Hi Kate,
First, I would like to say, how happy I am for you, and your remission. Five years is a very long time. Lindsay is still doing well, as I have told others she did have a fall, and has taken some pain pills, but only one or two over the past week. She is still going to school and I am drinking in all of those smiles. It is wonderful to wake up and take her to school and be able to go to work feeling so happy for her. Thank you for your kind words.
Sandy
Quote:
Originally Posted by Cake
I'm another one who's so happy to hear of her success!
I've had mixed results but my best was after my 2nd infusion, where I had 10 months pain relief. The one thing I have to stress is physio, physio, physio.
I worked hard to strengthen my arm and hand (as that was all that was affected at that time) while the pain was gone and I'm so glad I did. If I hadn't have done that, I'd be in a wheelchair now as there's no way I could have used crutches when it spread to my leg.
We also did a lot of touch and massage, to desensitize my hand and arm. Before that infusion, noone could touch me without causing pain, now I'm 5 years past that and I can still handle touch. My kids can hold my hand and I don't wince when someone touches it.
I hope she has a long and happy time of remission from this, but keep going with strengthening and moving her limbs so even if the pain does come back, she's stronger and won't be so limited by it.
Best of luck with it all and don't worry about the future- enjoy every day she's given, make the most of it, and drink in all those smiles! Don't worry about her overdoing it, just let her enjoy what she wants to do, as she'll be storing those moments in her mind to remember should the pain all come back. They'll tide her over for a long time, believe me!
x Kate
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