Amy, this is SUCH OUTSTANDING COVERAGE and exactly what more of us need to see and read and experience. Thank you for putting the time, energy, heart, and devotion into all of it. It's valuable to so many communities, and I haven't found enough other sources doing this work.
And also thanks for being a friend, for putting my humble substack "interest" request front and center, and for promoting goodness all around. So many good feelings from all of this!
Robin, I so appreciate your kind words and support. I do always hope that my subscribers are a mix of long COVID and non-LC folks, so that there’s both a sense of community and awareness raising. I bet you probably feel much the same way about your own newsletter?
Always happy to elevate a message here - just say the word 🧡
You always amaze me with your tenacity, your wit, and your razor-sharp writing. I learn so much about Long Covid from you -- you're my trusted source of information. (Luckily, I don't have Long Covid, but I have a strong desire to learn about and support those who do. I feel like our country has let so many people down.) Anyway, just here to say how grateful I am that you continue to share your journey. And pizza is great, but what about TACOS???
I really appreciate you non-LC folks who come along for this ride with me. That means the world! Glad I can make some folks laugh as well. I feel like your writing is very similar: poignant, thought-provoking, funny, full of joy even when it’s about hard stuff.
Don’t be mad: I don’t really get the obsession with tacos? I don’t eat meat so maybe that’s part of it. I also find them to be messy. Pizza > tacos, but hit me with your best argument here! 😆
I love that you’re learning about long C so that you can learn about it and better understand and support those that do live with it. I only ever had one person in my life suggest they’d like to research and understand more about the complexities of what I’ve been enduring all this time (not long c with me but migraine disease and a whole cocktail of other chronic illness). It’s good to know there are others out there taking an interest, heart warming even.
I don’t know why it still surprises me how similar all of our stories are. My 4 years is coming at the end of May and we have stunningly similar experiences. Helps me not feel alone, then angry because there’s still so much lack of knowledge in the medical community despite the similarities. Thank you for sharing your story. Puts words to my experience when I don’t have the strength to.
Thanks for reading and commenting, Valerie. How would you say you’re doing these days? It is stunning to see the lack of knowledge out there, and yet I have found that within the last year, every new doctor I see for any reason has taken what I’ve told them about my LC very seriously. That’s certainly a change from the first few years. I wonder though if that’s true for me because I live in a populated area outside of NYC. I don’t imagine this is true everywhere.
There has definitely been improvement since 2021 (my worst year). I’ve had 3 procedures that seemed to have the most impact. I had bilateral iliac vein stents placed for May-Thurner’s syndrome. This was the silver lining/blessing of getting so sick. If I wasn’t so sick, it may not have been found and would have killed me. My right side was 100% kinked off and left side 80%. I then had EVLT on both greater saphenous veins which significantly improved the regurge/blood pooling in my legs.
I’m still unable to work and likely won’t ever be able to work in an operating room again. The cognitive dysfunction and fatigue are still my biggest rate limiters. I’ve found I can be somewhat physically active OR somewhat mentally active. NEVER both and sometimes neither. Still have significant sleep issues which of course makes all of my symptoms worse.
I still have a primary care doctor who thinks Long Covid is exceedingly rare and does not believe I have it. Thank god for my plastic surgeon, who first diagnosed me and my Long Covid doc who confirmed it!…Eventually, so did Mayo Clinic. Although we haven’t found many treatments that help, being believed and understood goes along way to contribute to wellbeing!
Thankfully, I now have a LARGE team of docs that I have cultivated through trial and error seeing well over 50 doctors in the last 4 years. They do a great job of working with me to optimize my health as much as possible. The things we have found that help contribute to some quality of life are:
Weekly vitamin and normal saline IVs- helps my POTS
Concerta- helps with my fatigue but not so much that it lets me overdo it.
Bupropion and Sertraline have my depression/PTSD well controlled
Plavix and aspirin help my cognitive function and leg pain
Aimovig and Ubrely with intermittent Botox injections help my migraines
Linzess has helped my gastroparesis/IBS-C
Thank you for the work you’re doing. I can’t imagine how taxing it must be, but it’s very beneficial to people like myself.
