst year for allergies due to the funky weather we've been having. What part of the country do you live in?
<Lesa1> HI COOPIE!!!!!! Hi Everybody!!!! {{{{Hugs}}}}}
<DebbieB-IC> <DebbieB> Hi Lesa
<coopie1> (((lesa)))
<JenW> I get sinusitis, pleurisy and now another inflamatory disease. Seems possible that alleriges are a systemiic problem to me.
<LindaPo> I wanted others opinions before I approach my urologist with info I just found this week. Never heard of IC before.
<icnmgrjill> Linda.. have you had a full gyn work up??
<TerriDan> back
<Rabbit_Stan> allegry could tire the system and make IC worse Marys doctor thinks allergys, IC etc cause fibromyalgia and fitague
<Rabbit_Stan> Kansas Nanci :(
<RebaJo> brb
<RebaJo> gotta potty
<LindaPo> jill, what do you mean full gyn?
*** ash is now known as Guest56373
<Lesa1> Does anyone know what the 'rewritten' post was about? Why would someone say that?
<Rabbit_Stan> hi ash
<coopie1> stan/rabbit, went to medical doctor who practice homeopathy today, he said allergies play a major role in some IC cases for him
<icnmgrjill> full pelvic.. ob-gyn for endometriosis.. and/or pelvic floor dysfunction
<Rabbit_Stan> what did it say Lesa
<icnmgrjill> Lesa.. it's not true at all
<JenW> Stan - Has she tried antihistamines?
<icnmgrjill> We were hear two years before the ICA and I personally built the site
<LindaPo> jill, no
<JenW> Hmm.
<icnmgrjill> It's nuts.. and I just edited his message adding that..
<Lesa1> I don't believe that it is true....I just don't understand why someone would try to sabatoge
<Rabbit_Stan> Yes Jen they may have helped briefly
<icnmgrjill> Linda.. there is a condition called pelvic floor dysfunction
<Rabbit_Stan> cool coopie ;)
<Rabbit_Stan> :)
<coopie1> jill, that was so weird - what a jerk
<icnmgrjill> that can place muscle strain and pressure down there..
<icnmgrjill> might be wortha check out..
<Lesa1> Why would non-profit organizations compete?
<icnmgrjill> lesa1... what can I say.. some people feel that any info on IC belongs to that other group.. and that's not the case...
<icnmgrjill> I think it's more about being threatened.. that's all
<JenW> Problem is Stan now I can't eat any wheat, corn, rice, etc. :.{ (Newbies attempt at sad face)
<icnmgrjill> we're successful now.. we're a threat to the status quo
<LindaPo> jill, would that cause my problem and is there a cure?
<icnmgrjill> :)
<TerriDan> :) Jen
<Rabbit_Stan> good sad face Jen :)
<Guest56373> Hello my name is Ashley I am sherry's (sweetroses) daughter. my mom has been real sick today with a migraine and cannot be here tonight
<icnmgrjill> Linda.. pelvic floor is gaining more and more acceptance in the past few years
<icnmgrjill> on this website we have one woman, Carol L,
<Rabbit_Stan> No Rice Jen?
<TerriDan> Hi Ashley!
<Lesa1> Oh...Ashley....give her a big hug from all of us
<coopie1> Rice is okay ususally
<icnmgrjill> who was told that her bladder was in such bad shape that they were considering bladder removal..
<TerriDan> Send her our love!
<Rabbit_Stan> thanx for bein here ashley
<andrea808> How does a gyn check for pelvic floor dysfunction?
<icnmgrjill> but then, she went to an IC expert,
<icnmgrjill> who discovered that she had pelvic floor dysfunction
<RebaJo> I hope your mother feels better ashley.
<icnmgrjill> and with physical therapy.. she's doing much better!
<icnmgrjill> Andrea.. it's a pelvic....
<Rabbit_Stan> Ashley tell tyour mom we hope her migraine gets better - Mary understands
<icnmgrjill> Jerome Weiss, over in SF, also does it!
<JenW> ;)
<coopie1> Jill was that Dr Payne?
<JenW> Brown rice seems ok. Twice have had bad nights after white
<icnmgrjill> YES.. COOPIE!
<icnmgrjill> ONE LAST QUESTION.. FOLKS...
<icnmgrjill> WE NEED A NAME FOR OUR NEW IC TERMS GLOSSARY...
<icnmgrjill> ANY IDEAS??
<Rabbit_Stan> wow Jen rice allegrys are rare :(
<Lesa1> A name other than IC Terms Glossary?
