*WAVE* (gently)

Beebopaloo

A very nice lady told me to post my hello here rather than in the other forum so here goes -

My name is Beccy, I am a lawyer and 29 years old. I have advanced Osteo-arthritis of the cervical spine.

18 months ago , C4,5,6&7 were replaced with carbon fibre implants and osteophytes were removed from my spinal cord (I had 8mm spinal cord compression on 3 levels caused by the degradation of the vertebrae). Since then my C3/4 and C7/8 joints have degraded at a surprising rate and C5,6,7 have fused of their own accord leaving only 6 degrees of movement in those joints - it is anticipated that within the year more vertebrae will require replacing (probaly C3 & 8 ).

My spinal cord was scarred and bruised from the osteopyhtes and I now have a condition whereby I get electric shock charges in my back and I have lost substantial feeling in my hands. I have ADHD and it gives me ticks (like a person with tourettes) and it is believed the ticks are the reason my spine has degraded at such an increased rate but frankly, who knows!.

Saying all of the above - I continue to do a lot of exercise, play sports, go to work everyday and I am looking to run my first marathon next year! The exercise is painful but it keeps my mood up I also have found yoga, shiatsu and massage really beneficial.

Although the pain is awful my main concern is the future - I just dont know how bad it is going to get - but if my spine is like this at 29 then what will it be like at 50? I am sorry if my hello sounds a bit sorry for myself- in truth I am just quite frightened but I find it hard to tell my family and friends how scared I am because I know how much it will upset them and I try to stay positive.

I guess I would really appreciate someone who actually understood how it feels and how painful it is and how scary it is.

I hope everyone is feeling strong today and I appreciate anyone who has taken the time to read this

Beccy
xxx

elnafinn

Hi Beccy,

thank you. the "very nice lady" was me. :oops:

Soooooooooo pleased that you posted on this zone.

Yes, I do try to keep cheerful, but then I am a lot older than you, you could easily be my daughter. I do have a daughter and she is 32 years old. My problems did not start until in my early 40's or thereabouts.

Looks like we may have "spines" in common. :roll:

This is a great forum, for help and support and on those not so good days, horrid days, to call in here and have a rant or ask for sympathy or a hug and we are there to help out. It is lovely to read happy threads too when forum users have a good few days, go on holiday or a drug is suiting them and giving them their life back.

I do hope that you find this forum is for you.

Elna x

elnafinn

Hi again, Beccy,

Julie47 is waiting for an op date to have a similar op as mine so we are keeping in contact on my post op thread. It is scary having ops anyway but near the spinal cord is particularly nerve racking so I am letting her know how it has been for me post op and so far it seems to be going well, although I am still left with the pins and needles and find walking more difficult but that may or may not improve for me, in time. I have had such a huge response when I told other members about my forthcoming op. They are a great gang, second to none and I am overwhelmed how they have helped me on this occasion and in the past along with family and a few close friends.

Hugs
Elna x

tjt6768

Hi Beccy, welcome from me too. Hope things are ok for you today. This is a wonderful site, full of knowledge and advice, fun and laughter...
Hope you find your feet so to speak :!:

Be well hun, and it's nice to hear you are so positive

Beebopaloo

Hey - thank you all for your kind words and making me feel welcome.

Elna - I shall take a look at your op post - I am sure I will see a lot of my own story in there! It is so understandable that your friend Julie 47 is so nervous - in truth I was terrified before my op but I always like to think that, I may not like what I have but everyone gets dealt their cards in life and these are the ones I got. So the only thing I can do is play my hand the best that I can.....

Also - this is probably going to come out all wrong but even though I wouldnt wish my spine on someone else - it is kind of nice to know someone else knows how it feels

frogmorton

Hi Beccy

very pleased to meet you

l have inflammatory arthritis and also OA back and neck too :sad:

I have also had spinal surgery though luckily in the lumbar area and also have some (though hardly any!) nerve damage.

I hope you will soon feel at home here - glad you met Elna she was first to welcome me when l arrived a bit back

Love

Toni xx

elnafinn

Aw, bless you dear Toni. You did feel so lost and unhappy, my heart went out to you instantly. Look at you now? We told you things would change/get better for you with time.

Love
Elna x

mig

Hi Beccy,Just wanted to say hello and welcome,i have ra in my hands and feet but am doing really well at the moment,this is a good place to have a rant and moan always someone to listern,also a good place for a laugh even if its sometimes at ourselves.Mig

valval

hi becce a lot of us rant on here to save having to worry loved ones it bad enough we are worried about the future with out worrying others. i have ia so can not give advice but try not to worry about the future it will change nothing and they might have found some miricals long before you need them good luck keep exercise up val

Beebopaloo

Hey everyone - thanks for the kind words. It seems that you have built a very warm and friendly environment here which is really lovely to see. I cannot explain why but there is something very isolating about having arthritis and sometimes you feel a bit stuck in your own body. So it is very reassuring to not feel so alone.

xxxx

valval

yes it because unless you have it you can not realy understand how it messes with your head but we are here with you to share the ups and downs val

traluvie

Hi Beccy,

I have posted on your hello thread..
I can see you have already met a few of us..
Look forward to seeing you around

liesa

Hi Beccy, welcome xx

Star2001

Welcome Beccy! People in here are so very welcoming from the very start and I for one am so glad of the support. It's so true that this is a place where we can be heard, advised and comforted, whatever is needed at any particular time

Star x

lalla

Hi Beccy, sorry you are going through a rough patch and yes Im sure you do feel frightened and indeed grieving for what you were before all this, dont know about spinal surjery yet but come here when you need to shout or ask a question or just say hi and let us know how things are (((())))) Take care Linda