Thank you for sharing this epic story, Amy. What four years. I loved learning more about you, though I'm sorry it's happening in this particular way, and so sorry and angry to hear about the gaslighting from your primary care doctor. You should have been given much better support right from the beginning. And reading about the ups and downs of some recovery and then crashes, ooof — how hopeful and then how discouraging. Thank you for sharing all of this with us; it so helps bring greater understanding about Long Covid. Oh, and the texts and memes were hilarious! Laughter really is a salve in chronic illness and in life. I LOVE PIZZA too. 😂
Thank you for reading and commenting, Brianne. And for your kind words. I had some docs in the beginning who were “brave” enough to say to me, “I’m sorry for your suffering; we just don’t know enough yet about what’s going on or what might help.” I really respected those docs because they were both honest and showed basic human decency.
Mmmm, PIZZA…something I can have again now that my new dietitian wants me off all restrictive diets, stat. Bless her heart! 😄
I'm not a LC patient and I'm no longer an ME/CFS patient. I hope that gives people with LC (and ME/CFS) a bit more hope.
When the pandemic started one of my first thoughts was that ME/CFS was going to finally get the serious attention it deserves.
I don't come back to these patient support spaces enough, to be honest because it triggers all the trauma that took place over decades of medical gaslighting.
I can't over state the importance of patients like Amy who use their limited energy to build and support community.
Hang in there (everyone) and never give up hope. And care for yourselves (physically and emotionally).🙏🏻
Thank you Amy for another great post. One thing that stood out was the estimation of improvement in LC. I really struggle with percentage of improvement. I’m no longer in a catatonic state completely breathless, hiding from all stimuli, and hoping I would suddenly die. I am able to attend my sons’ activities most of the time as long as I do absolutely nothing else. So big improvement from 2yrs ago and I’m grateful. But compared to the pre covid me, I’m at best 25% of that person. I traveled for work, speaking at a lot of conferences, while maintaining endurance training, an active social life & a sex life my friends were jealous of. My teenagers struggled to keep up with me. Now I look at my calendar for the week and strategize where to use my spoons, when I can rest, and what can I cancel if I’m not ok. If I explain this to people, the comment is usually, “but you’re better right?”. Umm yeah. I guess.
Isn’t that funny (not funny) how people just want to reduce you to the little bit of improvement you’ve made? Like “you’re any bit better, right? So maybe stop whining.” Or that improvement is an all or nothing situation. People just cannot accept others’ suffering. It either makes them so intensely uncomfortable or they just want to move on with their own lives. Until, that is, a major health problem strikes them, and then it’s a whole new ballgame.
Interesting what you say too about the percentages. I do struggle with this assessment still myself, partly because I find that the further and further away I get from who I used to be (so similar to you in terms of how active I was professionally and personally), the less I am able to assess the percentages with any real accuracy. It’s like I’ve forgotten what 100% feels like or the goalpost has been moved or something. So, I think I’m at 60%? 🤷🏼♀️ but now here I am during a super stressful week and I feel like I’ve taken a few steps back. So it’s still quite variable.
Yes please to there being a recovery in pictures! Outstanding article on illness in pictures…inspired to contemplate running something similar.
Thanks so much for sharing so many aspects to this stage of your journey, you incredible being.
I’m 6 years in this June and only walked my first ten mile (mainly flat) walk last September. It occurred to me it had probably been ten years since I was last able to do that. This year I’ve climbed mountains I haven’t been able to climb in many years. I still have to time it with where i am in my menstrual cycle. But even on my most challenged times of the month, I can actually do stuff now like go out for the day on a bit of a (decent enough) walk. Whereas I couldn’t do that at all before this year.
I’d love to see more on how you approached what you’ve done in addition to what’s helped on your recovery journey. I am fascinated in chronic illness journeys so read as many as I can. And I’m starting to see those of us who have done all the things and are yet still chronically unwell. So I don’t know that it’s so much about what we’ve done but how we’ve done it and our approach to it. Like, for me, I’ve been interested in the part our belief system plays for a while. But also what happens when we learn to let our body lead the way. To listen to what it has to say and respond accordingly. This approach has led me to doing all the things but in a very intentional and one step at a time way. I was never looking for a cure, a way of controlling/managing or fixing. I did it with the least amount of pressure and stress I could (unusual for me). And I had some brutal lessons to learn along the way (no more pushing, striving, forcing or driving myself forwards being one of them). I’m becoming more and more interested in this aspect of our journeys and am rewriting my book so that it comes from this angle.
