Covid may be messing with my DRG Trial

Posted by lorirenee1 @lorirenee1, May 15, 2020

Hi all, Last night, my pain doc's nurse called me to possibly schedule my DRG trial for next week, but that she was still working on some things. She said she would call me back today, and now, she just told me that Covid Guidelines make me too old to have my trial at this time, but was still "working on it," whatever that means. I am 68, and the cut off age in Illinois, due to Covid, is 65. Us older people are considered at risk, and most likely, I would imagine, docs don't want law suits. Meanwhile, the nurse says she is still calling me back today, and to keep hopeful. My pain doc still wants to do it, but the surgical wing follows the law. Meanwhile, the tears are coming like a turned on faucet. I just had a third of a marijuana gummy, because it seems to not only help pain, but mood. I could use that right now. It takes about an hour for the gummy to kick in. What a way to live. Pain, high, more pain, more marijuana……and now, I am too old for a trial under Covid law. I will keep everyone updated. This sucks. Lori Renee

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@jesfactsmon

Jim, I hope DRG becomes an incredible answer for you, Lori and others. I know my wife has occasional thoughts of taking matters into her own hands and ending the madness once and for all but fortunately for her (and me) these are fleeting, helped by her having periods of reduced pain levels from time to time, being 8-10 on the bad days but seemingly always getting a day with a fair bit of time spent in 2-4 land with brief periods of complete respite. As bad as it is for her she knows it could be worse, if from nothing other than hearing descriptions by fellow sufferers on Connect. I liked your statement elsewhere about how the words "chronic pain" do not begin to describe what this is all about. I pray that DRG can be a possible answer for sufferers of this pernicious, insidious torment.

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@jesfactsmon

Thank you, Hank. I've been following your account of Linda. I know that it's hard for my wife to put up with me and my issues. I try not to burden her down too much with the details, especially details about my mental health stuff. I don't know if a DRG is in my future, but as you well know, we do all we can to find something to numb the pain.

There are, of course, many kinds of pain. Suicide wasn't about the neurpathy pain – that didn't kick in until several years later. But I have to say, there have been times in the past few years when the thoughts of dying surfaced because I just wanted the pain in my feet to stop. I've practiced setting goals – things coming up that I didn't want to miss – and I promise myself that I will be safe until then. At first, it was promising to stay safe for one more day. Looking ahead gradually increased as time went on.

It's a big help to have the periodic days when the pain lessens. I don't experience that, but certain activities distract me from the pain – mostly when I'm working outside, planting and weeding, tending to my large yard and gardens. I'm waiting for a part for my riding mower. I haven't been able to use it yet this season, so I have to walk behind my self propelled mower. Walking is painful. But when I notice that my feet are hurting less, I try to focus on it, and savor the lack of pain.

And the time has come to prepare for bed. I dread lying down because that's when I hurt the most, but I don't have trouble going to sleep as a rule.

I hope Linda has a good day tomorrow. (I hope I'm remembering her name correctly.)

Jim

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@jimhd

@jesfactsmon

Thank you, Hank. I've been following your account of Linda. I know that it's hard for my wife to put up with me and my issues. I try not to burden her down too much with the details, especially details about my mental health stuff. I don't know if a DRG is in my future, but as you well know, we do all we can to find something to numb the pain.

There are, of course, many kinds of pain. Suicide wasn't about the neurpathy pain – that didn't kick in until several years later. But I have to say, there have been times in the past few years when the thoughts of dying surfaced because I just wanted the pain in my feet to stop. I've practiced setting goals – things coming up that I didn't want to miss – and I promise myself that I will be safe until then. At first, it was promising to stay safe for one more day. Looking ahead gradually increased as time went on.

It's a big help to have the periodic days when the pain lessens. I don't experience that, but certain activities distract me from the pain – mostly when I'm working outside, planting and weeding, tending to my large yard and gardens. I'm waiting for a part for my riding mower. I haven't been able to use it yet this season, so I have to walk behind my self propelled mower. Walking is painful. But when I notice that my feet are hurting less, I try to focus on it, and savor the lack of pain.

And the time has come to prepare for bed. I dread lying down because that's when I hurt the most, but I don't have trouble going to sleep as a rule.

I hope Linda has a good day tomorrow. (I hope I'm remembering her name correctly.)

Jim

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Thanks Jim. The best we can do in life is try our best to deal with our problems, take joy where we can find it and try not to hurt anyone else in the process. We are all dealt a hand of cards to play. I do not believe in luck but destiny which is another way of referring to God's plan. How someone manages to go through this (PN) without that belief and faith is a mystery to me. One must be a VERY strong person to do that. I don't want to get too preachy as that can really be annoying but I just want to say that I truly believe that nothing you go through in life is wasted, no pain, no effort, no anything, it is all for a reason even if we don't know the reason. And I would advise everyone to always keep going because (I know this sounds trite but here goes) when you think everything is lost and you are at your most desperate something can change very unexpectedly, sometimes for the better. Anyway, this is how my wife and I keep going in this crazy life. Our latest hope is for people like Lori with her experience with DRG and Rachel who is going to look for some answers in Florida this month. Best, Hank

