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Thread: Update!! Sorry Lost in FarmVille!

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    Default Update!! Sorry Lost in FarmVille!

    Sorry I haven't been on in quite a while. I have been spending ALOT of time on FamVille on facebook. Probably more than I should. LOL I saw my rheumy Feb 1st, he lowered my plaquenil to 1 a day, and put me on CellCept. I feel pretty good thanks to the prednisone. I know that if I try to taper down again, I would be right back in pain. I am still dealing with the FATIGUE and migraines. The migraines are somewhat under control thanks to nortriptyline as a preventative measure. I did have a doozy last week that landed me in the ER. The gave me intranasal lidocaine, they injected lidocaine up my nose. The ER dr. said it works 50% of the time. He also gave me a tordol and phenergan shot. It worked and thats all I really care about. YEAH! Talk about a numb throat! LOL So I go back to my rheumy on March 1st. I would really like to get off of the prednisone. My clothes aren't fitting so well. I am currently on 15mg of pred. Now I am taking 2000mg CellCept. 200mg plaquenil. I am quite upset about the hair loss. I have lost over 75% of my hair and it seems to be getting worse. I think I am definately going bald! I did actually get out the other day and went fishing, didn't catch anything but I got outside! YEAH!!! I am having a problem trying to find the right sunblock. I have tried Coppertone 75spf and still got malar rash from walmart or the sun. Still looking for a good sunblock, any suggestions? I have found that if I put vitamin e oil on my malar rash it goes away faster, also helps take the burn out too. Well I know there is more I wanted to say but I really can't remember now. So TTYL ALL!
    Dx. SLE June 2009


    ♪ Jen ♪

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    That is funny about you and Farmville on FB..I haven't been to my farm in several months. I am sure that everything is dead, overgrown, and hopelessly beyond saving
    However, next time I am on FB...I will visit your farm because I'm sure it is beautiful.
    I've not been to YoVille either, so I know I've lost all of my friends..I am so awful at those games!

    I'm glad to hear that your migraines are starting to be under control but sorry to hear that you are losing your hair. I know that it will eventually grow back, but that knowledge does nothing to help with the loss and balding today!!

    When purchasing sunscreen, try to look for a sunscreen that is hypoallergenic, has broad spectrum protection, and has an SPF of 30 or greater (having a high SPF alone will not provide the protection we need). The term broad spectrum sunscreens refers to sunscreens where both UVA and UVB rays are being blocked. One way to check if UVA is being blocked is to read the ingredient panel and see if ingredients such as Zinc oxide, Titanium dioxide and Parsol 1789 are included.

    I'm glad to see you back! You've been missed.

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

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    Thanks for the advice saysusie! I will check the ingredients on my sunscreens. As for my hair loss, I know it will grow back but it certainly sucks right now! I will try to participate more often on whl.com. Just so sucked inton FarmVille! LOL Take care and look forward to chatting with you soon!
    Dx. SLE June 2009


    ♪ Jen ♪

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    You Are Most Welcome

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

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    Ah welcome back SC,

    Im sorry you have been going through a bad patch and also about your hair,but hopefully it will grow back once the meds are lowered.I giggled at your fb comment,like me im hooked on Mafia wars You go on for half hour then 2 hours later still there lol,but its good for taking the mind of the world.How fab you went fishing.Where was it at a lake? Id like to fish but with a net so i dont hurt the fish lol.I used to go fishing when i was very young with a cane and a net at the end.Oh lidocaine...hope it helped you.I had the jaw block twice so i think up the nose OUCH but it does numb the face.I have the patches now for my jaw,neck and they help me.Hope your migranes ease soon.YOU HAVE BEEN MISSED.

