I hope you all don’t mind but I want to share my little bit of good news. Found out on Friday my arm has reduced again (this is twice in a row) and is now at 25%. It was 33% then 30. I’m really chuffed. Unfortunately the new sleeves she is ordering will still cover my hand and thumb because of the risk of fluid going there (as it did before) but hopefully in 6 months and a further reduction this will change and I’ll be supplied with a “Juzo” instead of this awful Medi.
Take care everyone.
Well done Lynni. Have you had any treatment or just compression?
Only treatment so far is sleeve, lymphatic drainage twice a day for 10 mins each and exercise rwice a day 15 mins each. I did ask about MLD but don’t do at my clinic. They are hoping to get finances in place to train someone in MLD/bandaging but they will only treat people whos arm is 40% or above. Horse and bolted comes to mind.
Congratulations Lynni - that is excellent news. You must be so pleased. Do you think being off work with the DVT and elevating everything helped as well?
Horse and bolted definitely comes to mind with your lymphoedema ‘clinic’ . 40% or more is ridiculous - downright cruel. If they can’t offer MLD or bandaging, what exactly do they do?
Hope the improvement continues
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I did wonder if being off work has helped. At work I do try not to sit to long in one postion and have breaks when doing repetitive tasks, but its difficult as time can go so quickly and I don’t always realise. It will be interesting when get back to work what happens to my arm.
I think my lymph nurse is also frustrated with the lack of funding etc I should maybe start campaigning…
Take care everyone x
Yes, I find time goes by and I should have moved about more and earlier! Rolled those shoulders, etc, etc
I agree, it must be so disheartening for your lymph nurse to have patients she cannot help.
I’ve often wondered about a protest in Downing St (or perhaps NICE Headquarters). Trouble is, we wouldn’t be able to lift the placards up and march with them!
Perhaps we’d each have to settle for a sandwich board that said:
‘I’d be carrying a placard if I didn’t have LYMPHOEDEMA!’
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Hee hee, like it.