anyone in SF/East Bay/South Bay?

[tanster]

Hi:

I am new to the forum although I was diagnosed with IC in 2001 (had symptoms for a few years before that). I'm not currently undergoing any treatments but have tried a variety of medical and alternative therapies all to no avail. I'm just getting really discouraged though. I've noticed my frequency/urgency symptoms worsening (particularly at night) and now a lot of retention as well. Although my family and co-workers are really supportive, I would love to connect with people who can relate to how painful and frustrating this disease can be. I try not to discuss my condition much with friends to avoid seeming "whiny" but obviously my office mates and family are aware of the daily ups and downs, but it's really different being the one going through the pain, so I'm glad to stumble upon this forum!

[curlycue]

Welcome tanster, I understand about not wanting to speak with other people about this diease, I have found out that no matter how I explaine it they just dont get it. Good luck

[kadi]

Hi Tanster, I live in the Hayward area. You are not alone. If your local doctor hasn't been able to help, have you gone to Stanford or UCSF? I've found a lot of help at Stanford, it's been worth the drive. I've finally found a combination of treatments that work for me & I feel good most of the time now. I hope you are able to find something that works equally well for you & that you can find support & information here!

Yep, Ruth, you're right, I've tried so many times to explain it & people just get confused. The only ones who get it are people who've been ill themselves at one point or another.

At least we all have each other here, right?

[tanster]

Hi Kadi and Ruth:

Thanks for your messages! I live in Fremont so I pass through Hayward on the BART while going to work. Kadi, are you seeing Dr. Payne at Stanford? My Uro (at Kaiser) is really nice, but I'm just frustrated that nearly 5 years later, I'm still in the same boat (actually worse, I didn't used to have retention). I'm thinking of paying out of pocket to seek a 2nd opinion outside of the HMO, so that's why I ask. Also, Kadi, if you don't mind my asking, what are your treatments/medicines at this point? I've tried a boatload of treatments and just got tired last year of all the side effects and never knowing how my body would react, so out of frustration, I just stopped everything. But I've started feeling a lot worse lately and I know avoiding doing anything and pretending the IC is going to magically go away isn't really a sustainable state.

[kadi]

Hello tanster.
Yes, I see Dr. Payne. My current treatments are:
Strict adherance to the IC diet
Elavil 20mg at night
Ditropan 5mg at night
Necon 1/35--continuous use birth control (4 periods a year means less hormonal flares)

At home bladder instillations 3x a week of
Marcaine
Sodium Bicarbonate
Heparin
Sterile water

I totally understand your frustration. I had 2 years of misery trying this & that before I got this combination of things that works together. Even when I started the home instills it took a solid month of trial & error with different types & sizes of catheters, different concentrations of meds & water to get it right... It is an incredibly difficult & frustrating process, but worth it when it finally works out.
I am praying this lasts.

A few ideas off the top of my head...
Have you tried the IC diet? There's a really good version of it in the handbook on this site. http://www.ic-network.com/handbook/diet.html
Also, have you talked to a Patient Advocate at Kaiser? They may be able to authorize an evaluation at Stanford if your treatments are not sufficient at Kaiser. It may take some appealing, but it might work out ok. And if they say no, you're not worse off, right, since you're figuring you'd have to pay anyway?

Wishing you better days soon!

[Melanie]

Something to share w/ Friends & Family: http://www.butyoudontlooksick.com/spoons.htm

I highly recommend Dr. Payne. I've been going to him for 7+ yrs. He's very knowledgable and compassionate. He's currently doing 2 studies on IC... I'm not sure about this.... but it may mean seeing him at less cost than usual to participate in studies.

[tanster]

Hi Kadi and Melanie:

Thanks for your messages, it helps to connect with other people that have been where I'm at. Melanie, thanks for sending the "spoons" website, it would be helpful to explain to my friends/family why I sometimes can't do things we planned, not that I'm being flaky... for the most part, they are pretty supportive but I don't think they "get" IC. It's not going to go away like the flu or a broken arm. It's an ongoing condition that needs to be managed. I just feel a lot of pressure sometimes to act like I'm perfectly fine so as not to stress other people or depress them. I think it was particularly hard on people I had known my whole life that I've somehow become a different person (no energy/enthusiasm for things) but I look the same. Actually, I don't look the same, I've put on 20 pounds since I'm too tired to work out and I eat junk food to try to cheer myself up (and I'm not a great cook even at the best so it's easier to go out). :toilet: Sorry, I'm digressing here. I will also look into the Stanford studies you mentioned, Melanie.

