thanks for being there. I hope your daughter’s shingles is better Audrey. apparently it takes ages. Mine was a milder form, had it round my ear.
Today I got back from the clinic after overnight for my ECP treatment, leukapharese. Unfortunately spent the night in one of the rooms I was in for about 9 months whilst acute after the sct. My neighbour was beside herself which was difficult to cope with because she had lost her ability to speak coherently. I do so want to help and there’s such little we can do. I‘ll be ok, time heals.
my cough was thankfully not gvhd and another bit of very good news is my new scleral lenses are in and working which means Im not in acute pain which is absolutely game changing. My feet still make me semi mobile but I’m walking without my granny walker now.
I’ve been really frightened by Dave passing because he had high thrombocyte count and then apparently passed from an embolism, is that right Alison?. None of us can reserve a time slot to pass, so I’ll just keep going.
I plan to carry on checking in now and again. I’m thinking of you, Michelleanne, Audrey and you too Alison. Very proud of you all. We’re heroes!
your news is promising , pleased your cough isn’t gvhd
we can’t help everyone only listen everyone is so different with there recovery , doesn’t mean what Dave went through would happen to you please don’t think like that
The vertigo symptoms sound challenging Michelleanne, … it would be nice to know why.. I hope it’s not too bad and you can cope.
I’m being kind to myself at the moment which seems to help me be strong…
for example , I lay down on the sofa today and didn’t have my inner critic feeling bad about it, even had the telee on, I even dosed off to sleep which is an achievement for me in the daytime.
i don’t no what is causing it , I’ve had my flu& Covid vaccine so now I’ve got cold symptoms
having a day like that does you good , I sometimes have days like that ,just a afternoon with a nice coffee and a biscuit in front of a lovely warm fire
guess it won’t help , but mucosolvan… plenty of it.. and many months and months hoping and lots of drinking water helped my cough in the end… but I think you’ve had yours about a year already Michelleanne. I do hope it goes eventually. Is it productive or dry?
Ive found a good resource from Harvard medical school. I just subscribed free and I get emails with info. It’s not gvhd stuff but I’m trying to change my identity from disabled loser, which is how I feel to, disabled and goer. The lenses have helped, , made a big difference , I can see now , keep my eyes open, and don’t have acute eye pain which was awful and closed me off from the world, socially and physically.
Unfortunately my mobility is not yet recovered. I’m trying hard to walk more.
I‘ll just hit send, sorry to go on… you and Audrey have it harder than me.
sending my love to you both. I hope no news is good news Audrey, I think your gvhd time might be over. I certainly hope so.
i think the change in the weather makes my cough worse , you should never think of yourselves as a disabled loser , we have to learn to be more kind to our selves
we all go through hard times never gets any easier
sorry I haven’t managed to check in for a while but I’ve enjoyed catching up with your chat especially the positive things that you’ve been sharing.
Helen, it must be so wonderful for you to have the lenses and the experience the benefits of vision and no pain . I am so pleased for you and can understand that your emotional state will have got so much better now that you have your new lenses.
Michelle, you don’t have it easy, either and you do remarkably well to take so many medical issues in your stride. I’m glad that the cough isn’t any worse just now and I really hope that the vertigo backs off soon.
Helen, yourself and everyone who has gone through similar experiences to what you have gone through are certainly not disabled losers . As someone who has watched my daughter and her fight for survival, I would call you all superheroes ! You never give up and you are always there to help and support others . You definitely deserve rest and recovery days!
my husband has had major surgery where they removed part of his bowel so this has been / is a worrying time .
The driver of the car, who pled guilty , withdrew this plea at the last minute . It was like a punch in the gut. We now have the prospect of a full blown trial! Consequently my fibro has been flaring and each day is quite a struggle .
so we’re definitely the 3 amigos , putting forward one foot at a time every day.
my daughter is still doing well. The shingles is still there but easing off a bit and the licodaine patches have helped .
Thinking about you both and lovely to keep in touch. Xx❤️
I wrote the message at the bottom ages ago, but forgot to post.
so sorry to hear about hubby Audrey. I hope he’s picking up after the major surgery. It’s our age… we’re really noticing it here too. It feels like we’re getting old in speeded up time lapse.
My eyes are making a difference still, but it is treating the symptoms, the gvhd is still there and limiting me. Painful ankles, eyes aren’t perfect but still brilliant. Generally struggling as usual.
I talk to Dave sometimes, it helps.
I’m very sorry to hear about the driver Audrey. It’s terrible. I can’t imagine what it’s doing to you. Please know you and your family are loved and try to be kind and gentle to yourselves , in the face of endless torment easier said than done.
… heres the old message.
Thank you dear Michelleanne, that warmed my heart.
yes, let’s be kind to ourselves, agreed… promise:)
Comments
It’s already October… wow!
thanks for being there. I hope your daughter’s shingles is better Audrey. apparently it takes ages. Mine was a milder form, had it round my ear.
Today I got back from the clinic after overnight for my ECP treatment, leukapharese. Unfortunately spent the night in one of the rooms I was in for about 9 months whilst acute after the sct. My neighbour was beside herself which was difficult to cope with because she had lost her ability to speak coherently. I do so want to help and there’s such little we can do. I‘ll be ok, time heals.
my cough was thankfully not gvhd and another bit of very good news is my new scleral lenses are in and working which means Im not in acute pain which is absolutely game changing. My feet still make me semi mobile but I’m walking without my granny walker now.
