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    Hello Heather,

    I'm hoping your keeping fine, i lost you as a friend under my old name.

    Love Terry xxx
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    Hello Heather,
    I do hope your feeling fine in yourself [well as best you can be] as that's how we all are and if you feel like you've been able to sort your head more, as this lot drives me mad. I put a thread up yesterday after seeing the gyno and this is what happened and what's happening next just a waiting game for appointments again as perusual.

    Heather i've just copied and pasted it onto here put it's over a 1000 letters but the thread goes as
    [Results from my gynecologist today on what happens next]

    Do takecare Heather & all my love Terri xxx
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    Hello Heather,
    Nice to hear from you mate and i do wish you all the best with sorting your head out with this lot because at the mo, it's realy getting me down, just so much pain and tomorrow i see the slin specialist and i don't see the gyno till the 17th of jan to see what they're doing but i'll let you know the outcome.

    Take it easy heather and i wish you all the best and a nice 2011 mate.

    Hugs Terri xxx
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    Hello Heather,
    I've not seen you on for a while, i do hope your ok mate and your ok refering meds and so on.
    Please let me know how you are Terri xxx
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    Reading your message i see we both have been having a flare so i know what u r going through. I think the headache you have been having is a lupus headache i get them often and it makes me cranky and i cant think clearly. My neuro appt. went well im healing but he still wants me to refrain from bending my head as much as possible since the x ray shows some movement of the bones in my neck above where he operated and that worries him since im so young to have had this surgery in the first place with that being said i dont have to see him again unless i have a problem (everyone claps ).Yes one less doctor too see. I have been dealing with a lot of depression .My friends took me out for my birthday which was on 10/31 and every time a picture was taken of me all i could see is my fat steroid face which made me really depressed but i couldnt let that show and spoil the going to go take a muscle relaxer and pray this pain goes away for both of us. slim
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    hi heather just recieving your message now and im doing a little bit better just tired of the pain and flare but what can you do. I have to see the neurosurgeon to see if i am healing properly since my surgery so im keeping my fingers and toes cross so we will see how that goes. hope you feel better soon but twritehe general feeling of malaise can be hard to shake and that sucks .I am tired and i need to log in more but when i feel bad i kind of shut down and between my job and the kids i have almost no energy. enough of me wining write back and let me know how u r. By the way im on a new med Lyrca 50mg three times a day to help with the pain. Have you ever been on it if so let me know either way. non painfull hug from me to you. slim
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    hey Xanis mom just getting ur message now glad u liked the virtual hug .I have three girls ages 10,12 ,13 and a boy age 8 . Glad to hear u r a mom because u get that unconditional love no matter how sick u r. Kids are resilient but they still need reassurance that we will be ok at least thats how it is at my house. It sounds like u have a great daughter. you have yourself a nice painfree night. slim
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    hi slim here i am 32yrs.old soon to be 33and i was diagnosed about 5 years ago with sle and the last 2 years have been the worse especially this year which sucked to say the lease. I have sun sensitivity, joint pains, SHOOT pain all over, migraines, lupus fog, fatigue, dry red itchy and painful skin on my hands. i am currently taking plaquenil, cellcept, lyrica, prednisone, fish oil, iron, vit. d, restoril, flexeril, . I also was very active and this illness has changed all of that. I also get depressed but i try and shake it off because its just not healthy plus my husband wont let me stay depressed long and he is my biggest supporter. I know how it is to feel like you are a broken record and that u are whining everytime you speak about how u feel but its how we feel and if they dont really want to know then they shouldt know. People, friends and family dont get it because we may not look sick on the outside. hope u feel better soon , welcome and here is a soft hug from me to you.
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About xani's mom

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About xani's mom
16 year old daughter named Alexandria SLE, FMS, colitis
Walshville, IL
puzzles, reading, movies
Correctional Officer


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Recent Entries

Just when you think you know the rules the game changes

by xani's mom on 01-04-2011 at 10:48 PM
As much as I adore this site I haven't been on it in awhile. There are several reasons for that, the holiday season being a big one. My daughter was chosen as a student ambassador to Australia/New Zealand and we have of course been working on a lot of fund raising ideas for that. I hate asking people for money, but with only the retirement coming in right now it's the only way she is going to get to go on this trip, and this trip could open a lot of other opportunities. It frustrates me that

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There are good things too

by xani's mom on 10-24-2010 at 12:55 PM
As I have read back over what I have told you about myself I realize that I haven't said anything about the good things. Maybe, sometimes, I need to remind myself about the good things. So here it goes:
I have a 16 year old daughter who is very smart, beautiful, and musically talented. We share a very close relationship that may not have developed so well if I hadn't gotten sick, it brought us closer. I don't lie to her about the realities and she trusts me enough to share everything with

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my journey

by xani's mom on 10-22-2010 at 02:46 PM
In about 2002 I started getting migraine headaches, and occasoinally my hands would just become to painful to use. The headaches could last for days, but the hand thing would come on suddenly and be better by morning. They did an MRI and told me it was normal and the headaches must be from stress. Over the next couple years I began to develop frequent kidney and bladder infections, plueresy, back pain. The doctors would treat whatever condition I had and didn't seem to think there was any underlying

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