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it was all a waste of time

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  • it was all a waste of time

    My PT talked with me this morning. She is planning on 4 more weeks and then that is it. She told me a back massage costs from $50 up for just one time. So, I can't afford that so all the PT was for nothing. Without the back massage with heat none of the other stuff helps. I'll get one more month on the darvacet and then it will be back to the vicodin. I didn't bother to tell her I can't afford it. Wouldn't make much different but at least now I ahve more time during the day. Won't need to do the 20 minute lay down twcie a day. Really wish I hadn't tried it again. Don't really want to go anymore either.

  • #2
    I'm sorry Mary. Does she feel that after 4 more weeks you will be improved enough to stop? Is this when your insurance stops paying? Or does she just feel this is as much as she can help you and then you would need to do stuff on your own at home. It sucks that you found something that seems to be working and you'll have to stop it. I've never done PT don't know if I have PFD or not but I just wanted to give you ((((((((((hugs)))))))))))

    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus


    • #3
      She says that is all she can do I will have to keep doing it on my own. Insurance will pay for the back massage as long as it is listed with Physical therapy. They won't pay for it otherwise. I have all I can do to pay for the medical stuff I need that insurance won't pay for. I'm trying to think of a way to tell my uro on thursday there is no sense in going for the next 4 weeks. Need another insurance permit form done. I was stupid to try.


      • #4
        Dont look at this a failure point, but as a learning experiece...Trying something new never hurts anything, I know I would try anything to get some sort of relief.. So you didnt fail, you just learned something new

        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.


        • #5
          Also, when we try what they (dr.) want, it helps us in the long run in getting them to try new things also. I have printed info for my dr. and she was willing to research or do it, because I think she knows I am really trying to get better. I joined a place called message envy, a new one just opened here, you pay $39 for your first 50 min. massage, then $49 a month for one massage a month and if you need additional ones in that month it is $39, and they roll over just like phone minutes. Next month, I am trying the reflexology message. They have a total of 6. I am mowing my own lawn this year because $180 month, was just too much to pay for me, so I my mom suggested for me to do this as a way of the pain that mowing causes me. In fact, I am going to call my dr. about something to take before or after (muscle relaxer, etc) so that my pfd doesn't kill me after mowing.