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@jesfactsmon

Thanks Jim. The best we can do in life is try our best to deal with our problems, take joy where we can find it and try not to hurt anyone else in the process. We are all dealt a hand of cards to play. I do not believe in luck but destiny which is another way of referring to God's plan. How someone manages to go through this (PN) without that belief and faith is a mystery to me. One must be a VERY strong person to do that. I don't want to get too preachy as that can really be annoying but I just want to say that I truly believe that nothing you go through in life is wasted, no pain, no effort, no anything, it is all for a reason even if we don't know the reason. And I would advise everyone to always keep going because (I know this sounds trite but here goes) when you think everything is lost and you are at your most desperate something can change very unexpectedly, sometimes for the better. Anyway, this is how my wife and I keep going in this crazy life. Our latest hope is for people like Lori with her experience with DRG and Rachel who is going to look for some answers in Florida this month. Best, Hank

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@jesfactsmon Thanks, Hank, for your words of encouragement. I'm a retired pastor, retired because of mental health issues, and while I was in a brand new facility that's an outreach of a very good hospital, I woke up one morning with the word abandoned on my mind. I've been abandoned by a lot of people, but my first thought was that God is ever present, and would never leave me or forsake me. That awareness is foundational to my course of recovery, and to my life as a whole. We're blessed to have him always with us.

Jim

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@jimhd

@jesfactsmon Thanks, Hank, for your words of encouragement. I'm a retired pastor, retired because of mental health issues, and while I was in a brand new facility that's an outreach of a very good hospital, I woke up one morning with the word abandoned on my mind. I've been abandoned by a lot of people, but my first thought was that God is ever present, and would never leave me or forsake me. That awareness is foundational to my course of recovery, and to my life as a whole. We're blessed to have him always with us.

Jim

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I hear you Jim, and I am with you on knowing He is always right there.

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@jesfactsmon

I hear you Jim, and I am with you on knowing He is always right there.

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@jesfactsmon Hurray! My riding mower is up and running!

Jim

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@rwinney

@lorirenee1 Thank you my friend. One day closer to your June 11th date! 🌈🌟😁 Smiles all the way. XO

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@lorirenee1 I wish you the best of luck with your DRG trial tomorrow. Sending virtual hugs and positive thoughts your way for a successful outcome. 🍀
Be well~
Rachel

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@rwinney

@lorirenee1 I wish you the best of luck with your DRG trial tomorrow. Sending virtual hugs and positive thoughts your way for a successful outcome. 🍀
Be well~
Rachel

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@rwinney Rachel, thanks so much. Just got back from the trial about 15 minutes ago. way too soon to know anything. Area of lower back where wires were put in hurt. IPad for feet adjusted by Abbot rep, but it takes awhile to know what is up. Feet feel very contorted still, but pain seems less? I am so exhausted that i do not know for sure. Takes about 3 to 10 days to know if it will help. You will be at Mayo in a week. God, i hope they help you. You are just the kindest. I will write again…..Love to you, sweetest lady. Lori

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@lorirenee1

@rwinney Rachel, thanks so much. Just got back from the trial about 15 minutes ago. way too soon to know anything. Area of lower back where wires were put in hurt. IPad for feet adjusted by Abbot rep, but it takes awhile to know what is up. Feet feel very contorted still, but pain seems less? I am so exhausted that i do not know for sure. Takes about 3 to 10 days to know if it will help. You will be at Mayo in a week. God, i hope they help you. You are just the kindest. I will write again…..Love to you, sweetest lady. Lori

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😊

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@lorirenee1

@rwinney Rachel, thanks so much. Just got back from the trial about 15 minutes ago. way too soon to know anything. Area of lower back where wires were put in hurt. IPad for feet adjusted by Abbot rep, but it takes awhile to know what is up. Feet feel very contorted still, but pain seems less? I am so exhausted that i do not know for sure. Takes about 3 to 10 days to know if it will help. You will be at Mayo in a week. God, i hope they help you. You are just the kindest. I will write again…..Love to you, sweetest lady. Lori

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Lori you are in my and Linda's and many other's thoughts as you start this new journey. We are rooting for you to be benefited BIGTIME by this!!! You are brave, and you are a trailblazer. We are with you in spirit. You know we know how very hard this is for you. You know we know how much the pain that oppresses you saps the energy out of you and makes everything an unbelievable effort. If this produces positive results we will be SO SO SO happy for you. Get lots of rest and keep us posted when you can. All our best!

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@jesfactsmon

Lori you are in my and Linda's and many other's thoughts as you start this new journey. We are rooting for you to be benefited BIGTIME by this!!! You are brave, and you are a trailblazer. We are with you in spirit. You know we know how very hard this is for you. You know we know how much the pain that oppresses you saps the energy out of you and makes everything an unbelievable effort. If this produces positive results we will be SO SO SO happy for you. Get lots of rest and keep us posted when you can. All our best!

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@jesfactsmon @rwinney Hi Hank, Rachel, and all my fellow Neuropathy sufferers….First, Thanks for your kindness. Just that, lifts my spirits. I have been sleeping all day. Woke up with headache from the local anesthesia, and throbbing in lumbar spine, where wires were put thru the DRG nerve cells, close to the spine. No relief of feet pain yet. Perhaps, subtle differences. I can put my feet on the ground. I can never do that. My shoes feel less horrid. Just subtle change so far. As far as the procedure, the headache and lumbar spine pain are nothing at all, compared to foot pain. Very nothing in comparison. ABBOTT lab rep calls tomorrow, to adjust my foot ipad that controls each foot, and amps up or down, or whatever the hell they do. Gotta go back to sleep. That 's really it. I will keep you guys posted. Prayers will be welcome. God likes me. I know that……cause I love God. Love, Lori

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