What to say? This is crisp, deftly written, and heartbreaking storytelling. Sharing of suffering. Our broken systems are breaking us again and again, and how brave you are to be this vulnerable and honest. PTSD has run rampant through my family, from my grandmother to my children, hobbling everything from health, vocation, and even creativity. Bridget, I grieve with you, and thank you for opening your guts on this one, along with many other brilliant essays.
What an incredible journey you have been on. I too have POTS amongst other autoimmune diseases and I am so sorry you been challenged with fighting for a diagnosis- and treatment.
I can relate to some of this as after I recovered from COVID in 2022, I had debilitating fatigue & full body joint pain which led me to 3 different Rheumatologists. After piles of lab tests over the course of 6 months, the diagnosis was long Covid.
In 2023, POTS symptoms began & severity of symptoms waxed & waned. After passing out at the gym and smashing my face on a weight plate this year, a Cardiologist confirmed POTS. After reading this, I can’t help but wonder what (other) affects COVID has had on (us).
It is amazing how many people share common symptoms with me these days. It's actually overwhelming, and I'm so sorry you're experienced it. The gym scenario scares me to death!
Amidst the grief and loss, I hope you're finding moments of pleasure, more blue bottle treasures, a serene flow state where your writing is magic and your thoughts have wings. You are so strong. Thanks for putting yourself out there for us to see.
Every post you write, I am touched and say in my head “wow” so many times! This blog is from last August, and one I started and forgot to finish! Its one of the best ones I've heard (listening mode) and it made me understand more of your health struggles after covid and how you've had to change up so many ways to cope and survive, and/or attempt to feel better so you can keep going!
You have alot (ALOT) on your plate - who am I telling? Lol!
I appreciate your openness and humor in sharing your life and experiences. You are an inspiration and teaching me so much - esp ways to maybe look at things differently.
Thanks again Bridget! You are really an amazing woman! 🥰
It took four years and mountains of evidence to obtain my disability based upon my emotional trauma inflicted upon me by 7 levels of management for being a whistleblower
I'm so sorry. We throw around words like "toxic" without seriously looking at the toll to our beings really becomes. Wishing you healing and them what they deserve.
At the risk of being one of those "have you tried" people—I'm going to do just that. My daughter, age 48, had gone though almost exactly what you have described physically, along with the years of varying medical diagnosis and treatments that helped little, if at all. It is likely long covid, but in addition to that, they recently foud she has two (or three-I forget) tic-born diseases. She works outdoors in northern WI so you would think they might have thought of that earlier, but alas, no. In reading some of your posts, you mentioned rural living and Michigan, so I thought, in case your doctors haven't considered it, you might want to.
Thank you. One of my doctors has long considered this and I have done all of the testing (negative but yeah, that’s nuanced) and then protocols for Lyme (with minimal change). We know it is an immune issue… and so we keep trying to find lifestyle and other tweaks that may impact it more than others. I do appreciate all of the troubleshooting anyone can offer!
Sending much love and light, my friend. I love the vulnerability. And I so highly related to the shame of "not working." I haven't gone back to work after losing my job 10 months ago. One because I hate working for other people, but mostly it's because I don't have the capacity. And I have so much shame around that and putting my family in "financial stress." I too have struggled with many health issues for years with no answer. And I really do pray for your healing.
Oh, my friend. I am with you on capacity. I'm full up here and people, well, I'm not sure I can manage 40 hours of forced fake shit anymore. Sending you a huge hug. You're right where you're supposed to be. 🖤
Having to deal with Long COVID, and whatever else, AND trying to support your son in a system that doesn't seem to recognize that the answer to a serious addiction issue isn't prison, it's proper addiction care? Yikes. Sorry to hear you are going through this. At least I hope you can find other "Long Haulers" to talk with. Community is SO needed in our world right now.
Thank you, friend. It is a lot but there is also good out here. In being able to find others who "get" it, I have been so blessed. You are one of those, and I am grateful.
