I'm going to be the first dumper (after Elaine Benes, of course). I'm worried about my body that seems to be progressively falling apart. My aching pickleball knee, my deteriorating back that resembles a 70-year-old's spine on the MRI, a thumb that hurts like hell from too much typing, a stomach bug that has lingered way too long, my mother's death from diabetes/MS and my sister's death from lymphoma/glioblastoma (and what those genes might mean for me), a full hysterectomy that's coming up on January 29, and the unemployment that is 10 months old now. Whew. That's it. I'm leaving it here, and I'm walking into 2024 with health and happiness and abundance in my sights. I wish the very same for you, Amy. Happy, happy holidays. XO
I’m honored you’re my first, err, dump 🤭. That’s a whole lot, girl! Very understandable that it’s all on your mind. I have some genetic worries of my own and those are perhaps particularly scary/hard because they’re also fraught with grief. Regarding your knee and spine, have you heard much about Dr. John Sarno’s work around chronic pain? He’s dead but his work lives on through his books and also through a man named Dan Buglio and his YouTube channel, Pain Free You. It’s mind-body stuff around pain and very powerful. Lots of cases of people with findings on scans who go on to get rid of their pain, which is really a protective signal from the brain. Anyway, this is a dump, so feel free to totally ignore this and consider the dump acknowledged nonetheless! Hugs to you, my friend 🧡
Sneaking in for a post-midnight dump (your time)...
Not so much a big worry, but very annoyed that the congestion in my head is clearing out super slowly following my sinus infection. I am hearing better overall, but there's still the cracking in the sinuses behind my ears, and I'm really tired of the coughing jags, though they're not as extensive as they were.
This isn't Covid #3; all the tests are negative, and the onset felt different anyway.
Bright side: I'm not running myself into the ground with a jam packed holiday party/event schedule. In a total "sorry-not-sorry" mood. Coughing jags aside, I'm having a pretty restful December so far.
(Theraflu: 0 stars, do not recommend.)
Bright Yuletide blessings to you, Baldy, and los gatos. ❤
Ughhh, Victoria - I’m sorry this “whatever you had” (maybe it was a hybrid spawn of all the things going around right now 🫣) has lasted so long and is causing so much grief. But I’m very much in support of your holiday boundaries. Just say no! 🥳
I’m only about 3.5 months into this. They’ve ruled out Lyme disease and nothing else so far; another visit with my PCP tomorrow. Is this real? Am I “just” depressed? I hate the idea of the forever unknown looming. I’ve never been fearful of the future before. I told my family weeks ago we would not be hosting Christmas dinner because I’m not up to it (we have for years) and an elderly aunt actually said to me that she was sure I was faking it so I wouldn’t have to have them over. Total meltdown about how I ruined her Christmas. I’m not owning that - but it was still disheartening to hear. Still have hope I’ll spontaneously recover - but this is unlike anything I’ve ever had and I’m in my 60s.
Sheila, this is all so hard. I’m so proud of you for honoring your limitations right now though and setting boundaries. I’ve had disbelieving family too. It’s sheer ignorance and lunacy.
Do you believe you’re dealing with long COVID? Did this all start for you after a known infection or the vaccine? If so, how you are feeling is certainly not all in your head. These symptoms and the way they shrink your life can also bring on depression, and low serotonin has also been found to be a downstream effect of the C-19 virus. So you wouldn’t be “just” depressed, but you may be having serious symptoms AND be depressed.
For what it’s worth, Dr. Akiko Iwasaki’s research has uncovered three things that point to LC: low cortisol, Epstein Barr viral reactivation, and T cell exhaustion. Your PCP may not be versed in the T cell test, but they can certainly order a morning cortisol test as well as testing your EBV early antigen and nuclear antigen. They can discern if you’ve had a past infection and/or a reactivation. These may start to provide some clues. A good infectious disease doctor or rheumatologist can also be helpful. I’m wishing the best for you. Stay in touch if it’s helpful 🧡
Thanks for the tips! I’ve had Covid twice, most recently beginning Sept 1 and the fatigue, headaches, brain fog, blurry vision etc etc began almost immediately after I got through the acute symptoms. Still going on now...and I know I don’t have it nearly as bad as others but it’s still a bit of a challenge.
