Since being diagnosed with a lung disease that carries an average life expectancy of 50, birthdays have started to feel less like milestones and more like countdowns.
While I’m completely ignorant to what you’ve gone through with/since your diagnosis, I offer a well-intended, possibly naive but urgent suggestion: Please research and/or reach out to the Cleveland Clinic in Cleveland, Ohio. From my understanding, they are leading in innovative research and treatment. Much love. Stay rad… and healthy!
Happy Birthday Carré I am glad you survived all of that and we are so lucky that you are still here. 🎈❤️🎈
Some people said to me that the controlfreak in me (I even gave him a name many years ago some old friends of mine still use) is because of being a virgo. I realise you are also a virgo but until now I don't know much about astrology I have to admit and never really believed in it but I know quite some people who do. I often answered that it's nice to know that being born during a certain time of the year makes me a controlfreak but that does not cure the problems that come with it haha.
That was once again an extremely interesting and moving piece of writing. Thank you for sharing that with us!
All your posts are just really speaking to my heart. Not because I have lived the exact same life but because you can write about really hard topics so well and it's never preachy or something like that. It is such a great mix of emotion and rationality, facts and feelings, humor and darkness. It's so well written, you are so very talented and at the same time you are such an inspiring personality.
I really hope you can have time, of course many of us hope that since we all never know when we have to die, but knowing there is a disease like CF in your body is a different story. The son of an old friend of mine was born with CF. I remember some details about it because it was understandably dominating everything in her life at the time. Like you, he also had an atypical version of it and when he was around 10 years old they told her if he takes his medication and always uses his inhalers he might make it to 70 because they were very optimistic. Also optimistic because they seemed to do a lot of research on the topic and were thinking that the treatment would be better throughout his lifetime (He was born 2009). Nevertheless I realised how hard it must be to not know if you can at least HOPE for the lifespan of 70-80 that is "normal" in western countries. He grows up with that knowledge but being hit by it suddenly like it happened to you does not give you the opportunity to slowly process that. I have such massive respect for how you pulled yourself up again after all of that.
I agree on everything you said about death. I feel the same about how it's treated in our culture. I recently talked with a friend about it when I realised that most people my age I know have never seen a dead body. I saw the first dead body when I was 12 when my grandpa suddenly died and I watched my grandma dying at home when I was 15 so for me it came quite early that I had to think about it but I imagine that in other cultures or some 100 years into the past it was just normal that kids saw people die and it was just happening a lot more at home.
They both lived with us and helped raising us. It changed me forever and that is not even meant to be a dramatic expression it is the simple truth in that case. I was not the same anymore afterwards. When my grandpa died it was all very sudden, he had a happy death, whenever I saw how they celebrate death in Mexico I had to think about him. He would have loved that and it would have fitted for his goodbye so well. But my grandmother had a long, slow and painful death. She wanted it that way for reasons only she knows and since she was blessed (or cursed?) with a clear mind till her last days she decided what she wanted. I am german so when it comes to that generation it is maybe not an exaggeration to say many of them wrestled a lot of demons.
But what I learned at that time was that life ends. That you go, everything you were, everything you owned nobody can use, goes with you. I was absolutely mindblown and shocked and sad in a way I had never been sad before. I felt all of it aged me a lot. If I ever was careless, that was over. Death is massive. I wonder how we as a society are even able to put something so extreme and elemental into a corner. It's mad. No wonder we cannot handle it anymore. I remember the doctor of my grandma, he said "How many days do you want to keep her?" And my mother quickly decided we will all say goodbye to her and send prayers and stay in the room for a while but that we do not keep her for more days. Simply because she had small children (I am the oldest) and she had no idea what would happen. Since her father and my great grandpa died suddenly they were taken immediately because of autopsy. But for my grandma if was 100% sure it was a natural death. So we could keep her and her doctor who was an older guy just assumed it was normal, but it is far from normal in our generation and culture these days. People think it's creepy.
