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Going back to work Thurs- the day after first instill- scared!

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  • Going back to work Thurs- the day after first instill- scared!

    Greetings from Madrid everyone!

    I have been out from work for over a month now due to IC, and although I have been corresponding with my "coordinator" and the teachers I work with (i'm an English language assistant), I haven't received much information regarding the policy for missing so much work. THEN suddenly yesterday, I received an email from the program boss for all of Madrid telling me I had two days to "find a solution" or I would be considered "resigned" from my position. I responded that I would be receiving my first instillation treatment Wednesday and that I could come back to work Thursday. Crazy, I know, because I think I'll probably be in more pain from the catheter by THursday. Additionally, I was informed that if I go back to work, I will be receiving a dock in pay this month due to my absence and also be required to work extra days to make up the time that I have missed. I feel like they are punishing me for having this disease.
    But more than anything, I am terrified of the attention I will get from my coworkers when I return. THis is not an easy disease to explain to people (especially in a second-language, Spanish!), and I am afraid many will be angry at me for taking so much time off, and when they see me looking more-or-less the same, i.e. normal, they'll feel like I've been making it up or something. They'll all be asking me if I'm "better" when the truth is I'm not- I'm just managing this disease. I'm doing considerably better than when this hit me on February 19th and I thought I had the worst UTI in the history of the universe, but I'm still peeing 2x an hour and having pain, in addition to grogginess, dry mouth, constipation, headache and stomach upset from the amitryptiline and Elmiron I take. Not to mention, I'm worried my first instilliation will exacerbate my symptoms for a day or two afterwards. I am just so scared about going back to work. I'm afraid it will exhaust me, and my symptoms will make working difficult- I teach 6 year olds.
    But back to the point of this post-sorry, I digressed- I am wondering if anyone has any strategies of how to explain themselves/deal with coworkers after a long absence due to IC??? I don't want to have to go into detail about my health (in Spanish!) with these people I'm not even close with, but I also don't want to have to lie and say "everything is better now" since I'm still very affected by pain and frequency. But I can't act too sick because then they'll replace me, though if I act too healthy they'll think I've been making this up!
    I want to just quit because I also have to spend 3.5 hours commuting each day, with very limited access to toilets during the commute. But then I'll definitely lose my health insurance here and I have none in the US. It's such a tricky situation, i'm trying so hard to fight the urge to just crawl back into to bed and sob. But seriously, what i'm most afraid of now is trying to deal with the questions/insinuations my coworkers will be bombarding me with when I go back...
    IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
    Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
    Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

    Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
    Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
    Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
    Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

  • #2
    I would say...

    Explain to them that what you are suffering from is like having a bladder infection but it is cronic and there is no cure. Tell them that you are in constant pain and you need to find ways to manage it. Most people can realte to the pain of a bladder infection so maybe that will help them understand. I'm sorry you are in such a bad situation with insurance. I am in a similar one.

    Comment


    • #3
      Whether you're able to work the day following an instillation can depend on what's in the solution being instilled. If it's DMSO, you may be in quite a bit of pain. When I was on DMSO I arranged for the instillation to be the last appointment on a Friday so I had the weekend for it to calm down. Other solutions weren't a problem --- I worked at a hospital across the street from my urologist's office and would go for the instillation during a break and go right back to work with no problem.

      I hope you feel better very soon.

      Warm hugs,
      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

      Comment


      • #4
        THanks Christine! That might be an easy two-sentence way of describing it that will relate the severity of the pain easily. You know what's funny and random though? People thought I was missing work for so long for a bladder infection because the spanish word for bladder infection is "cistitis." "Cistitis intersticial" is how you say IC in SPanish, but since I don't think people know what "intersticial" is, they just were assuming I had a regular UTI. argh! Sorry you're having insurance issues- what are yours? It's very difficult for me because essentially, if it weren't for the insurance thing, I would have flown back to California weeks ago. I've chosen to stay here and 'tough it out' in the hopes that I'll get better and be able to enjoy what was supposed to be a year of cultural exploration and travel. I'm praying my job will be nice to me (they want me to work overtime and take a pay cut?!?!). But this whole thing would have a been MILLION times less painful and awful if I'd been home, with family and friends and English speaking doctors, and a car! I'm going to be really upset if they fire me and I lose my insurance here, because the insurance-backed instillations are the main reason I'm staying...
        IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
        Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
        Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

        Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
        Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
        Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
        Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

        Comment


        • #5
          Can you get a letter explaining your situation to the administration? I know they aren't the people you work with daily but it seems the priority right now is to keep your job. It is really hard to know what another country's laws about these things are. They might have something that will protect your job.

          I just say I have an incurable, extremely painful bladder disease. When I first got sick I was amazed at the amount of people that have never had a bladder infection! I haven't had many but if you have ever had one, you know what it is like!

          A three hour commute, my word! I know that must be hard. I think that if you go and they see what you are dealing with maybe then they will understand. Unfortunately, you are in a different country and probably not very aware of how they handle things like this. Have you tried to ask anyone on the board from Spain that someone posted for you to see? Maybe someone there could tell you how these things are handled there. I would make sure that docking your pay and making your work ot is legal. There are employers everywhere that will push you as far as they can. No matter where you are, you have to be vigilant about these things. I had problems with my boss and she was the HR manager and I was her assistant!! So, I knew the laws but the limit was pushed in spite of that!

          I am still thinking about you and your situation, I wish you the very best. Whatever happens, just know that it is for the best. So, if you end up back home do whatever you need to do to get care, or if you stay just keep on working to get better.

          Sandra
          Link to the patient information, everything from What is IC? to Disability
          http://www.ic-network.com/patientlinks.html

          American Urological Association Clinical Guideline
          Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
          http://www.auanet.org/content/guidel...ent_ic-bps.pdf

          Comment


          • #6
            When I was studying in Spain in Summer 2008, I had the worst UTI and flare up of the IC that I've ever had. I explained it to the language school as "Cistitis intersticial - se siente como una infección de la vejiga, pero no es infección y no se cura con antibióticos. Hay tratamientos y voy a mejorarme, pero voy a necesitar un poco de tiempo." Probably not perfect Castilian, but it got the message across. I do feel for you though, I was fortunate to be a student, not the teacher, in that situation. Here in the US, at least I have the Americans with Disabilities Act to somewhat protect me from formal work problems due to the IC.

            Donna is right, if you're having a rescue instillation (elmiron or heparin/marcaine or lidocaine/sodium bicarbonate), you may be feeling great the next day. If you're having a DMSO instillation, they can provoke a flare before you start feeling better. I also used to schedule mine on Friday afternoons & plan a weekend of videos in my pj's. One thing about DMSO instillations though is that the first two treatments tend to be the most painful as they are provoking the bladder cells to release toxic contents like histamines. Once you've drained the cells with routine DMSO instillations, the treatments get easier.
            (Though I still always did them on Fridays because as a teacher, I can't run to the bathroom whenever I want.).

            Wishing you better days very very soon, I know this is hard.
            Kadi

            -------------------------------------------------------------
            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.
            ------------------------------------------------------


            New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
            Source - Pinterest
            "


            Current treatments:
            -IC diet
            -Elavil 50mg at night
            -Continuous use birth control pills (4-5 periods/year)
            -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
            -Pyridium if needed,
            -Pain medicine at bedtime daily, as needed during the day several times per week
            -Antibiotic when doing an instillation to prevent UTI
            -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
            -Dye Free Benadryl 50 mg at bedtime
            -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
            -Managing stress= VERY important!
            -Fur therapy: Hugging the cat!

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