1. < Neuropathy
Mentor

Covid delays my Mayo Pain Rehab hope

Posted by Rachel, Volunteer Mentor @rwinney, Jun 12, 2020

I received a call from my Mayo Clinic Pain Rehabilitation nurse today. She was informing me of Florida's spike in the virus and the reinforced travel rules from state to state. Meaning, because I'm coming from NY, I would be forced to self quarentine upon arrival in FL for 14 days before beginning the program. I'm scheduled to fly out this Wed and start rehab Thursday. I'm now penciled in for September 28th with hope that Covid does not dictate that date as it did my previous 2 dates back to February. Very disappointing.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 13, 2020
In reply to @lorirenee1 "@rwinney Hi Rachel, I am so sorry your pain rehab at Florida's Mayo had to be..." + (show)
@lorirenee1

@rwinney Hi Rachel, I am so sorry your pain rehab at Florida's Mayo had to be postponed. This Covid is messing up such important things, besides being so dangerous in itself. Of course, the idiot young adults in Florida are out and about like nothing is wrong. Leave it to young folks to feel invincible, and not wear masks, keep distant from eachother, etc. I am afraid that here in Illinois, our numbers of Covid patients will rise as things open up as well. Anyway, I felt so bad when I read your post. I do not even know what to say to you. I am here. That is what I want to say. I am here if you want to cry, laugh, tell dirty jokes ( I love them), or whatever. Also, private message me any time, and I will answer. I am your fellow warrior in this terrible disease. I will post about in the Covid is Messing With my Trial Discussion, for updates, but in a nut shell, I do think my feet feel somewhat better today. Talking to my sweet ABBOTT rep today, to adjust my foot IPad. Am I bionic now? Like a Jewish Wonder Woman? It must be the chicken soup in the wires that is helping? Thinking of you, my Rachel. Hang in. I am here to listen. Love, Lori

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@lorirenee1 Thank you so much Lori. I can always count on you for a good laugh! Thanks for making me smile. You are special. 😊
Please keep your good news coming ...love to hear it. Have a good day and keep talking to those feet and tell them that they are going to get better. 💕

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 13, 2020
In reply to @jesfactsmon "Wow this is disconcerting. It is truly mind-boggling how many things have been turned upside down..." + (show)
@jesfactsmon

Wow this is disconcerting. It is truly mind-boggling how many things have been turned upside down by Covid19. We are a social species and Covid affects that socialness right at its roots. Rachel I can only add my own sympathy to that of the others who have posted already. As you already said, it's obviously meant to be. We can't keep from our plans being unexpectedly and unceremoniously axed sometimes, all we can do is try our best and leave the results in God's hands. Hang in there and best to you from us both, Hank & Linda

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@jesfactsmon Thank you Hank and Linda for your kind words of support. I hope Linda is hanging in with some better moments here and there, during her struggles. My best to you both.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jun 13, 2020

@rwinney What a bummer. If you are like me, it takes me a long time to get my mind in the right place to actually enroll in that type of program. I waft back and forth. Do I really need it? Am I deserving ? Then I have to announce to friends and family re:decision, then delay. This is more than just a bummer. It takes so much to say “Yes, I need this, I want this, I am going.”

I believe this is just the way of the world right now. You didn’t cause this. It is not a sign that the program is not for you. Try not to do this to yourself. Just 10 deep breaths, some self-compassion and a wonderful few minutes of meditation.

May you be free of discord and unhappiness.
Chris

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 13, 2020
In reply to @artscaping "@rwinney What a bummer. If you are like me, it takes me a long time to..." + (show)
@artscaping

@rwinney What a bummer. If you are like me, it takes me a long time to get my mind in the right place to actually enroll in that type of program. I waft back and forth. Do I really need it? Am I deserving ? Then I have to announce to friends and family re:decision, then delay. This is more than just a bummer. It takes so much to say “Yes, I need this, I want this, I am going.”

I believe this is just the way of the world right now. You didn’t cause this. It is not a sign that the program is not for you. Try not to do this to yourself. Just 10 deep breaths, some self-compassion and a wonderful few minutes of meditation.

May you be free of discord and unhappiness.
Chris

Jump to this post

@artscaping Perfectly stated Chris. Thank you for understanding and encouraging.

