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18-month estimate true for me!

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  • 18-month estimate true for me!

    I went from a very strict IC diet and a lot of pain and weakness to a mostly normal life, except for diet, in just about eighteen months.

    I didn't want to jinx it, or I'd have posted sooner. There's so much to tell...

    It was sort of easy for me to start the IC diet in that I love to cook and experiment (and my husband was willing to cook and eat what I could have), but difficult in that I live in the boonies, with the nearest Trader Joe's or whatever a couple of hours drive away. Oh, hey! I can go for long rides, again!

    It took a while to learn what activities would make me hurt later... the worst was standing for long periods.

    Once I started feeling better, maybe a year, I was able to experiment with trigger foods. Now that my bladder has had a chance to heal, it's pretty much down to capceisin and black pepper (which I do miss). I can even have some hard liquor if I stay very hydrated, but no peppers except for sweet bells.

    Hydration! A MAJOR trigger for me is tap water. We got around the expense and environmental impact of using bottled water with a simple faucet-mounted filter. I can tell it's time to change the filter when it burns to pee (usually my earliest indicator now). I don't understand how such a simple thing could change things so much, but it is my truth.

    An interesting inter-cultural note: We are moving to the Caribbean coast of Costa Rica in a few weeks. (I think the big change is what made me decide it's time to share my symptom-free story.) Anyway, I was telling some girlfriends in their restaurant in CR that my bladder couldn't heal when spicy food hurt it, so no more Jerk Chicken for me. "Oh, that!," they both exclaimed. It was as if IC was common knowledge among the women there. They said no more pepper except maybe twice a year, and eat plenty of baby pumpkin. The next time we dined there a few days later, they trucked out a nice side-plate of steamed green pumpkin for me.

    I knew for sure that stress wasn't going to flare me any more last winter when: [A] We lost our store (and all our savings), and [B] lost my husband's 92-year-old father (Christmas Eve. I kid you not.), for whom we'd been the primary caregivers for over ten years. We feel privileged to have been by him when he left. When [C] the other heirs to Grandad's estate declared war on us a few months later, we even started smoking again! (Have since quit again) My IBS and accompanying pancreas trouble flared, but not my bladder.

    After losing Grandad, I decided I needed a puppy, so we adopted a pointer mix who is personally responsible for getting us through the estate war. Keeping up with a medium-sized puppy with major energy made me realize that IC had made me slouch my posture! I had spent a year and a half walking with my abdomen hanging out to ease pressure on my bladder. No wonder my back was unhappy and I was so flabby! I could finally tilt my pelvis back up without pain, so I did... and started taking long strides again! For a year and a half, I had been sashaying along to avoid jarring my bladder. Just standing up straight and walking normally with our puppy have toned me up to where I'm really happy with my figure again.

    I was getting some exercise when I was still flaring. Mostly swimming and kayaking. These are low-impact and great for the waistline.

    There are still a few foods I haven't experimented with. I haven't had an occasion to try pineapple in quantity. I haven't bothered going back to diet sodas, though I can drink the sugared ones without a problem now (started with a little root beer on lots of ice). I still steer clear of MSG, artificial flavors, and processed foods like frozen entrees, but I never missed them. But I've occasionally gorged myself on boxed mac and cheese without ill effect, and that stuff is full of additives. Coffee doesn't bother me (started with iced, lots of ice and milk) as much as black tea does.

    I missed Mayonnaise so much until I tried it again! Ha! After finding so many tasty alternatives on these boards, getting back to the real thing was anti-climactic.

    I still drink a lot of Pero. It seems to lower my acidity and is a good place to put a spoonful of soluble fiber.

    I guess I'll add other thoughts later. I wanted to get this posted before my life became a whirlwind of international relocation, because I really want to share my hope. Though my diagnosis wasn't major IC, it wasn't minor, either. My pain was very real, and my life was very changed.

    Now, I've stopped bothering to explain why I don't try the yummy salsa. I just don't eat it, and any awkwardness passes almost immediately. This is from a compulsive people-pleaser who used to think the world would end if I were misunderstood. But it was a good thing I told those Caribbean ladies when I was still learning!

    I also don't take for granted that, though it was often rocky, my marriage is a lucky one and my husband well-chosen.

    I learned what I needed to know to get the IC under control right here on these pages. IC Network Forum. Thank you to the ladies and men who listened, who got me on the right track back to a life where I don't even think about IC (except to feel concern for other sufferers), where my bladder-healthy habits have become second nature, and I have learned there's strength in us that can get us through.
    *
    Karin
    *
    I am not a doctor. If I seem to be giving medical advice, please do disregard it. Or I shall be forced to shoot.
    *
    *
    Diagnosed with glomerulations, IC May 8, 2009
    Currently in remission
    Other Medications: Vitamin D3, pristiq, abilify, wellbutrin, Lipitor, propranolol (for tremor)
    Other Autoimmune: IBS

  • #2
    It's so great to hear from you. I'm happy that you're doing well --- and your sharing will help all of us to gain hope.


    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, 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.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

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    • #3
      Well congratulations! How wonderful for you.

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      • #4
        I really enjoyed this post. So glad you are doing well and good luck on your move! Sounds exciting!
        Frances

        Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

        Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

        Other conditions: Migraines, allergies, mild IBS.


        "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

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        • #5
          It is always nice to hear that somebody with IC is doing well !
          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
          Symptoms since 2005
          Diagnosed with IC october 2009 via PST

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          • #6
            Hurrah! That is good news!

            And congratulations on the move to CR. I went there last April--in tons of discomfort, but I was determined to go--absolutely beautiful.
            March 2011-Symptoms began
            May 2011-Tentative diagnosis by OB/GYN
            October 2011-Confirmed diagnosis -- IC/PFD

            Current treatments:
            Elmiron- 300 mg (Began 12/11)
            Hydroxyzine- 50-75 mg (Began 7/11)
            Tizabidine- 2mg 3xTID, if needed (Began 12/11)
            IC Diet-Began 5/11
            Pelvic Floor Therapy-Began 12/11

            Current Supplements:
            Cystoprotek
            Magnesium
            Fish Oil
            Biotin

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            • #7
              It's nice to see your icons again, Donna and Briza!

              Thanks so much, everyone, for the good wishes!
              *
              Karin
              *
              I am not a doctor. If I seem to be giving medical advice, please do disregard it. Or I shall be forced to shoot.
              *
              *
              Diagnosed with glomerulations, IC May 8, 2009
              Currently in remission
              Other Medications: Vitamin D3, pristiq, abilify, wellbutrin, Lipitor, propranolol (for tremor)
              Other Autoimmune: IBS

              Comment

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