That sounds pretty bad, Sheila! You have the main “cardinal” symptoms. Has anyone properly diagnosed you yet with long COVID? Also, do your symptoms get worse after any kind of physical or cognitive exertion? (Known as “post exertional malaise”).
I'm worried about the damage that long covid has done to my brain. I begged for oxygen for so long watching my oxygen saturation drop at night, but it was always normal at the doctors' offices. The confusion, loss of words, inability to process words spoken to me too quickly, inablility to do simple math and short term memory loss is just not normal. These symptoms have improved, but still occur.
I'm scared of early onset of demenia.
Conversely, what gives me hope is seeing ongoing research and investment in Long COVID. My goal is to hang in there and educe the damage where I can until science can catch up and help all of us.
Molly! I owe you an email. And thank you for sharing this. I have had similar concerns. Before COVID, I had eight years of chronic migraines (20-25 days/mo), and I had some disturbing symptoms (like stopping at green lights and limb dissociation) that made me feel like I too was going to eventually suffer from a neurological disease. Then COVID came and the cognitive impairment was REAL. They also found a lesion on my brain that hadn’t been there on an MRI from the prior year. Luckily over these almost four years, my brain stuff is mostly resolved. But I do still have my days - yesterday I was doing a basic chore, and I started doing the steps to that chore out of order. It’s days like that that make me realize I’m not 100% healed from neuroinflammation (though the lesion is dissipating, as seen on an MRI this year).
I fear, like you, that there may be generations of people here at increased risk for developing dementia, Alzheimer’s, Parkinson’s. Can you imagine a world where so many more millions of us have those things? Yikes.
I am hopeful like you are about research and treatments 🤞🏻. An LC researcher recently said no other disease has gotten this far in terms of answers in such a short timeframe. So, let’s stay with hope! 🧡
My health worry is for my wife of 38 years. We're both 61. She's had tingling and numbing of her fingers and hands off and on for almost two years. Mostly the left side. Finally, the doctor ruled out anything anatomical and finally a second neurologist looked for a specific marker that identified her as having an autoimmune disease that goes by the acronym of MADSAM. All the doctors, including her rheumatologist and the first neurologist agree with this diagnosis. Essentially, it means that her nerve linings are thickening. A successful treatment for it is a course of IVIG infusions. Anecdotally, it has had high success in stopping MADSAM progression and reversing it. Anecdotally, because an RCT is impractical.
So, while I show reasonable optimism to her, inside I worry a lot about what will happen if the infusions do not work. I don't know of other options for a cure. The disease is not fatal but could be very activity limiting. And she is very active, strong, and otherwise healthy.
So we seem to have a lot riding on the infusions.
Thanks for giving me a safe space to write about this worry of mine.
Wow, David - thank you for trusting me enough to dump. I just looked this up. It seems to be a demyelinating disorder (which is more like a thinning or erosion of the sheath around certain nerves - am I understanding this right based on what you’ve been told?). It is definitely disconcerting, particularly if it’s progressive. I have small fiber neuropathy as a result of long COVID and it’s not super painful - just an annoyance. But it’s a symptom of several things, potentially, so hopefully it just holds steady. I don’t know if you’ll find this helpful, but I did two months of IVIG recently (had to stop; too expensive) and my neuropathy basically disappeared. Since I’ve been off of it, it’s back with a vengeance. IVIG can greatly improve her quality of life, I would think. If a monthly infusion is too much for her (it’s many hours long), they can give her the subcutaneous kind. You will both be in my thoughts; please update me if you remember! 🧡
Thanks for the shout-out! Another great read. I had no idea that EBV and MCAS could predispose long-haulers to certain cancers and MS. That is very stressful and something I'll be researching further. For me, my main fears are usually around reinfection because COVID risks are so hard to manage given how few precautions there are and it feels as though it could happen at any moment. I hope you have a wonderful holiday period and look forward to reading more of your writing in the new year ❤️
Thank you, Naïma! And, I’m sorry if I planted some new fears in your head 🥺. I am currently having a family holiday weekend bonanza and also quite worried about reinfection. I hope you stay safe! Hugs 🤗
I got Covid for the first time. I seem to have gotten off lightly but will mention it the next time I see my doc. But yay. Nearly made it to 4 years. In the back of my mind is mortality but hey, I’m getting old, when is that Not drifting through the usual anxious murk. (Would much rather worry about my Substack please and thank you)
I’m so relieved you got off relatively easy with COVID! That’s always something of a wild card, even if you’ve been vaxed. You may want to keep your precautions up to avoid subsequent infections; there’s new research out that shows that your risk of LC goes up a lot with each infection. Stay safe out there, Leanne! 🧡
I've been on a restricted dose of testosterone for months now due to high hematocrit and hemoglobin. It triggers pretty intense dysphoria for me at random times (sometimes lasting days) as well as other side effects from being low on hormones in general (like never ending hot flashes, oh joy). I waited for months to do a sleep study to see if sleep apnea could be a contributor only to have the clinic cancel day of and reschedule me for February... Which means I can't get a higher dose of T for several more months now. It's immensely depressing to face that truth, so what a relief to dump it here and walk away! Thank you!