It did not feel creepy to me by the way. Just absolutely shocking that they were gone and would not come back and I could not see them ever again. It just hit me seeing her dead body lying there. And nobody wanted to talk about it. My mum probably would have, but she lost everyone that was close to her within only a few years so she had no capacity I think, she was just so sad and felt very alone since she had no elders anymore and was only 40. But that for me was one of the hardest parts, what you said in your text too, that it is perceived as impolite to talk about death and I was desperate to talk about everything that was in my head. Since that did not happen I think I developed a massive fear of loss. Because at the time I was never really able to find a good way to handle what happend so my teenage mind was scared that everyone can die anytime and it did not really get better with more people dying around me, younger people, suicide...all of that. It made me feel that nothing is in control (which is mostly true) and the worst can happen anytime (also mostly true I guess). It was hard to accept that without losing my mind and push back into my mind that on the other hand the best can happen too anytime and that things can be in control sometimes.
Also while I write this I wonder if I should delete it again because I already feel it maybe is too much "death talk" and I do not want to make people feel uncomfortable. Fits with the topic.
Aaaanyway...
Cheers to surviving and to many more years to come hopefully and it's wonderful that you had a lovely day and your loved ones showed you the love you deserve 😻
Thanks for sharing this. The outlook for CF patients improves by the day, so that's reassuring. I just have anxiety about drowning in my own blood if I'm on a long flight and my lungs start to bleed. Stuff like that. Also, I get pneumonia at least once a year and I've had some close calls with that. But, as you said, none of us know exactly when our time is going to run out. Anyway, you know where to find me if you ever wanna partake in more "death talk" ;)
Glad you are still alive. I am so sorry you have to carry all of this. It’s profoundly unfair. The death anxiety is REAL. I truly think it’s not only connected with health issues but also with childhood trauma as well. A primal lack of safety. You’ve experienced levels of instability and danger from CF, from childhood, and then adulthood, that intensely color the knowledge that for most people is very abstract.
In my most vivid moments the terror is imagining myself alone forever. This feels like it comes from my childhood trauma. What my body is truly afraid of isn’t the fading onset of sleep, it’s the intense pain of being alone.
I have had years of therapy and some mindfulness and grounding practice. Not any new age stuff, but more science-based practices. Being in the right now, grounding my mind and body in the sensory experience of the present, has been very stabilizing. I am still afraid, but when I feel that fear in my body I am able to notice it with more detachment and not be as fused with those thoughts. I can return to the present and be here again. Not resisting or avoiding the thoughts and feelings, but learning to tolerate them. This is what has helped me, though very much on a journey.
I hope that for each of us when our time comes, hopefully a very long time from now, that someone is there to hold our hands and help us feel connected. And may you be surrounded as many comforting cats as your heart desires.
Being present makes a big difference in body and mind. I struggle with it but I do this 5, 4, 3, 2, 1 exercise that helps. Have you heard of it? Good on you for being proactive and learning how to self-stabilize.
Yes! OMG. That’s awesome. It’s literally what my therapist taught me to do. 5 things I see, four I hear, etc. I ALWAYS feel like it is a terrible and stupid exercise to do in the face of total annihilation (“I feel like I am about to die, but oh look #4 is that old man walking across the street, #5 is a bird that just flew by… I’m going to die… #1 thing I hear is the sound of a leaf blower. I hate those things. #2 is the sound of that car that just drove by…”) eventually it works and I feel calmer and more capable of dealing with what’s going on. I hate it but it works. Our amygdalas were cranked to a ten as kids so they require extra care to stop blaring the alarms all the time. Stupid trauma.
Very happy belated birthday, Carré. As an August "baby" myself...the 14th...lately have been viewings birthdays as just another day added to the countdown as you mention. Even before the pandemic hit us, a few anxieties involving life & death have burst forth in life. And since last year after my father's passing, the death anxiety has become more real and exasperated. Thank you for sharing your journey so far with all of us and it's truly & immensely appreciated always.
Much, much, much love to you and POSI vibes not just on your birthday but always!!!
Happy belated birthday to you!! Nice to hear from you again. Sorry to hear about your dad’s passing. I thought dealing with a lot of death up close would make me less afraid of it. But, it’s hard the opposite effect on me, tbh. 🤷🏻♀️
Richard here . You gotta write that fucking book girl. Yeah the taboo death thing in the west is shit. Ever listened to Alan Watts? You tube him. And his lecture on death it's profound and I'm sure you will take something from it. And the crystal thing. As a recovering Alcoholic. Whatever it takes. I use them all the time . When we spoke last Friday at your gig. Try Al anon. You got fuck all to lose. I'm sure it will help with the control thing.
Keep writing girl. See you in the circuit next time.
