Vasculitis UK
5,679 members5,125 posts

Another day another dollar

Another day, another dollar. Eh? Today's bonus was an end to end EMG and NVC test in neurophysiology. Good news: no new neuropathy I don't know about already; but lots of weakness in legs is confirmed. Then down to rheumatology for big dose of methyl pred and cyclophosphamide. So now it's 1:30 am and I'm still wide awake as a result, so guaranteed next two days will be real poop as the pred lets go.

On the plus side I am starting to feel better. Still have awful night sweats and joint aches but I've turned the corner. The deterioration in my legs has been halted. Go away wheelchair :D.

After 16 cycles of chemo in 15 months I must confess that I feel quite tired of the constant trips to the hospital; chemo treatment, blood tests, rheumatology, urology, neurology, neurophysiology, physio appointments, and I'm sure I missed a few...but I can't complain as it's ALL in my best interest.

Folk look at me and think I can't be ill (because I'm too strong/proud to show it, and my hair refuses to thin or drop out). Very few know what it's like and how bad the pain can be (you guys, my partner Hazel Chislett know best, right).

But as many of you are testament too, the patient can win. And I'm going to. I've had a real reminder how sudden PAN can regress (in June I was in remission and walked 31 miles for vasculitis uk, as you can see 3 months later...) but I can equally kick its arse in equal recovery speed.

See you in June 2014 for another very silly fundraising walk. You guys in remission; you're my complete motivation. Find your own reasons to beat your vasculitis. I know mine: my kids and hazel all deserve many more years.


1 Reply

Thanks Wellsie. It's great to read your postive post. It was just what I needed after a rather deflating phone conversation with my rheumy earlier.

You are inspirational too, walking 31 miles in the midst of all that treatment! Very best wishes now & for the walk next year. And please keep posting how you are getting on. X


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