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  1. 08-10-2006, 05:16 AM #1
    NTHottie14
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    Smile New IC Activist Website!!

    I made this website:

    http://www.freewebs.com/icactivist/


    Please check it out and tell everyone else about it. You will find out more of what this website is about when you hopefully visit it. Im sooo excited!!

    Laura
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  2. 08-10-2006, 05:32 AM #2
    Janie Miranda
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    Laura,
    That seems like a neat idea but I'd like to encourage everyone to join the interstitial cystitis association. They do some really awesome lobbying and activism on the part of IC and chronic pain patients.
    hugs,
    Janie
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  3. 08-10-2006, 05:35 AM #3
    NTHottie14
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    Smile

    Yea that's a great idea too. I only started this because i thought it would be different if the website was actually made by real IC patients. And i also thought we could get things moving along faster so im not trying to make everyone forget about the other websites i just thought this we be and awesome idea.
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  4. 08-10-2006, 05:58 AM #4
    ICNDonna
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    Actually, both the IC Network and the ICA site were created by "real IC patients." And both the IC Network and the ICA site are currently and have always been managed by IC patients.

    Jill, who started the IC Network is an IC patient. I am an IC patient. All of our Board Moderators and Super Moderators are IC patients.

    Warm hugs,
    Donna
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    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.

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  5. 08-10-2006, 06:02 AM #5
    NTHottie14
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    Smile

    Im sorry i forgot. If this little website i came up with isnt a good idea then ill delete it. You dont join the website like the ICN or ICA you just write in. Im not trying to replace any those. But if you think its not i good idea then let me know. I dont want to seem like im telling you to forget the other websites because im not. So im soo sorry. But please let me know.
    Laura
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  6. 08-10-2006, 06:07 AM #6
    vm
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    It's a very pretty site - I like the graphics.
    Kim

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    My IC story: http://www.ic-network.com/patientstories/kim.html It's very outdated now. I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

    *****************************

    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy
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  7. 08-10-2006, 06:08 AM #7
    NTHottie14
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    Question Thanks!

    I was hoping for some good replys. Im beginning to think maybe it was a bad idea?
    Laura
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  8. 08-10-2006, 06:11 AM #8
    ChrissySunshine
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    Hi Laura, I just checked it out, and I think it's a great idea. From what I understand the site will be used to increase awareness of IC, which I think is long overdue. Thanx for sharing this!
    Thank You all so much to everyone here for all your sharing, caring and support!
    < My "Bear"
    CurrentTreatments:
    Started herbal teas 6/2/06 Marshmallow root, comfrey root, and catnip. 6/25/06 added Mullein Leaf Powder to tea.
    IC Diet
    Hydroxyzine 50 or 100mg at night (Is restarted)
    Zoloft 100mg 4/8/07 (Is restarted)
    Klonopin 1/2 mg 4 X Day (started 3/17/07)
    Past Treatments: Amitriptyline, Neurontin, Hytrin, Heparin instills (was Dc'd after 5 weekly tx's due to severe urethritis), Superior hypogastric plexus block, E-stim, Elmiron instills (started 4/18/06-Dc'd 5/30/06 due to severe urethritis/infection requiring foley cath @ home 4 days), Oxycontin (oxycodone) (4/18/06)-pain (Dc'd 5/31/06), Levsin S/L (hyoscyamine) (3/17/06)-antispasmotic (Dc'd 5/31/06), Elmiron (1/24/06)-(Dc'd 6/25/06), Prelief, Zanaflex 4mg for PFD (Dc'd 10/1/06), CystaQ 1 in am & 1 in pm with food(started 5/12/06-increased to 2 in am & 1 in pm 9/20/06---Dc'd 10/18/06), Lyrica (started 10/26/06 up to 600 mg-Dc'd 12/4/06 due to urinary retention), Vicodin (hydrocodone) ES PRN for pain (Dc'd 1/4/07); Cymbalta 30mg (start 1/17/07) up to 60mg in am (1/26/07) (D/c'd 3/17/07); Ativan 1mg(Lorazepam)- PRN Anxiety (changed to Klonopin 1/2mg 4Xday 3/17/07); Pyridium (phenazopyridine) PRN-bladder analgesic; MSM (6/12/06) 1000mg after breakfast & dinner (Dc'd 3/15/07); Acidophilus (Natrol) 100mg. 1 capsule 1/2 hour before breakfast (5/20/06) (Dc'd 3/17/07)

    Added BACK in - Atarax (hydroxyzine) (started 4/6/06 Dc'd 5/31/06) Restart 50mg at night 8/18/06, up to 100mg at night 1/4/07. Zoloft 100mg-Depression (Dc'd 7/25/06) Restart 4/8/07) 100mg.
    Dx'd: Dec 05 (Positive PST in November and positive cystoscopy in Dec) Symptoms: Pain, frequency, urgency & retention

    My Myspace page - http://www.myspace.com/42620225
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  9. 08-10-2006, 06:13 AM #9
    vm
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    I don't think it's a bad idea. It's spreading the word.
    Kim

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    My IC story: http://www.ic-network.com/patientstories/kim.html It's very outdated now. I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

    *****************************

    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy
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  10. 08-10-2006, 06:14 AM #10
    NTHottie14
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    OK thank you sooo much!
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  11. 08-10-2006, 07:49 AM #11
    green_the_fish
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    I like your website! When it comes to spreading IC awareness, every little bit helps! I just left a message in the guestbook.

    Keep working on the site, okay? I think it's a great idea

    Medical Conditions: interstitial cystitis, bipolar disorder (type I), hypothryoidism, tachycardia (chronic)

    Other Occasional Health Problems: blepharitis and allergies

    Current IC Treatments: just avoidance of triggers

    Current BP I Treatments: Seroquel and lithium orotate

    Current Thyroid Treatments: Natural Sources Raw Thyroid

    Current Tachycardia Treatments: Metoprolol

    Past IC Treaments:


    Ortho Tri-Cyclen
    Hydroxyzine
    Elmiron
    Urocit-K
    pelvic floor therapy
    avoidance of flare-causing beverages


    cystoscopy with hydrodistention
    Detrol LA
    MSM Sulfur Dietary Supplement
    Prelief
    Neurontin
    Pyridium
    adherence to the traditional IC diet


    Elavil
    DMSO
    Ditropan XL
    Levbid
    & the herb dandelion, although the tea tasted good

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  12. 08-10-2006, 07:53 AM #12
    Janie Miranda
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    I think it is a fine idea too - don't get me wrong! :-) Good luck with it.
    hugs,
    Janie
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  13. 08-10-2006, 08:15 AM #13
    SharonA
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    Thumbs up

    You did a great job. Big things always have a beginning. I congratulate you for doing this...*Applause, Applause, Applause*
    Sharon

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.

    If not there, then here


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    IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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  14. 08-10-2006, 08:48 AM #14
    NTHottie14
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    Smile

    Thanks soo much. As soon as everyone hopefully sends in ther "IC" story we can get this show on the road!!! I cant wait to see what happens!!
    Laura
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  15. 08-10-2006, 10:22 AM #15
    ICNDonna
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    I also think it's an okay thing to do --- I just wanted to be sure you know that this one is also operated by IC patients.


    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.....
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