about me as a person

[wood]

Hi Im sister Judith,

Im a`Franciscan Sister and have been for 20 years,

My hobbys are card making and cross stitch,also enjoy reading I used to do some gardening but these days painfull joints dont let me do in the garden.

I would welcome news of others Im finding it difficult to find out about Lupus .

would love to hear from others Judith

[SRamkin]

Hi Judith

I was diagnosed last year with SLE, been unlucky with doctors, I still don't know much about Lupus only that it affects each person differently and the only constant is pain. I'm not getting any treatment at the moment, just Plaquenil. I live in a very hot, sunny place where I cannot get proper medical care - to put it mildly, I wouldn't trust the doctors here to even wash my car (supposed I had one!).

So I'm here looking for answers and support, too.

How are you coping with Lupus?

[Hester in reply to SRamkin]

hi judith and sramkin. i too have sle and raynauds. i joined a site "lupus is real" via facebook. they are the most supportive group ever and ive learned so much about lupus there. please join today. you wont regret it. best of luck to you both. lots of (((((hugs))))) from me......

[HalfPint in reply to Hester]

Hi Hester

I have SLE, Scleroderma and Raynaud's and have sent you a Friend Request on Facebook, as well as 'Lupus is Real'.

Thanks xx

[wood]

Hi Hester and srankin,

SLE is a real big of a thing and getting the right help also knowing the right questions to ask is a problem I also have Raynauds Hester its quite a problem.

Sramkin I truly hope you get help soon fighting in the dark and on your own is painfullo say the least ,We are here for you to let off steam to ,I do feel for you as that is where I was and still am upto a point. Thank you both for replying Bless you both Judith.

[wood]

HI everyone Im so glad I joined lupus uk its good to have support .

And thank you to these who have already responded its good to feel part of the group.

Bless you all Judith

[helentad]

Hi Sister, my name is Helen and I was diagnosed 5 years ago and have struggled to find information. That is until I purchased a couple of books from Lupus UK and St Thomas Lupus Trust. They are really informative and written in a way that I can understand. The best 2 pieces of information are If you are tired then Sleep and if you go out in the sun cover up as much as possible and wear a wide brim hat, this being due to the uv rays make you sick.

I to love crafts but find it difficult to near impossible to do anything because as soon as I try doing something I start shaking, but heyhoe I attemp things.

Best wishes and gentle hugs to all

Helen

[IMillar]

Hi Sister, I also like reading and cross stitch. I was diagnosed 21 years ago when I was 21 and my main problem then was joint pain. I don't have that now or any pain for which I am grateful. I had problems with my kidneys resulting eventually in a transplant which was very successful nearly 6 years ago. I am susceptible to infections because of low immunity and I have found the charity Lupus UK a good source of information. Sun doesn't bother me too much but I am quite careful in it and I have had to retire from work recently as I could not manage. Good luck.

[sabine]

hello Sister. I am diagnoised with lupus SLE and I participate in an art and crafts support group for women on a regular basis. As most people say the biggest areas of pain tend to be joints and sunlight (resulting in unsightly rashes) I too seem to be lucky in the fact that as i get older the more severe symptoms are subsiding. However as we know lupus can 'creep back up' on you so management of the condition/ilness is the way ahead. bonne chance!!

[wood]

Hi Illmar,

Thank you for getting in touch its good to hear from others with this awfull thing called Lupus.

Cross stitch is fun and takes your mind off how you feel which right now is not good but Im luck in that I have the support of my community to keep me going and if I need to be in bed thats ok with them.Right now Ive a bird cross stitch on the go and thats keeping busy but like most lupus suffers I tire quickly but a bit at a time thats my plan.

Hope you ok and have supportive friends and family round you.

Good Luck Judith

[wood]

Hi Helentad,

Thank you for your news, Its good to hear fromsomeone who also enjoys craft I sell my cards and that way help the communitys funds but there is no pressure on me at all my fellow sisters are just pleased that I have the energy to make some and people who come to the house pleased to see them.

Ive been going through a very bad patch this past 2 months hardly able to anything but hope ends soon.

keep in touch if you are able its good to hear from you.

Good Luck Judith.

[wood]

Hi Sabine,

I think I deleted the reply I sent you, So here goes again Im so glad to be in touch with others who suffer from Lupus it helps to know you are not alone and others find it difficult as well. What kind of craft work do you do? I do Iris folding prick and sew and of course crossstitch.

How are finding life for you right now ?for me its difficult Im very tired and little or no energy

but my community are very supportive and if I cant getup in the morning thats ok with them

and anything I do aound the house is wecome.

I hope you a helpful and suportive family and friends around you it makes all the differance to our welbeing.

Hope all is well with you goodluck

Judith.

[Melinda]

Hello sister, lovely that you have joined this site. Your card making sounds extremely interesting. I love using my hands but i now am limited to what i can do, my hands and fingers are not as flexible as they once were. I used to love anything from DIY to drawing. However i do still enjoy doing what i can do. I can get lost in doing something i enjoy and it takes my mind off my aches and pains.

Good luck.

[nanny4]

Hello sister,

I am a grandmother of 5,I have syjogrens and raynaulds,and I am fortunate not to have lupus.

I come to this site to find info and support that I can pass on to my 26 year old daughter who has sle ,she has 3 year old twins who I look after while she works fulltime,how she does it I will never know.

I love looking after the twins,they gave me the strenght to go on when I was diagnosed with breast cancer two years ago at the age of 45.

I can honestly say that they gave me the strenght to carry on life as normal,whenever possible,I looked after them whilst I was having chemotherapy,they kept me busy,visiting the ducks to feed them,playing at the parks,even visiting a children's activity center where parents get to climb the climbing frames and go down the long bumpy slides,I never thought I would be doing that at 45,didn't have the best bladder control,he he! It is lovely to here from you,hope tommorrow finds you all feeling a little better.

Take care, Sandy.

[nanny4]

Hi Judith, I an glad you have such great support from your community,I always feel so sad for anyone who does not have anyone that they can turn to if they need a shoulder to cry on or just someone who can give them a little physical help,(maybe with the children or household chores).

I hope you get a little relief from your symptoms,my daughter is just getting over pneumonia,she suffers from asthma and a chest infection quickly turned to pneumonia.

She is already on the mend and back to work,her twins keep her going,they are so funny, she was told she may never have children,so they truly were a god send.

Please let us know how you are getting on over the next few weeks,hope your health improves ,take ,Sandy.