It’s really good to have you back. You’ve been missed around these parts! Nathan and I have been counting the Full Moons until you returned... 🌕😊
I’m so sorry for all that you’re going through, and I’m so inspired by both your vulnerability and your strength; your Hope. I’ll be hoping that you’ll get some answers, soon.
Very sorry to hear of the setbacks and the pain, but hopefully things are improving and the warmth of Substack will only serve to expedite that recovery 🤗
So sorry you've had a setback, Nadia, but maybe this new lead will turn into some relief - fingers crossed for you, and sending healing thoughts on all channels. I was recently introduced to the idea that something can be both totally reasonable AND open to improvement, and if that's not life in a nutshell, I don't know what is. We can only move forward. ❤️
“I’m so tired, I’m so done. I want to heal.” I know this mantra so well. It was mine for decades, through various illnesses, but especially eight years ago when the most torturous neurological disorder descended into me. I wanted out, I wanted it to end, and I tried literally everything to make it go away. Until...I had to stop trying. For me, the peace came when I didn’t “accept” it but I allowed the symptoms to be part of my experience. In the allowing, my brain could finally relax, finally realize it’s not in danger, finally, FINALLY, rest in kindness and compassion for my experience. And while, 8 years later, I still love with these symptoms daily, I’m at peace. It’s a wild conundrum to have found contentment within discomfort. I share this not because it’s everyone’s path, but definitely mine. Wishing you calm days ahead Nadia.
Thank you so much for sharing your experience, Kimberly. That can't be easy. And yes, when we live in peace, pain is just a part of us. A lot of the times, I'm at peace, and I'm definitely more peaceful than I've ever been, but during flare ups, emotions just heighten and so does frustration lol.
Firstly, as has been said multiple times, we are so so glad to have you back! Huzzah!
I’m so sorry for what you’ve been going through with the sciatic nerve pain💞Some of your symptoms like tingling in the hands I’ve also had, randomly on and off (but only for a minute at most when it does show up) for years. It usually happens specifically in my left hand, when I’ve had my elbow pressed directly on a table/flat surface for a few minutes. Being a lefty, if it ever gets worse, means that I’ll have to switch to writing with my right hand, which I can already do but the writing isn’t as pretty, lol. I hope the doctors will be able to help you. Hugs!!!
Take the time that you need, write and post when you’re able to/feeling up to it. We’ll be here, eagerly awaiting to read what you have to say about whatever you want to talk about. Many more huzzahs to you and Carpe Diem!💜
Oh no, I'm sorry to hear you've been dealing with that. That sounds annoying. I do hope it doesn't get worse though! And thank you so much for your sweet words and thoughtfulness. Much love, Kimber!
Hello Nadia, I found your story on notes, I'm sorry to hear about the suffering you have experienced 🧡 Praying for healing and peace for you. God bless you, love Emma
You have those, but you have us too here on Substack, don't forget! :D Welcome back!
Sorry to hear you're going through all that, hopefully you managed to get a lot of reading done as you planned. (It sounds like you did, and I'm excited to read all about it!) I'm confident the doctors will dig up that puzzle piece you're looking for at this moment.
Thank you so much for your encouragement, Felix! I feed on such words, so thank you! I hope you've been doing well. I at last ordered your book in print and am so excited to dig in!
No doubt it's an amazing book! And yay, that is awesome. Congratulations to you and your family. What a joyful milestone! Health and abundance to you and your loved ones!
I found your post in Notes and I relate so much to it. I have post-COVID small fiber neuropathy, among many other diagnoses I had never even heard of in the “before times.” I’m not sure where in the world you’re located (I’m in the U.S.), but my neurologist referred me to a neuromuscular specialist for the SFN. I had never even heard of such a specialty. She’s running a bunch of tests. Happy to connect with you on any of that.
Also, for chronic pain, check out the YouTube channel Pain Free You.
Hi Amy! Thank you so much for reaching out to me. I'm also in the US, in NJ. Yes, I started to also hear about SFN this year. I heard about POTS well before, which has overlapping symptoms, but I'm sure SFN existed before but is more prevalent with covid. Thank you for the mention regarding neuromuscular specialist and the channel. If the neurologist I'll see doesn't know how to treat me, I'll go see that kind of doctor. I wish you find all the answers and for you to also recover. Are you on anything to help you with the pain? I hope it isn't too horrible. Stay strong and keep fighting!
