JEH177

Your Replies

  • December 12, 2016 at 11:07 am

    You are familiar with CIDP and how it works, correct ? It is a progressive, chronic, neuromuscular disease. If ithe weren’t chronic, it would be GBS. I have to ask this, do you have CIDP? And how can you REASONABLY tell someone with chronic pain that you don’t care what the pain is? Have you missed any of your children’s youth because you couldn’t get out of bed ? Spent holidays in a ball because it hurt to move ? If you haven’t had pain that severe, and not withstanding your wildly insensitive comment , I really don’t want to hear from you. There is no need to further post here, because I not only don’t value your opinion, I don’t value you as a human. Merry Christmas, you insensitive prick!!!!!

    December 12, 2016 at 10:13 am

    Eliminate the meds for a week? Are you seriout? First off, it would take me at least a good month to be weaned off of everything. If I was to just stop, my body would not be happy and pain would be the least of my worries. Trust me, I’m not a big pill popper or druggie, but I do trust my doctors. Hell, if it wasn’t for my doctor, I wouldn’t even be here. He brought me back from death on the OR table 2-28-2013.

    If I didn’t have a chronic condition(s), I may agree with your theory/opinion. It is yours and you’re surely allowed to have it. But between CIDP, the cord compression and things that the stroke has permanently left me with (or without), it’s not just as simple as starting over. I agree that everyone should have an open mind and try to progress, but when progress isn’t an option and just holding where you are is what you hope for , things are a little more complicated.

    As for knowing what I “really need,” I’ll tell you. Because of asshole druggie that abuse rx meds, the states are reducing the mg of opiate that can be prescribed per day. What I was on was 60mg x 2 morphine Extended Release and 30mg x 6 morphine Immediate Release. Because of the newer guidelines, I have been cut back to a maximum of 4 immediate release morphine a day. What that computes out to is potentially 8 hours a day where I can’t take a medicine that will cut into my pain. And just for the record, I have a decent pain tolerance. I have tats, I have “relocated” a dislocated shoulder without even going to the ER, so it’s not that I have no pain tolerance. I just have so much crap wrong with me that my pain , even with all the previous meds, was still between 3 and 5. AND I WAS HAPPY WITH THAT !!!! I’m hoping my MM card comes soon, so I can at least try and see if it will work as well for me as it has for others. So, short of that or my insurance company stepping up and paying the thousands a month for Subsys, which I highly recommend, it’s going to be a long winter and I’ll be on the walker longer than I’d like.

    Angela, IVIG put me in ICU twice, for a combined 11 days. We don’t get along !! LoL LoL As for the Benadryl, I know it works great on my kids when they have a cold. But for a sleep aid for me, I’m pretty sure that the Ativan is a bit stronger. LoL

    I appreciate you both commenting and I don’t mean to sound negative, but this has been the story for 5 years. Things have been switched up, alternative meds tried, alternative therapies tried and here I am. I wish you both a Merry Christmas and hopefully a less painful new year !!!! -Joe