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  1. #1
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    Default Sorry

    I not been in contact with y'all not really been with it or myself, but i have been online as many of you gamers can see

    Anyway apart from the usual lupus craqp i been ok, MJ been ok too, his results came in a a small growth on his peg causing the infection seizures etc, he on anti biotics now but OK, Normas fine so is the youg boys, i had them all stay over my house on sat night (hard work lol) so apart from not feeling it today (pre methotrexate) yeah im still alive!

    Keep it real ppl

    all my love and light
    Jane xx

    Oh and btw, i woke up with my hairbrush correctly placed by my pillow (cemetrical) this morning! and i kno for a fact it wernt there last night when i went to sleep hehe, the ghosts return!
    **The next or $ raised WILL be the cure for LUPUS**



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  2. #2
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    ooooo ISDM,

    ghosts putting hairbrushes on your pillow during the night....sounds like some good pain meds you are on, or maybe it is the MTX. ha ha ha
    Actually, i know for a fact that there are ghosts and no one will ever convince me otherwise. My grandmother sends me feathers, and my best friend flashes lights.

    I have a question....i have noticed that after taking MTX on monday, i feel like crap on tues, feel ok wed through fri. On saturday, i start to wear down, Sunday is difficult, and by Monday i am really feeling badly again.....is this a normal routine?

    so glad you are back, and i am especially happy about MJ thank goodness they found what was wrong.

    I have really missed you lately, please hang around.
    Phyllis

    share a smile today

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    **hanging**

    Yes thts completely normal, u will find that the longer you take it, the better your week will become, i used to be sick monday, tuesday and morning of wednesday, now im ill for 2 (max) hours on monday morning, but today im suffering but think thts coz im dehydrated!

    Read my post on M-Day, wanted to ask fellow mtx users about emotions, but wait for a few weeks coz you not been on it a month yet have you?

    peace out

    xxxx
    **The next or $ raised WILL be the cure for LUPUS**



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    Default hi

    Hi Jane,

    Oh im glad all is well,except for you and Mondays....wish it didnt make you all feel so sick.You been missed Jane but always in my thoughts.

    Lots of Love
    Amanda.xxxxxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    Hope things start geting better soon!!!
    But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. Isaiah 40:31

    Take Care,
    Becky

  6. #6
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    Smile Right then..............

    Ive had such a lovely couple of days, someone very close to me (hmm wonder if you can guess who?) took me away for a couple of days to cheer me up and relax from the stresses of day to day life and lupus stuff.

    She came over to look after me on monday and waited on me hand and foot, that was really nice...i got told off for hoovering.....i think ive got an OCD thing haha,

    On Tuesday we went to the coast (Great Yarmouth) for the day, and had a really nice day out just walking on beach, playing on them addictive 2p pushing machines, i dint realise collecting useless bits of plastic (toy cars etc) was soo adictive, and such fun, So 15 and a pocket full of plastic cars, boiled sweets and strange looking dolls later, we went outside...strange it was bright warm and sunny when we went on the peir arcades, we came out and couldnt see anything infront of us the peir and beach was being cleared by emergency coast guards.....the reason......FOG!!!

    So from there we went down to check out some tattoo designs and i got one for my back cost 90 but well worth it cheered me up alot (when its healed il take a pic of it, and pop it on my albums).

    Then from there we decided to leave cause it was cold and wet, we went str8 to MJ's respite in Rayleigh (essex) its a childrens hospice, very beautiful there and soo peaceful, its got all theses exciting things for terminally ill children to do, and this amazing sensory garden, ow ppl i cant even describe how beautiful it was, when we got there we followed in an ambulance with an emergency admission, that kinda sets home what the place is actually about! (at this point i dont think i need to go into detail) anyway the staff there were soo lovely and we stayed there the night, i went to see MJ in his room and it was sparkly green lol bearing in mind it was nighttime when we got there, so they had all these projector sparkly lights in his room, i loved it, MJ seemed to like it alot too, there was a spa pool and a hydro swimming pool for the children, the house was massive, the kids slept down stairs and we had rooms upstairs, we had 2 meals cooked for us, I also met MJ's socail worker she is a very nice lady, I think when youve worked in the buisness for so long seeing life from the other side is nice and very different, so im always looking for the best care for MJ....does that make sence to any of you?.

    Anyway i came home last night and was shattered lol, My friend came over to see me last night too, and by the time she went i was ready for bed, i chatted to Angel for a bit on MSN which i really enjoy catching up with her, then bed, It was chatting to her that made me write this, just to let you all know where ive been hiding the last few days.

    Peace out ppl
    ISDM
    xxxx

    P.S thankyou for all the comments on my page lol RASTA- IM BACK!!!!!!
    **The next or $ raised WILL be the cure for LUPUS**



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  7. #7
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    ISDM;
    So good to have you back and so good to hear that your day was such a wonderful one. We love it when our members are not here because they are enjoying life and having good days!!
    How is the tattoo healing? What did you decide to get?

    Again...welcome back

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Hey yeah, its like a little break isnt it?!

    I had a celtic Vine accross the bottom of my back, i changed the design tho cause i dint like the bottom bit, but i think it looks good, just gotta get my other little one re done and the same on the other side then i dont want anymore, apart from it being really expensive i only wanted the bottom of my back done...and i want it cemetrical too

    Its healing well ty, loving the tattoo goo pot ya get with it lol,


    xx
    **The next or $ raised WILL be the cure for LUPUS**



    ☺☻If YoU gOt OcD aNd YoU kNoW iT....wAsH yA hAnDs☺☻

    ..♪♫**.❤.**☆.。.*✿♪♫**.❤.**☆.。 .*✿

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    Default hi

    Carnt wait to see the photo of it.Hope today has been kind to you and you feel good still.xxxxxxxxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

  10. #10
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    Default

    So good to get caught up with you...you're holiday time sounds fantastic..what a great way to relax.

    I totally understand you wanting to make sure MJ has the best of care. You're his friend...He most certainly needs all the advocates he can get. Oh, the respite place sounds wonderful...makes me happy to know these children have a special place just for them and their families and caregivers. The green sparkly room sounds like such fun. Wish I could have seen it.

    Glad you had such a great time! And thanks for catching us up. Be sure and rest and go easy on yourself...save some energy for keeping you well.

    Hugs....

    Lori

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