<icnmgrjill> WE DON'T WANT TO USE THE WORD DICTIONARY.. WE NEED SOMETHING SNAPPY
<icnmgrjill> LOL.. YES LESA
<LindaPo> jill, so you think that is more likely what I have and not IC?
<JenW> Have lost weight eating only meat & vegies :) and being on dmso..
<Guest56373> thanks she didn't want any of you to worry about her...bye for now. i have 1 question is there a support group for kids that there mom or dad has ic?
<Rabbit_Stan> bye ashley
<TerriDan> Jill - Dan said: "IC What they mean" (I See What They Mean...)
<coopie1> i love that
<icnmgrjill> terri! excellent!
<Rabbit_Stan> Terri :)
<NanciK> I like it too
<JenW> very good
<icnmgrjill> ashley.. not yet.. but would you like one??
<TerriDan> That was Dan's Idea!!
<Rabbit_Stan> cool dan
<Guest56373> yes i would like one.
<Lesa1> 'Defining IC' ......?
<icnmgrjill> Linda.. no.. I don't know...
<TerriDan> I bet my kids would too!
<icnmgrjill> but it's an option worth learning more about...
<icnmgrjill> Ashley.. thank you so much for that excellent suggestion!
<icnmgrjill> let me see what I can .. okay??
<icnmgrjill> I'll try to get one going for you!
<Guest56373> thank you
<icnmgrjill> <wide grin and waves from California>
<icnmgrjill> OKAY FOLKS.. THE CHAT FLOOR IS NOW OFFICIALLY OPEN
<icnmgrjill> CHAT AWAY..
<RebaJo> Hi Kcolours
<icnmgrjill> I'LL BE HERE FOR A FEW MORE MINUTES TO TAKE QUESTIONS
<Rabbit_Stan> chat caht
<Rabbit_Stan> chat
<icnmgrjill> ASHLEY.. WOULD YOU LIKE TO BE A GROUP LEADER FOR THAT GROUP??
<RebaJo> Jill....have you met Kcolours? She is new here.
<Rabbit_Stan> hi kcolors
<coopie1> Has anyone tried homeopathy for their IC
<Lesa1> I'm wondering about lower back pain.....is this IC related?
<Guest56373> thanks goodnight
<TerriDan> Good Night All!! See you soon!!
<JenW> Hi k.
<icnmgrjill> WOULD YOU LIKE TO HELP SET IT UP??
<Rabbit_Stan> bye ashley
<icnmgrjill> GREETINGS KCOLOURS.. IT IS VERY NICE TO MEET YOU!
<Rabbit_Stan> RebaHJo we rescued an injured woodchuck
<bbird> Hi kcolours
<JenW> Lesa-I get lower back pain before my systoms - I really think its relate.
<RebaJo> really?
<Rabbit_Stan> and took him/her to a wildlife rehab place
<RebaJo> Is it ok?
<LindaPo> jill, thanks for your advice.
<Rabbit_Stan> they think its goinmg to be all right
<icnmgrjill> LINDA.. JUST REMEMBER.. NO ONE HERE CAN GIVE YOU ADVICE.. OTHER THAN TO BECOME A VERY ACTIVE, INFORMED AND PRO ACTIVE PATIENT
<RebaJo> I rescued four baby mice....... They are soooo cute.
<andrea808> Linda, I would go see a new urologist that is familiar with IC.
<RebaJo> :)
<icnmgrjill> YOU'VE GOT SOME WORK TO DO TO LEARN MORE ABOUT IC.. AND
<Rabbit_Stan> need prayers that we can find its home
<icnmgrjill> HOW OTHER CONDITIONS RELATE..
<Rabbit_Stan> burrow
<coopie1> Jill have you heard of anyone getting relief through homeopathy?
<icnmgrjill> PELVIC FLOOR IS ONE OF THOSE.. THAT IS FASCINATING.. ANYWAY...
<icnmgrjill> THAT THE PELVIS CAN WEAKEN OR DEVELOP MUSCLE KNOTS...
<Shava1> my kids would to
<Rabbit_Stan> awww Reba :)
<icnmgrjill> COOPIE.. OTHER THAN THE RESEARCH ON LARGININE ... NO
<RebaJo> :)
<Rabbit_Stan> Linda - try a new urologist
<icnmgrjill> EXCEPT MAYBE THAT TEA THAT WAS TESTED BUT IS EXPENSIVE
<Lesa1> Jill....what do you know about Tramadol?
