New to Boards

[Berkshire Road]

I'm posting this under "Newly Diagnosed," although my diagnosis was actually made almost three years ago. But I'm brand new to the boards, so I thought I'd introduce myself.

I had a frustrating time registering here -- every single user name I tried to get was already in use, so I ended up putting in N'importe Qui, which means, roughly "whoever." But my name is actually Carolyn.

I have had IC at least 12 years, and can remember frequency/urgency symptoms as far back as college, which would put them 20 years ago. Long story short, I went through 9 years of the same kind of hell as a lot of you have -- going from doctor to doctor, not being believed, not getting pain relief, not getting a diagnosis. My husband finally found me the most wonderful Dr. in the world in Bethlehem PA, which is 60 miles away but well worth the trip. I've had one good remission but relapsed about a year ago, and things have gone from bad to worse. Now I'm looking into applying for SS Disability.

As I'm sure you all know, this is hell on me and my family (husband and 11 year old daughter) and especially at times like this, when I'm DOING everything I'm supposed to be doing, and I'm still not getting better.

I'm not really looking for information here. I'm an academic and so I've researched IC pretty thoroughly. Just looking for support, and hoping to find the kinds of suggestions for relief that people come up with on their own.

Anyway, sorry that was long. Hi, everybody.

Carolyn

[SharonA]

:welcome: Carolyn,

I am so glad you were persistant and came up with a user name. BTW...very cute name, indeed.

I am sure you will get lots of posts from people who have had to be self-reliant when dealing with IC. The only out of the norm thing I have done came about when my hubby and I were in California a while back. We were driving back towards San Francisco after visiting with a friend in the Central Valley. All of a sudden, I started burning down below. I mean, it was almost like my poor private parts were on fire. I was trying to get comfortable when I remembered a post here some time back that suggested an ice pack for that type of burn. Like I said, I was in a car far, far away from my ice packs in my freezer at home. I told hubby to pull into the next rest stop. After we stopped, I asked hubby to buy a cold soda. I told him it did not matter what kind because I was not going to drink it. When we got back in the car, I placed it between my legs...Instant relief!!!! It also made both of us laugh and we teased about me being a hot mamma as we drove down the road, soda in place. :lmao:

[leelee88]

:welcome: Carolyn,
You have come to the right place when you need support, all the people are very friendly and willing to help with anything that you need..I am so glad I found this site, and I am sure you will be to:smile tee

[VickiB]

Hi Carolyn, glad to have you join us!

"-- going from doctor to doctor, not being believed, not getting pain relief, not getting a diagnosis." Yep, that's me too, -almost 30 years of that song & dance. What's wrong with this picture?

Welcome to ICN!
Vicki

[dancemomof2]

:welcome: so glad you found us for support. Feel free to ask anytime.

[sami4]

Welcome. Were you on any IC meds during your long remission? What do you take now? Hope you get another long remission soon.
Hugs, Sammi