Hello again

Hi everyone

I have not been on for a while but I have been busy

On the 23rd March my daughter had her knee reconstruction operation. She ended up with 4 pins in her right knee and a replacement knee cap. Her ligament was replaced with the hamstring from the back of her knee. She was in hospitial for 4 days and now has to wear a brace from her hip to her ankle all the time.

I have never seen a girl in so much pain!! As a mom it hurt me so much. She has also had the blood test for the rhumatoid factor and she has been told she has it. I now understand the guilt my mom feels for passing it onto me. She is only 18 my beautiful kind hearted daughter and she does so much for me when I am in pain.

I have knicknamed us tweedle dum and tweele dee. It is hilarious in the morning and the evening when we have to take off her brace to get her dressed. My sausage fingers are not the best tool to handle all the velcro and becks can't bend to help me. Washing is fun as well as we only have a bath. I have found interesting uses for bin bags!!!!

She has managed to go back to college with me doing all the driving.

Work has been it's usral helpful self but this time I have a lot of understanding. Shame they are not so understanding with me. I have now got to go to Teeside for 4 days dispite the fact I have told them I cannot drive all that way and I am the only carer in my family. Oh if only I could win the lottery

My husband - well good news there. He has been selected for the new drugs for MS Suffers. He is going to be medically retired from work and his rehab nurse is going to find him some more sutable work. I feel like there is a little chink of light at the end of the tunnel.

ME well I am exhaused - the Cimzia is controlling the swellings but not the joint pain. I am going to go back to my nurse on the 26th oif this month to discuss.

All in all things are jogging along apart from me fighting the Department of works and pensions on the EMS and DLA for my husband.

I have been logging on from timne to time to see how you all are and my heart goes out to you all

I promise to logg on a little bit more now things are settling down

Love to you all xxxx

12 Replies

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  • Hi Susanh, I don't know about 'my heart goes out to you all' .......... mine is sent to you, what a load you have to cope with.

    Really sorry about all of your problems, if I could wave a magic wand to improve your lot I would definitely wave it over you and yours.

    Life can be so unfair.

    Judi xxxx

  • Oh yes it can but you never have a burden to hard to carry

    My mother in law brought me a card with the poem foot prints in the sand

    I have it in my kitchen on the fridge

    I would love a fairy god mother but I will settle for good friends and family - they mean the world

    take care xxxx

  • Susan, you are having it all in threes aren't you. My heart goes out to you. You worry about your family and blog us when your able.

    I'm sending you cyber hugs and kisses you need them my friend. Just know we on here will always be here when you need us.

    Love sylvi. xx

  • thank you so much I had word from the council today we can move to a ground floor flat yessssss

    that chink of light is getting bigger

    xxxxxxx

  • Snap to Sylvi and Judi - take care and stay as strong as you are able to you wonder woman! TTx

  • Wonder woman I have never been called that bfore. I think the costume is beyond my body now but oh what fun trying to get into - my husband had such a smile on his face when I told him

    xxxxx

  • Hi, what a few months eh!! I'm glad the op went well I was wondering how she was. I know as i said before I would rather have the pain than the kids have it. And a day in hospital feels like a year!

    I suspect she could be a bit fed up trying to get mobilized as well bless her. But at least its done so now she just has to get better!!!

    I'm just going through the same as your hubby in that i'm being medically retired on the 13th, but hey at least i'll get a chance to get fitter.

    So hope you too have a good consultation at the end of the month cos if you fall apart the whole lot will be even harder wont it!

    Advice re DLA if you havent sent it in, go to CAB, i thought at first they werent helpful, but I took the DLA form this morning and he helped me with completion and 1 and a half hours later and about 4 days of work from me it got sent this morning. Phew!!!! With everything photocopied as they will ask for it again in a few years apparently!!! It feels very negative saying what you cant do, and you think ye i can do that and then the guy said "really, well how do you get out of the chair" and i realised actually it is all difficult, so goodluck and blog soon.Love to the family

    Axx

  • thank you it took me 2 weeks to get darrons DLA form completed by his nurse and all the photocopying

    I am on DLA and it scares me as my husband was my carer and he can no longer care for me. My DLA pays for my car which I can not do with out.

    I am due for review at the end of the year so I will have to go through it all again

    Keep fighting you are entitled to it. Have you got your nurse helping you with the retirement?? Darrons re hab nurse is being fantastic. We have to got sit down and write a list of skills to help him get another position.

    Keep well and warm

    xxxxxx

  • I have been really lucky and my occupational heatlh doctor is brilliant and she keeps in touch with the rheumies and they then tell my boss. So far i have been lucky with all the help and in the end it seems after a year they cant keep my job open and retirement is the way to go, and get fit but will try to keep options open at the final meeting next week. Axx

  • I wish I could deal with OT at work in the same way - so I have decided to tackle it with my rhummie nurse instead

    You take care take it as a beginning with the road ahead bright on a new track

    sue xx

  • Susan, I was so glad to see your name on your blog, I have thought of you, dealing with 3X's the lot as the rest of us. Glad your daughter got through her op OK, she will likely be just fine once she's through the rehab part. I can only imagine the trials between you and your hubby, on a daily basis, but sounds like you are settled more.

    It does sound like things are looking up, moving to a one floor flat will be a tremendous difference! You be sure to take care of you too. Take breaks often, sit down put your feet up, relax...if only for 10-20 mins, every couple hours, or whenever you feel the need to sit, SIT! Hope all goes well with your meeting too. Love, Loretxxx

  • Oh yes things are getting better slowly

    Will keep you posted xxx

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