Update on my DRG stimulator Implant. Implanted 12 days ago.

@lorirenee1

Oh, how very sorry I am that the DRG isn't living up to its expectations, Lori. It's really hard, after a person has tried a medication or procedure or implant, to begin feeling some relief, only to have it lose its effectiveness. So disappointing.

Knowing you, I'm fairly sure you'll give the DRG a shot, at least until the time that you've been told it could still start doing its job. I'm kinda hanging in there until I recover from back surgery, to see if my scs will resume its work. The surgeon doing the spinal stenosis decompression is also the doctor who would move forward with other treatments, including - a big Maybe - the DRG implant. I really appreciate you keeping us posted. It's certainly going to be a factor in making the decision to do it or not do it.

I haven't read past your initial post from this morning, Thursday, so I don't know yet how others have responded. I don't want to be out of line in expressing my concern for your mental state. You know as well as anyone how pain and depression/anxiety can feed each other. I feel tears in the back of my eyes, thinking about all that you're going through right now. You have my sincere empathy, Lori. Know that I'll be praying every day for you, along with a bunch of other fellow warriors.

Jim

Guys - I want you to know...I just ate some cherry vanilla ice cream and my endorphins are flowing! 🍨
Cheers, Lori and all that wish to cheat a little today!! 🤗

@lorirenee1Yes ma'am, I keep pushing these legs and am making slow, steady progress which pleases me. The hike (walking trail) really opened my eyes and inspired me. I won't give up and I know you won't either my friend. Good luck at your Sept 1st appointment. I'm keeping hope alive for you! 💕
Best wishes and strength,
Rachel

Oh God, Rachel, chocolate chip ice cream with hot fudge, from Oberweis Dairy is often my back up, pain plan. I do not keep it in the house, or I would weigh one million pounds. However, I drive over there, hobble inside with my mask on, and get it!!! I do think it works way better than Gabapentin, Duloxetine, Medical Marijuana, and a few others....and yes, endorphins are raised, for sure. I swear by it. Love to you, Rachel, and I am glad you ate that ice cream!!!! Lori Renee

@rwinney, Oh, Rachel! The thought of you, and progress, makes me so delighted. No one works harder than you to fight this damn illness. You just keep it up. Keep it up, keep it up. I am best when walking, so I walk. Sitting is a bitch. At least I will keep my legs strong walking. My best to you, and you are something else!!!!! Love, Lori Renee

@rwinney @lorirenee1

Pain seems to be lower for me when I'm moving around, too. It's a strange thing. One would think that walking would make it worse. There's a limit to how far I can walk, though. There comes a time when my feet start complaining, especially if I'm walking on hard surfaces.

Do you raise your feet above your head and heart? I lie with my feet on a pillow sometimes, but that can make them hurt more. My therapist suggested elevating my feet, if possible like a tilt table. It's kind of hard to do it in bed with a blanket lifter. I'm glad you've found a few helpful coping ideas.

Jim

@jesfactsmon Awww, Hank, your kindness is just the best. It's like you know what I need! Yes, this is a very trying time for me, as I really thought that the DRG would improve my life. I still hope it does, and pray that my nerves will totally heal from surgery, and respond to the electricity in the way I had hoped. As I write, my legs are lifted on the couch, as I cannot put my feet on the ground without terrible pain starting. Somehow, leg elevation helps. At least I have this trick! Everyone here is searching for something to work. Everyone here deserves joy, and a normal life. Sometimes I get so sad reading about all of us, that it almost enhances the pain. I think I am a true empath, and I am not always sure if this is good or bad. Life can suddenly just turn. I do lose hope, and I have, deep down, a very happy, funny, spirit. Even family stops asking. I think illness can make our loved ones very uncomfortable after awhile. You are really strong, Hank, to listen to all of this. Maybe it is these deeper sharing that really connects us as human beings. I know the deep suffering here. I know how each of us try to cope with a really unbearable illness. I know God. I pray all of the time. Getting carried away here, but thanks so much. You are a gem, and Linda is a lucky lady to have you. Lori Renee

Hi Lori, wow, almost everything you said I can relate to and experience myself. My husband has called me an empath since he met me 29 years ago! I didn't even know what that meant at the time LOL! He always watches sci-fi so I thought it was a characteristic the aliens on his shows! It is so funny I was just thinking how sad it makes me to read everyone's story also, because I cannot bear the thought of anyone suffering! But yet I am so thankful for the blog because it helps me know how to pray better and reminds me to pray. I've come to the conclusion that pain or the degree of pain or the types of pain we are in, and most of us have many types and pretty intense degrees, that others who do not experience this can't understand it. They can see us come and go from the doctor and Hospital, even the ambulance and in wheelchairs, they know we're in bed with ice and heat at the same time in different parts of our body they can see it on their faces and in some cases we have had to ask them to adjust their expectations of us and told them how sorry we are that we cannot be there for them because of our physical limitations yet, if we have a smile on our face, the world thinks were doing fine. Or, on the rare occasions we put on makeup and have a smile for sure people think we are better than ever. If they only knew. I've never belonged to a support group like this where people can understand my pain and it really has meant the world to me which is a gross understatement. I am deeply grateful for the warm caring and supportive group All of You Are. I wish many, many blessings to each one of you. In Christ's unfathomable love, Sunny flower

@sunnyflower Hi, Sunny, Even your name reflects your kindness! When I first read it, I thought of burning, also. Burning from the sun, and serious nerve symptoms. Yes, our description of pain did sound so much alike. As I write, my feet are elevated on the couch, just burning away. If I didn't know better, I would think there was a lit fire inside them. And that is with a DRG stimulator wires and battery implanted in me. I don't know. I just don't know. I will get out today, and meet a friend outside, for lunch. It is about 90 degrees outside, but we will sit under a canopy, and enjoy getting together. I normally kiss my friend hello, but now, we stay away. Life is just strange, and unpredictable. Love everything, as much as you can. Pray when you can. I am gonna go walk around my house now. Sometimes walking helps. Love to you, Lori Renee

Hi to all my Neuropathy Warriors here! In the midst of awful pain, I just called my DRG ABBOTT rep, to remind him that I have an appt with my Pain Doc next Tuesday. He was happy that I have at least 20% pain relief, that the DRG is doing something, and that more adjustments would help, most likely. I told him, "From your mouth, to God's ears......" God, this is not easy. But the guy has experience with this darn machine, and maybe it will help still. Crossing my fingers, as I can't for the life of me, cross my toes. Love to every one of you!!! Lori Renee