jaxs

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About jaxs

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  1. Hi, Sorry to start this discussion but I'm very worried about the effect swine flu would have on me. I have had mild symptoms for a few days now, not a sore throat but everything else. I'm getting pains in my chest more than normally. I know people will say go to the doctors but I have no faith in them, and I'm always scared in case they don't take me seriously. I'm sorry to have to bring this subject up but it is very real and happening. I live in the U.K. Thanks for taking the time to read. Hugs, Jaxs
  2. Thank you for all the advice I haven't been checked for anything at the moment, I'm just chilled with pain killers but making an appointment with my doctor tomorrow, I'll keep you updated. Mind you I do have some relief with the painkillers he's prescribed -- I do hate taking tables but I feel I need them at the moment. jaxsxx
  3. i have low rate dla, but had to fight for that , i did apply for full dla but got refused they sent out a doctor to my house and he didn't see my suffering , i dont even think he knew what sclerdorma is ,he wrote a lot of things down , and looked down his specs at me , its very annoying that we have to fight what we are intitled to, we have this condition not by choice, and to suffer as we do , it really gets to me as I know people who get dla for being alchol dependent yet they choose to drink ...we dont choose to be ill but were not intitled to the benifit we rightly deserve jaxsxx
  4. At the moment I'm in a lot of pain just got up 2 weeks ago and couldn't walk properly; my doctor seems to think I've strained my back, how I don't know, but now I'm also getting a lot of pains down under my stomach. I've been to the doctors twice and each time got pain killers, its getting worse and I'm barely being able to walk. I'm in a lot of pain, my legs are numb to my toes and 2 nights ago I woke up and it felt like I was in labour, the pains were that bad. The doctor seems to think now my womb and ovaries have swelled up causing that pain. I'm in such a mess and trying to get it sorted out. He said just to take the pain killers and that would help, but I'm just feeling worse -- could this be part of this illness? I have systemic sclerosis, Raynaud's and rheumatoid arthritis, I'm not on meds for that but on meds for reflux, my doctor at the hospital doesn't want to see me until December. I still feel I'm not being listened too I never complain about the pain and most of the time I just get on with it but at the moment I feel so frustrated..... :unsure: its getting me down and I don't know what else to do as I've been to doctors...i feel like I'm in a right mess. jaxs
  5. The specialist is studying scleroderma and is one of the best in the hospital I go to. She has always been okay with me and maybe because she had clinic all day I was one of the last and she just wanted to get home, as we all did. But in the past she recommended I put in for DLA (Disability Living Allowance) which I did and was refused so it went to appeal. At the end of the appeal time it was still on her desk and she was away to Amsterdam on holiday. So it looks like her secretary wrote a short message saying I had no lung involvement, as I had to keep phoning asking for them to fill in the form. As you only have a short time to appeal, I have a letter from another doctor stating I do have lung involvement, so I thought maybe she was right because it was a few years ago when I was first diagnosed. I hate complaining and feel a moaner if I say anything. I find it difficult to deal with at times as well as looking after my 14 year old son who is on medication and special needs. At times, I do think scleroderma takes over my life and stops me doing the things I used to. Even though I'm a fighter it gets the best of me at times. Oh well, maybe writing a letter will help. And thanks for all the suggestions and thanks for your kind words and taking time to read. Warm (((((hugs)))))) jaxsxx
