Disclaimer: This group is not part of the regular Treeleaf forum. To take part, you must have registered on the original thread (https://www.treeleaf.org/forums/show...ase-Read-Agree) and agreed to the group rules.
__________________________________________________
Hello everyone! Very sorry about my delayed posting -- having some issues this week. Grateful for your patience with me on all levels.
In the Appendix, from pages 193-196, Toni tackles the following topics:
- Feeling ignored by family or friends
- Suffering due to uncertainty about the future
- Coping with the disappointment of failed treatments
This post is a challenge for me, because all three of these sections hit me up close and personal. So I will do my best to be as objective about this as possible, although it may run very long.
On “feeling ignored by family or friends” – I am definitely guilty of this. In the best of times, I can get wrapped up in my own narratives, and/or be so absorbed in the daily changes I experience, that I tend to forget that my extended family and friends have their own lives also. Even worse, sometimes I compound my worry by contacting them a few times, to apologize for contacting them (or worse, asking them why they haven’t answered me).
Conversely, my husband will poke me when I am “too quiet” and ask me what’s up. It’s the kind of thing that most think nothing of, but with me sometimes it’s when I’ve fallen in a dark hole and go mute. So I end up going for periods of time out of contact with people, but for other reasons.
I like to research trauma-psychology, trauma-informed self-care, etc., and I work on ways to improve my communication skills as an autistic and as someone coming from an abusive family background. I found Toni’s suggestions on page 193 to be helpful in calming my worries and taming my habits of overstepping boundaries when friends are quiet.
Her suggestions on page 194 are more difficult for me. I have lost several “perhaps friends” over the last few years since I became more ill, but I had a different way of handling it. I think I am probably losing a couple more longtime friends now because I just cannot maintain communication, and they don't seem to understand my situation. This was upsetting to me, but I've had to make peace with it. I've also realized that my community is mostly at Treeleaf, and I am fine with that -- this is where I am somewhat visible and active. I’ve also been able to work on my own version of the gratitude practice, and stating what I am doing “right now.” – I find them helpful. I see gratitude as looking at what I have learned from a situation or experience – especially if it was painful. I try to find the positive, and for me that has become choosing to find positive lessons even in difficult or painful experiences.
The section about suffering due to uncertainty about the future – this is hard to write about. I apologize for getting personal about this, but as much as I’ve been thinking about it, I don’t see a way around it. I don’t think Toni addressed this specifically, but I have to, because the nature of my illness is that complications from the disease can be deadly and unexpected. This isn’t a theory, or a possibility – it often happens. I see reports of this weekly in the lupus support groups that I am in (when members pass on, or check in from hospital). Also, as I write this week, I’m treating another complication of lupus, and have been making changes to my environment and technology to adapt.
Lupus disables or kills women younger than me (even teens and twenties), and my age and older. Often it may start as something benign that is of little concern, and it can quickly develop into vital organ failure, or a superbug that the immune system cannot fight. Lupus specializes in “sneak attacks” and is a master of disguises. We are at higher risk of heart disease, stroke, kidney nephritis/failure, blindness, and a few other issues. Research is working on the life expectancy to five years post-diagnosis, then to ten years post-diagnosis.
My phone call this morning to the nurse case manager was about my eyes (it’s been creeping – this morning forced a phone call). After reviewing my condition, she gave me marching orders for my vision and two vital organ systems and insisted that I use my cane regularly. She understood the family situation we are in as a caregivers and the isolation, but reminded me also that self-care is essential and not selfish. To be honest, I don’t know what to do about this as we literally have our hands full – that’s the best way I can put it. What I can do at this time, is to set some boundaries quietly (mostly by not saying), and just take care of some things. Access is another issue.
So, to bring this section home – two practices I found helpful are “Don’t know” and “Weather”. My illness reminded me again this morning that I don’t know! However, I can’t live in its shadow. It is unpredictable – I went to bed last night and my eyes were okay but I was feeling unwell. I woke up this morning and, well – my vision had changed and I was a mess.
The disappointment of failed treatments ….. I’ve been on several of them, and others, I don’t qualify for, because my immune system and biochemistry are hypersensitive. The treatments for lupus arthritis, rheumatoid arthritis, and similar DMARDs (disease-modifying anti-rheumatic drugs) I have not had much success with, and they are highly toxic with long-term side effects. One or two I had limited success with (reduced joint pain and swelling), but the side effects were so problematic that we stopped the treatment. Another one may have worked better, but my doctor was reluctant to increase the dosage because it was a low-profile chemotherapy drug and she was concerned about the impact it would have on me. Thus, the treatments that most lupus patients take to manage their flares and symptoms, I can’t take. I am also questioning the main lupus drug I take that is supposed to be a “life-raft” (protectant) for my vital organs – hydroxychloroquine – as it can cause eye damage and permanent blindness, and I’m not so sure that my vital organs are okay. The nurse case manager isn’t sure either.