You bring up such a good point, Amber. The approach and the beliefs/mentalities are as much a part of this as any group of treatments. This has definitely been true for me. I’m so looking forward to this book of yours. I’ve come to know you as a deep thinker about all of this and that really resonates with me.
And my goodness- congratulations on scaling mountains! That is so inspiring to this hiker girl 🧡
Honestly the day will come when you are able to do that again, it is possible. I climbed a small mountain (more of a big hill really) last year. It was challenging enough for me. I didn’t overdo it but I def couldn’t do more that day. I’ve been happy to be patient in that arena. Any hills I’ve climbed before that I’ve had to rest all the way up at frequent intervals, take my time, meet myself where I’m at sort of thing and not push myself.
Thanks for the compliment on being a deep thinker - I’ve def had to do that for the sole purpose of writing this book! I’ve had to get beyond the “yeah I changed my diet and that was the main thing” sort of way of looking at it. (Though I did think that was the big thing in the first 6 months because I underestimated all the combination of everything including and especially, the emotional, the pressure I took away from myself etc).
Overcoming chronic illness from the point of disability in a world where disability by chronic illness (& chronic illness generally) is increasing goes way deeper than that!
Thank you, Rosemary. You’ve really hit the nail on the head: this both truly sucks hard AND every day brings some small measure of joy, if you train yourself to look for it. 🧡
Hiii I'm a newer follower, with a pretty similar origin story of being in care provision and being sick with longcovid since acute infection in the first wave. Always happy to hear what has worked for you and also incredible to see photos of your journey -- I try to stay anonymous in mine but you're welcome to snoop since you like to know who your followers/readers are! https://couchcrafts.wordpress.com/
Thank you for sharing your journey. I too have the unfortunate distinction of having ME/CFS and Long Covid and MCAS is my most recent addition to the mix, along with some heavy grief. Reading your story made me realize how isolated I’ve become. I feel like no one can understand what I’ve been going through. The MCAS has been the biggest challenge. I would love to hear more about what you’ve found to be helpful, lifestyle choices, supplements, etc. not in a prescriptive way, but maybe in a hopeful way. ☺️thank you, again! Julie
Thanks for reading and commenting, Julie. It’s so true that most people around us can’t understand what it means to be alive but to have your life basically taken from you in most ways. That grief took me a few years to work through and still comes in waves, as grief tends to do in general. One book that helped a lot with this was The Chronic Illness Workbook by Patricia Fennell. It’ll be included in my post on recovery strategies, but I don’t want to wait a few weeks to tell you about it.
It’s also interesting about the MCAS; my functional medicine doc of the last two years now thinks it’s at the root of a lot of my other symptoms. It’s so hard for me to know what’s working there. I’m on three meds and one supplement specifically for it. Maybe it’s part of why I’m slowly getting better? Who really knows.
I also think the MCAS is the root of many of my symptoms. And I’m curious to read more research on how our mitochondria is impacted or how it plays a role. Thank you for the book suggestion. I’m looking forward to your post on recovery strategies.
I really appreciate you sharing your story. This is such a great post full of resources.
I have some of these weird symptoms too - the eczema just on the right arm!! Why is it just on one side?! And little clots. This actually really helps to feel less alone. Thank you.
Oh your story of your doctor being useless is hitting home right now. When they say you have to be your own biggest health advocate they sure as hell mean it. Some notes
1. Remember that song “with arms wide opppppeeennn” it’s playing in my head now with those hiking photos
2. I will only ask you what you are reading and how are the babies
3. Speaking of babies, Zira Bowie is looking good!!
4. Flesh prison lol
5. Thank you for sharing your stories. Health and our bodies can be a mysterious thing and we need each other to make sense of it sometimes
Thanks for the reflections and updates and hoping that you continue improving each day! You have a way with words that draw the reader in and makes me think about and appreciate what I have in life!
This is one of my favorite posts of yours Amy! You do an amazing job of bringing your reader along on your journey. I’m glad to hear there’s been some improvement in your condition, and I really hope it continues for you. I think the combination of personal stories with factual content is really helpful for everyone - not just those with Long Covid. xo Paula
Aww, that means a lot to me, Paula - especially coming from someone who has been here with me from the beginning and has read most of my stuff. How are you these days? My endo just increased my metformin because my fasting blood sugar keeps coming in at over 100. Crazy, this virus!