Happy happy birthday! Here’s hoping the coming year is a great one. I’m always relieved if the coming year is marginally better than the last :/
Thank you for sharing your CF journey. I can’t imagine the mental, emotional, physical toll that must take. Your talk of gems unlocked a memory for me - I had a health scare a few years ago (definitely not the same as CF!) and I coped by going out and buying every stone, every Buddha statue, and every book purporting to give wisdom and insight on life and death. In the end, the health issues ended up being sort of life altering - with my body making decisions for me before my mind was ready - but yeah, now I have a house full of quartz, books, and Buddhas.
I can’t imagine dealing with marriage and other real life issues while trying to maintain my own health. On the marriage front - is there anything worse than a partner that can’t seem to be supportive (and faithful) when you’re in the midst of a health crisis? Ffs. Wtf. And many, many other expletives.
yes, there is something worse: a partner who can't be supportive or faithful when you're in the midst of a health crisis AND is in limp bizkit.
I cut my hand on the quartz from rubbing it too hard. I think I tried to put it on offerup for $5. I should've left the blood on there and sold it on Ebay...
Thank you for the well wishes! Glad you're alive! XX
Happy Birthday 🎂 I'm so glad that you're with us. It's my birthday soon and I always think about death too around the time of year. Must be in the air. No pun /shade intended. I'm so happy to have you around 💓 💗
Death is a weird companion. When you know he/she ( shall we just call it “it”?) is walking beside you, maybe taunting, maybe whistling quietly letting you know it’s not that far away, my brush with him was after my first heart attack when I died for 30 seconds, the doctor, when he told me, seemed proud of it which really annoyed me at the time. Finally, my misspent youth of smoking, alcohol, drugs and just general all around fuckery ( I had the pleasure of having my late teens and 20’s at the end of the 70’s and through the 80’s in London) but it was also partly genetic, born in Scotland, ore specifically Glasgow, the heart attack capital of the world. So, anyway there’s me and death now close friends and I don’t think I’ll ever get used to it no matter what others say, I quickly realised that if you hadn’t been through it, if you hadn’t had your brush with it you didn’t have a fucking clue and you shouldn’t be giving out platitudes, especially if they weren’t sincere. Silence is golden when it comes to that.
I’m more relaxed now, I enjoy where I am and how I live, I still smoke, it helps. I still drink, it helps. But all in moderation.
I’ve no magic message, no wee slogan or pithy reference or quote that will help, just be you, do you. Be happy or rant like nobody is listening. And if you need an ear I can listen, no guarantee I can help but I don’t judge, don’t preach and don’t do meaningless sympathy.
I've been following you for a long time and I knew about your CF diagnosis. The way you handle it is so brave (it does take a lot of anxiety I'm sure), still creating music and still living your life. As you said we are all going to die, but the acute awareness of it is a different ball game, I know. As a cancer survivor (I hate this term), I felt everything you said in your post so eloquently put. I'be always been very afraid of death and I put my hypocondria (way before my own diagnosis) to this. Spent my early years worried I would get the big C, so when I got diagnosed I almost found the irony hilarious. Not sure if you did too, but I very quickly started to grieve my life pre cancer. Looking at old pictures and felt sad and envious of the blissful ignorance of my illness. You had an added blow when Mr Bizkit couldn't take it and my "theory" is that when you have been dealt a shit stick, you'll get another one. I've had it, a lot of people around me too, it's almost a rule. Just like you I do the 5,4,3,2,1 when my head is going to dark places and it does help, as mindfulness and reading about Stoicism (if you can be bothered). Although it never helps when it gets to my yearly check-up. It's like a game, every year I'm disease free, feels like I get to the next level until one day it might be game over, what a blast!!!
One thing we can both focus on to help us (and anyone else here dealing with illness) is that science and medical innovation, each year, bring beautiful hope that might prolonged our lives.
While I’m completely ignorant to what you’ve gone through with/since your diagnosis, I offer a well-intended, possibly naive but urgent suggestion: Please research and/or reach out to the Cleveland Clinic in Cleveland, Ohio. From my understanding, they are leading in innovative research and treatment. Much love. Stay rad… and healthy!
https://my.clevelandclinic.org/departments/respiratory/depts/adult-cystic-fibrosis
Happy Birthday Carré I am glad you survived all of that and we are so lucky that you are still here. 🎈❤️🎈
Some people said to me that the controlfreak in me (I even gave him a name many years ago some old friends of mine still use) is because of being a virgo. I realise you are also a virgo but until now I don't know much about astrology I have to admit and never really believed in it but I know quite some people who do. I often answered that it's nice to know that being born during a certain time of the year makes me a controlfreak but that does not cure the problems that come with it haha.