    Love
    Amanda.xxxx
    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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    hey im a new member.. my names sulie.. i dont know much about the skin problems and lupus.. but i have albinism and whats always worked for me is baby block.. idk if you know anything about albinism but my skins super sensitive to just about EVERYTHING.. so i end up using sunblock even in the winter.. idk if it'll help much but its a suggestion.. oh and btw i too play farmville. .facebook.com/ooyeababii... can add me if you want..

    take care..
    hope my suggestion helps ya out

  7. The Following User Says Thank You to ooyeababii For This Useful Post:

    smokerscat94 (02-27-2010)

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    [QUOTE=Angel Oliver;68216]Ah welcome back SC,

    Im sorry you have been going through a bad patch and also about your hair,but hopefully it will grow back once the meds are lowered.I giggled at your fb comment,like me im hooked on Mafia wars You go on for half hour then 2 hours later still there lol,but its good for taking the mind of the world.How fab you went fishing.Where was it at a lake? Id like to fish but with a net so i dont hurt the fish lol.I used to go fishing when i was very young with a cane and a net at the end.Oh lidocaine...hope it helped you.I had the jaw block twice so i think up the nose OUCH but it does numb the face.I have the patches now for my jaw,neck and they help me.Hope your migranes ease soon.YOU HAVE BEEN MISSED.

    Hi Amanda,


    Yeah it has definatley been a rough patch. this flare started last May! As for the fishing it was in the Okanogan River. It runs through Omak. we didn't catch anything but its the first time I have been out of the house this winter without going to a doctor, hospital. ect... So it was a big deal for me. It was pretty shadey where we were, but somehow managed to get the malar rash anyway. Oh well starting to get used to it. So my face is red, oh well! My hair falling out is what bothers me the most I think mentally. Because it is so visible. I went and got my hair cut short today. It looks pretty cute too. I hope that helps alleviate all the long hair I have had all over me and my hubby and our house. Kind of embarassing to have a hair tickle your back and u go to get it out and it comes from way up front.... That Sucks! Now none of my hair is that long. yeah! I see my rheumy on March 1st. Hopefully I will hear some good news for a change.

    The lidocaine injection did work really well actually. I was just glad to get rid of migraine any way possible.You can add me on fb if u want also. smokerscat94@hotmail.com. Thank you for the warm sentiments! I will post when I return from my rhuemy. take care
    gentle hugs(((((XXXXXX))))))
    Dx. SLE June 2009


    ♪ Jen ♪

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    I got away from the sunscreene, greasy and got tired of ruining all my shirts, and went to sunblock, I am using neutregina 70 spf and am very happy with it. Give it a try.
    Quote Originally Posted by smokerscat94 View Post
    Sorry I haven't been on in quite a while. I have been spending ALOT of time on FamVille on facebook. Probably more than I should. LOL I saw my rheumy Feb 1st, he lowered my plaquenil to 1 a day, and put me on CellCept. I feel pretty good thanks to the prednisone. I know that if I try to taper down again, I would be right back in pain. I am still dealing with the FATIGUE and migraines. The migraines are somewhat under control thanks to nortriptyline as a preventative measure. I did have a doozy last week that landed me in the ER. The gave me intranasal lidocaine, they injected lidocaine up my nose. The ER dr. said it works 50% of the time. He also gave me a tordol and phenergan shot. It worked and thats all I really care about. YEAH! Talk about a numb throat! LOL So I go back to my rheumy on March 1st. I would really like to get off of the prednisone. My clothes aren't fitting so well. I am currently on 15mg of pred. Now I am taking 2000mg CellCept. 200mg plaquenil. I am quite upset about the hair loss. I have lost over 75% of my hair and it seems to be getting worse. I think I am definately going bald! I did actually get out the other day and went fishing, didn't catch anything but I got outside! YEAH!!! I am having a problem trying to find the right sunblock. I have tried Coppertone 75spf and still got malar rash from walmart or the sun. Still looking for a good sunblock, any suggestions? I have found that if I put vitamin e oil on my malar rash it goes away faster, also helps take the burn out too. Well I know there is more I wanted to say but I really can't remember now. So TTYL ALL!
    Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulations, that we may be able to comfort those who are in any trouble, with the comfort wich we ourselves are comforted by God. 2 Corinthians 1:3

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