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HelenSpeedwell
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Hello all, I often wonder how things are going, with you all... This is a long one.. Michelleanne, have you got a definitive diagnosis for your chest problem? Or is it getting gradually better? I do really hope that you start to see some improvement, however small, just to give you some hope and motivation... although hope…
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I'm with you in my thoughts Audrey. Hope you're ok. Can't imagine how you're coping. So pleased about your daughter, Love ... to all too, hope you're all ok. Helen
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Hello all, Tiny secret gardens is a Facebook group. I'm also in gvhd upside and gvhd. A few others too if you're interested, let me know. Dave, it was lovely to see you light up about Alison's horses. It's a good sign she's not around, but a shame particularly for you. I have a tiny garden, it's a real overgrown cottage…
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The flight was cancelled as I sat at the gate in my wheelchair. What's happening... bonkers. We've got heat alarm level 1. So I'm in doors with shutters down. But the airport saga pushed me and that was good. I even went on a bus first time in 3 years. Lots of help and support but still... I do stairs backwards. I'm…
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Hello you dear lot. I keep wondering how you're doing Audrey? Are things moving forward? I'm with you in my thoughts, especially at the moment. I hope your daughter's making headway. That's lovely to think of. I'm off to visit hubby in a clinic in Hamburg today. I'm flying from the south of Germany, alone with registered…
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That's nice... I can bond with that idea, my genetic twin. I do hope your mouth isn't too bad Michelleanne. Mine was so bad I could hardly brush my teeth. It's better than it was... far from normal. Night night 🌙
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Thank you Audrey, I needed that bit of info. You're always there for us and now I can understand you better. Please let me know if you'd rather I didn't mention it. It is so exhausting and I guess it might be helpful to have space where it's not mentioned. I'm thrilled to hear that your daughter is moving on. That's…
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Michelleanne, I was given some tablets/losengers for my dry mouth at the dentists recently. I only use one at night if I need it.(in the day I use mouth wash) I'm going to get some, they're over the counter, prescription free...called Xylimelts, only for nights. And Volon gel helped recently too, both mouth gvhd. The volon…
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Hello Audrey, thank you. I was thinking of you too... wondering how it's going. You have a lot on at the moment. I hope you're coping ok with it all, how are you? I hope they can process things quickly. I hope your daughter is still doing better. Is she in her own home again now with the children? I'm writing this in the…
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Lovely to hear from you Michelleanne, I'm really glad they've been able to sort you out a bit with your low mood. It's so important... I think it even impacts on my physical well-being. I'm feeling better too, yay hay... we can't say that very often . Always good to share, whenever, whatever. I'm thinking of you Audrey,…
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Hello Audrey Thank you for your update, it really is very very helpful for me to know that your daughter is doing ok. Maybe she'll have a challenging path ahead, who knows. I met a sufferer by chance in front of a waiting room and he was having his annual check after almost 30 years of no trouble after a sct and leukaemia.…
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Hi Dave, ... mepilex is for burns ... just googled it. That's new to me. It gives me a new approach/search tag, for my skin. It's for open, leaky wounds. You can leave it on up to a week. That's the stuff I've been using... without 'ag'. It's silicon and doesn't breath. Maybe you could get a bit prescribed. I cut it into…
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I've been giving tacrolimus another chance and , with emollient/Dexeryl and other moisturisers for dermatitis ... it seems to not be getting worse. I even went out with Nordic walking sticks tonight and got some amazed looks in the village that I was so good at walking. One farmer raised his eyebrows and did a double take.…
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Hi Dave, my Dr at the lymph clinic said he couldn't help me until the skin improved... hat was when I got that intensive cortisone treatment every 2 days.... Unfortunately my skin is also weak, leaky and the same Dr said when/if one wound closes that another will probably open. I think ecp is the only hope. The odeamia…
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Thanks Michelleanne, and i hope they can find a way to help you with your chest. I hope you've got a good book on the go and some nice Garn for your knitting project. I hope you, Dave and Audrey are doing ok too. So pleased about your daughter Audrey. It's wonderful. Look after yourself a bit more now that you have a…
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Hello all, It's been a while. I spend too long online, discovered Facebook... some nice groups, slow stitching... I used to embroider before. I'm not back there yet.. it's still nice to share about other things though. Unfortunately my feet are getting worse. I know where it'll end up again if it goes on. I'm going to…
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Hi Michelleanne Have they got any further with a diagnosis for your chest problems? You've been so long without taste. That's really hard :( How's it going? Dave, I'm glad at least markers and tests are suggesting things are positive. I hope very soon you start feeling the benefits. Who knows... maybe you'll crack this…
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I haven't been able to taste since june, july 2021. It's wonderful. I didn't even suffer any more, I just didn't taste things.
