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  • Hi Everyone!

    I'm not sure really where I should be posting this, but my condition(s) are very complex, suffering from dx'd IC, PFD, and possible Pudendal Nerve Entrapment (not yet dx'd).

    I wanted to update everyone and let you know that I've made my move to RI. It has been a tough, tough time for me, the 28 hour drive was horrendous, and I'm having a hard time adjusting to all the changes in my life. My friends here are trying to be understanding of my pain, but we all know that no one knows our pain like we do ourselves....I'm very debilitated, and it's very difficult for my old friends to understand.

    I gave up everything I had in Florida to move back home to be closer to my kids and pending grandchild. I'm living with friends just til July 1, then I need to find housing. My sympmtoms are still the same, I cannot sit, stand or walk for more than 1/2 hour or so at a time, still, I have to look for work, which I'm gonna start to do today. Honestly, I doubt that I'm gonna be able to, my pain in so severe, but I have no choice. I'm gonna look for part time work (under 20 hours per week), and hope and pray that I can handle it. I'm trying to be optimistic about it, but it's very difficult. I have an appt. tomorrow with a local community agency that I hope can help me to get some assistance....there was absolutely NO HELP for disabled persons in Florida, and I believe there are more programs here. If I can at least get on Medicaid, then maybe I can continue researching diagnosis and treatment options.

    I don't even have my own computer set up here, so I can't be on as much as I normally would (in FL my computer was at my bedside so I could lay down and type, here I have to stand to type). You all have been so supportive of me and my problems, and I just wanted to update you and thank you for all your prayers. I think of you all the time, and ALL OF YOU are in my prayers as well! THANK YOU for being here for me!

    I'll keep you posted!

    ~ Chris
    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
    I sure hope you will be able to get some help soon.. I am keeping you in my prayers...

    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


      • #4
        Hi Chris
        I'm glad you made it home safely. Keep us posted best you can on how things are going! I'm going to send you a reg. email today, so make sure to check for it.


        • #5
          Hi! I am so glad you made it to RI and are okay! I have been pretty worried about you. I am glad to know that you are close to friends and family now and hope that you can get some help in RI that wasnt available in Florida. Thank you for letting us know you are safe. You are still in my thoughts and prayers.



          • #6
            HEY CHRIS!!!!!!!! SO HAPPY TO HEAR YOU MADE IT. If you want me to call you where you are, let me know through pm.

            Love Ya!

            YOU MADE IT!!!!!!! I AM SO PROUD.

            Last edited by Kara29; 05-08-2007, 07:24 AM. Reason: typo
            Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

            "One hour at a time, this was NOT my American Dream but it has to work out somehow."

            I also have some journals of my journeys, past and some present at:

            Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.


            • #7

              I'm glad you made your move OK and I hope your new situation works out well... and soon!!!

              *Diagnosed with severe IC in 2004
              *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
              *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
              *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

              **I am not a medical authority nor do I offer definitive medical advice. 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.