Oh, Robin - thank you so much for sharing this here. I have friends on T and I have heard how unmooring it can be when the dose is not exactly what it needs to be. And having to wait until at least February for an answer - could there be a worse time of year to not feel like yourself? I’m truly sorry you have to experience this. I am having hot flashes lately as a side effect of immune therapy (and likely because I’m 48 cis female and perimenopausal). While I can vouch for how terribly unpleasant they are, in many ways they are syntonic with my gender identity, so not nearly as physically and more importantly emotionally impactful as they are for you. I’m sending you love and care through the ether, Robin. Thanks again for your trust dump here 🧡
I’ve just lost an entire comment about this 🙃 I’m wondering if it’s a sign I need to turn it into a blog instead!?
As It’s not that I didn’t have health worries (I was disabled by illness and lost everything including my career, income, home etc), it’s how I responded to it at this time onwards that I think is very different.
Just as a quick example, when I found out I was at higher risk of heart disease, strokes etc, instead of worrying myself sick over it I asked myself the question “how do I reduce the risk of this happening to me?” and took it from there.
I had worried myself sick in the past - into a mental health breakdown and near suicide - but from the point of complete disability by illness something had changed for me.
And this is, of course, not to say I don’t have worries or massive things crop up with my health (there’s been a lot). I don’t see it as a mindset thing either (I find that triggering to suggest a simple change in mindset can achieve what I have after all I’ve been through so I wouldn’t dream of suggesting that to anyone else), it goes much deeper than that, is much more complex and there’s a lot to it.
Amber, if the comment you lost was better than this one, then I DO hope you turn it into a post because I’ll be your first reader! What you’ve said here resonates with me so much. There’s something about getting an illness that takes almost everything from you that adds a bit of perspective to what matters most in life (and how our illusion of total control is just that - an illusion). I’ve just finished a book called The Anatomy of Hope by Dr. Jeremy Groopman and there were so many different examples of patients choosing or losing hope in the face of potentially deadly illnesses. It was a really great read. I think I will handle any future health risks similarly to what you’ve laid out here. Thank you for sharing it, and as always, I look forward to your post on the topic 🧡
Awww thanks so much Amy 🥰🙏 what was the difference between the patients choosing hope as opposed to the ones who lost it?
I’m fascinated by the part both hope and belief play in our road to recovery. At one time I thought all I had was hope but upon writing and sharing about my journey, I realise I had so much more than hope and belief seems to play a helll of a factor. Maybe I need to read this book because “hope is a healing path”’is a message i received. However, I don’t yet fully understand the message and what it means.
For some, it was religious or spiritual faith. For others, it was just a fierce desire to cling to all the good things about being alive. One patient in the book had zero hope and wanted to be left to die (in his 40s with a wife he loved that he’d leave behind). The doctor had to figure out how to crack the code on this guy’s hope, because there was a decent chance the treatments would save his life. Eventually the doc realized that the guy had an army buddy who died from cancer and so he believed strongly that he’d meet the same fate. Luckily the doc broke through this false narrative and the guy started treatment in time, and lived a full life after recovering.