I’m your neighbor in NY :) About an hour north of NYC. My SFN isn’t all that painful. It shifts - sometimes it’s buzzing (like electrical impulses), sometimes it feels like Icy Hot, sometimes it feels like a sun burn. It flares when my fatigue (my main debilitating symptom) gets really bad. A few years ago, I took venlafaxine for the neuropathy. That helped a bit. A B-complex supplement helps too. But ultimately, it’s by far not my worse symptom, so I haven’t been treating it. The fatigue and the POTS are the worst.
Oh wow, well hello there almost neighbor haha. That sounds rough, especially fatigue and POTS. Interestingly, for me the symptoms have been shifting too. One month I would have cramps in the stomach the whole month. Then the heart would be affected. Now it's my back and legs, which is the worst for me because, hello, I need to use them every day lol. I'm also hyper-sensitive to supplements. I haven't been able to take D and B without getting heart palpitations. But I want to try again and maybe start out slow and power through. I know B12 is very important for the nerves.
I’m so glad you’re back, Nadia! I hope you had a satisfying holiday. I’m so sorry to hear about all the pain, but at the same time feel deeply grateful to be among the people you’ve chosen to share such intimate, vulnerable stories with. I hope that one day you’ll get to experience life without pain again.
As always, I’m looking forward to new posts from you!
Aw, thank you dear Andrei! I feel so open and vulnerable with y'all. Everyone is so kind and supportive here. And I'm sure there are others here who may need to read something like this. I look forward to reading more by you. I was engrossed by your latest three pieces!
It’s really good to have you back. You’ve been missed around these parts! Nathan and I have been counting the Full Moons until you returned... 🌕😊
I’m so sorry for all that you’re going through, and I’m so inspired by both your vulnerability and your strength; your Hope. I’ll be hoping that you’ll get some answers, soon.
You two are so sweet, thank you. I'm happy to have returned and to converse with you here. I appreciate your support so much.
Welcome back, Nadia!
Very sorry to hear of the setbacks and the pain, but hopefully things are improving and the warmth of Substack will only serve to expedite that recovery 🤗
Thank you so much, Nathan! I hope so, and it helps to be here. I feel so much warmth and support indeed!
So sorry you've had a setback, Nadia, but maybe this new lead will turn into some relief - fingers crossed for you, and sending healing thoughts on all channels. I was recently introduced to the idea that something can be both totally reasonable AND open to improvement, and if that's not life in a nutshell, I don't know what is. We can only move forward. ❤️
Thank you so much, dearest Troy. You always know what to say! :) <3
Such a misery, this painful time and such a trial. You are quite an inspiration.
I appreciate you, Weston!
“I’m so tired, I’m so done. I want to heal.” I know this mantra so well. It was mine for decades, through various illnesses, but especially eight years ago when the most torturous neurological disorder descended into me. I wanted out, I wanted it to end, and I tried literally everything to make it go away. Until...I had to stop trying. For me, the peace came when I didn’t “accept” it but I allowed the symptoms to be part of my experience. In the allowing, my brain could finally relax, finally realize it’s not in danger, finally, FINALLY, rest in kindness and compassion for my experience. And while, 8 years later, I still love with these symptoms daily, I’m at peace. It’s a wild conundrum to have found contentment within discomfort. I share this not because it’s everyone’s path, but definitely mine. Wishing you calm days ahead Nadia.
Thank you so much for sharing your experience, Kimberly. That can't be easy. And yes, when we live in peace, pain is just a part of us. A lot of the times, I'm at peace, and I'm definitely more peaceful than I've ever been, but during flare ups, emotions just heighten and so does frustration lol.
Welcome back! This post hit hard, so thank you for sharing this. Keep on keeping on.
Thank you, Lucas! I love that you said that, haha. Keep on keeping on you yourself!
Nadia! I’m so happy to read your words again. And, sending all the hugs as you navigate this setback. I’m sorry to hear of it. Thinking of you ❤️
Thank you so so much, Garrett!
Welcome back, Nadia <3 I hope you are getting the support you need and deserve
Thank you dear Sam!
Firstly, as has been said multiple times, we are so so glad to have you back! Huzzah!
I’m so sorry for what you’ve been going through with the sciatic nerve pain💞Some of your symptoms like tingling in the hands I’ve also had, randomly on and off (but only for a minute at most when it does show up) for years. It usually happens specifically in my left hand, when I’ve had my elbow pressed directly on a table/flat surface for a few minutes. Being a lefty, if it ever gets worse, means that I’ll have to switch to writing with my right hand, which I can already do but the writing isn’t as pretty, lol. I hope the doctors will be able to help you. Hugs!!!
