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View Full Version : anybody with lupus in orange county, ca??



cynda rae
01-29-2009, 10:51 PM
is there anybody in orange county , california with lupus??? would like to talk, no body understands what iam going through, friends, family!! :(

Angel Oliver
01-30-2009, 12:03 PM
Just saying hello and welcome to you. I am not in your area i am in the UK, but go into Louries lounge as many people here do understand what you are going through and may help you.They help me every day as my friends and family just dont understand. Always remember you are not alone.Keep posting questions you want to understand more about and someone will come along soon and answer you. Im here but am un diagnosed at the moment, but allot of people here have plenty of knowledge much better than me.Glad you found us cause everyone here are lovely.

Love
Angel.xxx

jojo-at-the-bux
01-31-2009, 12:42 PM
im not in orange county but im in los angeles, which is not to far. i just got diagnosed last year but would love to talk to you if u need anything, im also working on finding some groups here in los angeles. feel free to e-mail me ot message me if you want. take care

cynda rae
02-02-2009, 10:14 PM
[quote="Angel Oliver"]Just saying hello and welcome to you. I am not in your area i am in the UK, but go into Louries lounge as many people here do understand what you are going through and may help you.They help me every day as my friends and family just dont understand. Always remember you are not alone.Keep posting questions you want to understand more about and someone will come along soon and answer you. Im here but am un diagnosed at the moment, but allot of people here have plenty of knowledge much better than me.Glad you found us cause everyone here are lovely.

Love
Angel.xxx[/q
thank you for replying, i want to find out as much as i can about this lupus that i have. why are undiagnosed?? what are yor sx?? take care cynda

cynda rae
02-02-2009, 10:16 PM
[quote="jojo-at-the-bux"]im not in orange county but im in los angeles, which is not to far. i just got diagnosed last year but would love to talk to you if u need anything, im also working on finding some groups here in los angeles. feel free to e-mail me ot message me if you want. take care[/quo
t
e]

What was your first sx?? what are you taking for your lupus?? sorry for all the questions. thank you for replying to me . i just might make some friends here!!! cynda

Angel Oliver
02-03-2009, 08:28 AM
My symptoms are very many lol :)
Hair loss
Fatigue
Joint n muscle pain n spasm
severe insomnia
asthma
I had a P.E (blood clot on lung)
Depression
severe anxiety
panics
headache
blurred vision
jaw n teeth problems
lock jaw
irratable bowel
acid reflux
Raynauds.....n much more,.....such fun.....NOT!

Oh such a great list lol....i feel embarrassed. I was a healthy person before who travelled the world.Now i dont leave the house that often cause im too tired. I may have left some details out but this is me.A demic lol :) I feel ill and want to get better. Doctors said i have M.E in 2004/5. This year was told it was Lupus before the blood results came back.Then the doctor said i ''must''have M.E. So i wrote a letter to him and am waiting for a reply.So basically i dont know whats up with me. I used to be out all the time and very active.Now i live in an old ladies body and im 39.
I so hope i find out soon so i can deal with it.Instead of not knowing and feeling like a hypacondriact...which i am not....but am convinced sometimes this is what people think.I know i should'nt be a mind reader it does me no good :)

I hope you are having an ok day. We have snow here in the UK and ive been throwing snowballs at my dog.....so funny. I love the snow.
You take care and hope i have helped in some little way.

Love
Angel.xx

cynda rae
02-04-2009, 08:11 PM
My symptoms are very many lol :)
Hair loss
Fatigue
Joint n muscle pain n spasm
severe insomnia
asthma
I had a P.E (blood clot on lung)
Depression
severe anxiety
panics
headache
blurred vision
jaw n teeth problems
lock jaw
irratable bowel
acid reflux
Raynauds.....n much more,.....such fun.....NOT!

Oh such a great list lol....i feel embarrassed. I was a healthy person before who travelled the world.Now i dont leave the house that often cause im too tired. I may have left some details out but this is me.A demic lol :) I feel ill and want to get better. Doctors said i have M.E in 2004/5. This year was told it was Lupus before the blood results came back.Then the doctor said i ''must''have M.E. So i wrote a letter to him and am waiting for a reply.So basically i dont know whats up with me. I used to be out all the time and very active.Now i live in an old ladies body and im 39.
I so hope i find out soon so i can deal with it.Instead of not knowing and feeling like a hypacondriact...which i am not....but am convinced sometimes this is what people think.I know i should'nt be a mind reader it does me no good :)

I hope you are having an ok day. We have snow here in the UK and ive been throwing snowballs at my dog.....so funny. I love the snow.
You take care and hope i have helped in some little way.