Don’t even get me started on medical shit. I felt every word of this and this is some hellacious writing. Thank gawd for writing. My 12 yo grandson had to come stay with us for months during COVID to try to keep him safe and in good health before major open heart surgery for a birth anomaly - due to medical negligence he suffered a cardiac arrest two days post surgery - it took them 12 minutes to resuscitate him and he’ll never be the same. (I hear all the voices - it could’ve been worse - go off as I write this) I was just telling my husband the world has changed drastically since 2019 and it’s time we accept that it’s affected us, our children, our grandchildren, our neighbors, our communities, and everyone everywhere. I of course-during this shit show- was told I have a panic disorder when as a therapist I knew damn well I didn’t. Thanks but no thanks fuvkers. I walked away from that bullshit. I do have PTSD (specifically MEDICAL) and some health issues (potentially major but quiet) I had 7 knee surgeries in 1998-99 - 5 of which were unnecessary (how I got my education on the health system and learned to advocate for myself as well as became deeply skeptical) I couldn’t walk for two years. I’m refraining from adding I’m so grateful for my health (like being able to walk) blah blah. We are in the midst of change so great we haven’t seen the likes in at least a century if not centuries. Thank you for being here and for writing. As I shared in my recent post Women Talking - who can describe this? I can. YOU CAN. I hope you keep it up.
Thank GAWD for writing. When I got the notice from the judge, I took solace in knowing that I had taken this space and time to get out what I needed about the TRUTH of what I have experienced. Not what he thinks (I can apparently work as a cashier, according to his non-knowing, non-caring, pencil-pushing ass). I will check out the recent post. Women are talking, damn it.
Wow. Wow. Wow. Thank you so much for sharing so exquisitely and vulnerably your painful journey. You are such an inspiration to so many. Sending you love and light. 💜💕
As you know, our family has had a similar journey with our daughter’s diagnosis of many of the same conditions. It is heartbreaking and rage-making and exhausting…. I am so grateful that we finally found a medical team who gets it. She too had doctors who told her that it was all in her head and she needed treatment for anxiety, depression or whatever. While we are fans of therapy, those comments missed the point of her very real disability. I hope you continue to find medical folks to support you.
I honestly think the time has come for me to move away from medical folks and even more into the arms of Ayurveda and eastern healing and indigenous wisdoms and my own damn intuition. Every bit of western medicine has failed me in this case, and I had a doctor tell me recently (a good one) that she sees what I am going through with her eyes but she has neither the tests nor the treatments for it. "We don't know what to do with this yet," she said. And I left that office thinking, after 4 years, the ship has sailed and I will just ride along now as best the wind will carry. ;)
I’m so sorry you have gone through and are still experiencing this. I understand it, have been facing a version of it for many years. My hope for you is recognition, relief, and approval for disability.
Thank you, Sheri. I hate that you *know about this too. There are so many of us and until it was me, I didn't really care. Thank you for your empathy and hope.
One of the things I love about Substack is that we can form a range of connections of different sorts and strengths over time or immediately. I'm so happy to share my hope with you!
Bridget - I'm so sorry you're going through this. I cannot imagine the burden of frustration you've carried in addition to the burden of illness. I hope finally uncorking the bottle of silence about your struggle has loosened the mental stress a bit. I have no words of wisdom, but I do have words of support.
I appreciate this comment so much. There is definitely something to opening up about all of this that helps in some small way. To not feel alone is healing, I'm and of itself. Thank you for reading and for being ‘in this' with me. 🖤
What to say? This is crisp, deftly written, and heartbreaking storytelling. Sharing of suffering. Our broken systems are breaking us again and again, and how brave you are to be this vulnerable and honest. PTSD has run rampant through my family, from my grandmother to my children, hobbling everything from health, vocation, and even creativity. Bridget, I grieve with you, and thank you for opening your guts on this one, along with many other brilliant essays.
Oh, the crush it is to creativity. That statement really hit me. Thank you for your connection and realness, every time. Much love back to you.
