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  1. #1
    ICN Member
    Join Date
    May 2010
    Location
    NC
    Posts
    50

    How do I know how well I could be feeling?

    Hey all! I am trying to figure out how well I could be feeling. I've been careful with my diet. I notice doing too much can cause a flare as well.

    Do your food flares and "doing too much" flares differ in symptoms?

    Do you/did you have to go through a series of therapies in order to know if they help you? (trial and error)

    I live withing 2 hours of Dr. Evans (NC) and think I should go see him as my doctor because he seems to be the best. I don't know of a good doctor in the Raleigh/Cary area.

    I have watched my diet and have a hard time sitting still. Therefore my body hasn't been feeling great because of the latter. I am about to start teaching again and am scared to death that I will either have to quit or suffer each day. Thinking about it I picture myself climbing up this steep mountain.

    Any feedback would be great.

    Thanks,

    Melody

  2. #2
    Forum Manager ICNDonna's Avatar
    Join Date
    Mar 2000
    Location
    Oregon
    Posts
    32,902
    For me a flare feels about the same, whether it's from a trigger food or activity. I have heard many good things about Dr. Evans --- you might want to see him at least for an opinion on possible treatments you haven't tried.

    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

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

    Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf

    You'll find my story at: http://www.ic-network.com/patientstories/donna.html

    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.

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

  3. #3
    Support Leader kadi's Avatar
    Join Date
    Dec 2003
    Location
    California
    Posts
    8,281
    Hi Melody,
    Do your food flares and "doing too much" flares differ in symptoms? Not too much, no. Though food flares respond better to taking TUMS or baking soda in water (only do this if you have no problems with sodium or high blood pressure), than do stress or activity flares.

    Do you/did you have to go through a series of therapies in order to know if they help you? (trial and error) Yes, I did. But, that was mainly because I tend to have a lot of allergies & side effects from medicines, so my doctors & I decided to try only one treatment at a time so we'd know what I was / wasn't allergic to.

    I am also a teacher. I've taught 18 years total, the last 7 with IC. It can be done. I'll send you a letter I wrote for other teachers with IC, since it's too long to post here.

    Wishing you a good school year & relief soon,
    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.
    ------------------------------------------------------


    This week's favorite one-liner:
    "Just remember, if the world didn't suck, we'd all fall off. ~Author Unknown
    "


    New second favorite:
    Please, Lord, let me prove that winning the lottery won't spoil me.
    - Unknown


    Adding a third because I'm just so darn easily amused...
    "Do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup.
    - Bruce Graham"



    Current treatments:
    -IC diet
    -Elavil 30mg at night
    -Ditropan 5mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills every morning and night
    -Pyridium if needed, usually once a week or so
    -1 Vicodin at bedtime,
    -Flexeril 10mg at bedtime
    -Dye Free Benadryl for allergies occasionally
    -Pelvic floor & myofascial release (external only) physical therapy for 8 weeks, then home exercise program...
    -Managing stress
    -Fur therapy: Hugging the cat!

  4. #4
    ICN Member 123456's Avatar
    Join Date
    Oct 2009
    Location
    Tampa Bay, FL
    Posts
    490
    Hi Melody,

    It took time for any of my oral medications to work, but I'd say I started to feel much better within 3 months. During that time frame, I also started physical therapy which is awesome. I'm now 10 months in and I'm feeling better with each passing month. I am a single mom and work full time in a very stressful career. Just keep trying and don't give up. You will find some consistency eventually. You should only take it one day at a time. Don't let a flare up scare you or think you're going back to the beginning. That happened to me a few times and I flipped out but still I kept getting better.
    Your Friend,
    Michelle

    Diagnosed: 10/16/09

    Elmiron, 100mg 2x per day
    Imipramine, 10 mg per day
    Diazepam 10 mg for sleep
    Zyrtec
    Zovia, birth control (ongoing-no periods)
    Probiotics
    Hydrocodone, 2 pills a day (at any time of day)

  5. #5
    ICN Member skybluesoul's Avatar
    Join Date
    May 2010
    Location
    Pennsylvania
    Posts
    272
    Melody, I sympathize with you. I've had to try many things (and am still experimenting) to see what helps. I'm a teacher also and am very nervous about beginning the school year. Last year I had to take a lot of time off to get my symptoms under control, and I really don't want that to happen again this year. I hope you have a smooth start to your year!

    Kadi, could you also send me the letter? I really need some inspiration.
    ----------------------
    -Amanda
    29 years old, bladder symptoms all my life
    diagnosed with PFD and VV October 2009; IC May 2010; acid reflux due to lactose intolerance May 2012
    I also have plantar fasciitis: diagnosed August 2011 (had foot surgery 6/28/12 and 11/15/12)

    Current meds:
    Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Uribel as needed, Gabapentin 600 mg, Oral valium 2 mg twice a day, Vitamin D, Ester-C, capsaicin cream (for vulva), and Prelief as needed
    Other treatments:
    IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, marcaine, and mucosa compositum
    Tried and didn't work:
    Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture -- not sure to what extent this did or did not help

  6. #6
    Support Leader kadi's Avatar
    Join Date
    Dec 2003
    Location
    California
    Posts
    8,281
    Hi Amanda,
    I sent you the article by private message Hope it helps!
    Happy New School Year!
    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.
    ------------------------------------------------------


    This week's favorite one-liner:
    "Just remember, if the world didn't suck, we'd all fall off. ~Author Unknown
    "


    New second favorite:
    Please, Lord, let me prove that winning the lottery won't spoil me.
    - Unknown


    Adding a third because I'm just so darn easily amused...
    "Do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup.
    - Bruce Graham"



    Current treatments:
    -IC diet
    -Elavil 30mg at night
    -Ditropan 5mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills every morning and night
    -Pyridium if needed, usually once a week or so
    -1 Vicodin at bedtime,
    -Flexeril 10mg at bedtime
    -Dye Free Benadryl for allergies occasionally
    -Pelvic floor & myofascial release (external only) physical therapy for 8 weeks, then home exercise program...
    -Managing stress
    -Fur therapy: Hugging the cat!

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