Take the time that you need, write and post when you’re able to/feeling up to it. We’ll be here, eagerly awaiting to read what you have to say about whatever you want to talk about. Many more huzzahs to you and Carpe Diem!💜
Oh no, I'm sorry to hear you've been dealing with that. That sounds annoying. I do hope it doesn't get worse though! And thank you so much for your sweet words and thoughtfulness. Much love, Kimber!
Hello Nadia, I found your story on notes, I'm sorry to hear about the suffering you have experienced 🧡 Praying for healing and peace for you. God bless you, love Emma
Hello Emmalene! Thank you so much. I appreciate your kind wishes and prayers. Much love and good blessings to you.
You have those, but you have us too here on Substack, don't forget! :D Welcome back!
Sorry to hear you're going through all that, hopefully you managed to get a lot of reading done as you planned. (It sounds like you did, and I'm excited to read all about it!) I'm confident the doctors will dig up that puzzle piece you're looking for at this moment.
Thank you so much for your encouragement, Felix! I feed on such words, so thank you! I hope you've been doing well. I at last ordered your book in print and am so excited to dig in!
I'm excited to know what you think! And I have indeed been doing well, just rising to the occasions presented by fatherly duties. :-)
No doubt it's an amazing book! And yay, that is awesome. Congratulations to you and your family. What a joyful milestone! Health and abundance to you and your loved ones!
Really glad to see you back. Your presence on the platform was definitely noticed and missed.
Also, thank you for your openness and sharing your story. You weaved it together really well.
Take your time.
Looking forward to what’s next!
Aww, I missed y'all. Thank you Taegan!
I found your post in Notes and I relate so much to it. I have post-COVID small fiber neuropathy, among many other diagnoses I had never even heard of in the “before times.” I’m not sure where in the world you’re located (I’m in the U.S.), but my neurologist referred me to a neuromuscular specialist for the SFN. I had never even heard of such a specialty. She’s running a bunch of tests. Happy to connect with you on any of that.
Also, for chronic pain, check out the YouTube channel Pain Free You.
Hope you’re feeling a bit better soon.
Hi Amy! Thank you so much for reaching out to me. I'm also in the US, in NJ. Yes, I started to also hear about SFN this year. I heard about POTS well before, which has overlapping symptoms, but I'm sure SFN existed before but is more prevalent with covid. Thank you for the mention regarding neuromuscular specialist and the channel. If the neurologist I'll see doesn't know how to treat me, I'll go see that kind of doctor. I wish you find all the answers and for you to also recover. Are you on anything to help you with the pain? I hope it isn't too horrible. Stay strong and keep fighting!
I’m your neighbor in NY :) About an hour north of NYC. My SFN isn’t all that painful. It shifts - sometimes it’s buzzing (like electrical impulses), sometimes it feels like Icy Hot, sometimes it feels like a sun burn. It flares when my fatigue (my main debilitating symptom) gets really bad. A few years ago, I took venlafaxine for the neuropathy. That helped a bit. A B-complex supplement helps too. But ultimately, it’s by far not my worse symptom, so I haven’t been treating it. The fatigue and the POTS are the worst.
Oh wow, well hello there almost neighbor haha. That sounds rough, especially fatigue and POTS. Interestingly, for me the symptoms have been shifting too. One month I would have cramps in the stomach the whole month. Then the heart would be affected. Now it's my back and legs, which is the worst for me because, hello, I need to use them every day lol. I'm also hyper-sensitive to supplements. I haven't been able to take D and B without getting heart palpitations. But I want to try again and maybe start out slow and power through. I know B12 is very important for the nerves.
I’m so glad you’re back, Nadia! I hope you had a satisfying holiday. I’m so sorry to hear about all the pain, but at the same time feel deeply grateful to be among the people you’ve chosen to share such intimate, vulnerable stories with. I hope that one day you’ll get to experience life without pain again.
As always, I’m looking forward to new posts from you!
Aw, thank you dear Andrei! I feel so open and vulnerable with y'all. Everyone is so kind and supportive here. And I'm sure there are others here who may need to read something like this. I look forward to reading more by you. I was engrossed by your latest three pieces!
Sending you all my healing thoughts and well wishes, Nadia. 🤗 Happy you are back!
Thank you, Alexander, that means so much to me!
Wishing you all the best, Nadia. You, and your words, are powerful! Sending lots of love!
Thank you, Priya. Your words of encouragement are always so thoughtful and appreciated. Much love your way!