What an incredible journey you have been on. I too have POTS amongst other autoimmune diseases and I am so sorry you been challenged with fighting for a diagnosis- and treatment.
I can relate to some of this as after I recovered from COVID in 2022, I had debilitating fatigue & full body joint pain which led me to 3 different Rheumatologists. After piles of lab tests over the course of 6 months, the diagnosis was long Covid.
In 2023, POTS symptoms began & severity of symptoms waxed & waned. After passing out at the gym and smashing my face on a weight plate this year, a Cardiologist confirmed POTS. After reading this, I can’t help but wonder what (other) affects COVID has had on (us).
- Thank you for sharing your story. ❤️
It is amazing how many people share common symptoms with me these days. It's actually overwhelming, and I'm so sorry you're experienced it. The gym scenario scares me to death!
Amidst the grief and loss, I hope you're finding moments of pleasure, more blue bottle treasures, a serene flow state where your writing is magic and your thoughts have wings. You are so strong. Thanks for putting yourself out there for us to see.
How am I just seeing this comment? I guess I needed it today. Thank you becuz it was a tough weekend. 🖤
Every post you write, I am touched and say in my head “wow” so many times! This blog is from last August, and one I started and forgot to finish! Its one of the best ones I've heard (listening mode) and it made me understand more of your health struggles after covid and how you've had to change up so many ways to cope and survive, and/or attempt to feel better so you can keep going!
You have alot (ALOT) on your plate - who am I telling? Lol!
I appreciate your openness and humor in sharing your life and experiences. You are an inspiration and teaching me so much - esp ways to maybe look at things differently.
Thanks again Bridget! You are really an amazing woman! 🥰
Thanks Gina. This week has been a difficult one. You've no idea how much I appreciate your love.
We soldier on. Heartbreaking story, Bridget...
It took four years and mountains of evidence to obtain my disability based upon my emotional trauma inflicted upon me by 7 levels of management for being a whistleblower
I had them dead to rights
They all got promoted
My 30 year career was stolen from me
I'm so sorry. We throw around words like "toxic" without seriously looking at the toll to our beings really becomes. Wishing you healing and them what they deserve.
Thank you for your story. Life can be so difficult when you’re dealing with something rare and weird. I hope you have a circle of love.
It's a small, but mighty circle. Thank you for this knowing and this kindness, Beva.
At the risk of being one of those "have you tried" people—I'm going to do just that. My daughter, age 48, had gone though almost exactly what you have described physically, along with the years of varying medical diagnosis and treatments that helped little, if at all. It is likely long covid, but in addition to that, they recently foud she has two (or three-I forget) tic-born diseases. She works outdoors in northern WI so you would think they might have thought of that earlier, but alas, no. In reading some of your posts, you mentioned rural living and Michigan, so I thought, in case your doctors haven't considered it, you might want to.
Thank you. One of my doctors has long considered this and I have done all of the testing (negative but yeah, that’s nuanced) and then protocols for Lyme (with minimal change). We know it is an immune issue… and so we keep trying to find lifestyle and other tweaks that may impact it more than others. I do appreciate all of the troubleshooting anyone can offer!
Sending much love and light, my friend. I love the vulnerability. And I so highly related to the shame of "not working." I haven't gone back to work after losing my job 10 months ago. One because I hate working for other people, but mostly it's because I don't have the capacity. And I have so much shame around that and putting my family in "financial stress." I too have struggled with many health issues for years with no answer. And I really do pray for your healing.
Oh, my friend. I am with you on capacity. I'm full up here and people, well, I'm not sure I can manage 40 hours of forced fake shit anymore. Sending you a huge hug. You're right where you're supposed to be. 🖤
You have a journey like no other. We will follow it and support you all the way. 💕
I so appreciate you.
Having to deal with Long COVID, and whatever else, AND trying to support your son in a system that doesn't seem to recognize that the answer to a serious addiction issue isn't prison, it's proper addiction care? Yikes. Sorry to hear you are going through this. At least I hope you can find other "Long Haulers" to talk with. Community is SO needed in our world right now.
