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Neuropathy Medications
Hello, read this artical from the FDA dated January 30th, 2020, about dangers of Gabapentin, Lyrica and other drugs. I thought it worthy of our attention : https://www.fda.gov/drugs/drug-safety-and-availability/fda-warns-about-serious-breathing-problems-seizure-and-nerve-pain-medicines-gabapentin-neurontin
Warmest regards, Sunnyflower 🙏
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Hank, I think most of us at times or all the time (guilty!) minimize our pain/s. There are so many types of pain; physical and not physical. We all walk through many fires here in this lifetime. There is a huge difference between sharing information and complaining. Here on Connect, we all share info. I think we may fear we will be judged as complaining when we share info about our situations.
This has actually literally happened to me but thankfully only once w/ a family member so now, whenever I share any info outside of Connect, I clarify that it's info only, not a complaint. It was very painful (emotionally) b/c I have NEVER EVER felt like I was a victim nor have I ever questioned God and I know I have not complained. As you know, I trust God and His purpose in my situation and His love for me. They ask how I am. What do I say? So I even try to separate my body and my soul or spirit or mind for example, I may say I'm good or fine but my body won't cooperate with me. If they only knew...
For too many years to count, I have struggled with what to say b/c I do have an unusually amount of diseases and conditions. So many of them are painful in nature. So of course, pretty much every time we talk, I have a new medical problem. So what do I say? What do they really want to know? I get constant new diagnoses. Do I tell them? This week my bone density scan showed my osteoporosis is much worse. It has already been severe for years; quite a few fractures. That's a whole other story but point is, yet another new diagnosis.
Hank, bless your heart, I see you clarified in parentheses that you don't have the pain us guys have at all. Even like you, when care givers are super happy and love taking care of their loved ones as comes across loud and clear about you, they/you too go through their/your share of some type of pain, which may not even be related to giving care. I know you probably already know this but often, loving care givers become more ill if not physically, then emotionally etc., bc of the stress and role and not taking care of themselves.
Well that's my 1 cent for whatever it's worth! I recall a few good discussions about a similar subject and me sharing what I learned from the Joni Earickson and Friends seminar I went to in the early 1980's. She said people tend to distance themselves from the afflicted/handicapped b/c they fear more will be required in that relationship and, because it reminds them of their own mortality. I think that's why we're so careful and aware of how we give info about ourselves or our situations.
May you be incredibly blessed for the loving care you give to your precious wife! Keep mindful that you need care as well. Hope today goes especially well for you both. Warmest regards, Sunnyflower
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5 ReactionsI know well who Philip Yancey and Dr. Paul Brand are. My husband and I met Dr. Paul's wife Margaret, who has since passed, and Dr. C. Everett Koop at an ALM conference we were invited to. We have supported that Ministry for many, many years. I think the surgery doctor Brand invented to make a thumb out of stomach muscle was genius because it's impossible to do almost anything without the use of your thumb, especially making items for sale to earn a living.
I will have to check out the pain book one of these days.
I used to always say guilt, the gift that keeps on giving but now I can add pain to that I guess LOL! I once had a spray bottle with the label about guilt taped onto it to give people a chuckle.
Hang in and hang on brother! Sunnyflower
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2 ReactionsHi to all my Neuropathy Warrior Friends, I was helping my 6 year old grandson Noah all day with his remote KGN class. It is a great distraction, loads of fun, ( a 6 year old kept putting a garbage bag over his head during instruction), but I am so utterly exhausted that I cannot respond to anyone today. Know that I have read every post on this thread just now, and I just adore your thoughtfulness, caring, love, helpfulness........I am pooped. I can't say another thing!!! Lori Renee
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3 ReactionsDear Lori Renee, you shouldn't have to worry about the speed in which you are able to respond. I don't have any expectations from anyone here regarding whether or not they respond at all, or, the time in which it takes them to if they do. It's very considerate for you to let people know but I thought we already have the understanding that we are greatly limited due to our circumstances. Sometimes it can take even months for some to reply or get active again as I've seen and was true for me. I too have that concern that if I am absent for any given time and haven't replied to a post sent to me specifically whether new, private or as a reply, that someone may feel neglected or offended. I hope and pray no one will. We've been talking about this very recently. I think everyone is probably on the same page. I'm so happy you got the time w/ your grandson. I love the name Noah! I've often told people that my grandkids are an anti-depressant!! Take care of yourself, listen to your body and rest it if you need to, guilt free!! All the best, Sunnyflower 😚 🥱
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2 Reactions@lorirenee1 @sunnyflower @rwinney @jesfactsmon. et all
I'm sorry to have been out of the loop for a couple of days. I'm trying to wade through a ton of messages. I know what you mean when asked how you're doing. Do they really want to know? I generally go on the assumption that it's just an automatic extension of hello, and I reply with what's actually a lie - fine or OK. I try not to ask how someone is unless I'm serious about wanting to listen to their truth.
Thank you all for the kind things you've said to me. My self esteem, guilt, shame, self-worth... issues make it hard for me to believe that you really mean what you're saying, and my internal, unspoken response is "Yeah right. If you knew everything about me you wouldn't say those things." Or, I think, "I don't deserve it." I talked with David, my therapist, about this on Monday, specifically about what you wrote, Hank. I'm humbled. I have difficulty believing that I could inspire anyone.