I am doing well! In December we added Ozempic to my diabetes treatment, while still staying on Metformin. My numbers have improved but I still have a ways to go. I’ve lost a little weight (5 lbs), which is nice.
Great post. Sounds as though you may be turning a corner; Perhaps approaching a turn ? Your experience sounds a lot like mine, but I don't recall blue / brown under my nails though; once or twice maybe. Everything else checked the same. Two big differences though, I am much older than you. Also, three years previous to catching covid - omicron variety (1-2-20), I survived an antibiotic resistant staph infection that wasn't discovered until I went into septic shock and had a seizure in a minute clinic, at 62 y/o. Although I survived, it left me with certain 'gifts', disabling me with post sepsis syndrome (findable on the CDC website if dummy hasn't' finished blowing that up). Covid nearly did me in too, and the long hauler's on top of the previous mess has been discouraging, but I keep getting back up. Thanks for what you're doing. There are others doing this and it's at least some comraderie and other tips. Sounds as though you have a similar sense of humor too; sarcasm. The sense of humor does help doesn't it ? Brava ~
Thanks for reading, D4N. And WOW! The staph infection-seizure-sepsis situation is super scary! Some of us are just “lucky” I guess to be susceptible to these post-(fill in the blank) syndromes.
I love a fellow sarcastic person! We somehow find each other 😜
Amy, this is SUCH OUTSTANDING COVERAGE and exactly what more of us need to see and read and experience. Thank you for putting the time, energy, heart, and devotion into all of it. It's valuable to so many communities, and I haven't found enough other sources doing this work.
And also thanks for being a friend, for putting my humble substack "interest" request front and center, and for promoting goodness all around. So many good feelings from all of this!
Robin, I so appreciate your kind words and support. I do always hope that my subscribers are a mix of long COVID and non-LC folks, so that there’s both a sense of community and awareness raising. I bet you probably feel much the same way about your own newsletter?
Always happy to elevate a message here - just say the word 🧡
You always amaze me with your tenacity, your wit, and your razor-sharp writing. I learn so much about Long Covid from you -- you're my trusted source of information. (Luckily, I don't have Long Covid, but I have a strong desire to learn about and support those who do. I feel like our country has let so many people down.) Anyway, just here to say how grateful I am that you continue to share your journey. And pizza is great, but what about TACOS???
I really appreciate you non-LC folks who come along for this ride with me. That means the world! Glad I can make some folks laugh as well. I feel like your writing is very similar: poignant, thought-provoking, funny, full of joy even when it’s about hard stuff.
Don’t be mad: I don’t really get the obsession with tacos? I don’t eat meat so maybe that’s part of it. I also find them to be messy. Pizza > tacos, but hit me with your best argument here! 😆
Well, I’m a lesbian, so… tacos are included in the handbook. 🤷♀️
🤣🤣🤣 #themoreyouknow 🌈
I love that you’re learning about long C so that you can learn about it and better understand and support those that do live with it. I only ever had one person in my life suggest they’d like to research and understand more about the complexities of what I’ve been enduring all this time (not long c with me but migraine disease and a whole cocktail of other chronic illness). It’s good to know there are others out there taking an interest, heart warming even.
I don’t know why it still surprises me how similar all of our stories are. My 4 years is coming at the end of May and we have stunningly similar experiences. Helps me not feel alone, then angry because there’s still so much lack of knowledge in the medical community despite the similarities. Thank you for sharing your story. Puts words to my experience when I don’t have the strength to.
Thanks for reading and commenting, Valerie. How would you say you’re doing these days? It is stunning to see the lack of knowledge out there, and yet I have found that within the last year, every new doctor I see for any reason has taken what I’ve told them about my LC very seriously. That’s certainly a change from the first few years. I wonder though if that’s true for me because I live in a populated area outside of NYC. I don’t imagine this is true everywhere.
There has definitely been improvement since 2021 (my worst year). I’ve had 3 procedures that seemed to have the most impact. I had bilateral iliac vein stents placed for May-Thurner’s syndrome. This was the silver lining/blessing of getting so sick. If I wasn’t so sick, it may not have been found and would have killed me. My right side was 100% kinked off and left side 80%. I then had EVLT on both greater saphenous veins which significantly improved the regurge/blood pooling in my legs.
