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Joelf

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Posts posted by Joelf

  1. Hi Annie

     

    How nice it was to read your post and I'm so pleased that you're posting more. We've had some lovely chats in the Wednesday chatroom and I would like to participate and speak to you on a Sunday but because of the time difference I'd have to be an insomniac!!! :lol: :lol:

     

    I agree with you that this is a fantastic and friendly forum and I am very thankful for the support I've received from it. Whatever did I do with myself before I joined?!! ;) :VeryHappy:

  2. Hi Amanda

     

    Glad to hear you've at last got your appointment for your pacemaker operation; hopefully the anti-biotics have helped and your respiratory infection is under control.

     

    What a shame about your mother's cat; still it would be no good if your cat and her's spend their time trying to kill each other; it doesn't make for a very serene household!!! ;) :lol:

     

    Here's wishing your mum a very speedy recovery. :)

  3. Hallo Ann

     

    I am so very sorry to read your post; it's difficult enough to come to terms with your illness, let alone without the support of your husband. :(

     

    I do hope you have other supportive members of your family & friends to help you through this very difficult time.

     

    I'm thinking of you & sending :emoticon-hug: :emoticon-hug:

  4. Hi Helen

     

    I've recently become the joint local contact for the West Sussex group of the Scleroderma Society and we had our first meet last June. I was a little bit worried that nobody would come but it was actually very successful with an excellent attendance (one member came with her entire family including great grandmother and seven week old baby!!! :VeryHappy: )

     

    When I was first diagnosed I was very curious to meet other people with the disease as it is so unusual and the support group has been a great help. I've also met some really lovely people through it. :VeryHappy:

  5. We're actually debating whether to get a new fridge/freezer. :jump-for-joy: Mine is really on it's way out ( it's leaking a bit although it does still work and I must have had it at least 10 years, if not longer) and it probably deserves a decent burial. :lol: The fridge part is too small and trying to get everything into it is a bit of a nightmare. We've seen one we like so I think I'll probably justify it to myself and get it!! ;) ( I really must get out a bit more; how sad to get excited over a fridge/freezer!!! :rolleyes: :lol: )

     

    We might also have a weeks holiday in the West Country of England sometime during the Autumn. :)

  6. Hi Helen

     

    I also have had innumerable lung function tests and just about every lung test known to man, but have never had a lung clearance test (it must be the only lung test I haven't had!!! ;) )

     

    However a friend of mine had one for a condition completely unrelated to Sclero and suffered no ill effects afterward. :)

  7. Hi Andrew,

    I'm so pleased to hear that your wife's treatment has helped her and that she has stabilised and is doing well. :happy-day:

     

    Sorry to hear she had a bad reaction to one of the infusions; coincidentally I was also worse on the fifth one as well (although I was only throwing up and didn't have to be re-hydrated ;) )

     

    Hopefully now she'll continue to improve!! :)

  8. Hi Vanessa

     

    As far as I understand, Lansoprazole can be prescribed as a preventative. Thankfully I don't have oesophagal involvement either ( ditto touch wood!! ;) ) but I was also prescribed it as a precaution as I do get a little bloating and discomfort after meals.... I think that's probably the medication I take though, not the Sclero. I've only actually used it a couple of times in the last year.

     

    As there's osteoporosis in my family and I've got osteopenia in my hips I take Alendronic Acid, a calcium and vitamin supplement as well to counteract that!! :wacko:

  9. At least it sounds like you had a decent sleep at last, Jeannie; even if it was throughout the morning and not actually at night!! :D

     

    I also find alcohol and coffee upset my sleep patterns; even before Sclero I've always been disgustingly bright and breezy in the mornings but not much of a one for late nights (I'm talking 9pm here!! ;))

     

    I find it particularly infuriating that I tend to fall asleep in front of my favourite television programmes (like 'Midsomer Murders'; I've lost count of the number of times I've missed the end!! :rolleyes: ) and yet I can go up to bed and be tossing and turning, unable to sleep!! :angry:

  10. Hi Jane

     

    Welcome to this friendly and informative forum from another Systemic Limited Sclero UK sufferer. :bye:

     

    I was also very relieved when the cause of my bizarre symptoms were explained to me, although thankfully it didn't take 9 years for my consultant to reach a diagnosis!! :blink: I am also a patient at The Royal Free and The Royal Brompton Hospitals, where I've received really excellent treatment. :VeryHappy: My husband and friends have been very supportive like yours, although my friends are heartily sick of the subject of Scleroderma now as I'm afraid I've tended to bore them witless with it!!! :rolleyes:

     

    Jeannie has told you about the Wednesday chat room; it's at 7pm UK time and I usually forego watching 'Emmerdale' for the pleasure of joining in. ;)

     

    Hope to hear from you soon. :)

  11. Hi Lisa

     

    Good news about your surgery; what a relief it will be to get it over and done with!! :)

     

    I had a local anesthetic for both my carpal tunnel operations. The good news was that it was completely painless; the bad news was that I couldn't actually see anything at all due to the angle at which my hand was positioned. Also during the second operation the surgeon (a lovely guy with a great sense of humour!! ;) ) insisted on talking to me throughout the procedure, which was fine except due to his mask I couldn't actually hear what he was saying, so I just kept saying "Oh,really??" and "Fancy that!!" at regular intervals (I think he was talking about his daughter's wedding , but I wouldn't swear to it!!! :blink: :lol: )

     

    I do hope you have an equally successful and pain free surgery as I did!! :)

  12. Hi Bobby

     

    Nice to hear from you again; I'm so sorry that you've had to retire on health grounds but it's good to hear that your employer was very supportive. :emoticons-yes:

     

    As far as claiming benefits goes, remember that you are entitled to it, having paid in all your working life!! B)

     

    My husband retires within the next couple of years & I intend for him to claim everything to which he's entitled (even the free bus pass, although we're not actually on any bus routes here & don't get any buses going past, but still...........!! :blink: ;) :lol: )

  13. Hi All

     

    Now this is a very interesting thread because I too have had several bad bouts of Raynaud's during the summer months. In the UK, for a change, we have actually had a half decent summer this year and I would have expected the white, painful fingers to have been much better, but I have still had the problem. One of the worst times is in the supermarket due to the air conditioning; I don't really like to wear gloves, especially picking out the fruit and vegetables and by the time I get to the checkout I can hardly feel my fingers at all and find it hard to get out my purse etc. to pay for my groceries!! :unsure:

     

    Another rather bizarre thing I've found with Raynaud's is that it always seems to be bad when I've just eaten my breakfast?!! :blink: I wondered if it might be because my blood supply is being primarily diverted to my digestion and allowing the extremities (fingers ) to get cold? Does anyone else find the same or is it me being a little peculiar? (more so than normal, that is!!! ;) :lol: )

  14. Hello Sandy

     

    Sorry, I meant to reply before, but have been so selfishly absorbed with myself & my shingles I haven't got around to it!! :rolleyes: Thanks very much for your kind wishes on my other thread. :wub:

     

    I have lung involvement & at it's worst my TLCO was 48%. I certainly don't think that Pulmonary Fibrosis is a foregone conclusion & you should certainly have all the tests that Amanda mentioned, which I did.

     

    It's a good thing that they are keeping an eye on you, although in my case they whizzed me through & onto the treatment a bit quick as they felt that the 'fibrosing organising pneumonia' was progressing quite fast. As it was caught early a lot of the 'ground glass' in my lungs turned out to be inflammation rather than established scar tissue so the Cyclophosphamide treatment which Amanda mentions was very successful. :VeryHappy:

     

    Sorry I can't advise you about the double vision but it's certainly worth getting it checked out.

  15. Hi All

     

    Thanks so much for the kind messages. :wub:

     

    Yesterday I was at the "death-would-be-welcome" stage but today the flu-like symptoms seem to have abated a bit and I think I shall probably live....(but I won't enjoy it!!! :emoticon-bang-head: :lol: )

     

    The rash looks most unsightly so I don't think I'm going to be wearing my bikini top yet awhile!!! ;) :lol:

  16. Hi All

     

    Well, I was getting bored with the improvement in my lungs and feeling better, so I decided to come out in sympathy with Sandy D. and join the Shingles Club!! :( I have the most picturesque rash just under my bust so can't wear a bra which makes me even more flat chested than normal. :o

     

    I thought at first that it was a sweat rash; no such luck!!! :angry: I went to see my doctor who was an absolute star and she contacted The Brompton to find out if I needed to go on IV anti viral drugs which would have necessitated an overnight hospital stay. Thankfully it can be treated orally and so I've got another lot of drugs to take (as if I don't take enough already!! ;) )

     

    Although I don't do self pity, I'm actually feeling rather sorry for myself.:crying: The rash is quite painful and unsightly but hey, at least I've got another thing I can bore my friends with (they've all heard everything there is to hear about Scleroderma!! :rolleyes: )

     

    There's always a bright side (said through gritted teeth!! ;) :lol: )

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