This is something that's been true for me all my life. I've always been self-effacing and self-deprecating, finding it hard to accept compliments. And this chronic neuropathy pain totally messes with it. I just tapered off Imipramine, which had lowered my pain range from 5-8 down to 2-4. It was too good to last. The past few months it's had no effect on the pain. Yet another failed medication. The only thing I have now is ms contin, and my doctor won't increase the dose to a level that actually relieves the pain. I take less than my prescribed dosage so that when the pain is 8 or 9, I have spare pills that I can dip into. I took one of the spares last night, and will probably do it again tonight. I've never exceeded my prescribed total daily dose. I'm hanging on until I know the outcome of my back surgery on the 24th. If it doesn't reduce the pain, I'm going to have a discussion with my doctors about raising my morphine dose. So what if I'm addicted to it. If I were 20, that would be a different story, but at 70, if a medication gives me pain relief, I ought to be able to take enough to do the job - within reason, of course.
I did read your post, Hank, about cleaning out the s**t from my past. I've resolved a lot of it by now, and pretty much done any forgiving that was called for. Trouble is, the past informs the present. It colors today's and tomorrow's choices. Trauma doesn't just go away. Neither do all of the good life experiences. (My own take on it with the help of some good counsel)
And pain really colors our thinking. For me, this pain hit in the middle of mental ill-health recovery, and depression partners with pain. They feed off each other, making treatment a tough challenge.
Gotta quit so I can scroll through the rest of the 75 messages in my inbox.
Thank you all for your encouragement.
Jim
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2 Reactions@sunnyflower Aw, Sunny, so sweet! I just saw this from you, not sure how I didn't see it yesterday. Now I have already posted a private message to you this morning, but to your message here I just want to say, I totally understand what you mean. Some people do find it difficult discussing other's ailments and probably some ARE somewhat afraid to be asked to help out in some way. And in fairness to them, I myself have been more than once, held as a captive audience to some loquacious soul who just could not bring themselves to stop talking about their ailments, ENDLESSLY, and most likely some of those who are reluctant to discuss someone else's illnesses has also been in that situation at some point in time.
I am so happy for you and others like you who have found a place at Mayo Connect where they can freely discuss their health issues and know that those on the hearing end are receptive and sympathetic, and want to know about what you are experiencing. After all, if they weren't, why would they stay? It's wonderful to know that those who are listening to you are doing it solely because they want to. I'm here, first and foremost, to be of service to my wife, and always am trying to learn anything that might help her with her neuropathy. That is why I started. But coming to know so many great people here has kind of brought me out of my shell. Linda notices it a lot. She is grateful for how much more conversational Connect has made me with her. I never belonged to any sort of chat room before (and this is so much more than just a chat room) and for me it seems kind of miraculous. One thing's for sure, I sure have a challenge on my hands now getting everything done I need to get done. I devote a lot of time to Connect, love it, but think I should get more of a handle on setting aside times for all my other stuff. Okay, enough blather, take care! Hank
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5 Reactions@sunnyflower @lorirenee1 I agree with Sunny, no response needed if you can't be here or have other things that need doing. And if you are reading posts but are too tired to reply, just hitting the little like button, i.e. ❤, if you can is enough to let the person know you cared enough to read it. I find that alone to be heart warming, it's sweet. But if you ain't here, it's no crime, we will just be thrilled when we see you back again. Hank
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4 Reactions@jimhd Oh Jim, my good good friend. I too did have the self loathing. I had it for years and years. I think I finally got rid of almost all of it by age 36 in 1988. What helped me was first, of course, finding God at 23. Next, meeting Linda, my resident therapist, was instrumental in figuring out who I was as a human being. The next Big Thing was the inner child work done around 1987-88 or so. That is the point where I was able to disarm the loathing at my core. Actively giving love to my inner child (as airy-fairy new agey as it sounds) was the most profound thing that I was ever changed by so quickly. I bet it didn't take but a few weeks, and really just a few key days or instances, to dismantle the driver of the loathing. I can't put into words what the essence of it was, maybe it was the fact that my inner self interpreted my allowing it to be hurt originally as an acknowledgement that I was unworthy of love. I don't know. I do know that being liberated from that self loathing was the biggest move toward mental health I ever made in so short a time.
Jim, my words here will not help you, I know. I know you have tried everything you know to try. You have to find your own answers ultimately. All I hope to convey is that it is possible to get to the light at the end of the tunnel. Just keep your hope alive if you can, and keep yourself alive while you are at it. Best, Hank
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2 ReactionsHey y'all, sorry to be clogging up the airwaves so much here. I am signing off for a while, give someone else a chance to rant.😉
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2 Reactions@sunnyflower @jesfactsmon @jimhd @rwinney and to every Neuropathy Warrior!!!! I hereby give permission to all of you to just send hearts when you are too tired to post!!!! And if we miss a day, or two, or three, we will come back when we are ready. We are sick people!!!!! Jim, I can only imagine your message box. Holy Cow. And Jim, you do inspire everyone. You are just the best!!! Love to all, and thanks for your forgiveness in my not posting when too tired or in too much pain. OY. Love, Lori
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