I’m still unable to work and likely won’t ever be able to work in an operating room again. The cognitive dysfunction and fatigue are still my biggest rate limiters. I’ve found I can be somewhat physically active OR somewhat mentally active. NEVER both and sometimes neither. Still have significant sleep issues which of course makes all of my symptoms worse.
I still have a primary care doctor who thinks Long Covid is exceedingly rare and does not believe I have it. Thank god for my plastic surgeon, who first diagnosed me and my Long Covid doc who confirmed it!…Eventually, so did Mayo Clinic. Although we haven’t found many treatments that help, being believed and understood goes along way to contribute to wellbeing!
Thankfully, I now have a LARGE team of docs that I have cultivated through trial and error seeing well over 50 doctors in the last 4 years. They do a great job of working with me to optimize my health as much as possible. The things we have found that help contribute to some quality of life are:
Weekly vitamin and normal saline IVs- helps my POTS
Concerta- helps with my fatigue but not so much that it lets me overdo it.
Bupropion and Sertraline have my depression/PTSD well controlled
Plavix and aspirin help my cognitive function and leg pain
Aimovig and Ubrely with intermittent Botox injections help my migraines
Linzess has helped my gastroparesis/IBS-C
Thank you for the work you’re doing. I can’t imagine how taxing it must be, but it’s very beneficial to people like myself.
Thank you for sharing this epic story, Amy. What four years. I loved learning more about you, though I'm sorry it's happening in this particular way, and so sorry and angry to hear about the gaslighting from your primary care doctor. You should have been given much better support right from the beginning. And reading about the ups and downs of some recovery and then crashes, ooof — how hopeful and then how discouraging. Thank you for sharing all of this with us; it so helps bring greater understanding about Long Covid. Oh, and the texts and memes were hilarious! Laughter really is a salve in chronic illness and in life. I LOVE PIZZA too. 😂
Thank you for reading and commenting, Brianne. And for your kind words. I had some docs in the beginning who were “brave” enough to say to me, “I’m sorry for your suffering; we just don’t know enough yet about what’s going on or what might help.” I really respected those docs because they were both honest and showed basic human decency.
Mmmm, PIZZA…something I can have again now that my new dietitian wants me off all restrictive diets, stat. Bless her heart! 😄
I'm not a LC patient and I'm no longer an ME/CFS patient. I hope that gives people with LC (and ME/CFS) a bit more hope.
When the pandemic started one of my first thoughts was that ME/CFS was going to finally get the serious attention it deserves.
I don't come back to these patient support spaces enough, to be honest because it triggers all the trauma that took place over decades of medical gaslighting.
I can't over state the importance of patients like Amy who use their limited energy to build and support community.
Hang in there (everyone) and never give up hope. And care for yourselves (physically and emotionally).🙏🏻
Thank you for giving us all a bit of hope, Shayne…and for your kind words about my efforts here 🧡
Thank you Amy for another great post. One thing that stood out was the estimation of improvement in LC. I really struggle with percentage of improvement. I’m no longer in a catatonic state completely breathless, hiding from all stimuli, and hoping I would suddenly die. I am able to attend my sons’ activities most of the time as long as I do absolutely nothing else. So big improvement from 2yrs ago and I’m grateful. But compared to the pre covid me, I’m at best 25% of that person. I traveled for work, speaking at a lot of conferences, while maintaining endurance training, an active social life & a sex life my friends were jealous of. My teenagers struggled to keep up with me. Now I look at my calendar for the week and strategize where to use my spoons, when I can rest, and what can I cancel if I’m not ok. If I explain this to people, the comment is usually, “but you’re better right?”. Umm yeah. I guess.
Isn’t that funny (not funny) how people just want to reduce you to the little bit of improvement you’ve made? Like “you’re any bit better, right? So maybe stop whining.” Or that improvement is an all or nothing situation. People just cannot accept others’ suffering. It either makes them so intensely uncomfortable or they just want to move on with their own lives. Until, that is, a major health problem strikes them, and then it’s a whole new ballgame.
Interesting what you say too about the percentages. I do struggle with this assessment still myself, partly because I find that the further and further away I get from who I used to be (so similar to you in terms of how active I was professionally and personally), the less I am able to assess the percentages with any real accuracy. It’s like I’ve forgotten what 100% feels like or the goalpost has been moved or something. So, I think I’m at 60%? 🤷🏼♀️ but now here I am during a super stressful week and I feel like I’ve taken a few steps back. So it’s still quite variable.
