Do you get really full when you eat ? I just don't manage a whole meal these days ,
Yet I don't lose an ounce on the scales .why is that ???
I eat real healthy nowadays, fruit as snax ,vegetables ,all sorts ,I feel fine, but if I eat bread , meat , or cereal based food I get uncomfortable ,it sure interrupts my sleep to feel so full. Have you noticed this change since diagnosis ??
Hi Twinkly - - you need a new battery in your scales they don't last for ever. It's a good sign to maintain a healthy weight with MPNs, Ive been steady for years but dropped to 8' 10 in last few month which isn't great when you consider my calorie intake, which i cover in beer most days LOL By comparison you are a picture of health and goodliness I wouldnt worry too much if I were you. You'd b a goddess if you were on my planet xx
So there you are JR.i guessed if I moaned loud enough you would surface,I hate the fact iv got a tyre that could keep the titanic afloat!!! And I'm having trouble taking off with these lightweight wings, I worry about you .how are you doing ,has that clinic mentioned ruxolitinib again to you yet?? Why don't you write to Clare Harris at st Thomases and ask for a second opinion ,I promise you it would be worth the effort,I'm so good on this Majic trial ,they look after me so well.I'm getting spleen scanned on Friday,they say I'm a blooming miracle my bloods are normal now it's 9 months and counting,you take care of you , Twinkly. X
Hi Twinkly, yes I get full really quick too and also not losing weight! I do eat healthy with fruit and veg but do seem to need carbs too or have even less energy. Just trying to eat a balanced diet with treats too - I think we deserve them. kind regards Aime
Aime,you are so right about the treats ,lets make life worth living ..I love strawberries ,
But I miss fish and chips tho.. So I slipped of the wagon , Big mistake ,,,, I was up for 2 nights in agony, a lesson learned,,, Keep twinkling ,,xx
Twinkly, I lost weight just before I was diagnosed and although I am steady now only weigh 50kgs. Have no appetite and am sitting here now wondering what I can have for dinner. I enjoy my treats, especially chocolate! Keep well xx
Hey twinkly, I was admitted into hospital
For three weeks and lost two stone in that time. I have put most of that on and so grateful I feel stronger being slightly bigger. I have cut gluten and wheat out of my diet along with 80% dairy. Not sure if it will make a difference but as you said I need to give it time. I feel less bloated. Although I have a weakness and that's sweeties and ice cream hence the 80% dairy....I know they do free from but it's just not the same.....I hope your doing well and the trial is working for you. Take care xx
Been to a steam rally with sasha ,he's a star ,,he raised £56 for MPD having his picture taken and being kissed ,,cuddled,,and stroked ...He's working for the cause !!
( that's Sasha in the picture) ,,
Hey Twinkly, good news about the Majic trial, do you have ET (I do) and please tell me more about how it helped your condition.
Hi AI. I could go on and on about my problems ,but I try not to moan ,I was lucky I realise that to go to addenbrooks and get help just in time, I didn't ask ,,yet I was given the opportunity to go on the Majic trial, August last year.. My horrible flushes and fatigue has all but gone ,,I'm going for a scan on Friday ,jelly on me belly time to look at my spleen and liver ,,ill let you all know if it's twins , or triplets,,I have P.V. And clotting ,
Oh yes and rheumatoid arthritis too ,but I'm still twinkling. Xxxx
Good for you! I wish you good luck!
Well yet again im feeling grot, since wed , finding it all a vicous circle ,i need to eat somthing because...
probably eat too much!) Anyway. feel good and the bottom line is stay the course and live life. So you guys...
initial diagnosis, I was put on daily aspirin which stopped all the symptoms I'd been getting, including...
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