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  • Athens, GA

    Hi,
    My name is Ashley. I am in Athens, GA. I just learned on Thursday through a potassium sensitivity test that I have IC. I was wondering if there was a support group near me. I'm a Christian and would love a support group where we could pray together, learn from each other and comfort each other during hard times. I have mixed feelings about having IC and love to meet some other people with IC.

    Ashley
    Ashley - wife of Michael for about 15yrs, mom of 3, stay at home mom and homeschooling mom

    Learned I had IC through a potassium sensitivity test on - 3/1/07

    My meds -

    Elmiron 2 times a day
    Marshmallow Root pills once a day
    Prosed
    Zyrtec - once a day

  • #2
    Welcome!

    Sorry you've had to become part of this group (as in knowing you have I.C.), but it is my lifeline! It's a place I come to everyday where people understand how you feel, can give advice from their experiences and just spend time pouring out their hearts to each other. I live in Lawenceville. We just started a support group in January and have a meeting each month. The next is scheduled for March 20th at 5:30. I'll give you the exact address so you can go to Mapquest to get exact directions. The doctor and nurse at Women's Progressive Healthcare are so wonderful. If I hadn't found them, I don't know what I would have done. The office is in Lawrenceville, located next to Gwinnett Medical Center. I was being treated by a Urologist prior to going to this doctor and was so glad he referred me to her. She really cares so much about her I.C. patients and is constantly going to seminars, studies, etc.. to help us. I'll go ahead and give you the address before I forget (it is also listed on the main page of this site under "Find a support group in your state". The address and other info is as follows:575 Professional Drive, Suite 580, Lawrenceville, GA. The nurse who organizes the group is Dana Bell (she is wonderful -she does my bi-weekly instillations and says she has dedicated her life to helping I.C. sufferers). Her phone number is 770-339-4000, ext. 116. If you can't get her voice mail, just call the main number again and ask to speak to Dana (sometimes the phones are messed up for some reason). Her email address is [email protected]. You will be coming to a great meeting, because someone is treating us all to a 'Spa Night' where we can get hand massages, try relaxation products, etc.. I hope you can come! Let me know if you need any more info. You can also PM me anytime. Take care.

    Danita
    Dani


    -Bladder surgery to correct reflux-'68
    -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
    -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
    -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
    -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
    PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
    -DX'd with IBS in 2000
    -Rhabdomyolysis in 2001 (has not returned)
    -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
    -DX'd with TMJ in 2000-wear splint
    -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
    -DX'd with Epilepsy -2000
    -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
    -DX'd with Fibromyalgia (2006)

    Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

    Comment


    • #3
      I am in chattanooga,Tn. I think i am about 3-4hrs from you. If you need any help with anything just let me know. Feel free to PM me at anytime.

      Comment


      • #4
        Hi, I live in Spring City, Tn and I to am a Christian and would love nothing more to have someone to pray for and have them to pray for me that is going through the same thing I am. I just found out a month ago (Feb.2) that I had IC and have been really praying about it and my Church is great about praying for me. Let me know if I may pray for you? Also this has been a great forum for me it has answered a lot of questions and made me feel a lot better about my condition.Bamafan

        Comment


        • #5
          Roll Tide!...