REPLY
lorirenee1 | @lorirenee1 | Jun 13, 2020
In reply to @rwinney "@lorirenee1 Thank you so much Lori. I can always count on you for a good laugh!..." + (show)
@rwinney

@lorirenee1 Thank you so much Lori. I can always count on you for a good laugh! Thanks for making me smile. You are special. 😊
Please keep your good news coming ...love to hear it. Have a good day and keep talking to those feet and tell them that they are going to get better. 💕

Jump to this post

@rwinney With you in spirit, lady. Always! Lori

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Jun 15, 2020

@rwinney Disappointed. A bit angry. Sad. Pain on top of pain. Uncertain. Rethink. Recalibrate. Process.

At least those are some of the thoughts I'd be having if I were in your place, Rachel. So many of us are getting bounced around right now. It can be really frustrating to have the plans laid so carefully, only to have it all screwed up. I'm surely sorry that your life has been put on hold. I suppose that if the 14 day isolation would be required in September, you could make that happen. Kind of hard to do it at the last minute.

Is there a link to information about the chronic pain clinic you're going to (eventually)? Do you have to be off opioids or narcotics before you go?

This will be a summer to remember, even if you want to forget it. I was scheduled for an elective surgery this spring, and hoped to be recovered enough to take care of my house and yard. If the doctor tells me that I'm cleared for the surgery, by now I don't want to have it done until the end of September, when I can afford to be out of circulation for up to 6 weeks. Of course, things could change several times between now and then. Waiting, I believe, doesn't come naturally to most of us. It takes effort, for sure. This year may be remembered, among other things, the year of waiting.

Doing okay? You know you have a ton of support here. Forgive us if we say something unhelpful. (It's almost guaranteed to happen.) We mean well.

Rest and take care of yourself.

Jim

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 15, 2020

@jimhd Here is the link which explains the program:

https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

I'm happy to hear from you! It means alot to me because I read your stories, trials and tribulations and understand you and many others here are a testament of strength and courage. I do gravitate to Connect for hope, direction, reinforcement, support. Thank goodness I have you all and thank you Jim for articulating the process I went through/am going through, so well....validation that I'm not alone in this mess.

My mind set has evolved, yet again, and I am strategizing my next move. While I wait for 90 days... I had already had a plan for when I returned home, from Mayo July 10th, to have a 2nd EMG/Nerve Conduction Study. It's been over 2 years and I feel like it should simply be ruled out for possible further developments...come what may. In January, when I visited my neurologist for botox, I broke down about increasing pain, debilitation and frustration. He ran my blood again to rule out obvious things but, did not really listen to me or conclude with much. Getting a 2nd option has been long on my mind as my current Dr does not particularly check all my boxes. So, HE actually set me up with his colleague to be re-tested (he does not perform EMG/Nerve test) and also acknowledged that his colleague has better bedside manner and communication skills and maybe more my speed. Fair. Kudos to him on that.

I debated whether or not to go through with the July test and 2nd opinion, after returning from Mayo, and had it as plan B if my trip still left me curious. If not, I planned on cancelling altogether. Things possibly do happen for strange reasons and may or may not be meant to be. Time only tells.

As far as Mayo Rehab...I have 3 predominant reasons for going.

1. Tackle opioids. Wean off and allow my body (and Mayo) to prove me wrong about needing them (I'd love nothing more). Hyperalgesia can be caused by SFN or opiods therefore, I need to be proven and understand what's what.

2. Further identify my condition and place a concluded diagnosis to the chaos, unpredictable and tormenting pains and agitations in my body. (Even if nothing further will change any of it. I just want to know).

3. To receive psychological assistance and understanding of the re-mapped life that illnesses/diseases have created over the past 10 years and develop a physical game plan for my body within it's own means. I can't seem to find the proper balance physically. Mentally...well, that all depends on the day quite honestly.

Distraction is something that I almost beg for. It, along with hydro and THC are the things that get me through to the best of my abilities. My family and my house and yard! I've been making more of a conscious effort to create my own happiness by creating human encounters. Sounds funny but valid. With Covid lifting a bit in my area, it's been more attainable. My yard....I love it so and do as much as my body allows in it. Otherwise, I just sit back and enjoy my and my husband's hard work.

At my age I'm just not ready to settle, be held back, be this lonely because all my friends work and are busy raising children. My available relatives are all older with their own health issues (that I cant help them with). My children are grown because I started so young. My 40's really sucked with corneal disease kicking off my 40th year then downhill from there. Im a gluton for punishment... typing this much because my eyes pay the price. (so, forgive my typos). Really bothersome but, I continue to work on ME everyday. That's all I can do. That's all any of us can do.

