United Brachial Plexus Network, Inc.

I dont know if anyone will remember me as i aint been around, i guess since 2004!!
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

Hi Janny
Glad to see you posting. I often wondered what happened to you. This is the only place where people truly get it when we talk about challenges and pain.
My legs are now paying for compensatory use so I fully understand.
I can't believe your children are so grown up already.
I'm wish you were going to Disney in 2009 because you would have an opportunity to meet with us at Camp 2009 in Fla. It is not far from Disney. It is very healing to be with other adults who have faced so many of the challenges and disappointments you have.

My kids are grown and my grandchildren are growing up very rapidly since we last spoke. My oldest daughter has MS and trust me no one gets that either. My oldest grandchild is about to go enter HS. and the little ones are starting school.

As for me I am the Queen of Secondary injuries. I wish doctors would study this injury so that these injuries could be prevented. It's amazing how our injury appears to be an arm injury and yet it impacts our entire body.

Keep in touch we missed you.
Kath robpi/adult/NY

Hi Kath!!! I knew you would remember me!! lol

What time of year are these camps held? I would dearly love to attend one, and will be visiting Florida again sometime between September and November 2009. If i could fit it in that would be awesome!!!

Looks like you will be able to make it.
The exact dates will be published in Outreach.

It would be great if we could finally met up.
Kath robpi/adult

I do remember reading some of your posts when I first started reading the boards. Welcome back! It would be amazing if you could come to camp in 2009. Teach me a few things about the secondary stuff. Its hitting me like a ton of bricks right now, my good arm is killing me.

Stick around for a while Janny!
Hugs,
Amy 21 years old ROBPI from MN