          Assuming by your username, you are a Tide fan and/or are originally from Alabama. I was born and bred in Tuscaloosa. I graduated from the U of A in 1987 and moved when I got married in '88. My family and friends were and still are Bama Fan(atics!). My parents, grandmother and younger brother live in Tuscaloosa, so we visit every couple of months. I hope the fans are pleased with the new coach who replaced Shula. I can remember (after the Bear Bryant era) when fans would harass and TP any coach who wasn't doing a good job with the team. I think Bama fans are some of the most dedicated you can find! Anyway, yes, prayer is essential in getting through each day with I.C.. Some days, I think I just dread the next day, thinking "How can I keep on keeping on?" and I'll wake up just knowing someone (my Mom and Dad, etc.) have been praying for me, because I feel like God is giving me a boost of energy and a push to get through the day. Two of my neighbors and I are going to start a bible study group soon on Beth Moore's "Get Out of That Pit". This disease and the related conditions that often come with it can make you feel like you've been stuck in a pit that you can't crawl out of. I just keep reminding myself that I have to "Let go and let God". It's in our weakest times that he shows us his strength and love. Anyway, I wanted to know what type of treatment you are having for your I.C.? The first type of bladder instillations my former Urologist tried on me were awful (DMSO'S), but at the place I go to now, the mixture is Lidocaine, Heparin, Sodium Bicarbonate (Baking Soda) and Distilled Water. This mixture is great...its' like pouring water on a fire. I also do home instillations for those unexpected flares, especially on the weekend. I take Elmiron, Cysta-Q, and pain medications (through a pain managment center) because the pain of the I.C. and Fibromyalgia cannot be eased with just Ibuprofen. I was saying on another post that I wish someone would find a safe, easy way to numb the whole bladder and urethra (like Novacaine at the dentist's office). I would not mind in the least having to wear a diaper, if the pain was gone. Maybe there are just too many nerves involved for it to work. I can dream, though! Please PM me anytime. I am on this site just about everyday, usually a couple of times per day.

          God Bless you,

          Danita

          Originally posted by bamafan
          Hi, I live in Spring City, Tn and I to am a Christian and would love nothing more to have someone to pray for and have them to pray for me that is going through the same thing I am. I just found out a month ago (Feb.2) that I had IC and have been really praying about it and my Church is great about praying for me. Let me know if I may pray for you? Also this has been a great forum for me it has answered a lot of questions and made me feel a lot better about my condition.Bamafan
          Dani


          -Bladder surgery to correct reflux-'68
          -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
          -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
          -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
          -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
          PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
          -DX'd with IBS in 2000
          -Rhabdomyolysis in 2001 (has not returned)
          -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
          -DX'd with TMJ in 2000-wear splint
          -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
          -DX'd with Epilepsy -2000
          -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
          -DX'd with Fibromyalgia (2006)

          Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

          Comment


          • #6
            Hi ladies from the SouthEast,
            I am so glad to have found friends to talk with, share with, and most of all pray with. "Where two or more are gathered in His name" Amen!
            I am a born and breed UGA fan but I can still pray for you Bama --- you know I am kidding with you. I will pray for anyone. Christ brings us together for so many reasons.
            This board has been a relief to me as well.
            The long and short of my "story" born without ureters and misshapen and misplaced bladder, uterus, and kidneys. Long life of UTIs. Teenage onset endo with many surgeries. One miracle baby girl now 9 years old. Six docs said there was no way I would get pregnant and carry to term... God and I proved them all wrong Amen!
            Partial hysterectomy in 1999 completed in 2005.
            Long time suffering from pelvic pain, stomach pain, stomach problems, back pain, and joint pain.
            Diagnosed with non-ankylosing spondylititis arthritis in 2004 and in the past year I have been diagnosed with IC and fibromyalgia with my docs (great ones now) saying that I have suffered from both for a long time just not diagnosed.
            I had the trial interstim which provided some relief and I will get the permanent one put in on the 21st.
            I am going to my first visit to a pain management clinic on the 13th... would love any advice about it? I am a bit nervous. I have had so many docs tell me to just lose weight, get over my fatigue and depression, and get on with life. I cannot take another person telling me to just get over it!
            I am blessed to be a Christian and I know God is working in my life. I am medical leave right now. I have a very understanding boss... my principal I teach 2nd grade.
            I am blessed to have a God serving family and husband and daughter. I know that God has a plan for my life. I do not blame him for my health but pray for relief and for my suffering to somehow guide me in a way to helping others.
            God Bless and please contact me.
            [email protected]
            or here.
            Georgia L
            Faith is not believing God can; Faith is believing God will!

            Comment


            • #7
              Hey,sorry its been awhile,but have been working and not feeling very good. I have been having problems with my meds Elmiron and b/c. I am doing the RISMO treatments every other week for now with 3 left I may have seen some improvement but not much. I have stopped taking my
              Elmiron and me b/c for now. I hope to get started back before long. I hope that you all are doing better. Do any of you get tired of eating the diet for ICer's? I am tired of it and I have only been doing it for about 4 or 5 weeks. Bamafan

              Comment

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