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

@rwinney

@lorirenee1 Yes I'm still going. I begin the program June 18th. Getting closer! Also, good for you for being persistent with getting your trial. I've always preached to my kids that a closed mouth doesn't get fed.

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@rwinney Rachel, I am so glad you are still going!!!! You are living the example of a closed mouth does not get fed. You keep fighting, searching….WE HAVE TO!!!!!!!! I am just so glad you are going!!!!!!! MWA!!!! Lori Renee

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I'm delighted for you, @lorirenee1

Having passed through a long period of suicidal ideation myself, I know the feelings that accompany it. It's brutal. The brainache, hopelessness, emptiness. So many facets.

I have an appointment with a neurospecialist on the 11th, to move, possibly, toward a DRG implant. I'll be thinking of you, and praying that it will bring you relief. Chronic, intractable, 8-10 pain is hellish. Who can fully understand it until it's experienced? We don't wish it even on our enemies.

I remember the week of my SCS trial. It was euphoric! I had forgotten what it felt like not to be in so much pain. I trust that your trial will be the beginning of a new life with controlled pain. I'm certainly looking forward to reading all about it. In the meantime, while thoughts of suicide may intrude your mind, you now have a great goal to stay alive for.

But I don't want to make this note about death. I want it to be one of encouragement and celebration and support. Countdown from ten days!!

Jim

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@lorirenee1

Hi to all of my friends here. I just had to share excellent news. Thursday, June 11th, I am finally scheduled for my DRG trial. I am the poster child for "the squeaky wheel gets the grease!" I have made an utter pest of myself to get this trial, and finally, they were all sick of hearing me on the phone. I also realized I had political connections that I forgot about, and used them, ie., the President of Illinois Bone and Joint in Illinois, to get help. Clout works here in Illinois!!! I was finding myself drifting over to committing suicide sights, states in which Euthanasia is legal, etc., etc. I am in a dark place right now. If I did not know my real, happier self, I would be in big trouble right now. There is only so much pain I could take. Sensory pain nerves never shut off with me, and at about an 8-10 level, no exaggeration. Anyway, my fellow Neuropathy warriors….I am blessed to know that this is going to happen. I am blessed to feel I have such good people here. Stay safe, and I will keep everyone updated as I know more…..Love, Lori Renee

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Lori this is thrilling news! You come up in conversations between my wife and I periodically in relation to your hoped for DRG procedure and the frustration you have been having getting it scheduled. This really seems like it might be a breakthrough for you as well as many others hopefully including my Linda. We are so thankful that you are now on the road toward possible blessed relief and also many others waiting to hear your results now have a little more hope as well. Very very exciting news. Let's hope there is now an impending end to your desperation and suffering. God bless you!

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@jimhd

I'm delighted for you, @lorirenee1

Having passed through a long period of suicidal ideation myself, I know the feelings that accompany it. It's brutal. The brainache, hopelessness, emptiness. So many facets.

I have an appointment with a neurospecialist on the 11th, to move, possibly, toward a DRG implant. I'll be thinking of you, and praying that it will bring you relief. Chronic, intractable, 8-10 pain is hellish. Who can fully understand it until it's experienced? We don't wish it even on our enemies.

I remember the week of my SCS trial. It was euphoric! I had forgotten what it felt like not to be in so much pain. I trust that your trial will be the beginning of a new life with controlled pain. I'm certainly looking forward to reading all about it. In the meantime, while thoughts of suicide may intrude your mind, you now have a great goal to stay alive for.

But I don't want to make this note about death. I want it to be one of encouragement and celebration and support. Countdown from ten days!!

Jim

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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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@lorirenee1

@rwinney Rachel, I am so glad you are still going!!!! You are living the example of a closed mouth does not get fed. You keep fighting, searching….WE HAVE TO!!!!!!!! I am just so glad you are going!!!!!!! MWA!!!! Lori Renee

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

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@jesfactsmon @jimhd Hi Hank, Hi Jim! Thanks so much for your good wishes. I hope and pray that my experience on June 11th with the DRG will help you guys! I am hoping to post daily during my trial week, to help you. Please remember though, that each of us are different. Man. I do not want to add insult to injury! Last night I think I overdosed on marijuana, somehow, and it was frightening. Pain was not being controlled, and I wound up with too much in my system. No way to live. I just cannot wait to do this thing. HOLY CRAP!!!!! I tend to swear when I am excited. This is a joyful thing!!!! Thanks guys, and Jim, let me know what your doc says. Lori Renee

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@lorirenee1

@jesfactsmon @jimhd Hi Hank, Hi Jim! Thanks so much for your good wishes. I hope and pray that my experience on June 11th with the DRG will help you guys! I am hoping to post daily during my trial week, to help you. Please remember though, that each of us are different. Man. I do not want to add insult to injury! Last night I think I overdosed on marijuana, somehow, and it was frightening. Pain was not being controlled, and I wound up with too much in my system. No way to live. I just cannot wait to do this thing. HOLY CRAP!!!!! I tend to swear when I am excited. This is a joyful thing!!!! Thanks guys, and Jim, let me know what your doc says. Lori Renee

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Let's hope that soon it will be the case that when you OD on marijuana it will only be because you were having too much FUN and not too much PAIN! We are all rooting for you kiddo. Stay calm, Hank

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@jesfactsmon Hank, You're the best. On a happy note, just had my 2 year mammogram, and I am all clear. Boobies normal. I intend to never smoke marijuana after the trial, ever again. Find the stuff gross. Kiss your wife, Hank. Will keep you updated…. 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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