I’ve been really frightened by Dave passing because he had high thrombocyte count and then apparently passed from an embolism, is that right Alison?. None of us can reserve a time slot to pass, so I’ll just keep going.
I plan to carry on checking in now and again. I’m thinking of you, Michelleanne, Audrey and you too Alison. Very proud of you all. We’re heroes!
Thank you 🥰
much love
Helen
Hi helen
your news is promising , pleased your cough isn’t gvhd
we can’t help everyone only listen everyone is so different with there recovery , doesn’t mean what Dave went through would happen to you please don’t think like that
stay strong take each day one at a time ❤️
Thank you Michelleanne, it counts hearing it from you because you know what you’re talking about. And how it is to be frightened.
but I will ask them if it’s a risk and if there’s any treatment of any kind. In the past they’ve just said no.
love and thank you for being there. Even if we don’t check in so often.
how are you?
Helen
Hi helen
lovely to hear from you
I would it might ease your mind a little , as long as you can cope with the answer if it’s no
I’m not to bad at the minute , having trouble with symptoms like vertigo don’t no where it has come from oh r it’s the cold weather
always here whenever you want to chat
stay strong and take care ❤️
Hello,
The vertigo symptoms sound challenging Michelleanne, … it would be nice to know why.. I hope it’s not too bad and you can cope.
I’m being kind to myself at the moment which seems to help me be strong…
for example , I lay down on the sofa today and didn’t have my inner critic feeling bad about it, even had the telee on, I even dosed off to sleep which is an achievement for me in the daytime.
H x x x
be kind to yourselves ❤️
Hi helen
i don’t no what is causing it , I’ve had my flu& Covid vaccine so now I’ve got cold symptoms
having a day like that does you good , I sometimes have days like that ,just a afternoon with a nice coffee and a biscuit in front of a lovely warm fire
the simple things give you the most pleasure 😂
enjoy your cosy days ****
guess it won’t help , but mucosolvan… plenty of it.. and many months and months hoping and lots of drinking water helped my cough in the end… but I think you’ve had yours about a year already Michelleanne. I do hope it goes eventually. Is it productive or dry?
Ive found a good resource from Harvard medical school. I just subscribed free and I get emails with info. It’s not gvhd stuff but I’m trying to change my identity from disabled loser, which is how I feel to, disabled and goer. The lenses have helped, , made a big difference , I can see now , keep my eyes open, and don’t have acute eye pain which was awful and closed me off from the world, socially and physically.
Unfortunately my mobility is not yet recovered. I’m trying hard to walk more.
I‘ll just hit send, sorry to go on… you and Audrey have it harder than me.
sending my love to you both. I hope no news is good news Audrey, I think your gvhd time might be over. I certainly hope so.
H x
Hi helen
i think the change in the weather makes my cough worse , you should never think of yourselves as a disabled loser , we have to learn to be more kind to our selves
we all go through hard times never gets any easier
stay strong ❤️
Hello Michelle and Helen
sorry I haven’t managed to check in for a while but I’ve enjoyed catching up with your chat especially the positive things that you’ve been sharing.
Helen, it must be so wonderful for you to have the lenses and the experience the benefits of vision and no pain . I am so pleased for you and can understand that your emotional state will have got so much better now that you have your new lenses.
Michelle, you don’t have it easy, either and you do remarkably well to take so many medical issues in your stride. I’m glad that the cough isn’t any worse just now and I really hope that the vertigo backs off soon.
Helen, yourself and everyone who has gone through similar experiences to what you have gone through are certainly not disabled losers . As someone who has watched my daughter and her fight for survival, I would call you all superheroes ! You never give up and you are always there to help and support others . You definitely deserve rest and recovery days!
my husband has had major surgery where they removed part of his bowel so this has been / is a worrying time .
The driver of the car, who pled guilty , withdrew this plea at the last minute . It was like a punch in the gut. We now have the prospect of a full blown trial! Consequently my fibro has been flaring and each day is quite a struggle .
so we’re definitely the 3 amigos , putting forward one foot at a time every day.
my daughter is still doing well. The shingles is still there but easing off a bit and the licodaine patches have helped .
Thinking about you both and lovely to keep in touch. Xx❤️
I wrote the message at the bottom ages ago, but forgot to post.
so sorry to hear about hubby Audrey. I hope he’s picking up after the major surgery. It’s our age… we’re really noticing it here too. It feels like we’re getting old in speeded up time lapse.
My eyes are making a difference still, but it is treating the symptoms, the gvhd is still there and limiting me. Painful ankles, eyes aren’t perfect but still brilliant. Generally struggling as usual.
I talk to Dave sometimes, it helps.
I’m very sorry to hear about the driver Audrey. It’s terrible. I can’t imagine what it’s doing to you. Please know you and your family are loved and try to be kind and gentle to yourselves , in the face of endless torment easier said than done.
… heres the old message.
Thank you dear Michelleanne, that warmed my heart.
yes, let’s be kind to ourselves, agreed… promise:)
love to you both, stay strong
love
Helen xx
Hi
sorry I haven’t been on here for a while , had a rough time over the last few weeks
i think we all struggle at different times and different ways
helen you sound more upbeat it’s lovely to hear
audrey it’s so horrible what this driver is putting your family through I struggle to wonder why people are so nasty
stay strong remember you’ll never walk alone
love & best wishes ❤️