I knew belief had so much to do with it !!!!! This is fascinating. My belief that I can heal myself fully has never wavered - the more I’ve read and researched, the stronger my belief has become. The only thing I didn’t see coming was the runs it would take 🙃 I’m 5.5 years in to this leg of my journey and I’m well mostly around 95% of the time. After the last week I’ve had (talked about it in my latest warrior weekly shared tonight), I feel certain I will achieve full freedom from pain and associated migraine symptoms within the next year.
Kimia! Thank you for sharing that. I have had both vertigo and tinnitus on and off throughout my adult life, and it sucks beyond the telling. The vertigo in particular just levels you. My sister in law also has Meniere’s - she’s been disabled by it for 25 years. The onset of hers came after a flight out west and several sharp elevation changes she had while out there. This all happened within a year of her wedding. It’s been very rough for her. And you are right - there is so little that doctors know about this condition. She’s been to Mayo and Johns Hopkins and they’ve all told her that there’s a long shot surgery she could have if a bone in her ear had a hole in it. But in her, it’s paper thin but doesn’t have a hole. So it causes her all the grief, but she’s not eligible for the surgery.
I don’t suspect you’ll be able to dump and run fully away from this, as his condition is a reality of your lives. But hopefully you both can carpe the diems when he’s not in a flare and that you and he get a respite from this over the holidays. Thank you again for sharing 🧡
This is definitely one of those diagnoses that most people just can’t understand. My SIL can no longer travel by any mode more than 15-20 minutes from home, and even then she’s laid up for weeks after. Is there anything that doctors prescribe that helps him during his flares? I’m sending you guys all my good juju. And so thankful that he recovered from his flare by your wedding day!
I'm going to be the first dumper (after Elaine Benes, of course). I'm worried about my body that seems to be progressively falling apart. My aching pickleball knee, my deteriorating back that resembles a 70-year-old's spine on the MRI, a thumb that hurts like hell from too much typing, a stomach bug that has lingered way too long, my mother's death from diabetes/MS and my sister's death from lymphoma/glioblastoma (and what those genes might mean for me), a full hysterectomy that's coming up on January 29, and the unemployment that is 10 months old now. Whew. That's it. I'm leaving it here, and I'm walking into 2024 with health and happiness and abundance in my sights. I wish the very same for you, Amy. Happy, happy holidays. XO
I’m honored you’re my first, err, dump 🤭. That’s a whole lot, girl! Very understandable that it’s all on your mind. I have some genetic worries of my own and those are perhaps particularly scary/hard because they’re also fraught with grief. Regarding your knee and spine, have you heard much about Dr. John Sarno’s work around chronic pain? He’s dead but his work lives on through his books and also through a man named Dan Buglio and his YouTube channel, Pain Free You. It’s mind-body stuff around pain and very powerful. Lots of cases of people with findings on scans who go on to get rid of their pain, which is really a protective signal from the brain. Anyway, this is a dump, so feel free to totally ignore this and consider the dump acknowledged nonetheless! Hugs to you, my friend 🧡
Sneaking in for a post-midnight dump (your time)...
Not so much a big worry, but very annoyed that the congestion in my head is clearing out super slowly following my sinus infection. I am hearing better overall, but there's still the cracking in the sinuses behind my ears, and I'm really tired of the coughing jags, though they're not as extensive as they were.
This isn't Covid #3; all the tests are negative, and the onset felt different anyway.
Bright side: I'm not running myself into the ground with a jam packed holiday party/event schedule. In a total "sorry-not-sorry" mood. Coughing jags aside, I'm having a pretty restful December so far.
(Theraflu: 0 stars, do not recommend.)
Bright Yuletide blessings to you, Baldy, and los gatos. ❤
Ughhh, Victoria - I’m sorry this “whatever you had” (maybe it was a hybrid spawn of all the things going around right now 🫣) has lasted so long and is causing so much grief. But I’m very much in support of your holiday boundaries. Just say no! 🥳
I can totally see a viral hoedown where all the colds and flus and other nasty viruses swap RNA segments as they do-si-do to the music.
