I think you are remarkable and I appreciate your sharing your physical limitations. Also to be aware of changes in our health. I have Dry Macular Degeneration and am more aware of changes in my eye health. It would mean a lifestyle change to become unable to drive. Pride as well as being a burden to loved ones. I am blessed to be in a community that will drive others to appointments. Thank you for your newsletter. I share it.
As someone who works in health care I see so many different ways of relating to medical issues (although the ones I work with are not as serious as retinal detachment). The folks who fully lock in and stay that way are in for a very long ride on an already arduous journey. It's great you outline the steps Janice, it may help some folks to be able to soften in to what is happening.
Hi Janice. You are a brave soul. I've had all sorts of maladies cropping up in the past six years. But the last year has been challenging. I suspect grief is playing a role. For now, I like to say I put the fires out - whatever issue surfaces I address it. I'm still battling finding a primary care doctor. I finally found one who will take me, but not for another month. So I suffer, well, let's say I'm not at my best.
I dread the day that ears, eyes, mobility, and teeth are challenged... well for that matter any body part that goes south. But I'm determined not to talk about it. Discuss it. Make it part of my story. Just keep moving and hope I dodge "it" and live to see another day (no pun intended, I promise.
I'm getting ready to finally close on the condo, a very long and sad year, but the end of this era is near, so looking forward to brighter days ahead, of course they will never be the same without Carl... but I'm still alive and I like to remind myself we're given one life, live it to the maximum.
Hi Patti, How nice to hear from you. I'm sure you're right about grief - and maybe anger at how all this evolved - play a role. That is my goal as well, "we're given one life, live it to the maximum." I like your point "determined not to talk about it." It seems as if older people tend to talk about and compare ailments - it's not always helpful.
Hi Janice. I'm slowly coming back from the last year and one month. Had to choose between living and existing. Coming back and reading Substack favorites (you are definitely in my top 5) helps. For the longest I just couldn't read much of anything, things are better now in this arena. So will not actively participate again... happy you're writing and inspiring us. Carry on... smartly, as they say in the military!
I have been on your same path since 1998. Our experiences are parallel. Except I have been diagnosed with early macular degeneration in my supposedly good eye.
A year ago I woke up at 4 AM and couldn’t see anything but a small triangle out of my right eye. I thought I had a stroke. Because I was a retired CV nurse I checked my neuro status in the bathroom and all else was ok. I went to the ER to be evaluated and she diagnosed me with a torn retina and sent me home to see a specialist in two days a Monday. I’m 80 years old, no tests were done, no labs , CT nothing. Monday came and my vision had not changed, the specialist told me no tear but I had an eye stroke RCAO right ocular artery occlusion and sent me back to the ER FOR a full stroke work up which I did . Them multiple test overnight stay etc. I was angry and very disappointed with the event..am left with balance issues, stairs are scary, grateful that my vision has gotten a little better but never will be normal. No one wants something to be bad but I regret not advocating for myself thinking she’s the doctor, she should know . Never be afraid to question anyone about your health. I am a very positive person and have moved on but continue to harbor some anger. I filed a lawsuit so it would bring attention to what happened and the would address this situation.
Hi Susan, I thought about filing a lawsuit, but decided not to because I really hadn't advocated for myself at the time like I could/should have. Today, it would be a different story.
Thank you for sharing your personal story and how people may react psychologically. The list sounds like a blueprint for life not just medical issues.
What do you say instead of “eye problem?” “Challenge?” I try to come up with more positive labels but it’s tough. I usually make a joke. “I have a tremor in my hand. I should have been a doctor.” (No one would read my prescriptions.)
Hi CK, Maybe just referring to my eye and not labeling it as a problem or challenge. Like "I've had surgery for a detached retina, so I'm more cautious when crossing the street." Making a joke is a wonderful way to respond, I'd love to be better at it.
Hi Janice ~ I had a heart cath earlier this summer. Too soon for a stent so they gave me meds, but when I went back for my checkup I told the doctor I was having side effects from the meds because I seemed to be having new symptoms. Very graciously, she said, "You're showing signs of anxiety. You're thinking about this too much." Almost immediately my "new" symptoms disappeared. I was amazed. I'm wondering if that was true? Again, please keep writing; your articles always help me. Thanks, J.
Hi Jan, It could be. I'm not a physician, but I do know that anxiety can cause physical symptoms and at the same time meds can cause reactions especially if a person takes several different ones or until their system gets used to it. If it were me I'd document how I felt after taking the meds and the times I felt anxious. See if there are any correlations. That way I'd have concrete evidence to ease my concern or data that supports it and my doctor would want to know.
What medical issues are part of your life and how are you managing them?
I think you are remarkable and I appreciate your sharing your physical limitations. Also to be aware of changes in our health. I have Dry Macular Degeneration and am more aware of changes in my eye health. It would mean a lifestyle change to become unable to drive. Pride as well as being a burden to loved ones. I am blessed to be in a community that will drive others to appointments. Thank you for your newsletter. I share it.
