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Nicoco
06-12-2008, 10:37 AM
All ya'll with Lupus, tell me you were shocked and a bit angry when you got the news, yet a little relieved because it makes sense. Help me not feel alone in my ramp of emotions. I've been looking for face to face support, because my socialization requires it and I just can't find it anywhere in sunny So. Cali. I guess, I have to come into the 21st century and chat room my feelings. So, I got this horrible news basically on my 40th birthday. I'm still in shock! After going through months of FINALLY not being sick and believing I've finally past this sickness, what ever it was... I got sick and hit hard... then wham bam thank you ma'am - LUPUS. The whirl wind isn't over and I'm getting depressed. Maybe I'm already there. HELP! I love the internet: I was able to get informed before the dr. could finalize a dx. But now what?!? :shock:

nants54
06-12-2008, 10:48 AM
Hello,
I'm also from SO Cali, currently living in Orange County CA. I'm 26 years old and have been living with lupus for 4 years. I was Diagnose when I was 22. It took about 7 months for the doctors to figure out what was wrong with me. I was hit all at once with symptoms. I was so dick for months but after they figure out that it was Lupus I was relief knowing they found out what was wrong with me but also afraid what's going to happen next. Since living with Lupus for 4 years now I've only experience 3 really bad flares. It's still hard from me to cope with it but I'm trying. I'm still young and it's hard to see my friends and family go to the beach or trips because I want to be able to do the things they do but I know my body just can't handle it So I sit back and watch. We just have to limited ourselves with what we do. I'm trying to find a support group in Orange County , do you happen to know any for Lupus?

luvwine2007
06-12-2008, 12:13 PM
I definitely felt relief too....it's like you finally have an answer for the way you've been feeling. But upset at the same time that you have to deal with this disease. I accept that I have lupus now, but I also try not to think about it. Sometimes I feel like it isn't real, that it is normal to be tired like this! But it's not. You figure out a way to cope, it is different for everyone. You learn what makes you feel good and what doesn't. It's a guessing game. Just try to look at the bright side and figure out how to make it all better now that you know what you are dealing with! Are you on any meds yet?

Jennyfoo
06-12-2008, 01:32 PM
Hi and welcome I just joined this board too. I'm not diagnosed yet, but they suspect Lupus or RA(per my appt with the Rheumy today).

I wish I lived closer and we could get together and chat. I'm near Sacramento in the WAY too sunny Sierra Foothills. I'm sorry you're down and heck, who can blame you? I look at it this way, "It is what it is and I"m going to live the best life I can no matter what comes." Attitude is 1/2 the battle I've been told. I'm only 31 and have 4 kids age 7 mo-10 and the baby's birthmom is expecting again and we may end up with a 5th child in 6 months or so(we do foster to adopt and they try to place siblings together as often as they can). Hopefully my doctors can figure out what's going on by then and get me on meds so I can deal with a newborn- or I'm going to hire help.

I hope that your doctors can get this under control and you'll be feeling better soon. I hope so for myself too. Take care.

sits_inthe_corner
06-12-2008, 04:32 PM
Roller coaster ride from hell.

I'm not diagnosed yet. My mother had lupus and my sister has it. I've had symptoms since I was in my teens.

My rhuem is a pain in the butt. She doesn't believe in lupus. She thinks it's a cop out diagnoses that doctors stick patients into when they dont know what else to do with them. grrrrrrrrr

So here I sit with my pills and goofy body parts. Trying to take the best care of them as I can.

What next? well life. Live it as best you can and take care of your self as best you can. Come here to whine when things aren't going the way they should, and for friendship and a few chuckles.

