Neuropathy Medications

@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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@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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@jimhd Jim, you are becoming for me one of the most inspiring people I never met. I am just in absolute mind numbing awe of what you have faced, especially the last 15-20 years. I have never known someone who has dealt with your particular set of conditions, not even close. If I had a hat on it would come off at this moment to you. You are just the greatest, most awe-inspiring person. I really appreciate hearing what you have to say about anything, your life and what you face, how you overcome adversity. Like seriously monumental adversity. I am glad you are a survivor and hope you remain on this planet for as long as God intends for you to. My best, good friend, Hank

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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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HI Guys, I didn't know quite where to write a continuation on the subject of putting on the smile to mask our pain that several of us talked about recently. But my husband brought some things to mind that I had not included.
We have a lot of grandkids so they make me smile. They are anti-depressants, so precious, so cute and such a welcome distraction from my pain. Distraction is the key word! It works better than Gabapentin and lidocaine w/ zero unwanted side-effects. So when my adult kids see this they think I'm fine.
Over 28+ years we have paid thousands of dollars to hire people to help us and myself. I have 4 healthy kids who could help. Two falls ago, one daughter said that she talked to my other daughter about taking turns helping me out every other week. I said that would be great. I was surprised! I had not asked for it. I didn't hear anything for months. Then the daughter who said this to me told me that it was mentioned that they (I know she was alluding to my other daughter), didn't want to enable me. Well shut the front door. Are they kidding me? I am stoic and push through to the point of being a detriment to myself!!!!!!!!
So the next time the daughter who spoke to me first came over, I told her I felt she/they put me in the position to have to validate myself and had her take a look at my Medical Conditions list that I had printed from my Kaiser Permanente chart. The list of my diseases and conditions is so long that almost 100% of my medical providers have told me that it's either the longest list they've seen or one of the longest list they've seen. I tell them they're interfering w/ my denial! Anyway, she didn't even say oh, wow, or anything. It really hurt (understatement)! Some time after that I asked her about that and told her it really hurt me. She barely responded.
Then, probably about two months after that, I had the same sit down w/ my other daughter, whom, the first had alluded to as being the one who said they don't want to enable me. And beyond belief, after looking at my list, she didn't say a word either. It confounds my mind, These daughters tell me how much they love me all the time. I don't get it. It hurts. I do not ask for help and they know we hire people! I'm talking about easy stuff. We are clean and neat! I know they are very busy but see they have time for what they want to do.
They are genuinely great girls and do a lot of ministry and service to others. They celebrate me on my birthday, Christmas and Mother’s Day. I don’t get it. My boys would help if I asked but I rarely do. It’s more girl help that I need.
My husband says that people believe what they see more than what they hear. So if I go out of the house and look nice, they think I’m fine. If on the rare occasion I put on make-up, I get compliments. Little do they know it took me over 2 hours to put it on b/c of my shaking hands and, that I was in bed under ice gels on my knees and a heating pad when doing it! I am a very congenial warm person, always reaching out, always w/ a smile. But I also have people who say to me, “You’re really hurting aren’t you?” so those who want to must see it in spite of my smile.
I was wondering if any of your partners/spouses have gone to bat for you and if so, would you please explain if you are comfortable doing so? There have been times I would really like mine to go to bat for me but he is quiet and non-confrontational.
Thanks guys. My prayer for you all is comfort, peace, healing and ZERO pain!!!! Blessings, Sunnyflower

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HI Guys, I didn't know quite where to write a continuation on the subject of putting on the smile to mask our pain that several of us talked about recently. But my husband brought some things to mind that I had not included.
We have a lot of grandkids so they make me smile. They are anti-depressants, so precious, so cute and such a welcome distraction from my pain. Distraction is the key word! It works better than Gabapentin and lidocaine w/ zero unwanted side-effects. So when my adult kids see this they think I'm fine.
Over 28+ years we have paid thousands of dollars to hire people to help us and myself. I have 4 healthy kids who could help. Two falls ago, one daughter said that she talked to my other daughter about taking turns helping me out every other week. I said that would be great. I was surprised! I had not asked for it. I didn't hear anything for months. Then the daughter who said this to me told me that it was mentioned that they (I know she was alluding to my other daughter), didn't want to enable me. Well shut the front door. Are they kidding me? I am stoic and push through to the point of being a detriment to myself!!!!!!!!
So the next time the daughter who spoke to me first came over, I told her I felt she/they put me in the position to have to validate myself and had her take a look at my Medical Conditions list that I had printed from my Kaiser Permanente chart. The list of my diseases and conditions is so long that almost 100% of my medical providers have told me that it's either the longest list they've seen or one of the longest list they've seen. I tell them they're interfering w/ my denial! Anyway, she didn't even say oh, wow, or anything. It really hurt (understatement)! Some time after that I asked her about that and told her it really hurt me. She barely responded.
Then, probably about two months after that, I had the same sit down w/ my other daughter, whom, the first had alluded to as being the one who said they don't want to enable me. And beyond belief, after looking at my list, she didn't say a word either. It confounds my mind, These daughters tell me how much they love me all the time. I don't get it. It hurts. I do not ask for help and they know we hire people! I'm talking about easy stuff. We are clean and neat! I know they are very busy but see they have time for what they want to do.
They are genuinely great girls and do a lot of ministry and service to others. They celebrate me on my birthday, Christmas and Mother’s Day. I don’t get it. My boys would help if I asked but I rarely do. It’s more girl help that I need.
My husband says that people believe what they see more than what they hear. So if I go out of the house and look nice, they think I’m fine. If on the rare occasion I put on make-up, I get compliments. Little do they know it took me over 2 hours to put it on b/c of my shaking hands and, that I was in bed under ice gels on my knees and a heating pad when doing it! I am a very congenial warm person, always reaching out, always w/ a smile. But I also have people who say to me, “You’re really hurting aren’t you?” so those who want to must see it in spite of my smile.
I was wondering if any of your partners/spouses have gone to bat for you and if so, would you please explain if you are comfortable doing so? There have been times I would really like mine to go to bat for me but he is quiet and non-confrontational.
Thanks guys. My prayer for you all is comfort, peace, healing and ZERO pain!!!! Blessings, Sunnyflower

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