Thank you, friend. It is a lot but there is also good out here. In being able to find others who "get" it, I have been so blessed. You are one of those, and I am grateful.
Don’t even get me started on medical shit. I felt every word of this and this is some hellacious writing. Thank gawd for writing. My 12 yo grandson had to come stay with us for months during COVID to try to keep him safe and in good health before major open heart surgery for a birth anomaly - due to medical negligence he suffered a cardiac arrest two days post surgery - it took them 12 minutes to resuscitate him and he’ll never be the same. (I hear all the voices - it could’ve been worse - go off as I write this) I was just telling my husband the world has changed drastically since 2019 and it’s time we accept that it’s affected us, our children, our grandchildren, our neighbors, our communities, and everyone everywhere. I of course-during this shit show- was told I have a panic disorder when as a therapist I knew damn well I didn’t. Thanks but no thanks fuvkers. I walked away from that bullshit. I do have PTSD (specifically MEDICAL) and some health issues (potentially major but quiet) I had 7 knee surgeries in 1998-99 - 5 of which were unnecessary (how I got my education on the health system and learned to advocate for myself as well as became deeply skeptical) I couldn’t walk for two years. I’m refraining from adding I’m so grateful for my health (like being able to walk) blah blah. We are in the midst of change so great we haven’t seen the likes in at least a century if not centuries. Thank you for being here and for writing. As I shared in my recent post Women Talking - who can describe this? I can. YOU CAN. I hope you keep it up.
Thank GAWD for writing. When I got the notice from the judge, I took solace in knowing that I had taken this space and time to get out what I needed about the TRUTH of what I have experienced. Not what he thinks (I can apparently work as a cashier, according to his non-knowing, non-caring, pencil-pushing ass). I will check out the recent post. Women are talking, damn it.
Fuckin A, my friend!
Wow. Wow. Wow. Thank you so much for sharing so exquisitely and vulnerably your painful journey. You are such an inspiration to so many. Sending you love and light. 💜💕
Thank you, Bridget, for your love and light. I am soaking it in.
As you know, our family has had a similar journey with our daughter’s diagnosis of many of the same conditions. It is heartbreaking and rage-making and exhausting…. I am so grateful that we finally found a medical team who gets it. She too had doctors who told her that it was all in her head and she needed treatment for anxiety, depression or whatever. While we are fans of therapy, those comments missed the point of her very real disability. I hope you continue to find medical folks to support you.
I honestly think the time has come for me to move away from medical folks and even more into the arms of Ayurveda and eastern healing and indigenous wisdoms and my own damn intuition. Every bit of western medicine has failed me in this case, and I had a doctor tell me recently (a good one) that she sees what I am going through with her eyes but she has neither the tests nor the treatments for it. "We don't know what to do with this yet," she said. And I left that office thinking, after 4 years, the ship has sailed and I will just ride along now as best the wind will carry. ;)
It's such a hard constellation of conditions... I hope you find healing and hope!
Hugs back to you.
I’m so sorry you have gone through and are still experiencing this. I understand it, have been facing a version of it for many years. My hope for you is recognition, relief, and approval for disability.
Thank you, Sheri. I hate that you *know about this too. There are so many of us and until it was me, I didn't really care. Thank you for your empathy and hope.
One of the things I love about Substack is that we can form a range of connections of different sorts and strengths over time or immediately. I'm so happy to share my hope with you!
That really has been the coolest part of this entire platform!
Bridget - I'm so sorry you're going through this. I cannot imagine the burden of frustration you've carried in addition to the burden of illness. I hope finally uncorking the bottle of silence about your struggle has loosened the mental stress a bit. I have no words of wisdom, but I do have words of support.
I appreciate this comment so much. There is definitely something to opening up about all of this that helps in some small way. To not feel alone is healing, I'm and of itself. Thank you for reading and for being ‘in this' with me. 🖤