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Dee L

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About Dee L

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  1. Shelley.......that is beautiful....I am sure you miss him very much x
  2. Thank you all for your responses. I will follow up on the links you have provided Jo and Shelley - thank you. Amanda, love your euphemism, it really made me laugh. You are right also about the strength of relationship, this illness has actually brought us closer together (despite the intimate aspect). For years I had been a very independent person never asking for help with anything and when I suddenly became unwell I had no choice but to let others do things for me. After a few months it dawned on me that my husband was actually enjoying looking after me and when we discussed this
  3. Hi all I recently saw a post on another site regarding smear tests being very painful but I haven't seen any posts or literature regarding how Scleroderma affects the 'vagina' on this site so I wanted to share my story. In summary I was diagnosed with Scleroderma in 2008, had a crisis in 2011 which was diagnosed as heart and lung failure resulting in having myocarditis and lung fibrosis, started new treatment regime including cyclophosphamide, rituximab and mycophonolate (which I still take) and I am delighted to say I have not only come through the other side but there has been eviden
  4. Hi Mdduk27 I can't help you by saying I suffered the same complications as your wife but I can relate to her in that my heart and lungs went into failure in 2011 leaving me very poorly. I was sent to a 'Scleroderma' specialist hospital for my treatment and future referrals and they knew exactly how to deal with my problems. I am now happy to say I am very much improved and still receive regular and ongoing treatment and check ups with the London hospital. I am back to work and leading a happy 'Scleroderma' life :) You and your family are not alone, sometimes it is harder for the rel
  5. Hi Jo So pleased that all went well and healing nicely. I am now waiting to see someone at Southampton General Hospital on the 12th November for a pre-op assessment to see if I am suitable for extraction (originally two teeth needing extracting). In the meantime I have now discovered a hole in a tooth on the opposite side and now have three loose teeth on the bottom which I am clinging onto for dear life ha ha. Perhaps I should start looking through the glossy magazines for a super-duper full set of falsies to replace them all at the time of my extraction. I wonder what toast is lik
  6. Thanks everyone for your response. I hadn't got as far as considering dental implants! but thanks for the heads up. Good luck with your extraction next week Jo. Keep us posted as to how it goes. I have now found reference to oral specialists at Guys, Kings & St Thomas' Institute who consult with Rheumatologists so I now have the difficulty of convincing my local government that this is a necessary referral as nobody local is willing to touch my teeth with a bargepole! Take care Dee
  7. Hi all I have systemic sclerosis with heart and lung involvement and am doing extremely well since going into heart and lung failure in June 2011. With great support from my health team, I have now recovered from Myocarditis and my lung function has improved. Long may it continue :emoticons-yes: I now need a couple of teeth extracted and my dentist referred me to a local specialist with a view to him extracting under a general anaesthetic (complications with the size of my mouth - story of my life ha ha). However the anaesthetist has discussed with my local Cardiologist the risks o
  8. Hi Sooty30 Thank you, my visit to the Royal Free was very good. I met Dr Shreiber for the first time. How long has your husband had SSc and lung fibrosis? I would love to hear more about him. I have had SSc since 2008 and the lung fibrosis was discovered June 2011. Since then I have had six pulses of Cyclophosphamide and two courses of rituximab which appears to have had an effect. Since my visit last week they have introduced me to Mycophenolate and the plan is to refer me to Prof. Wells at the Brompton for further tests. I look forward to hearing more from you about your
  9. What a shame Amanda, I hope your appointment went well? Dee
  10. Hi all I am visiting the Royal Free Hampstead on Thursday 26th April (this week) and wondered if anyone else will be there that day and fancies meeting up for coffee? I have systemic scleroderma with pulmonary fibrosis and myocarditis and would love to chat with anyone who has similar or anyone who just likes to chat! If you are interested, pm me. Dee
  11. I last wrote in August last year having spent three and a half weeks in hospital with heart failure and lung fibrosis and I want to up-date you with some very positive news. After leaving St Thomas' Hospital, London I returned home to the Channel Islands and had 6 pulses of Cyclophosphamide followed by a course of Rituximab. I then returned to the Lupus Clinic at St Thomas' for a review only to be told there were concerns about my heart. The following day I saw a Consultant Cardiologist from the Royal Free Hospital who confirmed I had developed Scleroderma-related Myocarditis and my Trop T
  12. Thanks Lizzie for that very sensible advice, I will pop it on my shopping list. I wish we all had the money to go for 'Night Owl's' suggestion! Dee
  13. Hi Amelia I also find silver gloves really help and wear them throughout the summer but you have to have warm hands to start with otherwise I 'hug a mug' of something hot with the gloves on and that is heavenly. I have tried heated gloves in the winter but paid over £100 for them and then found them to be too heavy with the battery pack with very little heat! Good luck in your search. I have been trying to find a heated steering wheel cover without success - anyone got any good ideas for that? Dee
  14. Thank you all for your good wishes. Yes it is sad that so many sufferers are undetected especially as the literature states it should be caught early. I am due to have my third dose of cyclophosphamide tomorrow and am really hoping it will kick in soon (patience!). I will keep you posted. Amanda, as I live in the Channel Islands, private visits to the Royal Free would be very expensive for me and unfortunately our local government won't allow us to choose who we see. I even have to see my 'original' rheumatologist this week because if I refuse to see him, they will pull the plu
  15. As I am sitting at my desk wondering how I got myself into this state, I realise I didn't, it was a combination of my healthcarers and my own lack of confidence to stand up and say "believe me and take me seriously". I want to share this statement with you all and hope that you don't let it get so bad and the story goes....... I was diagnosed with general Scleroderma in November 2008 and not given any specific type (probably because this is dependent on forthcoming symptoms). My many symptoms were treated with Prednisolone and Methotrexate and mostly kept under control with me returning t
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