Hi, have had loads of hospital appts, ( another heart scan, occupational therapist, rheumatology consultant, and oral medicine dept ) and rheumatology physiotherapist and lung function test to come!! Results, wrist splints to wear when I am doing anything like hovering, gardening etc, steroid injection and xrays of hands and feet, oh and a fizzy steroid tablet when I get mouth ulcers!!! Wow am I being spoilt or what, this condition of ours never ceases to surprise. Don't you just wish you had a common cold? It certainly makes life interesting, and why does some of the medication have practically every letter in the alphabet. I keep catching my reflection in the mirror, who is that woman looking back? Wrinkles round my ever decreasing mouth, thinning hair and eyebrows. Thank goodness for this forum, everyone here knows what I mean! Thank goodness for my grand daughters (4). I have a big birthday this month 60!! I live on my own, so I am hoping something nice happens!! A surprise perhaps. Well I have been rambling long enough, take care everyone.

11 Replies

  • Bless you . You are right about never ending surprises but you seem to have a sense of humour which is a necessity with this awful illness. I hope your grand daughters keep you busy. Young people are a great tonic, I used to be a Secondary school teacher and loved their energy and enthusiasm.

    I hope you have a lovely birthday when it arrives and you never know something nice just may happen. I do hope so. Take care and good luck with the wrist splints.

    Lynn X X

  • So true!

    Once the steroids leech your bone density, there will be scans for that too!

    You do meet a lot of lovely folk along the way though....

  • Thank you for your reply, and yes we have to support each other.

  • Happy Birthday friend.

  • Thank you, will let you know how it goes.

  • Try not to be too downhearted. Although I do have days when I wish it would all go away I try to stay positive. I'm 71 years old and still work two days a week in a Junior school. The children lift my spirits as do my three grandchildren. I'm at a local music festival with my 17 year old grandson and his friends at the moment. (needed someone over 18 to accompany them) My 15 year old grandson often massages my hands to make them work properly he says and my 10 year old grandaughter keeps me on my toes. Ok, I probably suffer alot for some of the things I do but I am determined this disease will not beat me and stop me from enjoying life.

    Take comfort in that there are people out there who know exactly how you feel. Enjoy your lovely grandaughters and have a wonderful birthday and do something amazing!!

  • Hi, thanks for your reply. Wow, I admire your attitude and your grand children must love you lots, enjoy the music and the massages!!!

  • I can relate to your hospital visits, over the last four weeks I have travelled to the Royal Free in London twice (I have been participating in a drug trial). All that now done I saw my Rueamatologist at my local hospital yesterday, and I have come away with a whole list of up and coming tests that he now wants me to have!!!! Also on top of that I have to go to Bath hospital for my routine PH appointment, and they are putting me on a pulmonary rehab course, goodness knows how I will fit it all in. But one thing we will never become bored, something new always pops up!!! I am in my late sixties but am determined to keep going, and yes you are right grand daughters are a joy, on my last visit to the Royal Free I stayed in London for a few days with ( they live there) age 11 and 4, they certainly give me a huge lift, which keeps me going. Next event the 11 year old will be coming to stay for a week, with her Somerset Grandma & Grandad as she calls us. I do hope you have a great 60th, I am sure you will have a nice surprise. Take care Jaynexx

  • Thanks for your lovely reply. You are right this condition certainly keeps us on our toes, that's if we can get up on our toes! Taking my grand daughter to the cinema this afternoon (she's my second g/daughter 10 yrs old and a joy to be with) I have 4, her sister is 13, yes she is the typical teenager, their cousins are 5 and 2, by my eldest daughter, my youngest daughter is the mother to the older girls. Take care xxx

  • Hiya, I found out last year that I have Scleroderma/ Raynauds. I had been feeling unwell, tired etc for 3years. When I went to see a Rheumatology consultant I was amazed to hear that all the symptoms I had were linked! I've had many tests this year and take Hydroxychloroquine twice a day. All the hospital appts and tests are very overwhelming but I'm so grateful to finally know what's going on. Hope you have/had a lovely Birthday!

  • Hi Penny, thank you for your e-mail. Yes it is amazing how scleroderma developes, and how many symptoms it has. It can get overwhelming as regards to appts etc but it goes with the territory that is scleroderma. Some days are better than others so make the most of them. Take care,

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