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Having the worst day since the hospital

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  • #16
    Thanks for the group hug. Well, that's just it Kara..my doctors do not agree on how to treat pyridium. The ER doc I saw and often see said she NEVER does long term Urogesic Blue or Pyridium. As for my primary care, she agrees with the ER doctor. But here's what really gets me. My Urologists are in a group of two.....sometimes you see one and sometimes you see the other: one of them PUT me on Pyridium Plus long term and the other one said NO to that long term. Then, they don't agree either on one letting me come home and do instillations of heparin and lidocaine (which really works) and the other one only wants me allowed to do it in the office. With this latter issue, me smells a doctor who wants to make money on me every week because I am getting instillations about once a week.

    Hmmmm....
    Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

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    • #17
      April,

      Remember it is always okay to get multiple opinions on anything and more importantly you are the patient and have to right to stick up for what you think will help you and if that is doing the instillations at home then so be it!

      I am so sorry to hear you are feeling bad. Hang in there.

      April

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      • #18
        Thanks for the kind words, April. I am DEFINITELY sticking up for the instillations today. With my husband last night, I was reading the stuff on Interstim and read a really long post on here by someone who said read before you consider Interstim. I can't remember where, but I ran across it on here. I think God wanted me to see it because I was thinking more and more about it. But, however, the more conservative treatment of instills with heparin and lidocaine work for me for at least a week at a time...so I think it is best to stand up and stick up to get them at home so maybe I can work again. My plan is if today they won't approve me to get them at home, tomorrow I have an appt. with my PCM and I am asking for a referral to an IC specialist in New Orleans. Perhaps "this" doctor will allow it. I see no reason why, if I am already allowed to catheterize myself, I can't do instills at home. It makes no sense. The hardest part about that is self-catheterization. I can draw up the medication, no problem...especially if I can successfully deflate and remove a foley cath (did that last week because the thing was bleeding around it and later found out that the nurse who placed it inflated the balloon too much and man, was my bladder irritated after that)!
        Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

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        • #19
          [QUOTE=Moonheart]My pain doubled since my hydro and I haven't had any relief since. I had to increase my morphine to 120mg a day with doctor's approval, and there are times when I just scream the pain shocks me so bad. Plus now I have increased edema and pain as well as heat in my legs, arms/hands, and face. I'm pretty bummed about it.

          I hope you feel better.

          Moonheart[/QUOTE

          I have that symtom too, burning/tingling/prickling in my arms,legs,feet, face, trunk, everywhere. I just got it after my cysto/hydro in January, but of course the doc said that didn't cause it. I am going to several docs trying to find out what the heck this parasthesia is..

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          • #20
            Originally posted by Moonheart
            My pain doubled since my hydro and I haven't had any relief since. I had to increase my morphine to 120mg a day with doctor's approval, and there are times when I just scream the pain shocks me so bad. Plus now I have increased edema and pain as well as heat in my legs, arms/hands, and face. I'm pretty bummed about it.

            I hope you feel better.

            Moonheart
            Moonheart, the funny thing is...(not funny at all) is that my IC was so much better even though we didn't know I had it before the cysto/hydro. I, too, have had a lot of retention everywhere, including my bladder. My husband and I self-cath and do instillations about every other day to help with pain.

            My pain medication has been increased also from Lortab 10's to Percocet 7.5, two times a day and Methadone 10mg 2x daily. I also take Phenergan and Valium quite a bit because when I am in pain, I get anxious and can't relax and also get nauseated, so they added those. Today has been harder than the last few...I think since last Saturday.

            What stinks even more is that I have to get it under control by Sunday. I have to work on Monday (part-time substitute teacher). Anyway, please keep that in your prayers. I do not want to have to call in again and will go no matter what, really. I would just like to have a decent day.
            Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

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