Announcement

Collapse
No announcement yet.

WV Support Group

Collapse
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
  • #1

    WV Support Group

    Hello,

    I am in the process of starting an IC support group in West Virginia. Dr. Stanley Zaslau and his nurse Cindy Carpenter will be the group advisors. For those of you who do not know Dr. Zaslau, he is an urologist at West Virginia University who is very compationate about IC.

    If anyone is interested in volunteering or being a part of the group please contact me by phone or email. My phone number is 304-677-3232. My email address is [email protected]
    Louise
    West Virginia Interstitial Cystitis/Prostatitis Support Group Leader
    [email protected]
    Tags: None
  • #2
    Louise...

    I currently am living in Louisiana, but my husband and I will be moving back to West Virginia in about a year. I have heard Dr. Z's name mentioned a lot, and have thought about checking into seeing him. Is he your doctor? The problem is, I will be living near Huntington, which I hear is about 4 hours from where you all are located. Is that true? I am freaking out a little bit, because I have wonderful doctors here, and my Uro manages my pain medications. I have heard that laws in West Virginia being what they are, most of the doctors there refuse to treat IC patients with narcotic pain medication. Do you know anything about this? I mean, it would be wonderful if in a year's time I am off that medication, but as my symptoms appear to be progressing, that doesn't seem likely. It terrifies me to think that I wouldn't be able to get the care I needed with that, because I don't think I would be alive right now if I had not found a compassionate doctor who was willing to treat my pain. That is awesome that you are forming a support group. I really wish we were going to be living closer to Morgantown, because that is where you are located, right? I would love to get involved with something like that. Anyway, if you have any answers to my numerous questions, I would love to hear from you. Thank you, and thanks for thinking of others and starting a group that is so necessary and helpful. Take care...

    Cristina hi
    "It's not brave if you're not scared..."

    Comment

    • #3
      Cristina,

      First of all thanks for responding. Please know that I am not a doctor and am not able to give you medical advise. I can tell you my opinions and how things have gone for me. Please remember that IC is very individual. What works for one IC patient may not work for another.

      I do see Dr. Z. I think that he is a great doctor. He has helped me a lot. He is very compassionate. You are right in that his office is about 4 hours away from Huntington. Dr. Z does what he can to help my pain. I have taken some narcotics.

      I do live close to Morgantown. That is probably where most of our support group meetings will be held. You are welcome to come anytime, as soom as we get things going.

      I hope you feel better soon, and I hope I was able to help answer your questions.
      Louise
      West Virginia Interstitial Cystitis/Prostatitis Support Group Leader
      [email protected]

      Comment

      • #4
        Louise - did you get my PM about this a few days ago?
        Kim

        Diagnosed August 2001

        Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

        Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

        I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

        *****************************

        “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

        “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

        Comment

        • #5
          Kim - I got your PM and I just sent you an email.
          Louise
          West Virginia Interstitial Cystitis/Prostatitis Support Group Leader
          [email protected]

          Comment

          • #6
            Dear Louise, I saw Dr. Zaslau last week. He gave me a flyer for your support group. Count me in.
            Char in Harrison County

            Comment

            • #7
              Ooh, if there's a flyer is there any way you could e-mail me one? I would love to make one available to my uro's practice.
              Kim

              Diagnosed August 2001

              Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

              Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

              I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

              *****************************

              “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

              “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

              Comment

              • #8
                Hi,

                Just wanted to let everybody know that I am tentatively planning to have our first support group meeting on Saturday, April 26. I still need to talk to Dr. Zaslau about this. I have an appointment with him next Wednesday.

                I am not sure what Dr. Z handed out but I will get a copy and will email it to anyone who wants it.

                I will keep you posted. Please let me know if April 26 is a major problem. The meeting would be in Morgantown around 4 or 5 pm.
                hi
                Louise
                West Virginia Interstitial Cystitis/Prostatitis Support Group Leader
                [email protected]

                Comment

                • #9
                  Louise

                  I would be happy to bring any refresments, paper products,drinks, ets.... Just let me know, I will be there early that day for the Childrens Miracle Network events for my daughter at the stadium. email or call 304-637-3818

                  Comment

                  • #10
                    I AM LOOKING FORWARD TO ARE FIRST SUPPORT GROUP MEETING IN MORGANTOWN. I HOPE WE HAVE GOOD ATTENDENCE FOR IT. IF ANYBODY LIVES IN THE WHEELING AREA WE WANT A RIDE TO IT YOU CAN E-MAIL ME AT [email protected] I WILL BE WILLING TO PICK YOU UP AND GO WITH ME. DEBORAH

                    Comment

                    • #11
                      I live in Boone County which is on the other side of Charleston, WV. I think it is about 3 1/2 hours away from Morgantown. I sure wish I lived closer but I would like to receive information about your support group. My e mail is:
                      [email protected]

                      thanks
                      Pam

                      Comment

                      • #12
                        I would love to be a part of your WV Group. Unfortunately, I live in Pocahontas County and about a 3 1/2 hour drive to Morgantown so I will not be able to attend the meeting. I would like to have copies of your discussions, etc. if you could provide them to me. My email address is: [email protected] Thank you. Susan

                        Comment

                        Previous template Next
                        Working...
                        X