Colin1

Hi Beccy, wow your really having a bad time of it, A great gang on here who really understand what your going through. Its good to have someone you can share your thoughts and fears with, and yes it can get scary thinking about the future. Its difficult with family and friends because for the best part we suffer really bad but you cant see our illness and at times we look quite well but inside we feel so bad. Keep the fitness up i find it really helps keeping fit also has a social side and keeps your mind occupied. I'm off to the baths today LOL its a struggle at times but its good. Keep us uptodate and stay in touch you will meet lots of nice people here. Its good to talk
Take care XXX and a gentle hug for you
Colin

frogmorton

elnafinn wrote:

Aw, bless you dear Toni. You did feel so lost and unhappy, my heart went out to you instantly. Look at you now? We told you things would change/get better for you with time.

Love
Elna x

You did l haven't forgotten ...sure it's your fault l keep doing these smileys too xx

frogmorton

Beebopaloo wrote:

Hey everyone - thanks for the kind words. It seems that you have built a very warm and friendly environment here which is really lovely to see. I cannot explain why but there is something very isolating about having arthritis and sometimes you feel a bit stuck in your own body. So it is very reassuring to not feel so alone.

xxxx

That may well be the worst part of it in some ways the isolation - glad we are helping

Love

Toni xx

dreamdaisy

Hello beebopaloo (did I spell it right?) I love the name! It's lovely to meet you and what a girl you are: brave, resilient, strong and upbeat. I did not begin my arthritis until I was 37 - I thought that was far too early (knowing nothing about arthritis then) now I know I was damned lucky to have gotten so far in life without it.

Arthritis is isolating, you are right on the button there. It causes us to cancel the various bits of life that others can do without thinking, and unless you have a set of good friends and/or understanding family around you it is very easy to become set apart from people. On here, however, everyone knows how tough it can be, how difficult, painful and tiring. We are good at listening, encouraging, empathising and giving the odd kick up the backside if required. It's lovely to meet you and I hope you stay with us. I wish you well. DD (who has PA and OA but her spine is un-affected)

Beebopaloo

Hey guys - thanks so much again for all the lovely messages I have received from people, it truly is very inspiring and encouraging how welcoming everyone has been and to see so many different people and different stories.

I am looking forwards to hearing all your stories and being even more inspired by how brave people clearly are. I will admit DD that I had moment when I thought I was very unlucky to get my condition (I was 20 when the pain started) at my age but I dont think that so much anymore. In fact, somtimes I think I am lucky because I didnt used to appreciate things like I do now - I dont get stressed by little silly things anymore and that is nice.

I deffo agree that sometimes it is lonely but then it also sometimes makes me feel really victorious - which probably makes me sound insane. I enjoy the victories more than I cry for the losses - if that makes any sense.

And you spelt Beebopaloo perfectly - my dad used to say I was random - like a jazz song so he took Beccy and 'scatted' it...

Stay smiling

frogmorton

Beebopaloo wrote:

Hey guys - thanks so much again for all the lovely messages I have received from people,
And you spelt Beebopaloo perfectly - my dad used to say I was random - like a jazz song so he took Beccy and 'scatted' it...

and the next line 'she's my baby' ah bless your Dad

Toni xx

Beebopaloo

Awww that is cute

dreamdaisy

Bee-bop-a-loo-bar,
She's my baby
Bee-bop-a-loo-bar
I don't mean a maybe
Bee-bop-a-loo-bar
Be ma baby tonight
(dee-duddle-de-ar
dee-duddle-de-ar)

(Am I vaguely right on the lyrics? Was it Elvis? Alvin Stardust? Where the hell is Mr DD when I need him? :roll: Oh yes, washing up. :oops: ) DD

stickywicket

I love your attitude of enjoying the victories more than mourning the losses. I guess there are times when the losses do seem overwhelming but...ah...those victories. I still remember coming home from passing my driving test - first time, unlike Mr SW - playing Chopin's Grande Polonaise, and feeling its defiance surging through me. I'd never driven before getting a Motability car, aged about 30, and my first instructor had said I'd never learn to drive. (Admittedly, I'd almost wrapped the car round a tree on my first lesson.) My second instructor was disabled himself and said straight off he could see no reason why I shouldn't be able to drive. So I did.

Keep believing, Beebopaloo, and enjoy those victories.

Beebopaloo

AWWWW DD YESSSS... baby doll!!! Thats so cute...

And big gratz SW - I will tell you a secret but if you tell anyone I will have to kill you. I also passed my driving test on the first attempt BUT I failed the written exam - the one that everyone says is really easy!!! I was 17 and thought I didnt need to read the highway code... that shame has stayed with me forever! hehehe

Do you know probably my biggest victory, which also happens to be the stupidest thing I have ever done. I was so frustrated when I found out the surgery that I needed that I just felt I had to prove that I was still me and that I needed to show myself that I might be down but I wasn't beaten. So.... 6 weeks after my surgery, me and my partner took our road bikes (the one where all your pressure is on your neck!! great idea!) and I rode 50km accross Tuscany and up the dreaded 2000ft ascent to the city of Montepulciano. Then I had a glass of wine. Then I realised I couldn't get back down again. Thinking about it - this story could be why my neck got worse.... lol

Does anyone else have any stories of victories - big or small - I'd love to hear them

B xxx

dreamdaisy

I regard getting to the end of each day with both dignity and temper intact as a victory! I hope you are feeling as OK as you can today. DD