I’m only about 3.5 months into this. They’ve ruled out Lyme disease and nothing else so far; another visit with my PCP tomorrow. Is this real? Am I “just” depressed? I hate the idea of the forever unknown looming. I’ve never been fearful of the future before. I told my family weeks ago we would not be hosting Christmas dinner because I’m not up to it (we have for years) and an elderly aunt actually said to me that she was sure I was faking it so I wouldn’t have to have them over. Total meltdown about how I ruined her Christmas. I’m not owning that - but it was still disheartening to hear. Still have hope I’ll spontaneously recover - but this is unlike anything I’ve ever had and I’m in my 60s.
Sheila, this is all so hard. I’m so proud of you for honoring your limitations right now though and setting boundaries. I’ve had disbelieving family too. It’s sheer ignorance and lunacy.
Do you believe you’re dealing with long COVID? Did this all start for you after a known infection or the vaccine? If so, how you are feeling is certainly not all in your head. These symptoms and the way they shrink your life can also bring on depression, and low serotonin has also been found to be a downstream effect of the C-19 virus. So you wouldn’t be “just” depressed, but you may be having serious symptoms AND be depressed.
For what it’s worth, Dr. Akiko Iwasaki’s research has uncovered three things that point to LC: low cortisol, Epstein Barr viral reactivation, and T cell exhaustion. Your PCP may not be versed in the T cell test, but they can certainly order a morning cortisol test as well as testing your EBV early antigen and nuclear antigen. They can discern if you’ve had a past infection and/or a reactivation. These may start to provide some clues. A good infectious disease doctor or rheumatologist can also be helpful. I’m wishing the best for you. Stay in touch if it’s helpful 🧡
Thanks for the tips! I’ve had Covid twice, most recently beginning Sept 1 and the fatigue, headaches, brain fog, blurry vision etc etc began almost immediately after I got through the acute symptoms. Still going on now...and I know I don’t have it nearly as bad as others but it’s still a bit of a challenge.
That sounds pretty bad, Sheila! You have the main “cardinal” symptoms. Has anyone properly diagnosed you yet with long COVID? Also, do your symptoms get worse after any kind of physical or cognitive exertion? (Known as “post exertional malaise”).
I think we’re working toward that diagnosis now. And yes, I do pay for it if I exert myself. It certainly seems like it’s LC but - I’m not a doctor.
It absolutely sounds that way to me too. Good luck tomorrow!
Also fully vaxxed
I'm worried about the damage that long covid has done to my brain. I begged for oxygen for so long watching my oxygen saturation drop at night, but it was always normal at the doctors' offices. The confusion, loss of words, inability to process words spoken to me too quickly, inablility to do simple math and short term memory loss is just not normal. These symptoms have improved, but still occur.
I'm scared of early onset of demenia.
Conversely, what gives me hope is seeing ongoing research and investment in Long COVID. My goal is to hang in there and educe the damage where I can until science can catch up and help all of us.
Molly! I owe you an email. And thank you for sharing this. I have had similar concerns. Before COVID, I had eight years of chronic migraines (20-25 days/mo), and I had some disturbing symptoms (like stopping at green lights and limb dissociation) that made me feel like I too was going to eventually suffer from a neurological disease. Then COVID came and the cognitive impairment was REAL. They also found a lesion on my brain that hadn’t been there on an MRI from the prior year. Luckily over these almost four years, my brain stuff is mostly resolved. But I do still have my days - yesterday I was doing a basic chore, and I started doing the steps to that chore out of order. It’s days like that that make me realize I’m not 100% healed from neuroinflammation (though the lesion is dissipating, as seen on an MRI this year).
I fear, like you, that there may be generations of people here at increased risk for developing dementia, Alzheimer’s, Parkinson’s. Can you imagine a world where so many more millions of us have those things? Yikes.
