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  • efwinslow
    replied
    Hi Marsha, I hope the pain meds are helping, and I hope you have enough this time. I too have had to deal with rude receptionists and or nurses at my doctors offices. It is so frustrating! You don't want to call and bother them because they make you feel worse than you did before you called. I have hung up the phone so many times and cried because of the snotty attitude they have. Now, I try to develop a rapport with one receptionist or nurse and ask for them directly. Last week I finally just told the receptionist that despite "her advice" I didn't feel comfortable and needed the dr to call me. He called me back that night at 7:30 pm and was great. Anyways, it sounds like your doctor has helped you find a way to reach him. I know there are many wonderful people who work in the health industry, but it sure is frustrating to deal with the ones who are not!

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  • alana rose
    replied
    Marsha-
    Hi! How are you feeling today? Better I hope. I had my appointment with my gp today. She said that she is going to give me a two month holiday from the pain and gave me two-months' worth of fentynl patches. She is so happy that the patches are working. I do have a bit of break through pain, but I just take a 1/4-1/2 of an empracet (it is usually at the end of the day.) I told her how I have all of this energy now. I actually wake up and plan my day! After the two months I am going to go off of the patches and see how I feel. Then take it from there. Definitely try to get into a pain clinic and ask about the patches. I am on a wait list to get into the pain clinic here-it is going to take a year for me to get in. Take care and let us know how you are doing.
    alana

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  • rachelm
    replied
    I totally understand the concern about the cost of copays and drugs. I too am on many drugs and without my insurance there would be no way I could do it. They would be $700 per mo. As it is with co-pays it adds up especially when I go daily for bladder washes (heparin/marcain/bisodium carbonate) at $20 per day. ugh! If your dr. will let you do instills at home that would be great! I have begged mine till i'm blue in the face. She explained to me today that the marcaine can put you into cardiac distress if the body absorbs it too quickly. She had a patient that passed out and went into arithmea after her first bladder wash following the potassium test. I know that she was more seceptable because the potassium made her bladder more irritated so it just absorbed the marcaine quickly. It was also her first time. I've had hundreds of bladder washes and they never make me react this way but they still won't let me do it.

    Also, if you have an infection you shouldn't do any type of instillation until you've been on an antibiodic for a few days. My dr. stops them until my Lucicytes come back normal. It can stir up the bacteria I guess. Good Luck with your search for a pain clinic. You will be in my prayers.

    Rachel

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  • jgordonfan03
    replied
    Rachel,
    Thanks..I had also planned to ask for a referral to a pain specialist because I do work and have back, leg, and bladder pain daily from standing on concrete floors. We had shutdown for 2 weeks at Christmas and I got to feeling much better during that break. Well the first 2 weeks back, I steadily hurt worse each day. I am trying to find a job as an Admin Asst again so I won't have to do 10 hrs a day 4 days a week on my feet. My admin job was eliminated due to slow work so I am doing quality inspections for my company. And I am trying so hard not to let this disease disable me at this point, but it is really getting hard not to give in to the pain.
    I'm not sure what was in the instills I did initially, but I plan to ask tomorrow what is in these. The cost of 35.00 copay for them for 7 weeks is going to kill me since I still have 4 weeks to go before returning to work after this surgery. My doc had suggested I learn to do them at home if I had to get them again, so I hope he will let me do that this time. I am a little nervous about that, but as a single parent it will be necessary this time. I already have 10 meds per month that takes about a 1/4 of my income monthly even tho I only pay a co-pay.
    Thanks again.

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  • rachelm
    replied
    Marsha,
    I'm so glad you got to talk to your dr. I had an appt. with my pain dr. today and I explained how difficult it has been to get his nurse to call me back. I wait for 3 days and then just keep calling until I finally get her. I told him that I don't want to bother them and I only call when I really need to update them on how the meds are not working as well. He was sooo nice. He told me to call the after hours number even if it wasn't an emergency so that he would get the message directly. He said he would call or have someone else call and discuss what changes needed to be made. I had to make sure that I had some communication in place because I'm getting the trial interstim Tu. and I want to make sure he's available if I need him.

    I'm glad that your uro is having you go back in tomorrow. Are you doing Heparin/Marcaine instills or something else?

    I would definitely reccomend finding a pain specialist. Mine has been very helpful in managing my pain. I hope you get to feeling better!

    Rachel

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  • jgordonfan03
    replied
    Terri and Alana,
    Thanks for the support. Yes these boards have saved my sanity thru these last months. I am a single parent of a 12 yr old girl roaring into puberty with all the mood changes and a severly ADHD 4 yr old son that I and my PCP are trying to get meds regulated for. So I get very stressed and upset. Now I know I will definitely ask for the patch for the flares.
    Terri, I too will not go thru 2 and 1/2 days like I have this week. I am normally a very outspoken person and very proactive, but with sleep deprivation and pain, it was hard to be forceful about getting my message thru. But it won't happen again. If I cannot talk to or see my dr., I will insist on talking to 1 of the 2 other nurses who are so good in that office.