Well Jim, nice chatting with you as always. Thanks for being there. I'm thinking you are dominating your yard today despite your obstacles!!! Good mental and physical release....You are THE MAN!!

(Dont get jealous John @johnbishop, you know how I feel about you).

Onward and upward! Enjoy your day!!
Rachel

REPLY
3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jun 15, 2020
In reply to @rwinney "@jimhd Here is the link which explains the program: https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691 I'm happy to hear from you!..." + (show)
@rwinney

@jimhd Here is the link which explains the program:

https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

I'm happy to hear from you! It means alot to me because I read your stories, trials and tribulations and understand you and many others here are a testament of strength and courage. I do gravitate to Connect for hope, direction, reinforcement, support. Thank goodness I have you all and thank you Jim for articulating the process I went through/am going through, so well....validation that I'm not alone in this mess.

My mind set has evolved, yet again, and I am strategizing my next move. While I wait for 90 days... I had already had a plan for when I returned home, from Mayo July 10th, to have a 2nd EMG/Nerve Conduction Study. It's been over 2 years and I feel like it should simply be ruled out for possible further developments...come what may. In January, when I visited my neurologist for botox, I broke down about increasing pain, debilitation and frustration. He ran my blood again to rule out obvious things but, did not really listen to me or conclude with much. Getting a 2nd option has been long on my mind as my current Dr does not particularly check all my boxes. So, HE actually set me up with his colleague to be re-tested (he does not perform EMG/Nerve test) and also acknowledged that his colleague has better bedside manner and communication skills and maybe more my speed. Fair. Kudos to him on that.

I debated whether or not to go through with the July test and 2nd opinion, after returning from Mayo, and had it as plan B if my trip still left me curious. If not, I planned on cancelling altogether. Things possibly do happen for strange reasons and may or may not be meant to be. Time only tells.

As far as Mayo Rehab...I have 3 predominant reasons for going.

1. Tackle opioids. Wean off and allow my body (and Mayo) to prove me wrong about needing them (I'd love nothing more). Hyperalgesia can be caused by SFN or opiods therefore, I need to be proven and understand what's what.

2. Further identify my condition and place a concluded diagnosis to the chaos, unpredictable and tormenting pains and agitations in my body. (Even if nothing further will change any of it. I just want to know).

3. To receive psychological assistance and understanding of the re-mapped life that illnesses/diseases have created over the past 10 years and develop a physical game plan for my body within it's own means. I can't seem to find the proper balance physically. Mentally...well, that all depends on the day quite honestly.

Distraction is something that I almost beg for. It, along with hydro and THC are the things that get me through to the best of my abilities. My family and my house and yard! I've been making more of a conscious effort to create my own happiness by creating human encounters. Sounds funny but valid. With Covid lifting a bit in my area, it's been more attainable. My yard....I love it so and do as much as my body allows in it. Otherwise, I just sit back and enjoy my and my husband's hard work.

At my age I'm just not ready to settle, be held back, be this lonely because all my friends work and are busy raising children. My available relatives are all older with their own health issues (that I cant help them with). My children are grown because I started so young. My 40's really sucked with corneal disease kicking off my 40th year then downhill from there. Im a gluton for punishment... typing this much because my eyes pay the price. (so, forgive my typos). Really bothersome but, I continue to work on ME everyday. That's all I can do. That's all any of us can do.

Well Jim, nice chatting with you as always. Thanks for being there. I'm thinking you are dominating your yard today despite your obstacles!!! Good mental and physical release....You are THE MAN!!

(Dont get jealous John @johnbishop, you know how I feel about you).

Onward and upward! Enjoy your day!!
Rachel

Jump to this post

Ah Rachel @rwinney my cyber friend, not a jealous bone in my body 🙂 Some happy songs for you...

Red Roses Too: https://www.youtube.com/watch?v=AtWBqB0_aTA
Follow That Dream: https://www.youtube.com/watch?v=zD0xsv2BHFw
Janelle Monáe - Tightrope: https://www.youtube.com/watch?v=pwnefUaKCbc

REPLY
1 reply
Hank | @jesfactsmon | Jun 15, 2020
In reply to @rwinney "@jimhd Here is the link which explains the program: https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691 I'm happy to hear from you!..." + (show)
@rwinney

@jimhd Here is the link which explains the program:

https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

I'm happy to hear from you! It means alot to me because I read your stories, trials and tribulations and understand you and many others here are a testament of strength and courage. I do gravitate to Connect for hope, direction, reinforcement, support. Thank goodness I have you all and thank you Jim for articulating the process I went through/am going through, so well....validation that I'm not alone in this mess.

