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At my wits end!!!!!

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  • At my wits end!!!!!

    I don't know what to do now, so I'm using this forum post to vent. I have had IC since the end of January 2017. I was diagnosed by my Gyno, who told me that if I took the Elmiron I would be cured in a year. HA! After my official diagnosis I started researching IC. I know you can't believe everything you read online. However, when you read article after article, post after post & hear all the same stuff over & over, you kinda start to believe what you're reading. So, I found out IC can not be cured, that the symptoms had to be treated &/or prevented. I start looking for what kind of specialist I need to see. I have no insurance, so I wanted to make sure I saw the doctor that could help me get my life back! All the while my depression got worse & worse! I have suffered with depression since I was 13. My parents didn't get me any help then because, to quote my dad (if you can call him that) it was all in my head. Kinda funny how right he was! About 2 1/2 years ago I found a very wonderful psychologist!! I finally had a life. The life I should have had all along. I was the wife & mother I always should have been. I was HAPPY!!! I had never said that before in my whole life! Life was great I lost over 120 pounds. which I had been trying to do since I was pregnant with my oldest child. I guess I could go so far as to say, I was on cloud 9! Then whammo!!! The wonderful disease IC had to enter my life. I have a constant pain level of 5, 24/7. My pain level has gotten up to over 10. I say over 10 because I couldn't possibly Imagine that a person could in the kind of pain I was in & still be conscious. That was a couple of weeks ago, the first time I went to the ER since being diagnosed. Like I said I'm venting, so I apologize for getting off subject & ramble. So, my search for the right doctor kept coming back to one right here in good 'ol North Carolina! He is an IC specialist, on the IC board, Has written many papers on IC treatment. So, I call them it is going to cost my over $400.00 just to be seen not to count any test they do. Like I said before I have no insurance, I can't work (my husband does), & I have 3 boys. I couldn't afford that. I called other offices just to be told the same price or higher. Then I discovered that where this IC specialist works has a financial assistance program. So, long story short, I was approve to get 100% of my treatments at that facility covered!! I was ecstatic!! Then they tell me I have to be seen in their OPD clinic since I'm getting financial assistance. So, I go & see the doctor. Well an intern, who went & got the doctor. The foreign doctor that I can't understand a word he is saying. I'm sure he is a good doctor but, I need to be able to understand what I'm being told. Anyway, not long after that I found out that I could see the doctor I had originally wanted to see. So, I call his office & the first appointment he has open is 3 months away. I make the appointment. I try very hard to not let having IC get the best of me. Which has been very hard see as I have to lay down all the time. The pain is more then I can stand when I try to sit. I can't go anywhere because, riding in the car, the 1/2 a mile to the end of the road I live on, makes me hurt more then I can stand. So, as you can imagine the depression gets worse. to the point that I am now taking 2 antidepressants. I put all my eggs in one basket, so to speak, waiting for the appointment. Well, the appointment was this last Wednesday. Disappointed does not begin to describe what I was!! He did not listen to anything I had to say. Actually I didn't get to say anything, he would cut me off before I got the first word out. The only time I got a chance to say anything, was when he was writing or printing out my prescriptions. I can't take the Elmiron so he told me I need to take 2 supplements that do the same thing as the Elmiron. He said the both of them together would be around $60.00. Try $60.00 each, a month!! He did nothing to help with my pain, so I'm still here on the couch. Even on days when I don't think I'm hurting to bad & I get up & slowly walk around & straighten up a few things, after 10 minutes I'm in so much pain I barely make it back to the couch. So, now I don't know what to do. I have lived with this pain for 8 months & only had Naproxen, Acetaminophen, Ibuprofen, Tramadol (2 x 20 pills), & cyclobenzaprine to take. I am trying to home school 2 of my boys. I also have OCD, so the fact that my house is not "just so" is about to drive me crazy!! I have no quality of life!!!!! I have no life!!!!!! Everything I had work so hard to make better after I got the right treatment for my mental illnesses, is down the drain. My relationship with my family, well I'm not going to go there. Let's just say it isn't good!! I guess I have had my vent session. I would really like someone to be able to talk to, because no one here understands what I'm going through. Thanks for listening or i should say reading!

  • #2
    Re: At my wits end!!!!!

    What were two supplements suggested for you? The drug companies might have a program for folks who can't afford their products --- many companies do. It's worth contacting the companies to ask.

    Have you tried keeping a diary, writing down time of day, everything that goes in your mouth, activities, pain levels. Does your state have a medical program for people who can't afford treatment?


    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

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

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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.
    [3MG]

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

    Comment


    • #3
      Re: At my wits end!!!!!

      The 2 supplements are Cystoprotek & Cysto Q. Which I don't understand because 1 or both have cranberry in them. One of the no no food when you have IC.
      I was keeping a diary. I stared in April & stopped the day if the appointment. After the huge disappointment I didn't see the point in continuing.
      My state has Medidaid but my husband makes to much for me to get it.
      I have done everything I'm suppose to. I only eat IC friendly foods. I don't use scented bath soaps. (I use Ivory) I was my clothes towels everything in Dreft laundry detergent. (no fabric softener) I drink only water, I have for years. Even before I was diagnosed. Sodas & tea have caused me to have UTI like symptoms for years! I think I have had IC for years but, it just got kicked into high gear this year! I have been thinking about trying "natural alternative" pain relief. i can't & won't continue to suffer!! I shouldn't have to!! I have responsibilities that have gone not been taken care of for to long!!

      Comment


      • #4
        Re: At my wits end!!!!!

        Cystoprotek does not have cranberry and the cranberry powder in Cysta Q has had the acid removed. There's also a newer product (Cysto Renew I believe) that has many of the same ingredients as Cystoprotek. I have seen many posts by people who are helped by Cystoprotek and/or Cysta Q --- and Cystoprotek is among the treatment recommendations by the American Urology Association. My suggestion for you is to give one of the three a try --- all are available in the ICN Shop at the link at the top of this page.

        I also wanted to comment about soaps. My now adult children were not able to use regular soap for bathing --- I know Ivory is supposed to be pure, but it's a problem for everyone in my family. You might want to try one of the hypoallergenic soaps to see if that helps. You might also want to double rinse your underwear.

        Warm well wishes,
        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

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

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        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.
        [3MG]

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

        Comment


        • #5
          Re: At my wits end!!!!!

          Thanks for the advice! I will look into those supplements. I will see if I can find a different soap. I need to buy some anyway. I rinse all my clothes again if I smell the detergent when I open the washer, but I will start rinsing them all every time. It can't hurt, or at least I hope it doesn't. Thanks again!

          Comment


          • #6
            Re: At my wits end!!!!!

            When your bladder lining is damaged like IC patients have, new soap makes no difference. If you can afford, find a way to order Uracyst instillations from Canada (it is medical device) and learn to instill yourself to save the money. It is life long process, but you can also get relief soon!
            I also think you should speak with some doc to be always on Tramadol, if it helped that time you took it. Ibuprofen is like acid, at least it burns my bladder very bad, so it makes it worse to take it.
            I have IC 7 years and Tramadol is ONLY med tried that has helped me at all (and I have tried many, except Elmiron, which is too expensive anyway, plus side effects). But instillations are essential, because they keep bladder infection (please not, there are never my case any bacterias!) in ok way not to hurt bladder lining more. Without good instillations (only Uracyst /Gepan/ Uropol, different names, same thing) the bladder starts shrinking and turns more bloody all the time without treatment. It is serious and this money has to be found for your treatment.

            Comment

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