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any suggestions, advice, or resources

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  • any suggestions, advice, or resources

    I currently and for the last 8 years have worked as a teacher. I have IC, Fibro, IBS, CFS, and possibly TMJ. Over the last couple of years I have had to cut back on my work responsibilities and positions. It was just too much for my body to handle. I currently only work 11 hours a week. This is still too much for me. My problem is multi-faceted. The first problem is health insurance. i finally got approved for something akin to state health insurance. It does not cover nearly what i need (meds, specialists, physical therapy). on top of not feeling good without the meds i am suffering from severe insomnia. i have not been able to sleep for more than 3 to 5 hours a night since before Thanksgiving. We know what effect that has. Next problem, I am broke. I don't have enough money for all that I need. I am currently living at home with family members and this is detrimental to my health physically and mentally. I cannot afford to move out. i am fearful that I will never be self sufficient. any suggestions or resources or steps I can take to better my situation? i have had these conditions for 13 years. i feel like it has stunted my growth.

  • #2
    Hi Cutie,
    I've worked as a teacher for 21 years, 9 of which have been with IC. It can be really hard sometimes, and it can be ok other times. I do have a medical letter on file with HR, under the Americans With Disabilities Act, making sure that I have a classroom near the teachers' restroom, my prep periods at the end of the day, and restroom breaks as needed (about once per hour). The breaks means I have two additional breaks beyond the usual recess/lunch breaks--a para comes to cover my class for the five minutes it takes to run, and I do not have yard duty, as we know I'll be spending at least half of recess in the bathroom which would create a supervision liability on the yard...

    I don't know if you've tried the diet or instillations. I also take about 9 oral meds for the IC, but the diet and the instillations are what's kept me working. None of my meds work if I'm not strictly on the diet. I do an instillation at home before work, so I can teach, and at night, so I can sleep. It's Marcaine, Sodium Bicarbonate, Heparin, put directly into the bladder via catheter (which is not bad when you do it yourself!). It's been a miracle and the main reason I'm not disabled. When I got IC, I was voiding 70x a day, completely unable to sleep, function at all. The instillations have given me my life back. I'm not in remission, I still have IC symptoms daily, but I can say that my IC is imperfectly controlled, if that makes sense.

    If you have a teacher's union, I would start by talking to a representative about your options and how the Americans with Disabilities Act can provide you the accommodations to stay working. Another option is to be a "teacher on special assignment" who might teach children who are in the hospital or at home ill, you would have more control of your schedule that way. Some schools also have teachers who are paid by grant funding to do more administrative stuff or reading specialists who set their own schedules for pull-out groups. Those might be better assignments for your IC.

    I have an article I wrote for teachers with IC, I probably need to update it because I've changed jobs a few times since then, and have learned new things. If you want it, let me know & I can send it to you.


    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!


    • #3
      Noticed that you have the state health insurance (Medicaid) and it doesn't cover hardly anything. I work for the state in Texas and I also had friends who were on Medicaid. We couldn't ever find doctors who take it (they were on the lists but as soon as it was published they were filled with their "quota" for the month. As to medication can you try and get the doctors to fill it for 3 months at a time? this way you can spread it out and have your medications.
      Like Kadi said diet plays a big part here, I am not as diet sensitve as most are, but I still have to watch what I eat. The meds that I am on for my IC are Elmiron (take 600mgs total a day) Elavil 25mg and neurotin (900mg total.

      I am not a teacher (and I really praise you all who are--you all are way under paid for the work that you do!
      Like I said I work for the state for over 25 years (total working 35 years) and with IC over 20 years- I do have notes from all of my doctors on file with HR even have on file a FMLA form (protects your job if you are out). I have been blessed for the most part with great doctors and wonderful supervisors.
      I am hoping to retire from the State at the end of the year...but I will still have to work somewhere.


      • #4
        Hi, I wish i could help.

        I qualify for disabled houseing but am unable to bring my daughter with me 'no kids allowed' in this small town disabled housing units. So I am stuck where I am at.

        Have you tried for SSDI? that is the only advice I have for you.

        I hope some one can help you : )