Kadi, thanks for the great suggestions. I actually was told I need to get a second opinion at Kaiser first before they will think about sending me elsewhere so I need to get that scheduled, but it's good to keep the patient advocate thing in mind if need be. I might end up switching to my husband's insurance during open enrollment so I have more options other than Kaiser next year. I'm not sure if the insurance company can "reject" me for a pre-existing condition though?? As to the IC diet, I really need to get more stringent about what I eat. I never was a coffee drinker and I stopped drinking alcohol (except on very very rare occassions) when I was diagnosed four years ago. But I do need rein in what I consume food-wise, although I must admit, looking at this IC diet thing is pretty daunting!! I'm vegetarian so my diet is a bit limited to begin with... did you just go "cold turkey" on the don'ts list or did you try to pinpoint what foods exactly were causing you problems? I guess it's "bye-bye chocolate" :shake: !!

[Melanie]

I can relate.... I've gained weight too. IC presents us with many challenges. But mostly it's an "invisible" chronic illness.
About food... many here swear by the IC diet. You have to experiment with it. For me, I have to drink water and only water (evian actually). I can eat most foods, most everything in moderation. I avoid spicy & acidic foods. I still eat chocolate occasionally, I just eat small amounts to satisify the craving. Check out the handbook for IC diet tips and recipies.

[kadi]

Hi Tanster,
I used the diet link on this website & ate only out of the left hand column. Then eventually began testing middle column foods, taped the diet to the fridge, & marked what was ok & what caused symptom increases within the 24 hours after eating it. I also went for allergy testing, which helped a bit. Following the diet is one of the major reasons I can usually avoid narcotic pain relievers. And since most serious painkillers make me sick from side effects, that's a good motivation.

About chocolate? Well, I can "get away with" a white chocolate Kit Kat, if I take Prelief (a de-acidifier you can get at Walgreens or Costco can special order it for you for about 40% less). I also eat carob malt balls I get at the health food store or I get carob chips & sprinkle them on vanilla ice cream. Unfortunately, I've gained quite a bit of weight, but am losing it, now that I feel better & can work out again!

If your husband's insurance is a group policy & has open enrollment, you should be able to get in without problems. Also, one of the few good things about IC is that with so few people knowing what it is, it's not yet usually on the list of exclusionary illnesses...

Hoping you find some relief soon!

[charmedx3]

Hi! I just went to see new uro at UCSF. Had the best experience so far! This must of been my 8th or9th atempt on figuring this all out. I go back on nov 3rd. I live about 50miles north of SF. I hope that you are feeling well soon.

[baybiker]

hi all-
I live in San Jose and also go to Dr. Payne. I've been to other doctor's, and have to say that I've been the happiest with Dr. Payne. I also follow the IC diet. I was a vegetarian for over 20 years, but found that soy, beans, and most nuts kill me. I'm OK with dairly sometimes. So, I went back to eating animals about a year ago. I really struggle with it, but my bladder feels better when I'm off those foods. And, I have more energy. (This is my body though. Everyone's body is different, so I'm not advocating what a person should eat.)

Chocolate- I can't get away with eating anything but a bit of white chocolate. I miss eating my favorite fruits the most. My husband took out some grapes the other day- and my mouth just started watering!

One thing that has really helped me (and I was surprised) was adding yoga to my weekly routine. Granted, I only do it for about 20-25 minutes at a time, three days a week. But, I sleep through the night, and feel much better during the day. I use a DVD, and have just starting taking an introduction class at a studio down here. It's made a big difference.

[curlycue]

Hi Tanster,
I was just wondering how you are doing? I hope great.

[tanster]

Hi everyone:

Thanks so much for all your replies and sorry for not writing sooner, was travelling for work. It was actually really comforting to at least know that some other people could relate to how I was feeling! I was in the middle of a bad flare and kept having to ask for more toilet paper at the hotel -- they were probably wondering how in the world I was actually going through tp at such a rapid rate! Oh well. I'm home now and having alternate bouts of urgency and retention. UGHHHH! Been trying hard to monitor my diet and am keeping a food journal to see if I can pinpoint any triggers. I'm getting a second opinion at Kaiser in late November so maybe this Dr will have some more ideas for me. The retention is a relatively new thing for me so I'm a bit worried and confused as to what's going on with my bladder now. Hope you all are well and thank you again for your replies.

[peaceplease]

Hi:
I just did a review of threads in the last year, because while I post all the time I have never bothered to look at the California area posts (don't ask me why) cuz' I guess I just was so focused on the treatment/symptom threads. Anyway, I have been going to UCSF and am seeing Dr. Stoller for SANS at the moment (this is the same treatement Jill Osborne had as she writes about in her story.) I just saw Dr. Payne for the first time last week, as he is to be my primary urologist. He was NOT what I was expecting and quite different from how I had heard him described on this website.
Anyway, I live in Oakland, am married and have a almost 4 year old son and 7 year old daughter. I am a stayathome mom and I feel very very isolated and alone, nobody I know has IC and even more, nobody I am close to has ever heard of it up until my developing it.
I would love to connect with some of you, even if it is just to talk on the phone, especially those of you seening Dr. Payne. I realize I am responding to an old thread and I apologize for that.

[kadi]

HI peaceplease:)
Welcome- you will find a lot of support & information here!
Hoping that you are doing well & finding relief soon!