That was once again an extremely interesting and moving piece of writing. Thank you for sharing that with us!
All your posts are just really speaking to my heart. Not because I have lived the exact same life but because you can write about really hard topics so well and it's never preachy or something like that. It is such a great mix of emotion and rationality, facts and feelings, humor and darkness. It's so well written, you are so very talented and at the same time you are such an inspiring personality.
I really hope you can have time, of course many of us hope that since we all never know when we have to die, but knowing there is a disease like CF in your body is a different story. The son of an old friend of mine was born with CF. I remember some details about it because it was understandably dominating everything in her life at the time. Like you, he also had an atypical version of it and when he was around 10 years old they told her if he takes his medication and always uses his inhalers he might make it to 70 because they were very optimistic. Also optimistic because they seemed to do a lot of research on the topic and were thinking that the treatment would be better throughout his lifetime (He was born 2009). Nevertheless I realised how hard it must be to not know if you can at least HOPE for the lifespan of 70-80 that is "normal" in western countries. He grows up with that knowledge but being hit by it suddenly like it happened to you does not give you the opportunity to slowly process that. I have such massive respect for how you pulled yourself up again after all of that.
I agree on everything you said about death. I feel the same about how it's treated in our culture. I recently talked with a friend about it when I realised that most people my age I know have never seen a dead body. I saw the first dead body when I was 12 when my grandpa suddenly died and I watched my grandma dying at home when I was 15 so for me it came quite early that I had to think about it but I imagine that in other cultures or some 100 years into the past it was just normal that kids saw people die and it was just happening a lot more at home.
They both lived with us and helped raising us. It changed me forever and that is not even meant to be a dramatic expression it is the simple truth in that case. I was not the same anymore afterwards. When my grandpa died it was all very sudden, he had a happy death, whenever I saw how they celebrate death in Mexico I had to think about him. He would have loved that and it would have fitted for his goodbye so well. But my grandmother had a long, slow and painful death. She wanted it that way for reasons only she knows and since she was blessed (or cursed?) with a clear mind till her last days she decided what she wanted. I am german so when it comes to that generation it is maybe not an exaggeration to say many of them wrestled a lot of demons.
But what I learned at that time was that life ends. That you go, everything you were, everything you owned nobody can use, goes with you. I was absolutely mindblown and shocked and sad in a way I had never been sad before. I felt all of it aged me a lot. If I ever was careless, that was over. Death is massive. I wonder how we as a society are even able to put something so extreme and elemental into a corner. It's mad. No wonder we cannot handle it anymore. I remember the doctor of my grandma, he said "How many days do you want to keep her?" And my mother quickly decided we will all say goodbye to her and send prayers and stay in the room for a while but that we do not keep her for more days. Simply because she had small children (I am the oldest) and she had no idea what would happen. Since her father and my great grandpa died suddenly they were taken immediately because of autopsy. But for my grandma if was 100% sure it was a natural death. So we could keep her and her doctor who was an older guy just assumed it was normal, but it is far from normal in our generation and culture these days. People think it's creepy.
It did not feel creepy to me by the way. Just absolutely shocking that they were gone and would not come back and I could not see them ever again. It just hit me seeing her dead body lying there. And nobody wanted to talk about it. My mum probably would have, but she lost everyone that was close to her within only a few years so she had no capacity I think, she was just so sad and felt very alone since she had no elders anymore and was only 40. But that for me was one of the hardest parts, what you said in your text too, that it is perceived as impolite to talk about death and I was desperate to talk about everything that was in my head. Since that did not happen I think I developed a massive fear of loss. Because at the time I was never really able to find a good way to handle what happend so my teenage mind was scared that everyone can die anytime and it did not really get better with more people dying around me, younger people, suicide...all of that. It made me feel that nothing is in control (which is mostly true) and the worst can happen anytime (also mostly true I guess). It was hard to accept that without losing my mind and push back into my mind that on the other hand the best can happen too anytime and that things can be in control sometimes.