I guess the most helpful exercise from the section that I have found is “Don’t know.” There is a lot that I do know, as I know my illness very well, and I have to do a lot of work because there is so little that works on me or is safe for me to take. I also stay informed on the science of my illness so I can understand what is happening to me. But it is impossible for me to know what direction it will take. And, I don’t believe in “cures” anymore – not for my illness. It doesn’t work that way. I believe that is a marketing gimmick to raise money for research.
This informs my role as a caregiver for my aunt also, because she is scared to take risks, try new doctors or consider new options. She’s from a different generation, and while it’s normal for me to forge a new path when something isn’t working, it’s normal for her to stick to tradition and not rock the boat. So I try to remember that when a different course of action seems obvious to me, but she is balking at the idea, that her perspective is very different – and that doesn’t mean it’s wrong, and I need to respect her views (unless she’s in serious danger or going against doctor’s orders) and she is free to decide her own healthcare. The difficulty is when she wants me to make medical decisions for her, but then she gets angry and becomes argumentative. We have very different ways of managing our healthcare, and making decisions, but “Don’t Know” and “Weather” I find helpful for both.
I apologize for writing so much this time but, as I said, these sections were so personal for me, and I could not find a way to approach it more objectively.
Questions –
1 – What, if anything, in these sections resonated for you? Did the sections resonate for you, but not for the reasons or examples stated? Do the practices Toni suggested help? Are there other practices that help you more in handling the challenges of living with chronic illness?
2 – Staying in contact with friends and family – do you experience difficulties with this? Do you ever experience anxiety if you don’t hear back from someone fast enough? How do you handle this? Conversely, do your family or friends get anxious if they don’t hear from you after a while? Are there times when you are silent for a while? (Or do you experience challenges with adult selective mutism?) Do you find Toni’s suggestions helpful, or are there other ways that have been more beneficial to you and your loved ones in maintaining communication?
3 – Dealing with the unknown, and failed treatments – how has this impacted your life with illness, and what (if anything) have you found helpful in dealing with uncertainty in the future, and in treatments that have not worked as you had hoped (if that happened)? Have you found practices that are helpful to you? Are there any that made things worse for you?
4 – Is there anything additional that you would like to share, from your own experiences or even unrelated, that has not been addressed in these sections, but perhaps a reflection, a koan, or a poem related to the theme of this book? Please feel free and do share.
Sorry to run very long.
Gassho, meian st lh
__________________________________________________
Hello everyone! Very sorry about my delayed posting -- having some issues this week. Grateful for your patience with me on all levels.
In the Appendix, from pages 193-196, Toni tackles the following topics:
- Feeling ignored by family or friends
- Suffering due to uncertainty about the future
- Coping with the disappointment of failed treatments
This post is a challenge for me, because all three of these sections hit me up close and personal. So I will do my best to be as objective about this as possible, although it may run very long.
On “feeling ignored by family or friends” – I am definitely guilty of this. In the best of times, I can get wrapped up in my own narratives, and/or be so absorbed in the daily changes I experience, that I tend to forget that my extended family and friends have their own lives also. Even worse, sometimes I compound my worry by contacting them a few times, to apologize for contacting them (or worse, asking them why they haven’t answered me).
Conversely, my husband will poke me when I am “too quiet” and ask me what’s up. It’s the kind of thing that most think nothing of, but with me sometimes it’s when I’ve fallen in a dark hole and go mute. So I end up going for periods of time out of contact with people, but for other reasons.
I like to research trauma-psychology, trauma-informed self-care, etc., and I work on ways to improve my communication skills as an autistic and as someone coming from an abusive family background. I found Toni’s suggestions on page 193 to be helpful in calming my worries and taming my habits of overstepping boundaries when friends are quiet.
Her suggestions on page 194 are more difficult for me. I have lost several “perhaps friends” over the last few years since I became more ill, but I had a different way of handling it. I think I am probably losing a couple more longtime friends now because I just cannot maintain communication, and they don't seem to understand my situation. This was upsetting to me, but I've had to make peace with it. I've also realized that my community is mostly at Treeleaf, and I am fine with that -- this is where I am somewhat visible and active. I’ve also been able to work on my own version of the gratitude practice, and stating what I am doing “right now.” – I find them helpful. I see gratitude as looking at what I have learned from a situation or experience – especially if it was painful. I try to find the positive, and for me that has become choosing to find positive lessons even in difficult or painful experiences.
The section about suffering due to uncertainty about the future – this is hard to write about. I apologize for getting personal about this, but as much as I’ve been thinking about it, I don’t see a way around it. I don’t think Toni addressed this specifically, but I have to, because the nature of my illness is that complications from the disease can be deadly and unexpected. This isn’t a theory, or a possibility – it often happens. I see reports of this weekly in the lupus support groups that I am in (when members pass on, or check in from hospital). Also, as I write this week, I’m treating another complication of lupus, and have been making changes to my environment and technology to adapt.
