still working with small fiber neuropathy

Posted by swartzki @swartzki, Jan 13, 2020

Just wondering if any of you out there with SFN are still able to work. The fatigue and flu-like feeling I have are crippling,but I'm trying to keep my job. Do any of you experience the flu-like feeling? Is there anything that can help?

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@johnbishop

@jimhd, @swartzki, @rwinney and others. Not sure if you've seen this piano duo but I have been fortunate enough to have seen someone playing the piano in the Rochester Mayo Clinic Atrium many times when I've been early for appointments.

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@johnbishop That was a great duo. It looked like they were having fun.

Jim

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@lioness

@jimhd I use to sing solo,s in church all the time we did cantata,s 2xa year. If we could get together we would have a great time with music Have you read Cayce then? I saw you gave me a like in my reply At night here on Daystar I listen to reflection so soothing the music, background and scripture the have put together .

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@lioness @swartzki

I don't follow Cayce. I guess I have another thing to Google.

I was a music pastor for 25 years, then I slid over into a pastor role, but it was a small church in a really small, very remote town of 247, so I still did the job of music pastor. My father and his parents were ordained before I was, so my whole life has been centered around the church. I played the piano, organ and vibraharp. The church we attend doesn't have an organ, which is their loss, and on Sunday mornings we have a band and singers. Often someone plays the piano. I tolerate the music for the most part. I won't comment further on that.

Some of the people who come on Sunday evenings frequently express their appreciation for the music I select and play. I also play the piano for the communion service once a month. The sanctuary piano is a 9' Steinway, wonderful to play.

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@jimhd and @lioness the video was from 2008. I saw on a Sharing Mayo Clinic - A Bite of Life... which gives a little more information about the couple.

https://sharing.mayoclinic.org/2009/04/23/a-bite-of-life/
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@jimhd

@lioness @swartzki

I don't follow Cayce. I guess I have another thing to Google.

I was a music pastor for 25 years, then I slid over into a pastor role, but it was a small church in a really small, very remote town of 247, so I still did the job of music pastor. My father and his parents were ordained before I was, so my whole life has been centered around the church. I played the piano, organ and vibraharp. The church we attend doesn't have an organ, which is their loss, and on Sunday mornings we have a band and singers. Often someone plays the piano. I tolerate the music for the most part. I won't comment further on that.

Some of the people who come on Sunday evenings frequently express their appreciation for the music I select and play. I also play the piano for the communion service once a month. The sanctuary piano is a 9' Steinway, wonderful to play.

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@jimhd I've been in church all my life and before I left PA I was our Pastors lay leader helped with communion and the Pastor couldn't carry a tune so he had me start songs 😂I love the Steinways good quality sound

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@johnbishop

@jimhd and @lioness the video was from 2008. I saw on a Sharing Mayo Clinic - A Bite of Life... which gives a little more information about the couple.

https://sharing.mayoclinic.org/2009/04/23/a-bite-of-life/

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@johnbishop Our hospitals also have grand pianos in the lobbies, but I've never played them.

Jim

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@jimhd

@johnbishop Our hospitals also have grand pianos in the lobbies, but I've never played them.

Jim

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@jimhd When I did solo,s we had a lady that could make the piano sing and like most pianist Dr she made me look good if I missed a beat My Senior building I life in has 2piano,s one a grand piano

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@lioness

@jimhd When I did solo,s we had a lady that could make the piano sing and like most pianist Dr she made me look good if I missed a beat My Senior building I life in has 2piano,s one a grand piano

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@lioness I've never liked playing solos. I don't know why it makes me so nervous. But it's always been a pleasure accompanying others, including my wife, who has a beautiful soprano voice. I don't usually get nervous playing background music or the occasional offertory. When I'm playing, I don't notice pain, except for my right thumb. I hurts when I play scales, reaching under my 2nd and 3rd fingers. I have the beginning of autonomic neuropathy, which I really hope will progress slowly. I guess it's peripheral polyneuropathy that is numbing my fingertips and face. Autonomic may be involved in my double vision and a few other places. It means that I need to be more careful with driving, standing up from a chair, staying upright while walking...

You were a true blessing to your pastor and congregation by sharing your gift of music with them. One of the compelling reasons for going on Sunday evenings is that I know that the music ministers to him. I'll keep going with or without pain, vision problems, depression, just for his sake. He's 59, and was diagnosed ten years ago with leukemia, and some of the treatments have been pretty rough for him, along with the 120 mile (each way) commute to the doctor. I think I probably sense more than others, the signs of depression and fatigue. Been there. Still there most days. It reminds me of the importance to King Saul having David come to play his string instrument. Music hath charms to soothe the savage breast.

Jim

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@jimhd

@lioness I've never liked playing solos. I don't know why it makes me so nervous. But it's always been a pleasure accompanying others, including my wife, who has a beautiful soprano voice. I don't usually get nervous playing background music or the occasional offertory. When I'm playing, I don't notice pain, except for my right thumb. I hurts when I play scales, reaching under my 2nd and 3rd fingers. I have the beginning of autonomic neuropathy, which I really hope will progress slowly. I guess it's peripheral polyneuropathy that is numbing my fingertips and face. Autonomic may be involved in my double vision and a few other places. It means that I need to be more careful with driving, standing up from a chair, staying upright while walking...

You were a true blessing to your pastor and congregation by sharing your gift of music with them. One of the compelling reasons for going on Sunday evenings is that I know that the music ministers to him. I'll keep going with or without pain, vision problems, depression, just for his sake. He's 59, and was diagnosed ten years ago with leukemia, and some of the treatments have been pretty rough for him, along with the 120 mile (each way) commute to the doctor. I think I probably sense more than others, the signs of depression and fatigue. Been there. Still there most days. It reminds me of the importance to King Saul having David come to play his string instrument. Music hath charms to soothe the savage breast.

Jim

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@jimhd Thank you Jim I got more out of it I think as I like helping people that's why I became a nurse .You will appreciate this.When I was a senior in school going for commercial course the last 3months I just knew I wanted to be a nurse I feel that was intervention for me 35 years later I retired but still give advice to seniors here I've only had 1surgery in my life God has been good to me I made him CEO of my life and never looked back

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@johnbishop

@jimhd, @swartzki, @rwinney and others. Not sure if you've seen this piano duo but I have been fortunate enough to have seen someone playing the piano in the Rochester Mayo Clinic Atrium many times when I've been early for appointments.

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So cute!

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@swartzki

Hey, Jim. My name is Kim. I am so thrilled that you are playing. I remember your wife reminding you how much the church enjoys it too. I love piano music. (Our church has gone to almost a full band. UGH!) You are doing such a great service for the Lord. I hope you feel good about that. And I'm happy it is bringing you personal joy! I'm trying to navigate this whole thing. I have to convince myself and can live with this. I hope I can find ways to serve as well.

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Hi, Kim @swartzki I was thinking about you in my prayer time this evening and wonder how life is going. You have some significant challenges to face, and I promised to be praying for you. My wife and I enjoy our acres in the country. We lease the pasture to our neighbors for their cattle and horses. I was noticing that there are 5 horses out there right now. We like getting to look at the animals without all of the work that goes with caring for them. I hope you find a way to continue enjoying your horse and home until the time is right to move to a new chapter in your life.

Blessings to you - and to those grandchildren.

Jim

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