Also while I write this I wonder if I should delete it again because I already feel it maybe is too much "death talk" and I do not want to make people feel uncomfortable. Fits with the topic.
Aaaanyway...
Cheers to surviving and to many more years to come hopefully and it's wonderful that you had a lovely day and your loved ones showed you the love you deserve 😻
Thanks for sharing this. The outlook for CF patients improves by the day, so that's reassuring. I just have anxiety about drowning in my own blood if I'm on a long flight and my lungs start to bleed. Stuff like that. Also, I get pneumonia at least once a year and I've had some close calls with that. But, as you said, none of us know exactly when our time is going to run out. Anyway, you know where to find me if you ever wanna partake in more "death talk" ;)
Happy Being Alive Day!
Glad you are still alive. I am so sorry you have to carry all of this. It’s profoundly unfair. The death anxiety is REAL. I truly think it’s not only connected with health issues but also with childhood trauma as well. A primal lack of safety. You’ve experienced levels of instability and danger from CF, from childhood, and then adulthood, that intensely color the knowledge that for most people is very abstract.
In my most vivid moments the terror is imagining myself alone forever. This feels like it comes from my childhood trauma. What my body is truly afraid of isn’t the fading onset of sleep, it’s the intense pain of being alone.
I have had years of therapy and some mindfulness and grounding practice. Not any new age stuff, but more science-based practices. Being in the right now, grounding my mind and body in the sensory experience of the present, has been very stabilizing. I am still afraid, but when I feel that fear in my body I am able to notice it with more detachment and not be as fused with those thoughts. I can return to the present and be here again. Not resisting or avoiding the thoughts and feelings, but learning to tolerate them. This is what has helped me, though very much on a journey.
I hope that for each of us when our time comes, hopefully a very long time from now, that someone is there to hold our hands and help us feel connected. And may you be surrounded as many comforting cats as your heart desires.
Being present makes a big difference in body and mind. I struggle with it but I do this 5, 4, 3, 2, 1 exercise that helps. Have you heard of it? Good on you for being proactive and learning how to self-stabilize.
Yes! OMG. That’s awesome. It’s literally what my therapist taught me to do. 5 things I see, four I hear, etc. I ALWAYS feel like it is a terrible and stupid exercise to do in the face of total annihilation (“I feel like I am about to die, but oh look #4 is that old man walking across the street, #5 is a bird that just flew by… I’m going to die… #1 thing I hear is the sound of a leaf blower. I hate those things. #2 is the sound of that car that just drove by…”) eventually it works and I feel calmer and more capable of dealing with what’s going on. I hate it but it works. Our amygdalas were cranked to a ten as kids so they require extra care to stop blaring the alarms all the time. Stupid trauma.
Very happy belated birthday, Carré. As an August "baby" myself...the 14th...lately have been viewings birthdays as just another day added to the countdown as you mention. Even before the pandemic hit us, a few anxieties involving life & death have burst forth in life. And since last year after my father's passing, the death anxiety has become more real and exasperated. Thank you for sharing your journey so far with all of us and it's truly & immensely appreciated always.
Much, much, much love to you and POSI vibes not just on your birthday but always!!!
Happy belated birthday to you!! Nice to hear from you again. Sorry to hear about your dad’s passing. I thought dealing with a lot of death up close would make me less afraid of it. But, it’s hard the opposite effect on me, tbh. 🤷🏻♀️
Richard here . You gotta write that fucking book girl. Yeah the taboo death thing in the west is shit. Ever listened to Alan Watts? You tube him. And his lecture on death it's profound and I'm sure you will take something from it. And the crystal thing. As a recovering Alcoholic. Whatever it takes. I use them all the time . When we spoke last Friday at your gig. Try Al anon. You got fuck all to lose. I'm sure it will help with the control thing.
Keep writing girl. See you in the circuit next time.
My jaw dropped a few times reading this, you're a hell of a writer!
Realising your mortality can be frightening, liberating or both.
The world is a much better place for having you in it.
Fingers crossed for medical science, research and the NHS.
If it’s any consolation in 1966 my parents were told Alan wouldn’t live beyond his teens. He’s 58.
