persephone Posted October 25, 2008 Report Share Posted October 25, 2008 Hi. It's been a while. I thought it might cheer some of you to know that I appear to be in total and utter remission. EPO continues to transform my life, not just my blood pressure! I'm back at Oxford working full time on my PhD.I can't believe it, but I am able to make my way to the top floor of the Bodleian Library- 75 steps! - each and every day, and work 9-5 in a bolt upright chair. The difference is incredible.Pacing myself is also helping. I know it sounds obvious, but a) getting up early regular mealsc) finishing work no later than 6 pmd) generally being in bed by midnighte) making time to socialise most days but also having at least 1 or 2 'quiet' nights a week where I can chill out and lie down for a bit from an early time...helps so much with my energy and 'spoon' levels.Those of you who have been on the boards for a while will know how bad I was with POTS; my cardiologist caught my bp flatlining in my last tilt and said I was the worst affected of any patient he had seen or heard of. I came to University with a wheelchair, stick and load of other disabled-related things; this year, for the first time, I came with not even so much as stick.If this can happen to me, I hope it can happen to you all. Let me be proof that this condition, for some of us, CAN improve in the late 20s, or after an infection/virus has resolved.All the bestPersephone Quote Link to comment Share on other sites More sharing options...
Ernie Posted October 25, 2008 Report Share Posted October 25, 2008 Hi,I am really happy that the doctors found a miracle drug for you.Keep up the good studying! Quote Link to comment Share on other sites More sharing options...
pat57 Posted October 25, 2008 Report Share Posted October 25, 2008 yeah! Quote Link to comment Share on other sites More sharing options...
nantynannie Posted October 25, 2008 Report Share Posted October 25, 2008 Persephone,CONGRATULATIONS!!!!! Is it possible for you to explain further about this treatment? Thank you!Ann Quote Link to comment Share on other sites More sharing options...
Rachel Posted October 25, 2008 Report Share Posted October 25, 2008 Hi Persephone,I had been wondering how you've been. Thanks for checking in with us. That's great that you are continuing to see improvements. I'm glad that the epogen works so well for you!Rachel Quote Link to comment Share on other sites More sharing options...
flop Posted October 26, 2008 Report Share Posted October 26, 2008 Hi,thanks for the update, it is so good to hear that you are doing so well. Keep up the good work (studying and socialising - enjoy being a student rather than a patient for a while!).Flop Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted October 28, 2008 Report Share Posted October 28, 2008 What great news. Katherine Quote Link to comment Share on other sites More sharing options...
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