Lupus disables or kills women younger than me (even teens and twenties), and my age and older. Often it may start as something benign that is of little concern, and it can quickly develop into vital organ failure, or a superbug that the immune system cannot fight. Lupus specializes in “sneak attacks” and is a master of disguises. We are at higher risk of heart disease, stroke, kidney nephritis/failure, blindness, and a few other issues. Research is working on the life expectancy to five years post-diagnosis, then to ten years post-diagnosis.
My phone call this morning to the nurse case manager was about my eyes (it’s been creeping – this morning forced a phone call). After reviewing my condition, she gave me marching orders for my vision and two vital organ systems and insisted that I use my cane regularly. She understood the family situation we are in as a caregivers and the isolation, but reminded me also that self-care is essential and not selfish. To be honest, I don’t know what to do about this as we literally have our hands full – that’s the best way I can put it. What I can do at this time, is to set some boundaries quietly (mostly by not saying), and just take care of some things. Access is another issue.
So, to bring this section home – two practices I found helpful are “Don’t know” and “Weather”. My illness reminded me again this morning that I don’t know! However, I can’t live in its shadow. It is unpredictable – I went to bed last night and my eyes were okay but I was feeling unwell. I woke up this morning and, well – my vision had changed and I was a mess.
The disappointment of failed treatments ….. I’ve been on several of them, and others, I don’t qualify for, because my immune system and biochemistry are hypersensitive. The treatments for lupus arthritis, rheumatoid arthritis, and similar DMARDs (disease-modifying anti-rheumatic drugs) I have not had much success with, and they are highly toxic with long-term side effects. One or two I had limited success with (reduced joint pain and swelling), but the side effects were so problematic that we stopped the treatment. Another one may have worked better, but my doctor was reluctant to increase the dosage because it was a low-profile chemotherapy drug and she was concerned about the impact it would have on me. Thus, the treatments that most lupus patients take to manage their flares and symptoms, I can’t take. I am also questioning the main lupus drug I take that is supposed to be a “life-raft” (protectant) for my vital organs – hydroxychloroquine – as it can cause eye damage and permanent blindness, and I’m not so sure that my vital organs are okay. The nurse case manager isn’t sure either.
I guess the most helpful exercise from the section that I have found is “Don’t know.” There is a lot that I do know, as I know my illness very well, and I have to do a lot of work because there is so little that works on me or is safe for me to take. I also stay informed on the science of my illness so I can understand what is happening to me. But it is impossible for me to know what direction it will take. And, I don’t believe in “cures” anymore – not for my illness. It doesn’t work that way. I believe that is a marketing gimmick to raise money for research.
This informs my role as a caregiver for my aunt also, because she is scared to take risks, try new doctors or consider new options. She’s from a different generation, and while it’s normal for me to forge a new path when something isn’t working, it’s normal for her to stick to tradition and not rock the boat. So I try to remember that when a different course of action seems obvious to me, but she is balking at the idea, that her perspective is very different – and that doesn’t mean it’s wrong, and I need to respect her views (unless she’s in serious danger or going against doctor’s orders) and she is free to decide her own healthcare. The difficulty is when she wants me to make medical decisions for her, but then she gets angry and becomes argumentative. We have very different ways of managing our healthcare, and making decisions, but “Don’t Know” and “Weather” I find helpful for both.
I apologize for writing so much this time but, as I said, these sections were so personal for me, and I could not find a way to approach it more objectively.
Questions –
1 – What, if anything, in these sections resonated for you? Did the sections resonate for you, but not for the reasons or examples stated? Do the practices Toni suggested help? Are there other practices that help you more in handling the challenges of living with chronic illness?
2 – Staying in contact with friends and family – do you experience difficulties with this? Do you ever experience anxiety if you don’t hear back from someone fast enough? How do you handle this? Conversely, do your family or friends get anxious if they don’t hear from you after a while? Are there times when you are silent for a while? (Or do you experience challenges with adult selective mutism?) Do you find Toni’s suggestions helpful, or are there other ways that have been more beneficial to you and your loved ones in maintaining communication?
3 – Dealing with the unknown, and failed treatments – how has this impacted your life with illness, and what (if anything) have you found helpful in dealing with uncertainty in the future, and in treatments that have not worked as you had hoped (if that happened)? Have you found practices that are helpful to you? Are there any that made things worse for you?
4 – Is there anything additional that you would like to share, from your own experiences or even unrelated, that has not been addressed in these sections, but perhaps a reflection, a koan, or a poem related to the theme of this book? Please feel free and do share.
Sorry to run very long.
Gassho, meian st lh
Comment