I am hopeful like you are about research and treatments 🤞🏻. An LC researcher recently said no other disease has gotten this far in terms of answers in such a short timeframe. So, let’s stay with hope! 🧡
My health worry is for my wife of 38 years. We're both 61. She's had tingling and numbing of her fingers and hands off and on for almost two years. Mostly the left side. Finally, the doctor ruled out anything anatomical and finally a second neurologist looked for a specific marker that identified her as having an autoimmune disease that goes by the acronym of MADSAM. All the doctors, including her rheumatologist and the first neurologist agree with this diagnosis. Essentially, it means that her nerve linings are thickening. A successful treatment for it is a course of IVIG infusions. Anecdotally, it has had high success in stopping MADSAM progression and reversing it. Anecdotally, because an RCT is impractical.
So, while I show reasonable optimism to her, inside I worry a lot about what will happen if the infusions do not work. I don't know of other options for a cure. The disease is not fatal but could be very activity limiting. And she is very active, strong, and otherwise healthy.
So we seem to have a lot riding on the infusions.
Thanks for giving me a safe space to write about this worry of mine.
Wow, David - thank you for trusting me enough to dump. I just looked this up. It seems to be a demyelinating disorder (which is more like a thinning or erosion of the sheath around certain nerves - am I understanding this right based on what you’ve been told?). It is definitely disconcerting, particularly if it’s progressive. I have small fiber neuropathy as a result of long COVID and it’s not super painful - just an annoyance. But it’s a symptom of several things, potentially, so hopefully it just holds steady. I don’t know if you’ll find this helpful, but I did two months of IVIG recently (had to stop; too expensive) and my neuropathy basically disappeared. Since I’ve been off of it, it’s back with a vengeance. IVIG can greatly improve her quality of life, I would think. If a monthly infusion is too much for her (it’s many hours long), they can give her the subcutaneous kind. You will both be in my thoughts; please update me if you remember! 🧡
You're right. it's the thinning not the thickening!
It was a struggle, but we were able to get insurance approval after about a month or so.
I have some questions. Do you mind if I email you?
Not at all: coppertop963 at gmail dot com
Thanks for the shout-out! Another great read. I had no idea that EBV and MCAS could predispose long-haulers to certain cancers and MS. That is very stressful and something I'll be researching further. For me, my main fears are usually around reinfection because COVID risks are so hard to manage given how few precautions there are and it feels as though it could happen at any moment. I hope you have a wonderful holiday period and look forward to reading more of your writing in the new year ❤️
Thank you, Naïma! And, I’m sorry if I planted some new fears in your head 🥺. I am currently having a family holiday weekend bonanza and also quite worried about reinfection. I hope you stay safe! Hugs 🤗
I got Covid for the first time. I seem to have gotten off lightly but will mention it the next time I see my doc. But yay. Nearly made it to 4 years. In the back of my mind is mortality but hey, I’m getting old, when is that Not drifting through the usual anxious murk. (Would much rather worry about my Substack please and thank you)
I’m so relieved you got off relatively easy with COVID! That’s always something of a wild card, even if you’ve been vaxed. You may want to keep your precautions up to avoid subsequent infections; there’s new research out that shows that your risk of LC goes up a lot with each infection. Stay safe out there, Leanne! 🧡
I've been on a restricted dose of testosterone for months now due to high hematocrit and hemoglobin. It triggers pretty intense dysphoria for me at random times (sometimes lasting days) as well as other side effects from being low on hormones in general (like never ending hot flashes, oh joy). I waited for months to do a sleep study to see if sleep apnea could be a contributor only to have the clinic cancel day of and reschedule me for February... Which means I can't get a higher dose of T for several more months now. It's immensely depressing to face that truth, so what a relief to dump it here and walk away! Thank you!
Oh, Robin - thank you so much for sharing this here. I have friends on T and I have heard how unmooring it can be when the dose is not exactly what it needs to be. And having to wait until at least February for an answer - could there be a worse time of year to not feel like yourself? I’m truly sorry you have to experience this. I am having hot flashes lately as a side effect of immune therapy (and likely because I’m 48 cis female and perimenopausal). While I can vouch for how terribly unpleasant they are, in many ways they are syntonic with my gender identity, so not nearly as physically and more importantly emotionally impactful as they are for you. I’m sending you love and care through the ether, Robin. Thanks again for your trust dump here 🧡
I’ve just lost an entire comment about this 🙃 I’m wondering if it’s a sign I need to turn it into a blog instead!?
