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  • Thankful For Jill

    Just wanted to say how thankful I am for Jill and her dedication to this network. It is amazing to me how one person's kindess and determination has touched so many of our lives. I can't imagine how any of us would feel dealing with this disease on our own.

    Jill is a true angel and I thank God for her every day.
    Miss Bessie

    Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

    Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

    Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

  • #2
    I agree octoberfarm. There is so much info and support on these boards and that leads us to feeling so empowered to fight the fight. Without Jill this just would not be the case.

    Comment


    • #3
      I agree wholeheartedly
      ****
      Jen

      *Diagnosed with severe IC in 2004
      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

      **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Comment


      • #4
        Very true! I had IC for 4 years before I got a laptop and learned how to get online, and found the ICN. In that 4 yrs, no one ever told me about the IC diet. That alone is HUGE! Not to mention that I felt like I was some lone freak. Everytime I went to the Dr, they looked at me like I was crazy. Then, I found you guys and found out I really wasnt the only one going thru this stuff! What a relief! I am so thankful too that she had the idea to create a Global community where we could talk to others like us.

        Comment


        • #5
          Oh yes, if it wasn't for this site, I'd have been totally alone dealing with it. Here I learned to have hope, find inspiration and make some fabulous friends!
          A million THANKS!!!!
          Hugs,
          Tracey
          How do you eat an elephant? One bite at a time...

          Harry arrived 2/23/09!



          *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

          IC Diet Cheat Sheet:
          http://www.ic-network.com/diet/2009icdietlist.pdf



          Dx's:
          IC dx'd Nov 2004
          Lymphocytic Colitis dx'd July 2005
          Possible IBS
          Current IC Meds
          Vistaril 25mg in the evening
          Previous IC Meds taken:
          Cystoprotek - 2 caps 2x's a day
          Elmiron, 100mg 3x's a day
          Ditropan, 5 mg 3x's a day
          Others:
          Wellbutrin 150mg 2x's a day for Anxiety/IBS
          Pepcid 40mg a day for GERD
          Zytrec for Nasal Allergies
          Align Probiotic daily for IBS

          Comment


          • #6
            i will 2nd that notion.i feel so much better after being on this site.i no longer feel like a freak,and i finally have some wonderful people i can talk to ,that know exactly what i'm going through.thank you so much jill.

            Comment


            • #7
              I agree totally! Bless her for putting this together for us IC'ers!

              Comment


              • #8
                Amen!!!
                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


                • #9
                  Thank you Jill! Before I joined this site, I didn't know about the diet or anything. At that time I think I had IC for about 10 years, but I pretty much knew of course, if I ate something, if it bothered me. Between this site and one of my doctors I learned about the diet. So again, thank you Jill and everyone.

                  Comment


                  • #10
                    Jill, I don't even know where to start. Just what you post the other day on Kara's forum was an encourgement. I think this is a place where we can talk and find help and support, and people understands about the up's and down's of IC.

                    Only a person who have been through it and still is can make this happen. If this site wasn't here we all probably thought maybe we are crazy and couldn't figure out why no one believe us that our body is telling us something is major wrong.

                    You got all these people joining together, medical doctors, physicans, and etc, involved to help find a way to make things better. I have learned so much here about IC, you do get educated about IC being on this site.

                    I know this must have took alot of work to make this happen and you did it. And I just want to say THANK YOU TOO.

                    Trishann

                    Comment


                    • #11
                      Trishann, you always write the sweetest, most supportive posts. I think of you as having a very big heart.

                      Oh, and by the way, thanks from me too, Jill.
                      Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                      Wishing you happiness and good health, and all the best out of life.

                      Peace, Carolyn
                      ___________________________________________________

                      Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                      On the Beach with IC

                      Comment


                      • #12
                        Thank You

                        Dear Jill,

                        There is a place that I go to where I don't have too far to travel. No reservations are required and the roads are not icy on the way there. No stops signs, red lights or dead ends. Just green all the way. When I get there I can be myself. I can laugh, cry, learn, and grow. This place helps me find the way. That place is here!

                        Thank You for Everything you've done!

                        Kara
                        Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                        "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                        I also have some journals of my journeys, past and some present at:
                        http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                        Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                        Comment


                        • #13
                          Without this site I would have been so lost..This site is where I have learned more about IC than from anyone or anyplace else. Its so nice to have a place to come to where we dont have to pretend or be judged, we can all be ourselves..Its a wonderful feeling just to be able to be myself

                          THANKS JILL!!!!
                          Hugs
                          Ronda

                          ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                          Link to Patient Handbook:
                          http://www.ic-network.com/handbook/

                          Diet Reference Sheet:
                          http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                          Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                          Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                          Meds I have Tried:
                          Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                          Lexapro< Bad reaction to this med!
                          Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                          Dx With IC in Nov 2006 with Hydro/Cysto
                          Hydro/Cysto Caused Bladder to Rupture.

                          Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                          ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                          Comment


                          • #14
                            You have the heart of a warrior, good luck!!

                            Comment


                            • #15
                              Deeply Grateful for Jill, site and the Forum

                              Oh my, I don't know what I'd do without this site! I am deeply grateful for the wealth of clear information found here, as well as the support. The store is also very helpful, as are the recipes!

                              Living on disability with only Medicare for health (lack of) care, this site's information and support are simply invaluable resources to me!

                              Thank you so much

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