Another New Kiwi Member
Hi Darcy, (and all the above on this thread)
Am new to this so please bear with me.
Basically just wanted to say Hi to Darcy, I did send you a PM couple days ago but not sure if you got it. Anyway as you are a fellow Kiwi ws wondering if you had been in touch with the National GBS / CIDP support group?? Jenny seems very efficient and helpful!
Quick run down on my history is very fit busy mother of 3 ( 5, 5 and 2.5 years) and very part time icu and heamo dialysis nurse. Following increased training for triathlon in March, developed Mastitis (recently finished b/feeding) was treated immediately, recovered ok, as recovering noticed R)shoulder was feeling weak with reduced range of motion. was thought ? sports injury from all triathlon training and given physio and then had 2 cortisone injections to relieve intense pain especially nocturnal. This did help the pain. Also had usual flu shot around this time. Has study day at work and discovered other arm increasing weaknes, couldnt hold coffee cup etc and at lunch legs were like jelly, that night all 4 limbs worse. Next am son had to dress me and feed other kids etc. Walking to school pushing pram legs gave way crossing road and the rest pretty much history. Had already booked to See doc as new i ws not tooo crisp, had lost arm and leg reflexes and hospital LP showed the high protein etc. Got weeks worth of ivig with ok result and discharged home ater 2 wks (1 week unvented in icu). That was end may. In a nut shell since then have continually relapsed into full paralysis, could only lift my head. Nurses did all my cares, turned me, fed, washed etc. Longest i have been home since first admision is 3 weeks then boom. Neuro seems great, has widely consulted and have now been on for the last 6 weeks Azathiaprine (Imran) 50mg 3 times a day, Iv Methyl prednisone 500mg on Mondays also ivig Mondays and ivig Fridays. (Have tried the other therapy’s including 1 x weekly ivig, then tried 2 x wkly ivig, then o pred plus 2 x wkly ivig etc) Been home nearly 2 weeks but am doing well. Have just started driving again, can hug my children, lift the youngest onto the toilet, shower, feed and dress myself and my children!!!!!!!!!! Got such a thril to hang out washing and to unpack the groceries, although didnt quite make it round the supermarket yet. I am on sick leave, we have had to employ a nanny, our bathroom is being modified and electric wheelchair is on the way. Maybe by the time it arrives i wont need it!!! Have just started walking well, not on strait legs with lock knees and hip, and can manage quite a bit without arm crutches. Am looking forward to starting back at regular physio in the gym, she currently is coming to my home, but with such good progress will be in her gym in no time.
Hang in there, as one of the others said, you never have to look far to see others worse off and heh theres always tomorrow. My most supportive thought for myself when the crap was really hitting the fan ws ‘ lest its not 1 of my kids dealing with this” (sorry to all of you Kevies mum etc , that wont seem a fair comment at all and i admire you all so much) i got strength knowing id rather deal with this **** than see my children struggling and knowing there ws little for me to do.
Cricky what a book, guess you can tell i had the methyl pred today huh. neva mind, all the best to you all and look forward to reading your news.