[ZERO]

Hi my name is tracy and i was dignosed 10 year ago when i was 19. Ive learn to cope fairly well with the in and outs but it would be nice sometime to talk to some one other than a doctor that understands.I have a 3 year old and im a full time house wife.I love books and like a lot of people this year ive decide to change my life style to help with the SLE.

 

[JessW24]

Hi There!

I too was diagnosed when i was 17 which was just over ten years ago now and i decided to knuckle down and start taking care of myself too! I joined this site only a couple of days ago and have already had some great advice.

Hope you find this site useful to you, i know i have!

 

[ZERO]

hi jess, like you for a long time i was in denile about the Lupus but something happem to me abount 2 years ago that made me relise that we have too be involved with our own treatment and keep up to date with any new info.I was in for a rountine doctors appointment for a blood test that i have done ever 2 weeks. i didn't think any more abount it and carried on with my day.That night my doctor rang up in a panic say that my red blood cell count was so low i shoun't be alive and i need to go to hospital right away. after many blood transfustion and test they finaly worked out htat my lupus had shut down my bone marrow [vrey rare].i was put on a drug not yet lincence for lupus called rituximab.It saved my life but if the drug stop working theres no other option for me.i was so gratefull for my consultant effort and my doctors without them i would not be here but it has made me relise i need to take control of this illness not just for me but for my daughter as well. good lunk and take care

 

[LolaLola]

Hello Tracy, Welcome here. Yes, it is definitely worth being well informed. Having been so ill must have been a dreadful worry to you, as a Mum.
x Lola

 

[ZERO]

Hi Lolalola, Yes as a mum of a very young baby at the time i coun't get my head round the fact if they coun't find anything to help i was not going to watch my baby grow up. i started to go through the motions of withdrawing from her and my husband but i had a lot of time to think during the transfustions as they took all day and i relised i had to carry on as normal or the lupus would have won.i changed the way i looked at things and i recon it was this that help me through the bad days and now i could not be closer to my daughter .considering i was told i would never have children when i was dignosed i consider her my mircle and its her that has given me a whole new outlook
ps sorry about my spelling ,im dislexic

 

[Katharine]

Hello Zero and welcome

You've obviously had quite a time of it over the last ten years but you seem to have come out of it with a great attitude and a lot of positivity. That helps a lot!

I think we all get some sort of wake up call that stops total denial at some stage. For my part I did but I still have a very concious sort of denial going on. What I mean is I just don't see myself as someone who is ill and really can't identify with it. I mean, scientifically and intellectually I do know all that but, I don't know, I just kind of find it all rather boring when it comes to me :lol:

Anyways that's just me. Great to meet you,
Katharine

 

[ZERO]

Hi Katherine, gosh i thought it was only me who felt like that .i keep thinking that they must have made a mistake even though i know its not possiable there is still part of me that desperatly wants it to be a bad dream even after ten years but hay ho at lease life isn't boring

 

[LolaLola]

Jess, your spelling will not matter here. We can all understand what you are writing. Also many of us find our typing is not too good when we feel ill,so we are all used to that.
x Lola

 

[LolaLola]

Sorry, there I go another mistake. I meant Tracy not Jess. By the time I have read a post and scroll down to answer I do forget things like names.
x Lola

 

[Pink Pearl]

Welcome to the new members,
Zero, I had my bone marrow stop producing red cells also. Fortunately, I was able to get "jump started" with IV iron in 5 doses. The next step, had that not worked, was to have transfusions.

I still run somewhat a low red count, but not enough to worry too much about. We watch, I try to eat a healthy, organic as much as possible, diet, and take care of myself.
Sally

 

[ZERO]

Pink pearl, thank god, you don't know how much it means to have found someone else with the same condistion,im not alone any more.with the added extra of the bone marrow it was as if i had a diease most people could not understand and also one even people that had lupus had not been through.would it be possiable to chat a little more and find out yuor experiances with this .even my consultant didn't know how to treat it at the start but i don't think he considerded iron.how doses that work?thank you so much for repling