Have IC and In West Virginia

[christinaw]

Planning Support Group Meeting - Morgantown, WV and Via Web-Cam Connection

Hi Fellow WV IC-ers!
Some of you I have spoken with in the past, some of you I haven't met before. I am Christina - took over IC support group meetings when Louise was unable to continue a while ago. We've had a few (more than just the past year, Louise, sorry if I haven't reached you - tried to but email came back) and have kept in touch w/ most via email and phone when unable to come to Morgantown. I've been working closely with Dr. Z and am upgrading our Morgantown chapter to state-wide via web-cam connection for those who can't travel. Please contact me via email (304) 692-9199 or email [email protected] for more info. Hope to have next meeting in MOrgantown in September.
Wishing you wellness,
cjw

[christinaw]

Hi Louise,
I took over meetings when you were unable to do so - and continue to have meetings! I, like you, became extremely ill (I also have lyme disease) and was completely bed-bound for a while, but am on the mend now and am planning a meeting in MOrgantown for September. I have been working with Dr. Z for a long time on things, and am also working out the logistics for web-conferencing for those who can't travel to Morgantown. I'm glad to see your post! I've tried to reach you several different ways and just haven't been able to connect with you. Please call me to chat about things - if you are feeling up to it I could use your help!
cjw

[vocalsgsc]

Hi Valerie,

I saw that you have the Interstim...I am going to the uro Dr. Mali in Charleston and I am so thinking about the Interstim. Has that halped your pain? Please let me know. [email protected]

[vocalsgsc]

Hi Christina....
I need help...support...advise...I don't work tomorrow and I would love to talk to you!!! [email protected]

[dancemomof2]

I have the Interstim and NO It will not help pain it is for urgency/ frequency only. If this Dr in Charleston is doing stim and telling you it is for pain please don't do it for that reason. I had mine done at WVU and have had complete success with the urgency/frequency but my pain is still requiring treatment. This is alot of money to spend for something to be let down when you get no pain relief from it. Please do all the research on this and I am sure you will find that I am right.

[hdb1982]

I see alot of you are from the charleston area. I will be in Oak Hill WV this weekend. I live here in Morgantown. Can you tell me if Charleston has a Checkers still? If so I may wander to charleston just for a Checkers chicken sandwich. That's crazy isn't it. Drive that far for a sandwich. LOL I'm silly like that.


Heather

[dancemomof2]

CHeckers

Map
Name
Address
Phone
Distance

4110 1st Avenue
Nitro WV 25143
Driving directions
(304) 755-3505
0.00 miles

1667 3rd Avenue
Charleston WV 25312
Driving directions
(304) 345-2808
10.29 miles

1626 Washington Street East
Charleston WV 25312
Driving directions
(304) 343-6432
10.35 miles

[hdb1982]

I know how to get to Checkers but was unsure if they were still in that area. I haven't been to Charleston for a few years. We don't have a Checkers here so I look forward to it everytime I am bear there. There are a lot of restaurants I wish we had. Especially Sonic. We finally got an IHOP, Chilis, Olive Garden, Cheddars and Damons last year so that's nice. My favorite is Texas Roadhouse. We eat there every Friday.

[dancemomof2]

WE eat at Chedders everytime we are up there. I love that place. OK now I am looking forward to our pointe shoe fitting and Dr appti. OCT 1 just to eat at Chedders. LOL

[vocalsgsc]

Hello fellow WV'ers!!!

Those of you in the Parkersburg WV area or willing to make the drive I am really wanting to start a support group for us IC'ers! I am trying to get a number of people inetrested before I do much futher. I have lead a support group in the past. Thius is very importnant to me as this Broad is so great imagine what we could do for ech other face to face! Please let me know/ My e-mail is [email protected]

[vocalsgsc]

I just got a reffewral to Dr. Zaslau...I see his name alot...how is he?

[dancemomof2]

You will love him!!!!!!!!!!!!

[christinaw]

Dr. Z treats IC in cases from severe to mild. He has a superb understanding of this illness and terrific bedside manner. He is our medical advisor for the WV IC Resource Center. I think that you will like him.
Talk to you soon-
cjw

[michele68]

I'm new

Has anyone heard anything about Dr. Uzay Yasar in Charleston? I am in the process of being diagnosed. I've had SEVERE ugency and frequency since September 1. I feel like my bladder is going to explode. It's very painful and also driving me crazy. I feel like I'm going to lose my mind. I cry every day and night. I've been to the ER 3 times. They give me a shot of pain killer and send me home, which is fine until I wake up the next morning. I saw Dr. Yasar last week and he seems very nice and I felt comfortable with him. I just don't know how much experience he has with IC or what his treatment options are. I guess I will eventually find out.

On my first visit, he seemed to take my pain and problems seriously and he did an ultrasound and a cystoscopy. I was in so much pain (not from the procedure) that I didn't even ask as many questions as I know I should have. I don't even know what a healthy bladder is supposed to look like. Mine wasn't red but it did have red "veins" all over it, like a bloodshot eye. I assume that's not good? There was also a red bump on it that he pointed out to me and said he would have to biopasy. First,he sent me for a CAT scan on my abdoman and pelvis area. I'm still waiting for the results of that. He said once he got those results, he'd set me up for the biopasy. I have no medications or anything right now. I can't sleep at all. I haven't slept in weeks. I'm so miserable. Is there any good home remedies to help with my urgency or sleeping? AZO and pyridium make me really sick. I throw up everytime I try to take it, even with food.

So that's where I'm at right now. Waiting. Can someone please give me some encouragement and tell me that I'm going to be ok? I have read so much about this disease and I'm terrified. I just know that I can't live this way day in and day out for the rest of my live. It scares me to think I won't make it but I don't feel strong and I don't see how I can do this every day for the next 40 years. My main problem is the severe ugency. The feeling of a full bladder NEVER goes away. It's 24 hours a day and no matter how many times I go to the bathroom, it doesn't help. I want to scream! The pain is there too. It comes and goes in levels but the urgency is constant. If I could stop the urgency, I could probably manage my pain, at least for now. I'm really sad and angry too that this is happening to me. I just want my life back. I have a husband and two kids who need me. I have things to do. I know you all can probably understand this.

Sorry, I rambled. I'm just so upset by all of this. I'm SO happy to see some WV people on here. Not happy that you have IC but glad to know there are others who understand.

[dancemomof2]

Hi Michele, sorry I haven't seen this Dr. just wanted to send you some well wishes and hope you get some results soon. Maybe call the office and explainyou need some answers NOW. Let them know that you are in misery and need to get the ball rolling with this treatment plan he has for you. to the ICN. Let me know if you need anything.