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Covid delays my Mayo Pain Rehab hope

Neuropathy | Last Active: Jun 17, 2020 | Replies (30)

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@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

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Replies to "@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!..."

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

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

@rwinney Great to hear from you, Rachel. You're pretty amazing. What internal energy you have to keep going with all kinds of obstacles. Thanks for the link.

Yesterday... I always have a hard time remembering what I did the day before, which is why I write notes every night about the day. We went to the first church service in the morning, had lunch at Shari's, bought groceries and drove home. I tidied up the mess I'd made on the patio, getting plants ready to donate. The manager asked me to bring 20 pots, so I tried to put together an assortment. I found that I had 60 pots that need to go away. Hens and chicks, aloe "pepe", some sedum, jade plants and gasteria.

I was inspired by @sueinmn and @gingerw ,so I puttered around with rocks. I discovered some neat rocks around the house and barn that I had forgotten about, and since they served no purpose where they were, I loaded them into my wheelbarrow. I've been working on a rock pathway past the herb bed for way too long. I'm using limestone pavers I found on Craigslist for too much money, some 12" plain concrete pavers, rocks I've dug up in the pasture and a pile of rocks that I saw advertised as free. I drove way out in the boonies and found that a previous homeowner had made a pyramid of a mixture of rock. It was huge! I didn't measure it, but it was an 8 or 10' square base,going up to 6'. The woman really wanted to see them gone. I think I made 3 trips in my full size pickup, and my focus was to take ones that had a flat surface. A lot of them are of significant size and weight, and to work them into the path involves a lot of digging so the flat surface ends up in just the right place to be level.

I cleaned up the herb bed last week and pulled out a bunch of rocks that were visible when I planted the herbs, but had long since vanished as the herbs filled in the space (and went beyond its space, encroaching on the less vigorous ones). I found a large disc of granite that I think I picked up next to a river somewhere along 395 in California. Please don't report me to the Sierra Club. But everywhere we went, we picked up interesting rocks. I have a huge oblong black slab that I had to recruit my wife's family to lift it into the car. It's now in its 6th home, and (maybe) is in its final resting place, under a peony and daylillies, getting covered by succulents. That granite slab is now a stepping stone from the pathway to the back lawn. I don't know if my wife has seen it yet.

We used to take a spring drive in our old Suburban across the desert to enjoy the wildflowers - and to dig up rocks- I learned to take a hand truck along - through Lake county and Harney county. As our kids got into the teens, they opted out of the drive. But everywhere we go, there are bound to be some cool rocks, from the Oregon coast through the Willamette Valley, over the Cascade mountains, across the high desert in central Oregon and to the Idaho border where you can see the remnants of the Oregon trail.

I lived through the Beatles rock era, oblivious to the music because my family was the core of the church choir and orchestra everywhere we lived, and in choruses and bands and orchestra in school. If we listened to music at home, it was the music each of us made as we practiced a range of instruments. So maybe I'm compensating for missing that rock era by collecting rocks that might speak more to me than even a yellow brick road.

I've done what I seem to do too often - going on and on and on. But I do eventually come to the conclusion. And that's where I am right now.

Y'all enjoy your week and stay safe.

Jim