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  • #1

    Having a Blast

    Hi Everyone,
    Leslie (Dancemomof2) called me from the ship. She said she was in margritaville, laying on deck by the pool in 90 degree weather.. I could her the excitement and fun in her voice.. I know she will have the time of her life on this cruise.
    'The will of God will never take you where the Grace of God will not protect you.'
    Tags: None
  • #2
    That's great to hear that Leslie is having such a great time. Boy am I jealous with all of the snow we have here. Thanks for letting us know Cindy.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

    Comment

    • #3
      Oh, it sounds so wonderful... I hope she has the absolute best time!!!
      ****
      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
        Oh what fun!!! I am so GREEN with envy!
        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

        • #5
          good day to be green
          'The will of God will never take you where the Grace of God will not protect you.'

          Comment

          • #6
            Thanks for the update... She really needed this vacation
            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

            • #7
              Yeppers she really did
              'The will of God will never take you where the Grace of God will not protect you.'

              Comment

              • #8
                Yep, they were really excited when I dropped them off at the ship. We got to spend a few days together(I am watching their van)and that was awesome.

                Happy Birthday too, Cindy!

                Hugs,
                Barb
                (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

                [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
                :angel: IC Angel Volunteer Coordinator :angel:
                :) Contact me via PM or e-mail if you would like to help
                I have learned all about life in 3 words: It goes on! :D--Robert Frost
                PCOS 7/85
                RSD 7/94 :headbang:
                Endometriosis 9/98 :toilet:
                Antiphospholipid antibody syndrome 9/99
                Kidney stones--too many to count
                Factor V Leiden mutation 10/02
                IC 6/03 :evilsmile
                Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
                "Spirit is an invisible force made visible in all of life"--Maya Angelou
                "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

                Comment

                • #9
                  :woohoo: :woohoo: :woohoo: So excited for her!
                  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

                  • #10
                    Can you believe all of this snow we got on Friday? I live over here by Gettysburg, and according to the yard stick I used to go out in the middle of the yard and measure the snow, it was about 8 inches. How much snow did you all get in Lancaster?
                    Kim

                    Comment

                    • #11
                      don't forget to feed and water the van Barb..
                      when she called I could hear all the loud music, and people talking, it was like she was calling from a concert or a bar.
                      thanks for the b-day wishes
                      'The will of God will never take you where the Grace of God will not protect you.'

                      Comment

                      • #12
                        I'm not sure how much we got, my MIL said 10 inches is what she heard on tv but that seems a bit too much. We were supposed to get 6 so I'm guessing 6-8 inches
                        Christine



                        I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                        1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                        2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                        I have tried every oral medication as well as rescue instills and DMSO.

                        I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                        Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                        Also proud mom to the best Bullmastiff on earth, Claus

                        Comment

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