Nicoco
06-12-2008, 04:51 PM
I hope I'm resonding to this correctly... I don't know of any support groups in OC, LA or near me in Ventura. I've been all over the internet, Lupus Foundation, individual hospitals etc... people around LA are just to proud to beg for affection. I'm from LA so I am speaking from experience. The closest I found is in San Diego and North Cali... I'm not on meds and I'm not a fan of pharms. My dr. is pretty awesome, he asked what form of treatmet I preffered and I said natural. Of course he pushed Plaqunil, but suggested I wait to see if the short run of Prednisone will put me in remission. I'm allergic to everything under the sun and they even thought the sun was included until this recent dx. Talking to the doctor we are guessing, I've been dealing with this since my teens, but never diagnosed correctly. Today, I began thinking, if I can go this long without a serious flare, maybe it's more managable than I think. Although it's begun attacking my organs we think: when I had my daughter I had cardiomyopathy and the Rheum is thinking it's associated. Right before the Lupus dx I was in the hospital with some type of cardiac episode. We never figured out what happpened. But it's all so scarry. Well, since you don't have any F2F support, please whine to me. I will feel comforted knowing I'm not the only baby out there. I am so disappointed to know I did not get past this "sickness". I just want to be well whole and normal.

Nicoco
06-12-2008, 04:53 PM
I definitely felt relief too....it's like you finally have an answer for the way you've been feeling. But upset at the same time that you have to deal with this disease. I accept that I have lupus now, but I also try not to think about it. Sometimes I feel like it isn't real, that it is normal to be tired like this! But it's not. You figure out a way to cope, it is different for everyone. You learn what makes you feel good and what doesn't. It's a guessing game. Just try to look at the bright side and figure out how to make it all better now that you know what you are dealing with! Are you on any meds yet?

You're very healthy emotionally. How long have you been dealing with Lupus. Also, your Name: Luvwine: is this wine the succulant flav of grapes or is it whine, like what I've been doing since joining?

Nicoco
06-12-2008, 04:57 PM
Hi JennyFoo, today is not so bad. It's all the waiting. I hate waiting. Has anyone tried an enzyme Bromelain with high dose of vitamin C. My chiro suggested it for the inflamation?

Nicoco
06-12-2008, 05:12 PM
Roller coaster ride from hell.

I'm not diagnosed yet. My mother had lupus and my sister has it. I've had symptoms since I was in my teens.

My rhuem is a pain in the butt. She doesn't believe in lupus. She thinks it's a cop out diagnoses that doctors stick patients into when they dont know what else to do with them. grrrrrrrrr

So here I sit with my pills and goofy body parts. Trying to take the best care of them as I can.

What next? well life. Live it as best you can and take care of your self as best you can. Come here to whine when things aren't going the way they should, and for friendship and a few chuckles. Find a new doctor. I'm such a believer in moving on when doctors aren't a fit. My general physician is the one who told me I might have lupus when all of my hair came out then turned around in a week and said there was nothing wrong with me. One of the nurses spoke with me and told me to see another doctor in the office. My doctor hadn't even run all the test. She was just testy. I don't know if having a diagnosis is so necessay, but my chiro told me I wanted to be sure I wasn't getting sick from Lupus because it can be life altering. If it weren't for him, I don't know if I would have kept pushing. I will pray for you and Dr. X.

Nicoco
06-12-2008, 05:26 PM
Hello,
I'm also from SO Cali, currently living in Orange County CA. I'm 26 years old and have been living with lupus for 4 years. I was Diagnose when I was 22. It took about 7 months for the doctors to figure out what was wrong with me. I was hit all at once with symptoms. I was so *Meat Flute* for months but after they figure out that it was Lupus I was relief knowing they found out what was wrong with me but also afraid what's going to happen next. Since living with Lupus for 4 years now I've only experience 3 really bad flares. It's still hard from me to cope with it but I'm trying. I'm still young and it's hard to see my friends and family go to the beach or trips because I want to be able to do the things they do but I know my body just can't handle it So I sit back and watch. We just have to limited ourselves with what we do. I'm trying to find a support group in Orange County , do you happen to know any for Lupus? Guess what, I was all over this site today and there is a topic on "Support Groups" in the topic someone has a discussion about So Cali support groups and there are a couple in the OC. Good luck don't forget to keep talking to me.