My mind set has evolved, yet again, and I am strategizing my next move. While I wait for 90 days... I had already had a plan for when I returned home, from Mayo July 10th, to have a 2nd EMG/Nerve Conduction Study. It's been over 2 years and I feel like it should simply be ruled out for possible further developments...come what may. In January, when I visited my neurologist for botox, I broke down about increasing pain, debilitation and frustration. He ran my blood again to rule out obvious things but, did not really listen to me or conclude with much. Getting a 2nd option has been long on my mind as my current Dr does not particularly check all my boxes. So, HE actually set me up with his colleague to be re-tested (he does not perform EMG/Nerve test) and also acknowledged that his colleague has better bedside manner and communication skills and maybe more my speed. Fair. Kudos to him on that.

I debated whether or not to go through with the July test and 2nd opinion, after returning from Mayo, and had it as plan B if my trip still left me curious. If not, I planned on cancelling altogether. Things possibly do happen for strange reasons and may or may not be meant to be. Time only tells.

As far as Mayo Rehab...I have 3 predominant reasons for going.

1. Tackle opioids. Wean off and allow my body (and Mayo) to prove me wrong about needing them (I'd love nothing more). Hyperalgesia can be caused by SFN or opiods therefore, I need to be proven and understand what's what.

2. Further identify my condition and place a concluded diagnosis to the chaos, unpredictable and tormenting pains and agitations in my body. (Even if nothing further will change any of it. I just want to know).

3. To receive psychological assistance and understanding of the re-mapped life that illnesses/diseases have created over the past 10 years and develop a physical game plan for my body within it's own means. I can't seem to find the proper balance physically. Mentally...well, that all depends on the day quite honestly.

Distraction is something that I almost beg for. It, along with hydro and THC are the things that get me through to the best of my abilities. My family and my house and yard! I've been making more of a conscious effort to create my own happiness by creating human encounters. Sounds funny but valid. With Covid lifting a bit in my area, it's been more attainable. My yard....I love it so and do as much as my body allows in it. Otherwise, I just sit back and enjoy my and my husband's hard work.

At my age I'm just not ready to settle, be held back, be this lonely because all my friends work and are busy raising children. My available relatives are all older with their own health issues (that I cant help them with). My children are grown because I started so young. My 40's really sucked with corneal disease kicking off my 40th year then downhill from there. Im a gluton for punishment... typing this much because my eyes pay the price. (so, forgive my typos). Really bothersome but, I continue to work on ME everyday. That's all I can do. That's all any of us can do.

Well Jim, nice chatting with you as always. Thanks for being there. I'm thinking you are dominating your yard today despite your obstacles!!! Good mental and physical release....You are THE MAN!!

(Dont get jealous John @johnbishop, you know how I feel about you).

Onward and upward! Enjoy your day!!
Rachel

Jump to this post

Rachel, first of all I did not see a single typo.

I liked your gameplan for what you wanted out of the pain program. Maybe in the intervening 90 days you will refine it further and figure out some other things you are looking for answers to. Keep looking at the bright side, you seem to have a knack for that. I know what you mean about the therapeutic value of yard work. Sadly my job took us away from a beautiful yard that was of such a profound value to Linda. I have rued the day we sold that house back in '06. All of her health issues have developed since then. Coincidence? Hmmmmm.

Oh and I am glad Jim is "The Man". I certainly couldn't deal with that kind of pressure from TWO women! 😉
Hank

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Jun 15, 2020
In reply to @johnbishop "Ah Rachel @rwinney my cyber friend, not a jealous bone in my body :-) Some happy..." + (show)
@johnbishop

Ah Rachel @rwinney my cyber friend, not a jealous bone in my body 🙂 Some happy songs for you...

Red Roses Too: https://www.youtube.com/watch?v=AtWBqB0_aTA
Follow That Dream: https://www.youtube.com/watch?v=zD0xsv2BHFw
Janelle Monáe - Tightrope: https://www.youtube.com/watch?v=pwnefUaKCbc

Jump to this post

@johnbishop Nailed it!!! I listened to all 3 with a smile. I'm impressed with the Janelle Monae selection! Wow, I loved it, right up my alley. Fun fact....my Dad was a shoe in for Elvis back in the day...handsome. Grew up listening to him. Louis...ahhh, that man sings What A Wonderful World in my wedding video and closes it out with some very tender dancing. Love it all. Thank you John for lifting me up. You are priceless.😊

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