Newly diagnosed

[lledoux_2000]

I was diagnosed in Aug 2005. I didn't have pain associated w/my bladder until after the scope for diagnosis. I have a strong feeling that it triggered the pain. I had only been dealing w/frequency and urgency. I tried 1/2 a banana a couple of weeks after scope and then I learned what urethra pain is really like. That's when I agreed to try the bladder cocktails. After only one DMSO, Hurricane Rita hit and I had to evacuate for 2 1/2 weeks. Driving through those stressful conditions and staying w/my parents - (Their electricity was only off for about three days) My parents were wonderful. My dad and I found an open store - at first we couldn't even find a gas station open - then able to only get a few gallons at a time - My mom picked fresh okra from the garden and using cornmeal - we made the best of it and ate fried okra out on the back porch (with no a/c it was too hot to heat up the kitchen) Being new to IC - I was afraid to eat much of anything - but I was drinking bottled water - that's when I learned to be picky about the bottled water. I had refilled my Elmiron before we evacuated, but ran out of prelief.
A lot of your stories touch base with me. I understand bouts of bitterness, isolation - and I painted my bathroom this summer because I was spending so much time in it anyway. (Before diagnosis) One thing that set off a flare for me this holiday was mopping the floor. I used ammonia to clean it and mop n glo to shine it. Then I spent the night going to the bathroom.
There's one thing that has angered me through it all - not being able to find a doctor that treats the illness - everyone is in such a hurry to treat the symptoms... I kept having uti's --- and being told "once you get one, you're more likely to get another one" --- then I read You Don't Have to Live with Cystitis by Larrian Gillespie and I figured out why I was getting UTI's - haven't had one in 4 months and I was having them frequently.
The IC diet helps my IC symptoms, my endo symptoms, and my frequency of migraines. It's forced me to slow down and smell the roses... but I still miss ketchup!
Good luck to everyone.
Thanks for listening!

[ICNDonna]

That must have been scary having to evacuate. I can't imagine having to leave everything behind.

Sending gentle hugs,
Donna

[traceann]

Oh I agree with Donna, I can't imagine having to evacuate! That alone must have been irritating to your bladder, and it's a good thing you had your Elmiron filled before you had to leave. ;)

And you never know, some day you may be able to enjoy ketchup again! Maybe not in the same amounts you used to, but some is better than none!! LOL :)

Hugs!!!!

[SharonA]

:welcome: to the ICN...

I'm with the others. It must have been horrible to have to leave everything behind not knowing what you would face when you returned. Have you been able to back, yet? If so, did you have a lot of damage?

We had a bunch of people come up to the Memphis area. I was privileged to meet a lot of them. Our church was a Red Cross location...so were a lot of other churches in this area.

Also glad that you have a handle on some of the symptoms. :)

[dbdab]

My symptoms worsened after having a cystoscopy with hydrodistension in the hospital and I've also had DMSO treatments and Heparin cocktail treatments this year which didn't seem to help. The only thing I think that gave some improvement is Elmiron. My frequence went from 40-45 times a day down to about 30-35 times day. It doesn't seem to want to get any better than that. I'm about 3 months away from being on Elmiron for a year and I'm hoping when I get to a year it will put me in remission.

I can't imagine how hard it must have been to have to evacuate your home during a hurricane. My heart definetely goes out to you. When I read everyone's stories I really realize that somewhere out there someone is most likely having a far worse day than me.

I agree with you about doctors. It is very difficult to find one that takes the time you need and understands what you are going through. I think if you can you should look for a new one. My doctor is fairly good and has let me try many different treatments, but I think he's about to give up on getting me any better.

Good luck with everything. Deb

P.S. I miss tomato very much too.

[lledoux_2000]

We were w/out electricity a total of 15 days - my husband had to return the day after the storm (for work) so I knew that we hadn't had much damage - just a few missing pieces of siding - didn't lose a shingle! He bought a generator (had to travel almost 2 hours to get gas for it) and that kept our frig and freezer going --- compared to others around us, we were extremely fortunate. I returned when the ban was lifted and then my boys came once electricity was restored. We were still without mail service, etc. Going to grocery stores that were still on generators - closed early each day - lots of doctors and other businesses weren't back, yet - some had damage to their offices and couldn't reopen immediately. I ate lots and lots of potatoes during that span of time because I didn't know how accessible anything would be- my niece almost had to travel out of town to have her baby.
we had been in school 23 days and out of school 24 days...so now our days are 30 minutes longer to make up for it. It was an adventure!

[Rosalie]

:welcome:
Just want to add my welcome to the boards.
I had been wondering how thing were now after the huricane. We heard so much for the first few days over here and then nothing. I am glad that you are back in your home with things returning to some sort of normality.

[Sarojini]

:grouphug: :grouphug:

Just wanted to :welcome: you to the boards!

[SharonA]

Where in Louisiana is Sulphur?

[creatingkarma]

I just wanted to say hello too. I'm sorry that you had to endure all of that & glad that you and your family remained safe.

[Katrina]

:welcome: to the ICN! So glad you found us. I am so sorry you had to go through that. I have Endo as well. :grouphug: Good luck with treatment and finding a good doctor! :grouphug:
http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!
http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is newbie kit from the oldies to the newbies

[lledoux_2000]

Where in Louisiana is Sulphur?


Southwest Louisiana - about 30 miles from the Gulf of Mexico.
I've lived here my entire life - (41 years!)

[hoping4acure]

HI! :welcome: So sorry you went through all that. Being evacuated on top of IC...yikes, I can't even imagine!

I hope you are more situated now.

These boards are wonderful...be sure to read the IC Handbook and IC diet link below.


See you around the boards

:grouphug: