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About Nene

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  1. Thanks for your encouraging post Shelley. I entirely agree with you. When I was first diagnosed I worried a lot about when the next symptom might appear. After a few months (and no new symptoms) I decided I wasn't going to let scleroderma stop me living my life. Since then I have completely retrained and have a whole new career. Yes, sometimes I get so very tired and yes, my aches and pains sometimes get me down but this is the only life I'm going to have and I will make the most of it whilst my health allows. As I have read in some of Amanda's posts, there is life after a diagnosis of scleroderma ...... maybe not the one we intended but life is precious regardless!
  2. Hi Kitty After years of stability my scleroderma went into a more active phase last summer and I can empathise with how you are feeling. A wise lady once told me that there is no shame in grieving for the life we thought we were going to have and I know I have had what I call 'well person envy' on more than one occasion. On the whole though I know that the good things about my life far outweigh the bad and despite my fears when first diagnosed I am still here :D Hope things improve for you really soon.
  3. Hi Winnie Your school seem to be understanding which is great. I work in a similar teaching environment as you. Please don't underestimate how much toll it can take on your health. I think we get used to the stresses of working with daily behavioural challenges and forget how intense it actually is! I also know how incredibly rewarding it can be and, like you, would not give up working without a fight! I guess that's why teaching is such a special vocation. Take care
  4. Nene

    Small Mouth

    Yes, my dental problems are due to scleroderma. I have taken care of my teeth (no fillings!) so it seems particularly cruel. Still, some people see a glass as half full, some as half empty but with scleroderma I am grateful to just have a glass! The consultant I saw was happy for the consultation to be on the NHS but would not guarantee that treatment would be. I think it probably depends what needs to be done. I'm seeing my dentist again in a couple of weeks so will keep you posted.
  5. Nene

    Small Mouth

    I am experiencing problems with my teeth and had an appointment at the Eastman last month. I was referred by my dentist for an inital consultation on the NHS . Future treatment will probably need to be private. I received really good advice so would certainly recommend at least an initial consultation if your dentist thinks it necessary. Keep smiling!
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