For those who dont know me, im Janny, 35, single mum to 2 girls, ROBPI and im from Scotland. I have NEVER met anyone else with Erbs!
Last time i spoke to you guys i think we were gonna have our first trip to America (Walt Disney World) and the girls were 9 and 13.....well we are now looking forward to our 5th trip to Disney in November, the girls are now 17 and 13....the eldest has been diagnosed with ADHD though she doesnt take meds anymore. I am now also working 2 jobs. I started work in 2006, the first since my big surgery in 2000! Menial, minimum wage jobs, but jobs none the less...i clean our local college campus and i also work in a bingo hall.....dont know about the U.S., but bingo is BIG business over here in the UK!
I still have good days and bad days....they have recently found 2 curvatures in my spine (scoliosis), something i have been trying to tell the doctors for years (i reckon i know my own body!!). These were actually found during a scan i had for Osteoporosis (im about a year away from having full osteoporosis
)I dont take any meds and i dont visit the doctors anymore...they know SO LITTLE about this injury over here that i only come out of the doctors office deflated and with a prescription for Tylenol!! So i gave up and try now to work with my own pain any way i see fit....relaxation, warm baths...well you all know the kind of thing i guess!
Secondary pain is my main "issue" at the moment....neck pain, back pain, overuse of my good arm and legs compensating for arms LOL. Other people just dont understand either.....if i had for example, Multiple Sclerosis and said i was in pain, people would understand that, but tell people you have Erbs Palsy and you are in pain, well they look at you like you have two heads!!!!! LOL (sorry, i have to laugh, coz some days i could cry!)
I do know my limitations, but some days, well, you have to push the boundaries dontcha?? It makes for a more exciting life!! I THINK what im trying to say here is that after a long time of going through a whole range of emotions over my injury, i have finally come to accept that this is my lot, nobody (except others who are going through the same) will ever understand, and i just have to smile and get on with things as best as i can! Its the only way forward.
Hope to speak with you all soon xxxxxxx
