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Phsycially, emotionally, and finacially drained

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  • Phsycially, emotionally, and finacially drained

    I am physically, emotionally, and finacially drained from this disease. I am tired of feeling pain, having the urge to pee, or even running the bathroom throughout the day. I am tired of not being able to work due to these symtpons. I miss the interactions I would have with my co-workers on a daily baisis. I feel lonely at times being home all by myself during the day.I sometimes find myself crying wanting my old life back, the life I had prior to IC. I am tired of paying co-pays each week,paying for prescriptions, treatments, and hosptial visits. I am fortuanate enough to get a little assiastance from my former job, however it barely covers my medical expensives. I am tired of this disease in general. I wish it would just go away!

  • #2
    Hi, Jerzeygirl ~ Oh, how many of us identify with you. I was already "retired" when my IC hit so I don't experience missing the work companionships but the rest is familiar. My hubby and I were "savers" during our working years and now it's time to spend it, but certainly not as we planned.....the medical bills sure add up.

    I absolutely remember saying the same as you about wanting my old life back. I wanted to feel well once again. I wanted to go places without knowing ahead where all the bathrooms were so every 5 minutes I could "go". I wanted to go places with my friends but always had to ask them to understand when I needed to stay close to a bathroom. I still have my times (in fact just these last few weeks I've been in a flare most likely due to my own denial about this miserable disease) but I NOW KNOW I CAN GET THINGS UNDER CONTROL. I understand there are many who aren't as fortunate and battle daily, monthly, yearly but with treatment I have been able to make life more livable once again.

    Are you using the IC Diet? Do you have relief with any of your doc's treatments? I really found the diet helps, particularly if we're diet sensitive.

    I'm glad you are able to vent here and find some comfort that others share your frustration with compassion. Please don't ever give up, we need to keep up the hope that some day they will find better solutions to our problems.

    Blessings and let us know how you're doing.
    Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

    11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
    8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
    8/2010 Surg gallbladder
    TREATMENTS (updated 4/15)
    IC Diet since 8/2009 (Able to vary 4/15)
    Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
    Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
    Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
    *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
    Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
    PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

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    • #3
      Hugs!! Yes it can be sooo hard It is something I am trying to get used to.. and it takes time..
      -Pammylynn Rose
      Wishing everyone a pain free bladder day!


      Painful symptoms start in May 2011
      Diagnosed with IC in Aug 2011

      MEDICATIONS
      Elmiron
      Axert (only for rare migraines)
      Strict IC diet
      Gluten/dairy/egg free diet


      Comment


      • #4
        Tired of it.

        I know how you feel. I was already disabled d/t several
        DX.'s mostly back pain for about 20 years, first HNP in 1990 in neck. I've been on so many pain pills and other meds for depression and anxiety. I believed they were the cause of me devleoping IC. So I've been trying to get off as many as possible. I was off premarin for at least 2 months and at times , that is some days were alittle better. But the hot flashes came back very badly. So I asked my Dr. for a patch of estridiol (estrogen) and after1 week ,my hot flashes have gone away but my IC is worse. Is this just a coincidence? Usually pee every hour but at night I can go 1 and 1/2 hrs. and have to self-cath at least twice a night, sometimes more. So I'm going back to the Uro. Dr. next week. I'm really good with the IC diet,so I don't think it's any thing I've eaten. I hate sleep depravation.
        blessings for you,
        Lizzie_71:

        Comment


        • #5


          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.

          Patient Help: http://www.ic-network.com/patientlinks.html

          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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