Yes please to there being a recovery in pictures! Outstanding article on illness in pictures…inspired to contemplate running something similar.
Thanks so much for sharing so many aspects to this stage of your journey, you incredible being.
I’m 6 years in this June and only walked my first ten mile (mainly flat) walk last September. It occurred to me it had probably been ten years since I was last able to do that. This year I’ve climbed mountains I haven’t been able to climb in many years. I still have to time it with where i am in my menstrual cycle. But even on my most challenged times of the month, I can actually do stuff now like go out for the day on a bit of a (decent enough) walk. Whereas I couldn’t do that at all before this year.
I’d love to see more on how you approached what you’ve done in addition to what’s helped on your recovery journey. I am fascinated in chronic illness journeys so read as many as I can. And I’m starting to see those of us who have done all the things and are yet still chronically unwell. So I don’t know that it’s so much about what we’ve done but how we’ve done it and our approach to it. Like, for me, I’ve been interested in the part our belief system plays for a while. But also what happens when we learn to let our body lead the way. To listen to what it has to say and respond accordingly. This approach has led me to doing all the things but in a very intentional and one step at a time way. I was never looking for a cure, a way of controlling/managing or fixing. I did it with the least amount of pressure and stress I could (unusual for me). And I had some brutal lessons to learn along the way (no more pushing, striving, forcing or driving myself forwards being one of them). I’m becoming more and more interested in this aspect of our journeys and am rewriting my book so that it comes from this angle.
You bring up such a good point, Amber. The approach and the beliefs/mentalities are as much a part of this as any group of treatments. This has definitely been true for me. I’m so looking forward to this book of yours. I’ve come to know you as a deep thinker about all of this and that really resonates with me.
And my goodness- congratulations on scaling mountains! That is so inspiring to this hiker girl 🧡
Honestly the day will come when you are able to do that again, it is possible. I climbed a small mountain (more of a big hill really) last year. It was challenging enough for me. I didn’t overdo it but I def couldn’t do more that day. I’ve been happy to be patient in that arena. Any hills I’ve climbed before that I’ve had to rest all the way up at frequent intervals, take my time, meet myself where I’m at sort of thing and not push myself.
Thanks for the compliment on being a deep thinker - I’ve def had to do that for the sole purpose of writing this book! I’ve had to get beyond the “yeah I changed my diet and that was the main thing” sort of way of looking at it. (Though I did think that was the big thing in the first 6 months because I underestimated all the combination of everything including and especially, the emotional, the pressure I took away from myself etc).
Overcoming chronic illness from the point of disability in a world where disability by chronic illness (& chronic illness generally) is increasing goes way deeper than that!
Thank you for sharing. You look amazing and I'm glad your recovery is headed in the right direction.
This switch that was flipped and managed to create havoc on our lives sucks. Then again, we made it to celebrate another spoon day.
Rosemary
Thank you, Rosemary. You’ve really hit the nail on the head: this both truly sucks hard AND every day brings some small measure of joy, if you train yourself to look for it. 🧡
What a four years for sure. Thank you for sharing all of this. Also, you have awesome hair 😊
Thanks for reading, Jackie. And thanks for the hair love! 🧡
Hiii I'm a newer follower, with a pretty similar origin story of being in care provision and being sick with longcovid since acute infection in the first wave. Always happy to hear what has worked for you and also incredible to see photos of your journey -- I try to stay anonymous in mine but you're welcome to snoop since you like to know who your followers/readers are! https://couchcrafts.wordpress.com/
I’m so glad you found me, so I could find you! Thanks for being here and for your link 🩷
Thank you for sharing your journey. I too have the unfortunate distinction of having ME/CFS and Long Covid and MCAS is my most recent addition to the mix, along with some heavy grief. Reading your story made me realize how isolated I’ve become. I feel like no one can understand what I’ve been going through. The MCAS has been the biggest challenge. I would love to hear more about what you’ve found to be helpful, lifestyle choices, supplements, etc. not in a prescriptive way, but maybe in a hopeful way. ☺️thank you, again! Julie
Thanks for reading and commenting, Julie. It’s so true that most people around us can’t understand what it means to be alive but to have your life basically taken from you in most ways. That grief took me a few years to work through and still comes in waves, as grief tends to do in general. One book that helped a lot with this was The Chronic Illness Workbook by Patricia Fennell. It’ll be included in my post on recovery strategies, but I don’t want to wait a few weeks to tell you about it.
