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Invisible Illness Week at Rest Ministries

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  • Invisible Illness Week at Rest Ministries

    Hi all,
    Every year Rest Ministries organizes an Invisible Illness week with lots of guest speakers and events. This year, you can find it on facebook, under Invisible Illness Week. Rest Ministries is a lovely Christian organization focusing on support for people with all kinds of illnesses. They also have a really encouraging message you can sign up to receive each morning. I've found it to be very helpful.

    Each year they also give 30 questions to answer. I've done this for several years now & find my answers changing to be especially helpful as well.

    Here are the "30 Things about my Invisible Illness You May Not Know":
    If you'd like to participate with me, just copy the questions and delete my answers to put your own...

    1. The illness I live with is: Interstitial Cystitis
    2. I was diagnosed with it in the year: 2003
    3. But I had symptoms since: July 10, 2003, though I had other bladder symptoms before that
    4. The biggest adjustment I’ve had to make is: the loss of spontaneity in food, travel, weeknight & weekend activities
    5. Most people assume: that I'm fine because they can't see my pain or struggles
    6. The hardest part about mornings is: getting up to go to work after a sleepless night
    7. My favorite medical TV show is: None, I find them irritating
    8. A gadget I couldn’t live without is: my iPhone (this has nothing to do with IC, I just love it!)
    9. The hardest part about nights are: when I'm in pain, going to the bathroom all night & knowing I have to get up to go to work the next day
    10. Each day I take 6-7 pills & vitamins. (No comments, please)
    11. Regarding alternative treatments I: wish they worked for me, but they don't usually.
    12. If I had to choose between an invisible illness or visible I would choose: I don't know, there are plusses and minuses to either
    13. Regarding working and career: I am grateful for the workplace accommodations my doctor wrote for my teaching job (extra restroom breaks, no yard duty, end of the day preparation time, a classroom near a restroom)
    14. People would be surprised to know: I used to be thin and adventurous
    15. The hardest thing to accept about my new reality has been: feeling unreliable because I have to change plans so often
    16. Something I never thought I could do with my illness that I did was: travel, I still travel and value it even more than before
    17. The commercials about my illness: annoy me, especially when they're cutesy ads about bladder protection. Especially hated the one with Whoopie Goldberg, making fun of leaks. Not funny to me at all.
    18. Something I really miss doing since I was diagnosed is: eating whatever I'm offered & being able to enjoy & compliment foods at potlucks--especially foods guests are sharing from their cultures.
    19. It was really hard to have to give up: Coffee!
    20. A new hobby I have taken up since my diagnosis is: beaded jewelry making
    21. If I could have one day of feeling normal again I would: go hiking with a group of friends & enjoy a picnic with them
    22. My illness has taught me: to say thank you. I've been grateful to have had so much love & support in my life!
    23. Want to know a secret? One thing people say that gets under my skin is: "I have so much sick leave because I think it's important to come to work every day." Uh, I think it's important too, but sometimes I just am too sick to go to work.
    24. But I love it when people: let me pick the restaurant we can go to, so that I'll actually be able to eat!
    25. My favorite motto, scripture, quote that gets me through tough times is: "One day at a time"
    26. When someone is diagnosed I’d like to tell them: the hardest time is in the beginning, getting diagnosed and learning the diet. After that, it gets easier!
    27. Something that has surprised me about living with an illness is: how much I appreciate "ordinary" days now!
    28. The nicest thing someone did for me when I wasn’t feeling well was: when a taxi driver in Spain drove me across town to go to the one pharmacy open on Sundays, turned off the meter & told me he would wait for me to come out. I told him it was ok, the line was long, & he didn't have to wait. He smiled and said, "I want to help and I want you to have a good memory about Spanish people". Same week, I was in the emergency room in Spain, and the doctor tore up my bill at the end of the visit, saying that he was sorry I was sick so far from home & he wished he could help me more (my pain medicine was not available in Spain & I was having the flare-from-hell after having a UTI while on vacation.) I keep a gratitude journal and biggest thing I've learned from IC, is that there are many many kind people in the world who are happy to help others!
    29. I’m involved with Invisible Illness Week because: we understand each other better than people with "perfect" health do
    30. The fact that you read this list makes me feel: better understood & can't wait to read what others write
    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!

