For those who don't know and are new to my blog. I have a teenager with Juvenile Rheumatoid Arthritis. Katie is 15 now and was diagnosed in 2006 with Enthesitis Related Arthritis and Psoriatic Arthritis. I have been a fundraising girl for about a year now and in 2011, I raised £824.
This is Katie, Melanie from Arthritis Care Scotland and Myself in May. I had just abseiled from the Forth rail Bridge despite a massive fear of heights, think it took a few weeks for me to stop crying.
I hope to top that again next year by continuing to run card making groups for Crafting girls. By selling handmade items and by talking to groups about how Arthritis affects ALL ages.
It isn't a Disease for auld folk. My daughter has it and will have it for life, she will continue to require drips 6 weekly, daily pain medications and weekly low dose chemo tablets called Methotrexate. on top of that she has steroid injections into her joints and physio...
We have a motability car, this allows us to get about without putting stress on her joints, to get her to all the Drs and clinic appointments and not to mention collecting her from school as much sometimes as 3 times a week due to pain levels. Her attendance levels are at 75%. we cant count the sent home levels as its not recorded.
She struggles to get in a bath, cant run for a while with her friends, had extreme exhaustion, she can easily sleep from the moment she gets home from school until the next morning, struggles to write for periods of time has no muscle in her hands so is unable to hold heavy things and drops alot!
Pain levels are through the roof so Codiene, Amatryptaline, Paracetamol and Brexidol are her daily friends... shake her and she does rattle. We have a referral to pain management clinic so that is another clinic to add in to the mix.
She has joint damage to a lot of her body, jaw joint damage and is in need of a jaw replacement, she has steroid injections on a regular basis, on average 3 times a year. to sometimes as many as 18 joints at a time.
Winter is a killer for Katie's joints. her pain increases ten fold and her grump factor multiplies by 1000. My grump factor also increases ;)
People look at her and think..... she looks healthy, she is tall and slim and pretty, smiles a lot so cannot be so poorly.... live with us for a week and see what its like.
So please support the Campaign. There are many Katie's out there. Different ages and different conditions.
Sometimes we look at a charity and think ok they have our money and we don't hear from them again, we have no need mostly. we just part with pennies when asked and think nothing more of it. Happy that we have done a wee bit to help others.
Arthritis Care however are not a behind the scenes style of Charity. They are a campaign type of Charity. I saw their facebook update today for The Hardest Hit Campaign. The are petitioning, not just for Arthritis BUT for other conditions too. Asking the government to STOP the attacks on Disability benefits and the sick.
Their Campaign can be found here...
http://www.arthritiscare.org.uk/Campaigns/TheHardestHit/all-we-want-for-christmas