As It’s not that I didn’t have health worries (I was disabled by illness and lost everything including my career, income, home etc), it’s how I responded to it at this time onwards that I think is very different.
Just as a quick example, when I found out I was at higher risk of heart disease, strokes etc, instead of worrying myself sick over it I asked myself the question “how do I reduce the risk of this happening to me?” and took it from there.
I had worried myself sick in the past - into a mental health breakdown and near suicide - but from the point of complete disability by illness something had changed for me.
And this is, of course, not to say I don’t have worries or massive things crop up with my health (there’s been a lot). I don’t see it as a mindset thing either (I find that triggering to suggest a simple change in mindset can achieve what I have after all I’ve been through so I wouldn’t dream of suggesting that to anyone else), it goes much deeper than that, is much more complex and there’s a lot to it.
Def something for me to write about.
Amber, if the comment you lost was better than this one, then I DO hope you turn it into a post because I’ll be your first reader! What you’ve said here resonates with me so much. There’s something about getting an illness that takes almost everything from you that adds a bit of perspective to what matters most in life (and how our illusion of total control is just that - an illusion). I’ve just finished a book called The Anatomy of Hope by Dr. Jeremy Groopman and there were so many different examples of patients choosing or losing hope in the face of potentially deadly illnesses. It was a really great read. I think I will handle any future health risks similarly to what you’ve laid out here. Thank you for sharing it, and as always, I look forward to your post on the topic 🧡
Awww thanks so much Amy 🥰🙏 what was the difference between the patients choosing hope as opposed to the ones who lost it?
I’m fascinated by the part both hope and belief play in our road to recovery. At one time I thought all I had was hope but upon writing and sharing about my journey, I realise I had so much more than hope and belief seems to play a helll of a factor. Maybe I need to read this book because “hope is a healing path”’is a message i received. However, I don’t yet fully understand the message and what it means.
For some, it was religious or spiritual faith. For others, it was just a fierce desire to cling to all the good things about being alive. One patient in the book had zero hope and wanted to be left to die (in his 40s with a wife he loved that he’d leave behind). The doctor had to figure out how to crack the code on this guy’s hope, because there was a decent chance the treatments would save his life. Eventually the doc realized that the guy had an army buddy who died from cancer and so he believed strongly that he’d meet the same fate. Luckily the doc broke through this false narrative and the guy started treatment in time, and lived a full life after recovering.
I knew belief had so much to do with it !!!!! This is fascinating. My belief that I can heal myself fully has never wavered - the more I’ve read and researched, the stronger my belief has become. The only thing I didn’t see coming was the runs it would take 🙃 I’m 5.5 years in to this leg of my journey and I’m well mostly around 95% of the time. After the last week I’ve had (talked about it in my latest warrior weekly shared tonight), I feel certain I will achieve full freedom from pain and associated migraine symptoms within the next year.
*time not runs !
Kimia! Thank you for sharing that. I have had both vertigo and tinnitus on and off throughout my adult life, and it sucks beyond the telling. The vertigo in particular just levels you. My sister in law also has Meniere’s - she’s been disabled by it for 25 years. The onset of hers came after a flight out west and several sharp elevation changes she had while out there. This all happened within a year of her wedding. It’s been very rough for her. And you are right - there is so little that doctors know about this condition. She’s been to Mayo and Johns Hopkins and they’ve all told her that there’s a long shot surgery she could have if a bone in her ear had a hole in it. But in her, it’s paper thin but doesn’t have a hole. So it causes her all the grief, but she’s not eligible for the surgery.
I don’t suspect you’ll be able to dump and run fully away from this, as his condition is a reality of your lives. But hopefully you both can carpe the diems when he’s not in a flare and that you and he get a respite from this over the holidays. Thank you again for sharing 🧡
This is definitely one of those diagnoses that most people just can’t understand. My SIL can no longer travel by any mode more than 15-20 minutes from home, and even then she’s laid up for weeks after. Is there anything that doctors prescribe that helps him during his flares? I’m sending you guys all my good juju. And so thankful that he recovered from his flare by your wedding day!