A Little bit about me!

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A Little bit about me!

Post  Firebelle_uk on Mon May 25, 2009 10:45 am

Hello all, this is Firebelle my real name is Verena. I am 47, married and Mum to Helen(20) and Malcolm(Mally 19) who both suffer from RSD. I'm not going to write too much now, asI will try and post our stories in the next few days. What I will say just in case anyone out there is really in despair at present is that both were seriously disaabled by this dreaded complaint, but both have fought back at least to some degree. Helen is seriously courting and got her first job this week (ok it's only part-time but hey..........!), and Mally has appeared in several TV dramas as an extra, is job seeking, and manages to go out oin the town with mates etc (he was i a wheellchair at one time.
Now I spend a LOT of time caring as my husband is also disabled and my Mum has Alzeimhers disease, but when I do get a chance I enjoy gardeniing, fishing (I'm so mad on fishing I get my rod out oif it rains and there's a puddle in the garden lol!) and my pets. We have a border collie (Brecon), a young cat (Kayoss), a Cockatiel (Peter who we recently found out was a girl Embarassed , and a budgie (Sammy), we also take care of my Mum's Jackrussell cross(Milo) for her so all she has to do is fuss him!
Will write again soon




Posts : 10
Join date : 2009-05-24
Location : Bristol UK

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Re: A Little bit about me!

Post  rsdteen on Mon May 25, 2009 3:08 pm

Hello Verena and Welcome to the forum!!!

Thank you so much for sharing your story with us!! I'm so sorry to hear that both of your children suffer from RSD - I can't imagine how hard that must be at times and really feel for you! I have seen what my mum has had to go through and how stressful it can be for her at times dealing with my RSD but it must have been especially hard for you ((hugs))!!

I'm so glad to hear that both Helen and Malcolm are doing better now as far as dealing with RSD goes and that Helen is now seriously courting - that is great news and you must be soo happy for them both!!!

We have spoken via email and I went onto a similar program as both of your children. We looked into going to Bath hospital for their Intense Pain Program but my doctor refered me to Great Ormond Street Hospital where I underwent 2 intense Physical Therapy Programs. I'm no where near pain free and still deal with a pain level of 8 on a daily basis but without the program, I probably wouldn't be walking now as like your son, I was wheelchair bound for 13 months due to a complication from a nerve block. The Physio's want me to return onto the program again as they want to cast my leg as I have severe Dystonia - I don't want to have that done though if I can help it as I know it can make RSD so much worse !!!

You sound like a great and really fun person! I had to laugh at your comment about your bird, Peter who you have found out is a boy lol as one of our neighbours has a bearded dragon and no one can tell if it's male or female so they have called it He-she lol !!

I also have lots of pets like you! My mums always laughing as our house is like a mini zoo!! We have a springer spaniel, African Grey Parrot, Hamster, Chinchilla, Chameleon and about 8 fish lol !!

Thanks again for sharing your story with us - I really appreciate it and am sure it will bring hope to many people!!

I hope to read more of your story soon and please send my love to your kids!!



Posts : 185
Join date : 2009-04-10
Age : 23
Location : UK, England


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Re: A Little bit about me!

Post  wowso7 on Sun May 31, 2009 6:13 pm

i have a golden retriever. she's so sweet!


Posts : 144
Join date : 2009-04-11

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Re: A Little bit about me!

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