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  • Teri
    replied
    I'm go glad for you Marsha.....took me 7 very very long years to find a dr with the guts to treat my pain.
    I've already made up my mind that if anything were to happen and I was left without pain management again I will call Hospice and get recommendations of dr's that they use.
    NO ONE SHOULD HAVE TO SUFFER LIKE THAT.....

    sending warm fuzzy hugs~

    Leave a comment:


  • alana rose
    replied
    Marsha-
    You are so welcome for the advice. I have started on the 25mcg fentynl patch that I change every 72 hours. I have had some break through pain usually the last day that I am wearing it-I have taken 1/2 an empracet for the pain. This is the first week of wearing the patch-I'm going to my gp tomorrow so she can assess the patch and if I need to increase the dosage. I don't how long I will be on it. I do have questions to ask her-how long she would like me to try it. Do I just use it when I have flares-which is constant lately. Let me know if you do get the patch as well. I am so happy that I can help you. This website is a god send to me.
    alana

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  • jgordonfan03
    replied
    Alana,
    Thanks..I had done some research of pain management strategies when I couldn't sleep these last nights and had intended to ask about the patch and some other things tomorrow too. My uncle is paraplegic and has nerve damage that he controls pain from with the patch with much success, so I am definitely going to ask. Even if it is to use just until they can get my bladder back under control again.
    Again, thanks for the advice.

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  • alana rose
    replied
    Marsha-
    I hope that you appointment goes well. I will be thinking of you. My uro is impossible when it comes to pain meds. When I tell him that I ended up at ER when I had a flare-he cringes. I have posted before in other topics that my gp has put me on fentynl transdermal patches. I have had pain since last March-with numerous flares during that time. The patches are working well-I had my first pain free day, first time in one year. Good luck-perhaps look into a 'patch'.
    alana

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  • jgordonfan03
    replied
    Update:
    Well guys, I was getting down to my last 2 pain meds today, called the nurse, left a message that 1)I had 2 left 2)They were not helping much 3)what did the culture show 4)needed more meds.
    After 4 hours (about 4pm) she calls back and says my dr. is not in office until tomorrow and nothing can be done. I asked could one of the other docs see me or call me in something...again no...take aleve. What a joke!
    I was so upset. I called at 5 to get the answering service to get the doc on call to call me because it had been an hour since last pain med and the pain was getting worse. Well guess who was on call...yes, my doctor. He said the nurse didn't tell him the extent of my pain and had also said I had enough meds to last THRU tomorrow. I explained what I had told her and her replies, answered his questions. He then called me in some stronger meds immediately and said he wanted to see me tomorrow no matter how full the schedule was! He is going to start me back on the instills and see what else he can do then.
    Well from now on, I will NOT deal with that nurse again! So, there is hope.

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  • khouse
    replied
    Marsha,
    I am in the same boat as you and don't really have an answer but will be praying for you and hoping you find relief soon! \
    Love,
    Kim

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  • jgordonfan03
    replied
    Thanks Donna and Julie. I am sitting here, and walking the floors almost in tears. I have just changed the stick-on heating pad and hope that will also help. I just get so frustrated when I am doing all they ask and still feel like I have to beg for meds. Thanks so much for the support!

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  • ICNDonna
    replied
    The nurse may have just given you enough to get you through until the culture results. If you have an infection, the treatment would be different than for an IC flare. If you don't hear back by the time you are down to a full day's supply of pain meds, I would call the uro back and request more.

    Sending healing thoughts,
    Donna

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  • Vicki Brown
    replied
    Marsha,

    I feel for all you've been through and yet you're hanging in there. I've been suffering with ic for a year, not able to work or do any of my normal activities, etc. My uro had bee prescribing elmiron, vistaril, valium and maxidone. In November he told me to see a pain dr. because he wouldn't write me any more scripts for valium or maxidone. There was a lapse of 2 weeks before I could get appt. w/pain dr. and I was out of valium. M uro refused to call in the valium. I couldn't believe he left me hanging, it was just horrible. My family dr. did, thank God, because after going without for 7-10 days I was in total agony, flare etc.

    Anyway, I saw the pain dr. and was very pleasantly surprised. He treats a lot of ic patients so he is very familiar with our disease. He has consolidated some of my meds. and given me new pain meds. and I;ll return in 2 wks. If these don't work he told me about MANY other treatments, medications that could help. Anotherwards, don't be discouraged if these meds. didn't help. I was amazed there were so many treatments. I can't tell you how relieved I am.

    I hope this helps you. It sounds like you need a pain dr. desperately and like NOW. I hate that you're suffering needlessly and these dr's. aren't listening to you. Perhaps you need to get really really firm in explaining this to your dr., and insist on speaking with only dr. and even seeing every day if necessary to get meds. until you can get to pain dr.

    My prayers go out to you, warm hugs too.

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