It’s also interesting about the MCAS; my functional medicine doc of the last two years now thinks it’s at the root of a lot of my other symptoms. It’s so hard for me to know what’s working there. I’m on three meds and one supplement specifically for it. Maybe it’s part of why I’m slowly getting better? Who really knows.
I also think the MCAS is the root of many of my symptoms. And I’m curious to read more research on how our mitochondria is impacted or how it plays a role. Thank you for the book suggestion. I’m looking forward to your post on recovery strategies.
Again, thank you.
Julie, check out Mardi Crane-Godreau’s Substack for much more on mitochondria in long COVID. She’s a font of knowledge.
Yes; That's good advice. I've been reading her for a while now.
Amy, thank you so much for the shout out!
I really appreciate you sharing your story. This is such a great post full of resources.
I have some of these weird symptoms too - the eczema just on the right arm!! Why is it just on one side?! And little clots. This actually really helps to feel less alone. Thank you.
You’re doing such great stuff here, Rey. Happy to elevate whenever! 🧡
So weird that you’re having similar bizarro symptoms. I wish we had some answers. <sigh>.
Yes, absolutely - hoping eventually the answers will come.
Thank you so much! I really love your work.
Oh your story of your doctor being useless is hitting home right now. When they say you have to be your own biggest health advocate they sure as hell mean it. Some notes
1. Remember that song “with arms wide opppppeeennn” it’s playing in my head now with those hiking photos
2. I will only ask you what you are reading and how are the babies
3. Speaking of babies, Zira Bowie is looking good!!
4. Flesh prison lol
5. Thank you for sharing your stories. Health and our bodies can be a mysterious thing and we need each other to make sense of it sometimes
1. 🤣🤣🤣 now it’s stuck in my head
2. love that!
3. 👩🏻🎤 she’s doing well indeed…even yowling at me when she’s unhappy 😂
4. so perfect, right? 😄
5. thank you for saying that and for being one of my consistent non-LC readers. BTW, how are you feeling these days?
Thanks for the reflections and updates and hoping that you continue improving each day! You have a way with words that draw the reader in and makes me think about and appreciate what I have in life!
Thanks for your unwavering support, Jenny! I’ll have to check in with you off-line to see how things are going. Sending love 🧡
This is one of my favorite posts of yours Amy! You do an amazing job of bringing your reader along on your journey. I’m glad to hear there’s been some improvement in your condition, and I really hope it continues for you. I think the combination of personal stories with factual content is really helpful for everyone - not just those with Long Covid. xo Paula
Aww, that means a lot to me, Paula - especially coming from someone who has been here with me from the beginning and has read most of my stuff. How are you these days? My endo just increased my metformin because my fasting blood sugar keeps coming in at over 100. Crazy, this virus!
I am doing well! In December we added Ozempic to my diabetes treatment, while still staying on Metformin. My numbers have improved but I still have a ways to go. I’ve lost a little weight (5 lbs), which is nice.
Interesting! I am glad you seem to be feeling well, even if the numbers aren’t where they need to be yet.
Great post. Sounds as though you may be turning a corner; Perhaps approaching a turn ? Your experience sounds a lot like mine, but I don't recall blue / brown under my nails though; once or twice maybe. Everything else checked the same. Two big differences though, I am much older than you. Also, three years previous to catching covid - omicron variety (1-2-20), I survived an antibiotic resistant staph infection that wasn't discovered until I went into septic shock and had a seizure in a minute clinic, at 62 y/o. Although I survived, it left me with certain 'gifts', disabling me with post sepsis syndrome (findable on the CDC website if dummy hasn't' finished blowing that up). Covid nearly did me in too, and the long hauler's on top of the previous mess has been discouraging, but I keep getting back up. Thanks for what you're doing. There are others doing this and it's at least some comraderie and other tips. Sounds as though you have a similar sense of humor too; sarcasm. The sense of humor does help doesn't it ? Brava ~
Thanks for reading, D4N. And WOW! The staph infection-seizure-sepsis situation is super scary! Some of us are just “lucky” I guess to be susceptible to these post-(fill in the blank) syndromes.
I love a fellow sarcastic person! We somehow find each other 😜