Your experience of loss is relatable. I hope to keep my hopes high because it is very scary to be on the other side of it.
May we continue to be kind to ourselves and others. Let this be our legacy.
As someone who works in health care I see so many different ways of relating to medical issues (although the ones I work with are not as serious as retinal detachment). The folks who fully lock in and stay that way are in for a very long ride on an already arduous journey. It's great you outline the steps Janice, it may help some folks to be able to soften in to what is happening.
Insightful, as always. I am glad to realize I have achieved three steps!
Hi Janice. You are a brave soul. I've had all sorts of maladies cropping up in the past six years. But the last year has been challenging. I suspect grief is playing a role. For now, I like to say I put the fires out - whatever issue surfaces I address it. I'm still battling finding a primary care doctor. I finally found one who will take me, but not for another month. So I suffer, well, let's say I'm not at my best.
I dread the day that ears, eyes, mobility, and teeth are challenged... well for that matter any body part that goes south. But I'm determined not to talk about it. Discuss it. Make it part of my story. Just keep moving and hope I dodge "it" and live to see another day (no pun intended, I promise.
I'm getting ready to finally close on the condo, a very long and sad year, but the end of this era is near, so looking forward to brighter days ahead, of course they will never be the same without Carl... but I'm still alive and I like to remind myself we're given one life, live it to the maximum.
Sending much love and good thoughts your way.
Hi Patti, How nice to hear from you. I'm sure you're right about grief - and maybe anger at how all this evolved - play a role. That is my goal as well, "we're given one life, live it to the maximum." I like your point "determined not to talk about it." It seems as if older people tend to talk about and compare ailments - it's not always helpful.
Hi Janice. I'm slowly coming back from the last year and one month. Had to choose between living and existing. Coming back and reading Substack favorites (you are definitely in my top 5) helps. For the longest I just couldn't read much of anything, things are better now in this arena. So will not actively participate again... happy you're writing and inspiring us. Carry on... smartly, as they say in the military!
I have been on your same path since 1998. Our experiences are parallel. Except I have been diagnosed with early macular degeneration in my supposedly good eye.
Hi Yvonne, That's not good. Can anything be done to slow the process down?
A year ago I woke up at 4 AM and couldn’t see anything but a small triangle out of my right eye. I thought I had a stroke. Because I was a retired CV nurse I checked my neuro status in the bathroom and all else was ok. I went to the ER to be evaluated and she diagnosed me with a torn retina and sent me home to see a specialist in two days a Monday. I’m 80 years old, no tests were done, no labs , CT nothing. Monday came and my vision had not changed, the specialist told me no tear but I had an eye stroke RCAO right ocular artery occlusion and sent me back to the ER FOR a full stroke work up which I did . Them multiple test overnight stay etc. I was angry and very disappointed with the event..am left with balance issues, stairs are scary, grateful that my vision has gotten a little better but never will be normal. No one wants something to be bad but I regret not advocating for myself thinking she’s the doctor, she should know . Never be afraid to question anyone about your health. I am a very positive person and have moved on but continue to harbor some anger. I filed a lawsuit so it would bring attention to what happened and the would address this situation.
Hi Susan, I thought about filing a lawsuit, but decided not to because I really hadn't advocated for myself at the time like I could/should have. Today, it would be a different story.
Sorry you have to deal with these eye issues. I appreciate your sound advice about how to live with medical conditions.
Thank you, Gail.
Thank you for sharing your personal story and how people may react psychologically. The list sounds like a blueprint for life not just medical issues.
What do you say instead of “eye problem?” “Challenge?” I try to come up with more positive labels but it’s tough. I usually make a joke. “I have a tremor in my hand. I should have been a doctor.” (No one would read my prescriptions.)
Hi CK, Maybe just referring to my eye and not labeling it as a problem or challenge. Like "I've had surgery for a detached retina, so I'm more cautious when crossing the street." Making a joke is a wonderful way to respond, I'd love to be better at it.
Hi Janice ~ I had a heart cath earlier this summer. Too soon for a stent so they gave me meds, but when I went back for my checkup I told the doctor I was having side effects from the meds because I seemed to be having new symptoms. Very graciously, she said, "You're showing signs of anxiety. You're thinking about this too much." Almost immediately my "new" symptoms disappeared. I was amazed. I'm wondering if that was true? Again, please keep writing; your articles always help me. Thanks, J.
Hi Jan, It could be. I'm not a physician, but I do know that anxiety can cause physical symptoms and at the same time meds can cause reactions especially if a person takes several different ones or until their system gets used to it. If it were me I'd document how I felt after taking the meds and the times I felt anxious. See if there are any correlations. That way I'd have concrete evidence to ease my concern or data that supports it and my doctor would want to know.