Hope you had a wonderful birthday. X
Happy happy birthday! Here’s hoping the coming year is a great one. I’m always relieved if the coming year is marginally better than the last :/
Thank you for sharing your CF journey. I can’t imagine the mental, emotional, physical toll that must take. Your talk of gems unlocked a memory for me - I had a health scare a few years ago (definitely not the same as CF!) and I coped by going out and buying every stone, every Buddha statue, and every book purporting to give wisdom and insight on life and death. In the end, the health issues ended up being sort of life altering - with my body making decisions for me before my mind was ready - but yeah, now I have a house full of quartz, books, and Buddhas.
I can’t imagine dealing with marriage and other real life issues while trying to maintain my own health. On the marriage front - is there anything worse than a partner that can’t seem to be supportive (and faithful) when you’re in the midst of a health crisis? Ffs. Wtf. And many, many other expletives.
I sincerely hope things are more peaceful now.
Enjoy the hell out of your birthday week, girl :)
yes, there is something worse: a partner who can't be supportive or faithful when you're in the midst of a health crisis AND is in limp bizkit.
I cut my hand on the quartz from rubbing it too hard. I think I tried to put it on offerup for $5. I should've left the blood on there and sold it on Ebay...
Thank you for the well wishes! Glad you're alive! XX
(Ok I concede - adding the Limp Bizkit part does make it worse.)
Stay strong! You’ve got music to make and books to write and life to live and a captive audience who honestly can’t wait to hear more from you ♥️
Happy Birthday 🎂 I'm so glad that you're with us. It's my birthday soon and I always think about death too around the time of year. Must be in the air. No pun /shade intended. I'm so happy to have you around 💓 💗
Happy early birthday to you! And, I'm glad you're here too xx
Happiest Birthday! You know what they're worth.
oh my god. happy birthday. I'm so glad I found you. I don't know what else to say.
i.love.this.comment. XX
Keep surviving Girl :)
Death is a weird companion. When you know he/she ( shall we just call it “it”?) is walking beside you, maybe taunting, maybe whistling quietly letting you know it’s not that far away, my brush with him was after my first heart attack when I died for 30 seconds, the doctor, when he told me, seemed proud of it which really annoyed me at the time. Finally, my misspent youth of smoking, alcohol, drugs and just general all around fuckery ( I had the pleasure of having my late teens and 20’s at the end of the 70’s and through the 80’s in London) but it was also partly genetic, born in Scotland, ore specifically Glasgow, the heart attack capital of the world. So, anyway there’s me and death now close friends and I don’t think I’ll ever get used to it no matter what others say, I quickly realised that if you hadn’t been through it, if you hadn’t had your brush with it you didn’t have a fucking clue and you shouldn’t be giving out platitudes, especially if they weren’t sincere. Silence is golden when it comes to that.
I’m more relaxed now, I enjoy where I am and how I live, I still smoke, it helps. I still drink, it helps. But all in moderation.
I’ve no magic message, no wee slogan or pithy reference or quote that will help, just be you, do you. Be happy or rant like nobody is listening. And if you need an ear I can listen, no guarantee I can help but I don’t judge, don’t preach and don’t do meaningless sympathy.
❤️🩹
Great stuff ! Thanks for sharing your story with us :)
Happy birthday Virgo:) Your writing made me gasp, laugh out loud, and cry too. I think you’re very talented—blessings on your health xo
I've been following you for a long time and I knew about your CF diagnosis. The way you handle it is so brave (it does take a lot of anxiety I'm sure), still creating music and still living your life. As you said we are all going to die, but the acute awareness of it is a different ball game, I know. As a cancer survivor (I hate this term), I felt everything you said in your post so eloquently put. I'be always been very afraid of death and I put my hypocondria (way before my own diagnosis) to this. Spent my early years worried I would get the big C, so when I got diagnosed I almost found the irony hilarious. Not sure if you did too, but I very quickly started to grieve my life pre cancer. Looking at old pictures and felt sad and envious of the blissful ignorance of my illness. You had an added blow when Mr Bizkit couldn't take it and my "theory" is that when you have been dealt a shit stick, you'll get another one. I've had it, a lot of people around me too, it's almost a rule. Just like you I do the 5,4,3,2,1 when my head is going to dark places and it does help, as mindfulness and reading about Stoicism (if you can be bothered). Although it never helps when it gets to my yearly check-up. It's like a game, every year I'm disease free, feels like I get to the next level until one day it might be game over, what a blast!!!
One thing we can both focus on to help us (and anyone else here dealing with illness) is that science and medical innovation, each year, bring beautiful hope that might prolonged our lives.