Covid may be messing with my DRG Trial

Posted by lorirenee1 @lorirenee1, May 15 12:21pm

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

@lorirenee1 Ughhhhh Lori. I'm real sorry if this trial doesn't work out for you. I know how you've been counting on it with hope. Covid has turned alot upside down. Hang in there lady. Thinking of you and wishing you comfort.
Rachel

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@rwinney Hi Rachel, Is that winney with a long or short I? Just wondering!!! Yes, I am so upset about maybe not getting my trial The nurse should call in a few hours to let me know one way or other. I can't tell you how I appreciate hearing you here, because I really do feel so sad about this. I will keep you informed, when I learn more…..Wishing you comfort as well…..Lori

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I suspect that many of our friends here on Connect have had or will have cancellations or postponing from doctors. They're finally scheduling face to face appointments here, and I've been able to move 3 appointments up. I''m having an elective surgery, which has to be done at the hospital, with an overnight stay. I don't know how far off that will be. If it doesn't happen in the next couple of weeks, it's going to make some challenges with yard work because there's a 2 week recovery before I can do much more than sit in the recliner or lie in bed.

I sure hope that you will be scheduled soon for your trial, and that it will give you as much pain relief as mine did. Have you gone through all the hoops that the implant requires? It took months for me to get through all of the advance requirements, and I can say it was worth the wait, but it wasn't easy doing all that waiting. I join Rachel and others in prayer for you.

Jim

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@jimhd

I suspect that many of our friends here on Connect have had or will have cancellations or postponing from doctors. They're finally scheduling face to face appointments here, and I've been able to move 3 appointments up. I''m having an elective surgery, which has to be done at the hospital, with an overnight stay. I don't know how far off that will be. If it doesn't happen in the next couple of weeks, it's going to make some challenges with yard work because there's a 2 week recovery before I can do much more than sit in the recliner or lie in bed.

I sure hope that you will be scheduled soon for your trial, and that it will give you as much pain relief as mine did. Have you gone through all the hoops that the implant requires? It took months for me to get through all of the advance requirements, and I can say it was worth the wait, but it wasn't easy doing all that waiting. I join Rachel and others in prayer for you.

Jim

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@jimhd Hi Jim, Thanks from the heart for your message. What procedure do you need that will keep you in the hospital? I hope that it will happen in a timely matter. With this Covid, you never know. I did go through what I needed to do to get my DRG trial, but now, I am considered too old, and a risk for Covid. I am still waiting for a call from my pain doc, or his nurse, but I doubt it will happen now….Thanks so much for your note. So appreciated. Lori

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@lorirenee1

@jimhd Hi Jim, Thanks from the heart for your message. What procedure do you need that will keep you in the hospital? I hope that it will happen in a timely matter. With this Covid, you never know. I did go through what I needed to do to get my DRG trial, but now, I am considered too old, and a risk for Covid. I am still waiting for a call from my pain doc, or his nurse, but I doubt it will happen now….Thanks so much for your note. So appreciated. Lori

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@lorirenee1 Autonomic neuropathy has been increasing to affect various areas, from head to toes. A urologist is going to perform a procedure because of urinary and bowel problems that are probably associated with neuropathy. I have sudden urgent need to urinate. (Think Myrbetric ads)

Jim

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Lori, I can only add my sincere sympathy to the other's sentiments. What a disappointment! The virus (or more accurately the government's reaction to the virus) has created an alternate reality for everyone. My heart breaks for you and all others whom I read about on Connect as well as my spouse. Believe it or not I had a weird dream last night about neuropathy and attempting to cure it. Yes I was trying to figure out how to proceed to cure neuropathy in my dream, how silly is that? I know in my gut that something is going to be uncovered eventually that will be an unbelievable breakthrough that will help many people with PN (and possibly other pain related diseases). That is little solace to you and others who are suffering so much right now. One thing I do believe is that nerve pain is happening on a very subtle level and whatever answer comes will likely be operating on a subtle level as well. I just hope it happens soon. Again Lori, I am sorry but please don't get too down, we are all rooting for your drg procedure to come through.

Liked by lorirenee1

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@jimhd

@lorirenee1 Autonomic neuropathy has been increasing to affect various areas, from head to toes. A urologist is going to perform a procedure because of urinary and bowel problems that are probably associated with neuropathy. I have sudden urgent need to urinate. (Think Myrbetric ads)

Jim

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@jimhd Hi Jim, I am so sorry about this. So, it sounds like the nerves control even the urinary tract and bowels. Of course, nerves are part of the control of everything. I hope you can attend to this soon. God, with this Covid, everything is so messed up. Please keep me, and everyone updated. Hang in. I turned utterly crazy from pain last nite, but better today. I have the same pain, but maybe some sleep helped my mood. God in heaven, so difficult…..Stay safe, at least….Lori

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@jesfactsmon

Lori, I can only add my sincere sympathy to the other's sentiments. What a disappointment! The virus (or more accurately the government's reaction to the virus) has created an alternate reality for everyone. My heart breaks for you and all others whom I read about on Connect as well as my spouse. Believe it or not I had a weird dream last night about neuropathy and attempting to cure it. Yes I was trying to figure out how to proceed to cure neuropathy in my dream, how silly is that? I know in my gut that something is going to be uncovered eventually that will be an unbelievable breakthrough that will help many people with PN (and possibly other pain related diseases). That is little solace to you and others who are suffering so much right now. One thing I do believe is that nerve pain is happening on a very subtle level and whatever answer comes will likely be operating on a subtle level as well. I just hope it happens soon. Again Lori, I am sorry but please don't get too down, we are all rooting for your drg procedure to come through.

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@jesfactsmon Awww, Hank. Such a nice message from you. It is not silly to attempt to cure neuropathy in your dreams. I am always trying when I am awake, and so is everyone else that is here!!! Something that a neurologist I had said to me really registered. I was talking to him about stem cell treatment for neuropathy, and he spoke plainly and said, "Nerves are smart. Very smart, and they are hard to figure out. Muscle tissue, bone tissue, etc., are kind of dumb, and therefore, are better at responding to stem cell therapy. You can work with them better." It hit me how little there is for any nerve disease in general, because nerves are so smart, and hard to deal with. There are little effective drugs, and most people do not respond much to them. There are few therapies that make a giant difference. To think that smoking grass is the new suggestion to chronic pain and nerve disease, is a joke. But it is all we really have. To think we send men to the moon, but cannot figure out the nervous system amazes me. But what do I know? So I wait here to hear from my pain doc. He is still trying to find a way to get me my trial. I won't hold my breath. We are all just human, trying our best. I think you are one great guy to work so hard at this, that your dreams are effected by it. It is a great tribute to your determination and love of your wife. Keep dreaming…..you just never know what you will discover…do not give up. Be safe, God Bless, Lori

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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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@lorirenee1 YAYYYYYYYYYYY!!!!!! I will patiently be awaiting your results and hopeful success story. Best wishes, stay strong, stay positive….you can do it! I am here for you.
Sincerely,
Rachel

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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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@rwinney Rachel, Thanks for your utter kindness. No sick body can take that away. I will keep you posted as I recover from the trial surgery, but I am sure I will be here sooner. Rachel, are you still going to Mayo for the three week pain management class? You have not posted about if for a bit, or did I miss something? Love to you, Lori

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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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@lorirenee1

@rwinney Rachel, Thanks for your utter kindness. No sick body can take that away. I will keep you posted as I recover from the trial surgery, but I am sure I will be here sooner. Rachel, are you still going to Mayo for the three week pain management class? You have not posted about if for a bit, or did I miss something? Love to you, Lori

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@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

@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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