Newbie

Newbie

I have had RA for about 15 years and osteo for 30 and another form of it from age 11.

I have both or one in my hands back feet ankles knee both hips ,and my neck and have now spinal stenosis due to spurs growng n my spine , but not able to operate .

Today is my 56 birthday and mentally i feel about 30, and some say 3 :) .

I have had both hips repalced and the first one has dislocated twice and at risk of doing it again ,but will not change it . this is due to other health issues that make me high risk, I had cancer treatment before first hip and the chemo caused me to have major P E .This delayed op for 18 months . year later after second hip had anothe multi PE so all good fun . I have lived and loved and brought up my children and worked .But now can not work kids are grown and gone thier ways . I try to be "normal " walk without my stick as long as not oo far , ie to the car , drive as little as poss as it painful and leg swells and painful.

My eldest is actully embarressed by the fact have been so ill . And keep her and my only grandchildren distant from me . But influanced by her new partner to a great degree .

Feel something wrong if i have a day that pain relif work and not in agony, but it also like it if do not move but well that last all of 3/4 mins .

So i feel we can only rely on and help ourselves as much as possible .

But I try to enjoy my life with my few friends i go out when i can but am ok at home alone but some still find it hard to understand ,why one day can walk to the shop but can not carry anything back , but another day. can not move from the chair , but the chair day is a result of the first .

But must smile and enjoy what we can , :))) xxxx

10 Replies

oldestnewest
  • Hi Pottypam

    I am also a newbie and left a post same time as you. It is great to hear you still so positive after all that you have been through. You are inspirational and very brave. I feel very sad that you daughter is so distant and you are not able to enjoy your grandchildren, Family are so important and you have done amazing working and bringing up your family all those years whilst suffering your troubles. I wish you a great day and hope we can have many more chats to keep each other positive and happy.

    welcome.

    Lisa

  • Hi Lisa,

    THank you for your message , though not sure am brave , more stubborn lol, will not let this thing get me to give up . Though have to admit there are days i feel like just staying in bed forever , But watching the same DVD for that long drives me out . I have a couple of really good friends who have been with through the lats few years and taken me out and cheered me up . In fact one coming ot take me out today for lunch .

    My eldest well she never saw me at my worst she had left home by then , my younger two have been my friends and support and have never wanted them to be my carers so alway pushed them to do what they want and i will help when i can , But i really do miss my grandchildren very much .

    Hope we can chat and suppot each other , it will be fun ,xxx Take care ...

  • Hi Pam,

    Well you look fab for 56! I am 50. Happy birthday to you. We a great bunch on here. Lots of tips, mixture of Ra & life I'd say.

    You sure have been thru a lot! Gosh I'm having an ankle operation tmoro and really worried about it all. Think gen anaesth so worrying. You have had so much more and are shining thru well done.

    Talk again.

    Kindest regards, gina

  • Hi

    I agree, you look great for 56 (happy Birthday)

    I have had JCA since i was 13 (am 32 now) and life can give me those 'not want to ever get up' days you were talking about. But also can give you such amazing times too ,i just got married in the south of france to the man of my dreams and i only met him coz i have JCA otherwise our paths probably wouldn't have crossed! - he is arthritis free but i met him on a disabled modeling assignment.

    I have 2 hip replacements (so far dislocation free), 2 knee replacements, left wrist fusion, both feet fused and am about to have 2 more ankle ops (gina who is your surgeon??), am really nervous about them, you would have thought i'd be used to them now but to me they get more scarey ;-( i will be having them under epidural as GA's scare me now.

    Ella x

  • Snap pottypam,i'm 56yrs as well, though these days feel 96. I hope you have a lovely birthday. Are your family taking you out for a meal, thats what we do on birthdays and anniversarys. 1955 was a good year wasn't it. People say nwe are brave, thers nothing brave about it,its what happened and we have to get on with it. I find i get very angry with life as i have to rely on other people to take me out. I don't like to ask for help,too proud mesthink. I have a knee replacement and i still don't think its right,but never mind. you have a lovely birthday and have a drink for me.

    Sylvia. xx

  • Hi Sylvi

    Thank you ,had luch with my friend and now waiting for my daughter and son to take me out for a meal , Have invited my eldest but not sure she come . but did get a beautifull lot of flowers ,(love flowers ).from her and my grand children .

    I think 1955 a very good year lol, I am reasonably happy person and try not let it get me down too much , and having friends and family round make me happy and face it all but when alone i may just think what the hell . But i do try to be normal, which i manage if i stand /sit still and dont move lol.

    My second hip dislocation happen as result of an accident and it feels most of time now as if it never been replaced . Driving a nightmare , but funny to see me trying to get in the car . .But not getting in the car and driving is not an option if i want my sanity .

    Glass of wine ok ?????

    Potty pam x

  • Hi, you have a glass of wine and think of me. I agree about being alone and you tend to brood, i know i do and thats why i'm depressed as well. I have had to give my car up as i'm not allowed to drive yet. Had knee replaced 2yrs ago and it is still not right,had ligaments stitched back last year,but feel like my knee wobbles, and it is very swollen thats why i can't drive. Do you have dla? if so you could get a car that would be adapted to your needs.

    Enjoy the rest of your day.

    Sylvia. xxx

  • Hi Ella,

    I understand about the GA , But i am not allowed them and epidurals cannot get a needle in my spine as the discs so close together and it so badly collapesed and with the spurs just not possible , have been for years ..Hence why they can not operate as because of the P Es my lungs make it far too risky , too. so no more ops now unless it life threatening. .

    Try not to worry about your op,s and hope they go well and help.

    I so pleased for you that you have found someone who loves you and the issues Congratulations.and every happiness.

    At my age I am not going to tempt fate after my ex told me that no one else have me in my state , lol and that was before my hips went .!!!! .But am happy alone ,ish . but would be nice sometimes to have someone to help me . but as i have not it makes me more determind to keep going and pretend to be normal, what ever that is :)))

    Pottypam x

  • happy birthday babe

    Life can be a bit of bitch (I know as I hate my hands at the moment). I think you've done well, so keep up the good work.

    Sci

  • Happy birthday too.. welcome.. you have been throug the mill with your health x

You may also like...