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06/12/2008 21:28
ChinaVamp
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So, I'm new here. I'm not exactly sure what to say. I am 22. I recently had a son, my first pregnancy, first birth. I don't know anyone with Lupus really. I mean, no one in my family has ever been diagnosed with it until just very recently. I just thought it might be nice to have someone to talk to about it some time.

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06/13/2008 14:01
mumeva
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Hi, Wow my daughter just turned 23 and she will be having her first baby (a boy) any day now and right before she got pregnant she became ill and now they can't test her until after the baby is born. I have lupus and have had it for l5 years and now the doctors think that my daughter might have it. No one in my family has been diagnosed with lupus that I know of I'm the only one unless my daughters tests results come back that she does as well. What type of lupus do you have? I have central nervous system lupus. There are many types. This site is a great place to share with other people who have this illness you are not alone. Please feel free to chat with any of us about lupus.

Eva


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06/13/2008 19:43
ChinaVamp
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I have Systemic Lupus. It's so hard for me to talk to people about it because they can't understand the pain that I am in everyday, not just because of the Lupus but also the Fibromyalgia. Before I got pregnant, I was on so many pills. I worked at a home health agency and the nurses used to tease me saying that out 80+ patients were on less meds than myself. There's days I just curl up and cry because I hurt so bad. I hope that your daughter's tests come back alright. It is very hard to deal with. I deal with it pretty well. I don't feel sorry for myself or anything. That's just the way it is. The only other person in my family that has been diagnosed with Lupus is a distant cousin. I will keep you and your daughter in my prayers.


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06/16/2008 13:18
fibroforever
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I was diagnosed with Lupus about 17 years ago, when pregnant with my youngest. My oldest is going to be 23 in August. She's pregnant with her first child (mumeve- she's due the end of July. we'll have grandchildren around the same age! ) Anyway, she hasn't been told that she has it.

Some doctors say that it skips a generation. But I don't necessarily agree....beings how my mom had it full-blown.

"When you feel like giving up, remember why you held on for so long in the first place." ~Unknown
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06/16/2008 13:42
mumeva
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My daughter is due any day yippee!!! There are days that I hurt so bad all I can do is cry. I'll have a good cry and than I feel a little better. I try to keep moving so my joints don't stiffen up. My main complaint these days is that my head is always in a fog and I get electricity shooting thru my head and than my head starts to hurt. I see a neurologist tomorrow so hopefully she will have some answers for me.

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06/16/2008 16:53
ChinaVamp
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I hope that everything goes well for you at the Neurologist. I should be getting to my Rheumatologist since I am having a flare up again, but with a few changes after my son was born, I no longer have insurance and I can't get help, so I am trying to deal with the increasing pain and ever-present fatigue and weakness the best that I can. I have noticed several things happening again to me that I was able to control a little bit on medication but now......I don't know what I am going to do. I feel so sad and being in constant pain doesn't help. I'm sorry for being the dark cloud today, but it's going to rain here and I feel it everywhere. Just having one of those days. I have a lot of complaints these days but I try not to give into them. Good luck with the last of your pregnancy and delivery. I'll pray that everything goes well. Have a good day!

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06/16/2008 18:47
mumeva
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Can you get yourself in a nice warm bathtub? I know when I'm hurting sooo bad I take a hot bath and I have a jacuzzi tub which really help. If you can't do that do you have a heating pad? Or how about wrapping yourself up in a warm blanket. Gosh, I'm really trying to help I wish I could be their for you. Since you don't have insurance and not on meds how about getting some tylenol arthritis I know its not much but it does help alittle. Its okay to feel sad and lonely and depressed and all that comes with it but please know that your not alone we are all in this together. We are here for you anytime you want to vent. You will be in my prayers.

Eva




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06/17/2008 16:38
ChinaVamp
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Thank you for your kind words. You know, hot or warm baths used to help me a lot when I was hurt from the cold and such but the couple of years I find that when I get out of the tub, my body (kness especially) seem to feel more stiff than when I went in. Before I started taking meds....before I got pregnant, I was using Tylenol Arthritis meds and I'd take 2 and even 3 sometimes and feel pretty much the same. Now that I am still partially breastfeeding, I can only take IBpro which is like taking candy so I just deal with it. I consider myself very strong and I truly hate feeling weak. I think that that's what kills me the most about having these .....issues. Not only do I feel weak physically but that causes my limitations and therefore makes me feel weak emotionally and mentally at times. I think that I chase people way because of this. The only thing that I am truly grateful for is that my son was born healthy and minus a slight issue of semi-low fluid, there were no problems. He's a little fighter like his mommy and I want him to see that, not the pain and sickness.

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06/17/2008 18:39
mumeva
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This is why you keep on going you have such a precious gift to love and take care of. I think sometimes I chase people away so I try not to say anything to anybody even family. When I feel so poorly I just head for my bed and I keep pretty quiet and my family knows that I'm pretty sick so I really don't need to say anything at all.

I just got back from my neurology appointment and I'm scheduled to have an MRA-MRI and a CATangiogram tomorrow afternoon. The neurologist isn't sure if I have lupus vasculitis or if I have an anurisym. She is baffled that I have had three brain bleeds all in the same area so now alot of testing has to be done. She told me today that she was surprised that I lived thru the first brain bleed let alone having three. So of course right now I'm having a pity party and thanking God that I am alive. I'm having my first grandchild any day now so maybe thats why I've been spared. I know we have alot of pain and sometimes its difficult and we want to throw up our hands and say why or just scream or cry but were here for a reason and yours is for your precious baby boy. He's a doll!! You take care of you and your little one.


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06/18/2008 17:23
ChinaVamp
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I'll pray that all goes well for you. That is a miracle for sure. 3? Wow! Someone is really looking out for you. You take care of yourself and keep your chin up. I don't know what I'd do in that situation but you have a beautiful thing to look forward to. My little Gabriel is my parents' first grandbaby and they never realized how much they'd fall in love with my little man. Take care of yourself and best of luck!

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