  • #2
    1. The illness I live with is: Interstitial Cystitis
    2. I was diagnosed with it in the year: 1975
    3. But I had symptoms since: 1975
    4. The biggest adjustment I’ve had to make is: the loss of spontaneity in food, travel, weeknight & weekend activities
    5. Most people assume: that I'm fine because they can't see my pain or struggles
    6. The hardest part about mornings is: getting up
    7. My favorite medical TV show is: None!!!
    8. A gadget I couldn’t live without is: My computer
    9. The hardest part about nights are: when I'm in pain, going to the bathroom all night
    10. Each day I take 6-7 pills & vitamins. I take 15! every day
    11. Regarding alternative treatments I: wish they worked for me, but they don't usually.
    12. If I had to choose between an invisible illness or visible I would choose: Visible
    13. Regarding working and career: I'm retired, but did work full time for 20 years with IC
    14. People would be surprised to know: I used to be thin and adventurous
    15. The hardest thing to accept about my new reality has been: Actually my reality isn't "new" any more.
    16. Something I never thought I could do with my illness that I did was: travel, I still travel and value it even more than before
    17. The commercials about my illness: annoy me, especially when they're cutesy ads about bladder protection.
    18. Something I really miss doing since I was diagnosed is: eating whatever I'm offered & being able to enjoy & compliment foods at potlucks--especially foods guests are sharing from their cultures.
    19. It was really hard to have to give up: Coffee!
    20. A new hobby I have taken up since my diagnosis is: Spinning (making yarn from animal fleece)
    21. If I could have one day of feeling normal again I would: Be afraid to move!
    22. My illness has taught me: to say thank you. I've been grateful to have had so much love & support in my life!
    23. Want to know a secret? One thing people say that gets under my skin is: At my job I had one supervisor who constantly praised perfect attendance; and I would have totally LOVED being able to have perfect attendance.
    24. But I love it when people: Volunteer information about what's in a dish being served.
    25. My favorite motto, scripture, quote that gets me through tough times is: "I can do this!"
    26. When someone is diagnosed I’d like to tell them: Most people with IC do feel good most of the time.
    27. Something that has surprised me about living with an illness is: how much I appreciate "ordinary" days now!
    28. The nicest thing someone did for me when I wasn’t feeling well was: My daughter, who sat beside me during months of chemotherapy so I wouldn't ever be alone.
    29. I’m involved with Invisible Illness Week because: I feel that if everyone knew about IC, there would be more money available for the research that will one day lead to an IC cure.
    30. The fact that you read this list makes me feel: better understood & can't wait to read what others write
    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


    • #3
      Re: Invisible Illness Week at Rest Ministries

      I did read your list. I have more to ponder. I wanted you to have something to read that wasn't cutsy. I wanted you to know that you are the second person I know that spins. Does heating pads work for you to reduce bladder pain?

      Comment


      • #4
        Re: Invisible Illness Week at Rest Ministries

        Originally posted by puffyclouds View Post
        I did read your list. I have more to ponder. I wanted you to have something to read that wasn't cutsy. I wanted you to know that you are the second person I know that spins. Does heating pads work for you to reduce bladder pain?
        There's a story behind my spinning. We watched people spinning at our county fair several years ago. My husband thought it looked like a challenge to build a working spinning wheel. So I printed out volumes on building the wheels and he started building them, which (of course) meant that we both had to learn to spin in order to know if they worked. Now he's built and sold over fifty and actually designed one that's a working wheel and only 17 inches tall. We call it the "Wee Spin" and it's popular in our area. When we go to our spinning group of about 15 people, there will be a dozen or more We Spin wheels.

        When I'm in pain, my heating pad is my best friend. I know I'm not supposed to sit on it, but I do.

        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


        • #5
          Re: Invisible Illness Week at Rest Ministries

          When my pain is at its worst, I lie with a heating pad on high under my butt and an ice pack (wrapped in a cloth) on my lower abdomen.
          My physical therapist told me to do this no more than 10 minutes, but when I'm in a horrid flare, it's the only way I can sleep. The heating pad does have an automatic shut off at 2 hours.
          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!

          Comment

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