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About JaneLesley

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  1. Thank you both so very much for your support. I have already popped into the Pity Party and had a good laugh - thank you. My Cousin, who is currently suffering from extreme problems with a different autoimmune disease has suggested that there is probably a gap in the market and we should set up our own 'autoimmune disco' - with lots of gym crash mats to catch us when we fall, plus a couple of strong good looking bouncers to pick us up again. We would need to hold it early in the evening, so we can all get to bed nice and early!!!! Might even start crocheting nice warm disco gloves - oh th
  2. Hi, my name is Jane. I was diagnosed with CREST in 2010, although have had major symptoms since 2000. Last year I was diagnosed with Pulmonary Fibrosis, Pulmonary Hypertension and Diabetes. Metformin and Mycophenolate caused sickness and extreme fatigue / depression and I spent nearly all of last year in bed or on my sofa feeling dreadful. Almost all medication causes gallbladder, liver and / or spleen infections and I have stopped taking all. My hands are like very fat sausages, skin thickening, not fluid. I have been told there is no joint issues, JUST skin thickening. I have extreme
  3. Hi Jean So sorry to hear of your problems. I have no idea if this is of any help to you - I purchased an orthopedic pillow - it is an upside down 'v' shape. I put it on top of my usual three pillows and find I can get very comfortable without any neck problems and am having much better night sleeps that I have had in years. I have had no coughing since I started using this pillow and although I do still get bouts of reflux / hiatus pain - I do think things have improved quite dramatically. The pillows can be purchased quite cheaply and even have bespoke pillowcases. Wishing
  4. Oh Amanda I was going to say that the NHS is obviously better at your side of the Country - one nurse per ulcer - but now I read you have five ulcers -one nurse missing - must be the cut-backs! Seriously I really hope you start to heal very soon. New doctors, new medication and new ulcers - I quite literally would not wish to be in your shoes. You sound like you need a holiday from Scleroderma - I wish I could grant it. Sending lots of healing wishes Jane
  5. Hello, You will all be very pleased to hear that I will not be complaining about the consultant at my local hospital any longer - hurray I hear you cry. We have had a major falling out and he has 'removed' me from his list. I will now be looked after totally by the Bath Hospital where I know people talk sense! Shared treatment sounded a good idea but I think Bath thought my local consultant was looking after me and my local consultant ... well I guess he just didn't think at all!! This is it in a nutshell: Phone consultant as concerned about condition - make an appointm
  6. Hi, I am in need of some help please - I was diognosed in 2010 after 9 years of hand and feet swelling, etc, etc, etc, but although my care is being shared by two different hospitals, I believe this is causing confusion and although I am requesting treatment - I am not receiving any! Is anyone able to tell me what these symptoms might be if they are not Limited Sclerosis? Face - the skin across my cheeks is pulled very tight (I moisturise several times daily to make it more comfortable), the only wrinkles on my face are a few on my upper lip (I am about to turn 50). My lips are n
  7. Many thanks for your kind comments. I have golfers elbows because I have had so much difficulty using my hands that I have been over compensating by using muscles higher up around my elbows. Oh and yes I have also got knee issues too because I am walking badly - toes and feet are painful - not sure this is called housemaids knee but the physio is going to have a go at that area as well - think they are going to have their work cut out here!! I can't wait to tell my husband how much more we have saved by not having a housemaid - although I have to confess cleaning in my house at the
  8. Hi, Went to see my fourth different Rheumatologist in a year and, like every visit, came out with another set of long names to add to my list of symptoms / complaints. This time I have got 'Golfers Elbows' (yes plural). Having never played golf - just think how much money I have saved on not buying golf clubs, and not paying green fees, memberships etc etc - yes back to that feeling lucky again! I am going to see a physio in the hope of some help but am worried I may be expected to use more spoons that I have at the moment - just getting to and from the hospital is taxing.
  9. I am so sorry you started your day badly but hopefully a good rest has done you the world of good - very good warning about day time tv though - beware - did that a couple of weeks ago - wept through every movie I could find - went back to work with dreadful swollen eyes - everyone told me how awful I looked - didn't have the nerve to say it was just bad movies and not my illness! Better luck tomorrow morning. Best wishes Jane
  10. Jeannie, I have unfortunately also been out of action for a couple of weeks so missed your initial post - so a bit belated but I really hope you are feeling so very much better. My mum gave me a silver spoon wind chime as a gift - I love its sound - haven't noticed them working as 'spare spoons' yet but who knows! Tawanda - I had abdominal migraine from the age of 4 - stress of school started it and it occurred regularly on a Sunday evening - triggered nerves for return to school on a Monday. No great comfort to you or your daughter at the moment but I did eventually grow out
  11. Jean, I am so sorry to hear that you are suffering so much and not getting the deserved sympathy and attention you really do need. I hope you will keep posting - everyone here is really kind and I know when things get bad there is always someone with a useful tip or some kind words just when you need it the most. I have just spent a further two days off work feeling awful - painful feet, hands and neuralgia to go with it. Guess that is the price for being lucky isn't it!! Somehow I think I would probably have preferred to have won the lottery though! Take care - and keep
  12. I cannot tell you how grateful I am for this forum and the comfort I receive from it. I am currently suffering from very swollen tight fingers with lots of pitting - fingers are sore, swollen wrists and forearms. My face is stretched very tightly and slightly puffy making my left eye in particular very uncomfortable. My ankles and feet are swollen. My toes hurt. Everything is aching and on Sunday it took me all day to get washed and dressed. I felt so exhausted the smallest task became impossible. I attended my weekly hand clinic at hospital yesterday and after my trea
  13. JudyT Thank you for posting the item about making wheat bags - I am sitting cuddled up today with my purchased hot bag as we speak. Am going to make some nice new bags over the weekend and can leave them at work, as well as my parents house - just in case I need one. Many thanks Jane
  14. Hi, Having read so many stories about inappropriate or unhelpful comments made by some staff in the medical profession, I thought I would let you know about some help that came my way on Sunday. I am experiencing extreme problems with my hands at the moment and whilst paying for an item spotted reasonably priced wheat bags for sale. I had the most wonderful conversation with the gentleman behind the counter, he showed me some different shaped bags available, he explained in detail which parts of the body are best suited to different styles. He explained all about the health bene
  15. Part of my job is to shop once a week at the local supermarket, purchasing bosses lunch, toilet rolls, gallons of milk etc. Throughout the summer I wore my gloves outdoors constantly, my Raynaud's appears to be worse in the summer!! Therefore I wore my gloves into the supermarket every week. Sometimes I got an odd look but no one ever made a comment. We arrive into October and I am now feeling more comfortable, gloves and scarves start appearing, I am no longer the odd one out. The Friday before Halloween I shopped as usual and as usual wore my gloves. The assistant working on t
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