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Day 1 of Pain Pump Journey

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Comments

  • memerainboltmemerainbolt IndianaPosts: 6,399
    dmo

    I take over the counter probiotics capsules with 15,000 live cultures. If eat yogurt make sure it has "live" cultures in them.
    My doctor order a specific compound but the compounding pharmacy said they were very expensive and the over the counter would work just as well. We ok'd it with my doctor first.
    It is literally the only thing that has ever worked for me.
    Don't worry for now about the meds becoming ineffective. That's just another worry you don't need. Enjoy it while you can.

    Have a good evening.
    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
  • memerainboltmemerainbolt IndianaPosts: 6,399
    First pump refill!!
    Today, I had my pain pump refilled for the first time since Jan. 19th. It was so easy!!
    The doctor had a flexible diagram of my pump with measurements and markings on it. She laid it directly on the pump and lined everything up, found the portal and stuck a needle in it, which I did not feel. She then started pulling the old morphine out, which was 7mg left it in.
    Once it was all out she began slowly refilling, 40 mg of morphine. Done, that was it!! I had to stay for a while to make sure my blood pressure did not change, which it did not.
    My dose is now at 2.01mg/day and the bolus shot is at .250mg/day. 
    This is still a slow process, to find the right dose that I can live with. Still, I will never be completely out of pain, but I want to able to tolerate it.

    I also saw my psychologist today. We got on the subject of loosing concentration and not being able to think straight again. I know a lot of other members have a problem with this too. He explained it in a different way. Once you are aware of this, hopefully, you will find yourself doing it. I'm using myself and my thoughts as an example.
    Your mind has a volume control. I get up in the morning and it's on high, what do I need to do today, what can I do, what can't I do, but what do I want to do and tomorrow I have to do....
    Turn the volume down a little, what am I able to do today, what do I want to do, let's get through today and think about tomorrow, tomorrow.
    Now, turn it down again, it's gotten very still and quiet. Now I can think about what is important, today.

    It made a lot of sense to me, in fact, now that I'm aware of it, I have caught myself several times today saying "turn the volume down" lol.

    In turn, I told him about the Spoon Theory, but I had to use 10 pens. He loved it, looked it up and printed it.

    Take care everyone and thanks for reading.

    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
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  • memerainboltmemerainbolt IndianaPosts: 6,399
    Aneita

    LOL!! You are welcome.
    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
  • Hi Sandra
    Good news that went easy for you and prayers too that soon they will get you at the point of pain relief you want. Does it bother you at all the pain pump I think I remember you saying it was swollen or getting in the way. It could be the brain thing lets hope so and that is not a problem either.
    You know I have a memory issue and exactly how you describe it bugs me so much. I am one of those that my brain is in constant high mode and with the though process I have going on it makes things super hard. I am going to try my best to use that tool would love an improvement. I am going to note it and stick it here where I am reminded of it all the time.
    Thanks for the idea and I will pray the increase in meds helps.
    Take care of yourself
    Sherri
  • memerainboltmemerainbolt IndianaPosts: 6,399
    Sherri

    I think I have gotten used to the pump, most of the time I don't even know it's there. Except if I sit the wrong way. But it doesn't cause any pain. 
    Funny, sitting typing, and thinking ahead. I need to do this or that. I just turned the volume down and said to myself, one thing at a time. lol
    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
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  • memerainboltmemerainbolt IndianaPosts: 6,399
    Finally, seeing a big difference!!
    This journey has been rough at times, frustrating and depressing. But there is always hope.
    Since my PM doctor increased the meds in my bolus shot (which I can do every 4 hrs.) I am not in so much pain all the time.
    And I'm only using the bolus (so far) only once during the day and at night before I go to sleep. Also sleeping a lot better and feeling better in the mornings.
    Most of the time my pain levels are between 2-4, which I can deal with. I'm always busy doing something but I know my limits. When the pain starts climbing, I back off. At least I'm not stuck laying down all the time like I was for so long.
    I still cannot walk for a long distance but I'm working on that. I'm hoping over time I'll be able too.
    The nerve damage is there and always be. Sometimes I have to deal with shaky hands and fingers and wobbly legs.
    But I'm not in so much pain!!

    I am not one to give up on anything and I wasn't going to give up on this. It has taken a lot of work both physically and mentally to get where I am. 
    Thanks to everyone who has supported me through this journey. I originally came to this forum for information on a pain pump. I got that and more than I ever expected from you guys. Between my psychologist and ya'll I try to keep it together :-).


    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
  • HI Sandra
    Gee I needed to read something to lighten the day so this post was good for me. So happy for you and Hubby plus the family and hopefully so many less dark times and so so many days enjoying the family and the gorgeous place you live. 
    I am a dummy but what is the bolus is that the place it goes in and so glad it is not a painful experience. So you are totally on that amount of meds gee when it is put in your body for the pain you were in to drop it to a 2/4 is fantastic. It bypasses the tummy right anyway for the most part heck I need to read up on it instead of bugging you. 
    Anyways great news you hurt long enough at levels no one should have to.
    Have a nice evening.
    Sherri
  • memerainboltmemerainbolt IndianaPosts: 6,399
    Sherri

    The questions are fine, that's how I learned, ask questions!
    The bolus is a remote control device about the size of an old flip phone. I jut lay it on top of the pump, it beeps until I find the right spot and it sends a signal to the pump to shoot extra morphine, .25 mg.
    The meds do not go to your tummy or any other organ, stays in the spinal canal.

    Aneita
    It sounds like you are still doing better than you were, at least you are getting up and walking.
    Keep up the good work.
    I still do not like posting how great I feel when all of you are still struggling. But that is part of all of this, to give others hope.

    Take care and thanks again for your support.
    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
  • AkiraAAkira Redlands, CAPosts: 82
    So good to read that you Sandra is getting better and stronger, especially less pain. Yay.  As I stated before, the people on this site are my "Psychy" helpers.  I gritted the honey do list today, but I bore through the pain and completed the tasks.  Now I'm on my recliner with my ice pack on my back waiting for the number to go lower.  I have a PM appointment this afternoon and will see if they will set me up with another RFA or ESI.  Thanks for keeping us posted on your journey Sandra and others as well.

    Hoping for a low number to all of you.
    Akira/Chuck
  • memerainboltmemerainbolt IndianaPosts: 6,399
    Sorry for the delay in answering but where we live we have problems with internet and phone, very spotty at times lol.
    Aneita
    Thank you so much for the sweet words, I really appreciate it. Hope you are feeling better by now, how did the RFA go?

    Akira
    Thank you so much, I always like hearing how you are doing. How did the RFA go with you too? Like you, I bore through it sometime, telling myself one more minute then I'll stop.

    I went to the rheumatologist yesterday but I'm going to discuss this on the sister site, Arthritis-Health. He ran a lot of bloodwork, all of my numbers can back high again. My fingers are very knotty and getting very crooked. I know there isn't anything we can do about that, they just look gnarly!!

    Hope everyone has a good weekend, and thanks so much for all of your support.
    Sandra
    Veritas-Health Forum Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
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