  6. I went to see the specialist at hospital on Thursday last week. I feel it was a total waste of time. First of all I had to get the public transport as my car needs a new clutch. It took me 5 hours to and from hospital. It was so cold and I felt ill when I finally got home. Seeing the doctor she asked how I was. I started to explain about how I'd been in bed for months feeling ill and unable to do things even simple things. My Raynaud's is getting worse and now after an attack my fingers are turning black and very painful. I have a swollen ankle which is very sore and sometimes can't put pressure on to it ,and my left wrist is so sore and any pressure feels like it will break but my right hand is shrinking ;) and my lips have shrunk a lot in just weeks. I'm in a lot of pain at times, in my legs and even chest pain ,and my breathing is worse. All the time I was saying this she was on her computer and writing at the same time. I felt she wasn't listening. It was 4 in the afternoon so maybe she just wanted to get home. I felt I was in the way, even my daughter was shocked at the way the doctor was. She told me to come back in 6 months time. I walked out that room feeling very disappointed. I'm on medications for reflux and nothing else. I feel so let down and feel because it's my body, my health, my life she should be helping more. Am I making a big deal or was she missing the point? I've only got one life and wish to live it the best I can. Hugs, jaxsxxxxx
  7. I can't wear gold just silver , I can't wear a watch as everyone I ever have worn stops on my wrist never to work again. I've always been wierd, hahaha jaxsx
  8. hi sherry, i too suffer a lot of aches and pains and I sleep more than I should coz im always lethargic ,so ill back ya 100% hugs jaxsx
  9. hmm thanks , It's interesting to do that and a good idea. I'm right handed and that's the one I use most. And, it's more curled also, as well as puffy and tighter than my left. I have Raynaud's and it's worse in my right hand more than my left. I've never given it much thought really, but now its giving me something to think about. Thanks and hugs from jaxsx
  10. I know this sounds silly, but my right hand is shrinking. :o I thought at first I was imagining it but its true: my fingers are getting very stubby and sausage-like. ;) It doesn't look like my hand any more. I suppose this is normal with this condition but a shock when you notice it. Just thought I'd share that. :rolleyes: Hugs, jaxsx
  11. wow...I'm well impressed by all you guys, :rolleyes: I've read through the posts and thought about what I'd like to say; at first I was thinking I've done nothing like you guys, but had a very hectic life. At 16 I left school and become an assistant in a cafe, got married at 18 had 2 kids then decided to go to college to become a deaf welfare social worker. I was told that I wouldn't make it -- silly me, I listened and gave up. (I lacked a lot of confidence,) I passed all my stages I needed, then I went on to have another 3 children. By then I was a single parent to 5 kids, one with ADHD, so I become his carer. I fought the system for 12 years to get it recognised and eventually I won. ;) I worked in the blind society, I also worked with terminally ill people who were deaf and blind, I worked for a place of worship visiting deaf people in homes and hospital. I worked for a spell in a deaf school as a domestic helper for the teacher and after doing that I worked in domestic violence signing for deaf women, and also support in a group for women in or had been in domestic violence, all voluntary. I cared for my mum who died of cancer and dad before he died, then I was dignosed with systemic sclerosis. I am now carer for my younger son who lost all his hair and has now been diagnosed with anxiety and depression, because of the bullying he has suffered. I still care for my son with ADHD, but it's much better theses days, so to say I've done nothing is an understatement, hahaha, so my job now is a full time carer, ;) when they're not caring for me I care for them. Hope I haven't bored you guys too much but I am being honest, hahah warm hugs to you all jaxsxxxx
  12. massive big hugs to ((((((susie))))))) hope all goes well jaxsxxxxx
  13. Hi Robin, I too find it so hard to deal with at times. I've been dignosed 3 years in July. I have limited systemic sclorosis and am getting better trying to deal with it since reading the posts. Even tho' I find it scary, I take one day at a time. I think it helps me to read about other people's experiences - I don't feel so alone. :rolleyes: I'm sorry to read you're not dealing with this and hope you're feeling alot better than this morning. My thoughts are with you, Warm hugs, jaxsxx
  14. Hi Jude, sorry to hear about your amputation, I'm sending you lots of warm hugs and heartfelt wishes to get you though this difficult time , (((((jaxsx))))))
  15. on saturday my grandaughter whos 5 years old, bought me a huge bunch of daffodils..... :rolleyes: she came in with the biggest smile give me a hug and a kiss and said I love u nana...looking very pleased with herself..we put them in a vase and we both sat looking at how beautiful they were, then my grandaugher said ....nana do u like your petrodactyls, bless her she now knows u pronounce them as daffodills hahaha!!!!so cute...