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Good morning, I'm off for my ecp today. Looking forward to getting home tomorrow and feeling a bit normal. I had a meal out last night and could taste everything. It was amazing.. think I must be getting taste buds back. Let's hope it stays, at least a while. You're all with me. Thank you, I hope you're all at least ok and…
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Hello, thank you for your kind words. After my appointment I researched an online course I did before the leukaemia diagnosis and tried to find it, it did me so much good that first time around. It was a free online course on the futurelearn platform about mindfullness and self compassion. I did find it, it's still there,…
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I saw my GP today. I was a bit worried about being forgetful and anxious and very low recently. I also find it difficult with the language, as you know. She was great. Really took time. I thought I might need a check up with a neurologist, but she said, she doesn't have another patient who's been as ill as me and that it's…
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That's nice. I bet she's pleased you've found support here.."in your pocket". I think of her sometimes... she has two boys right? In my head they're about 6 and 8. Funny how we just fill in the dots. I tell hubby about you all too. It certainly helps him to know you're with me. He feels sooo overwhelmed by it all so often,…
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Hi John Is it muscle weakness or skin/joint fibrosity? Welcome! By the way ... Looking forward to sharing. I had my sct 2021 june. Nowhave cgvhd. Hope you're stable . Helen
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That's terrific news Audrey, she's young, she going to get this, beat it. Your news is inspiring, thank you so much. It's not easy to share things here that are soo good because we're struggling so much. You've really cheered me up! How wonderful for her children.... and of course you... and your daughter... and all... and…
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What a kind message Dave, I agree. He's right Alison. I would try not to have the drink in the house... as soon as it's a decision.."do I or don't I", we're lost. I think lots of us have had phases in our lives where addiction has been a potential problem. Don't go down that road, it goes nowhere. You're in such a…
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Hi Dave, I've checked out your message with photos.. it's something from Whit Davies. Is that right? There's something else from you but I cant open it. In the light ... or darkness of my downer last night... I checked out 'side effects' from my recent antibiotic and was 'relieved' to read ... depression and anxiety... so…
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Thanks again Dave, you we're really helpful, Audrey , Michelleanne, Alison, all of you. Today is another day. I was sooo lucky you checked in Dave. Love to you all, Helen
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That's so nice that you checked in Dave. I've been on a real downer tonight, but am gradually finding my way to a place of calm. It's so horrible this. It makes me feel sooo isolated... it's horrible. But I can't go back down the slope... I'll get off and try to do something sensible. Distraction. Thanks again. Thankfully…
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Hello you lovely bunch, Happy.. at least peaceful Easter. Lovely to hear from you all... . We can't always be on the ball here...we actually need to get on with life too:). I gave myself a mobile phone ban recently... I can spend too much time on it. It did me good. I was delighted to hear about the jeep and your Dad…
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I hope it's not cgvhd lungs.. but you'll beat that too if it is. I hope they can find a diagnosis soon. It's horrible not knowing. Sleep well and love to you Michelleanne, night night all, Helen