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Thank you all for your prayers & support.....

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  • Thank you all for your prayers & support.....

    Hi all my IC friends, I've soooo missed you guys and not being able to get online!! I'm also having telephone issues, so I can't even really talk on the phone! I have been "out of touch" for a while now....

    I'm finally settled, and I wanted to Thank You all for your prayers (I wasn't sure where to post this - guess the Prayer section is gone?). I (knock on wood) am doing much better. It's been tough, I've actually lived in 3 states in 3 weeks, and am finally getting settled (hopefully for a WHILE!) in Connecticut (only about 1/2 hour from my kids - YAY!).

    I am truly Thankful for the way things have gone....I drove up from FL w/Greg, dropped him off w/his daughter and went to visit my kids. From there I went to stay at a friend's house who said I could stay there til July 1. I was looking at working part time ... and extremely SCARED to do it, my pain is so severe, I really didin't (and don't) think I could have. I ended up getting a 4 hour a week pretty low paying job, but then things changed.....this is where the "Thank You for the prayers" comes in.....

    My friend that I was staying with gets up every morning and reads the paper, well she saw an ad that said "companion for elderly woman needed, free room, Christian preferred". She joked that I couldn't call on THAT ad! (I AM a Christian, but do sometimes sin (swear, etc...) so she made a joke of it. Well to make a very looong story short, I called, and after I met with them, it was apparent that they needed someone 24/7 for their Mom, so I figured out what I can still make and keep applying for SSDI and told them that's what I wanted to get paid. They liked me immediately and I am now caring for their 83 year old mother and staying in a little old house on 160 acres of beautiful farmlands, woods, rolling hills and stone walls, and getting paid for it!!

    It IS TOUGH some days.....I'm not used to preparing 3 meals a day and caring for an elderly woman, but with my symptoms, it pains me to say (literally!!!) that we're alot alike!!!! I've been saying for quite some time now that I live like a 90 year old woman, now I'm sharing a home with one! I sit on the heating pad then put the heating pad on her while I do my stretching, then I do her stretching with her.... Her diet is unrestricted though, and that's a little tough sometimes. I was just denied SSDI again so I have to get an attorney now, but this isn't about all the crap I still have to do.............It's about letting you all know that (for now) things have gotten better for me and I Thank You all so much for your thoughts, words, and prayers, and I've missed you all terribly!

    It's good to be back my friends, Thank You again!
    Thank You all so much to everyone here for all your sharing, caring and support!
    < My "Bear"
    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 -

  • #2
    So glad you are doing well.. Thank you for keeping us updated

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

    Link to Patient Handbook:

    Diet Reference Sheet:

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

    ICN 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.


    • #3
      What a blessing!!!!

      Are you able to get paid more by them for now until you actually do get approved by SSDI? You shouldn't have to decline pay until you actually are on the SSDI program I would think.

      What a wonderful blessing. It sounds like a dream location. I love places like that!

      Even if you don't receive SSDI (and I hope you do) your needs should be cared for in a place like that, especially if you have the option to make more money.

      Take care!


      • #4

        Stay safe

        Elmiron Eye Disease Information Center -
        Elmiron Eye Disease Fact Sheet (Downloadable) -

        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:


        Diet list:

        AUA Guidelines:

        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


        • #5
          'The will of God will never take you where the Grace of God will not protect you.'


          • #6
            I'm glad things are working out. I don't know if you saw my good news, but I won custody of Lindsey last week! PM me if ya want! I have been so worried about you and glad you're ok. Whew.

            (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

            [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
            :angel: IC Angel Volunteer Coordinator :angel:
            :) Contact me via PM or e-mail if you would like to help
            I have learned all about life in 3 words: It goes on! :D--Robert Frost
            PCOS 7/85
            RSD 7/94 :headbang:
            Endometriosis 9/98 :toilet:
            Antiphospholipid antibody syndrome 9/99
            Kidney stones--too many to count
            Factor V Leiden mutation 10/02
            IC 6/03 :evilsmile
            Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
            "Spirit is an invisible force made visible in all of life"--Maya Angelou
            "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]