<Rabbit_Stan> Jill are there any theories connecting IC and migraines
<RebaJo> brb.......gotta find some food.
<Rabbit_Stan> why so many ICers w migraines
<JenW> Jill-what tea?
<LindaPo> andrea808 I limited by my HMO, but I'll check/
<bbird> Who would diagnosis pelivc floor? A gyno.?
<icnmgrjill> ACTUALLY STANMARY./.. THATS A GOOD QUESTION
<icnmgrjill> I'VE HEARD THAT MIGRAINES ARE CONSIDERED A RELATED CONDITION TO IC..
<andrea808> Linda I am on an HMO too, so I called all of the urologists on my plan to find out who had IC patients.
<icnmgrjill> AND, AT ONE TIME, MY DOCTOR AT UCSF CALLED IC A PELVIC MIGRAINE..
<icnmgrjill> I DON'T KNOW OF ANY DIRECT RESEARCH THOUGH.. OTHER THAN ANECDOTAL REPORTS
<Rabbit_Stan> Jill any neuro explanation or articles
<Rabbit_Stan> tanhx
<Rabbit_Stan> thanx
<NanciK> Migraines are sometimes hormonally related - have you kept a log with menstrual cycle and migraines? That's how I discovered the connection with mine
<icnmgrjill> LESA.. NOTHING.. YOU CAN LOOK TRAMADOL UP AT THE ONLINE PDR..
<icnmgrjill> JUST GO TO OUR FRONT PAGE.. AND CLICK DRUG SEARCH
<JenW> My migranes are from allergies (surprise!)
<icnmgrjill> WWW.IC-NETWORK.COM
<LindaPo> Rabbit, do you think if I take the information I've found on the internet /magazine to my current urologist it would help/
<icnmgrjill> BBIRD.. A GYNECOLOGIST OR PHYSICAL THERAPIST COULD DIAGNOSE IC..
<Rabbit_Stan> Nanci - Mary pretty much has non stop migraines
<icnmgrjill> IF THEY ARE UP ON IT.
<bbird> How do you tell if you have a migraine or a headache?
<Rabbit_Stan> been getting lots better w PT
<icnmgrjill> STAN.. YES.. THERE ARE MANY BUT ITS TOO LONG TO GET INTO NOW..
<NanciK> Rabbit/Stan - look up - does my post help any?
<icnmgrjill> I'M RESEARCHING THAT RIGHT NOW
<RebaJo> It might Linda.....It wouldnt hurt.
<Rabbit_Stan> anything would help Linda
<RebaJo> I have taken information to my doctors before.
<icnmgrjill> LINDA... TAKE INFO FROM THE WWW.NIDDK.NIH.GOV WEBSITE
<icnmgrjill> THEY HAVE A GOOD TRANSCRIPT ON IC.. AND IT'S WRITTEN BY THE NATIONAL
<Rabbit_Stan> Mary takes a folder to her doctor
<NanciK> When was the last time you had your hormones checked? An overabudance of (I think) progesterone can cause it
<icnmgrjill> INSTITUTES OF HEALTH.. SO IT'S RPETTY DARN CREDIBLE
<JenW> bbird -Migrane is in one spot - somewhat lose vision or it gets blurry
<icnmgrjill> :)
<coopie1> I have the worst pelvic migraine -ouch
<Rabbit_Stan> brb
<Lesa1> ((((Coopie)))))
<NanciK> BBird - when I get amigraine I can't look at any light and the smallest sound hurts. I also have vomiting and occassionally I will get 'fireworks' in my eyes.
<Rabbit_Stan> yes Nanci they get worse during period until ovulation
<coopie1> Jill, my uro wouldn't give me pain meds is this normal?
<icnmgrjill> LINDA.. BRING A VOIDING DIARY TOO... THAT WILL HELP EXPLAIN THE STATUS OF YOUR BLADDER THROUGH DOCUMENTATION..
<Lesa1> Mine won't either, Coop
<coopie1> SHe said that you don't want to depend on narcotics.
<icnmgrjill> GETS CREDIBLITY WITH SOME DOCS..
<LindaPo> jill, thanks I'll do that
<JenW> Stan-has Mary tried going to an allergist
<andrea808> Unfortunately coopie it is common to get denied. I would try a new doctor.
<Lesa1> Has anyone heard that it is better to avoid non-filtered drinking water?
<RebaJo> I have been keeping a voiding diary for almost a month now.
<RebaJo> Yes....I have Lesa.
* ICN_KEN the official logged chat is now ended