Love
Angel.xx hello angel! thanks again for replying.so the doctor still doesnt know if you have lupus?? any positive blood tests? iam kinda in the same situation, the docs say yes you have lupus but the blood tests are pretty normal, its my sx that are the key here, same as you fatique,joint pain and aches, and yes the rash on my upper body.did you ever have a rash?i ahve been taking paquenil for about 4 months now and has made a great difference in how i feel, are you on any meds?? see your a few years younger than me, iam 42 and did i ever feel crappy about a year ago. well i hope you find some answers here soon. let me know. good night. :wink:

cynda rae
02-04-2009, 08:16 PM
im not in orange county but im in los angeles, which is not to far. i just got diagnosed last year but would love to talk to you if u need anything, im also working on finding some groups here in los angeles. feel free to e-mail me ot message me if you want. take carewell los angeles is not far, where abouts? i live in rancco santa nargarita in so oc, near mission viejo. would love to find some groups here in los angeles area. how did you get diagnosed, what where your sx??? thanks for replying! :D

Angel Oliver
02-05-2009, 05:33 AM
Hi,

im on....Pregabalin/Lyrica
Amityptaline
Lansoprazole
Copermill
Temazepam
Uniphylin ((asthma)
Seretide (A)
Ventolin (A)
Tramadol

You can hear me as i rattle lol :) I see my Rheumi mid February and i will make sure i speak this time instead of being nervous and shocked at what he says to me lol. Yes i get rashes on my upper arms and a strange rash on my cheeks and side of my nose.Its not a red rash...its weird....but not that noticeable at times.But it is on my arms though. I am having terrible problems with my teeth,jaw and gums at the moment.Was put to sleep yesterday for major work.Today im in so much pain i can not concentrate.I had lock jaw at christmas you see.
I do hope you are feeling at home here now. I am sorry i am not too knowledgeable. What does sx mean? Im from the UK so i dont know what it stands for lol. I hope you are feeling ok and have a lovely day. Keep posting and i hope we all can help you in some little way.

love
Angel.xxx

ema1976
04-25-2009, 01:16 PM
Hi,

I'm not in OC but I am in Riverside County. I'm actually from the city of Orange but just moved back to CA from the east coast. So...I'm not Orange County but I'm close. Let me know if you ever want to chat!

- Elaina

MicRoMediC
04-26-2009, 08:38 AM
AngelOliver-

Were you diagnosed with the Lupus Anticoagulant Antibody also?

Angel Oliver
04-26-2009, 08:50 AM
Oh Micro,

My story is a little strange. They said i had Lupus before Christmas when i first joined here.Then a few months later they said its not Lupus its M.E Chronic Fatigue Syndrome.Diagnosis may change who knows.The Doctors in the UK have not been so good to me and ive been messed around a bit. xxxxxx

dsunshine
04-26-2009, 07:06 PM
Hi Cynda Rae,
I am not in Orange County but I am in Los Angeles. I am here to talk anytime about anything. Your not alone nor are you the only one in S. Cal with Lupus. We are here...just Holler!

Mama Meg
08-29-2010, 01:05 PM
Hi, I would love to talk to you. Would love to know who your rheumy is and if you like them etc..

Mama Meg

DanTheWolfman.com
12-15-2010, 03:52 AM
Hello all,
I am in Burbank and still pretty new and aggrivated with all this. Any groups?

dianannsano
01-11-2011, 10:27 AM
Hey Cynda Rae!
I'm from northern Orange County (Westminster area) but I often visit Irvine. Whenever you would like to talk or hang out, I would love to grab a cup of coffee/tea. We can always meet in the middle (Ivine area). Feel free to private message me.

Cheers!

susanacevedo
04-26-2011, 08:11 AM
I am in Costa Mesa. I would like to talk as well. Just diagnosed and still don't believe. In denial I guess. I understand what you're saying about nobody understanding. My email address is susanacevedo@live.com, just send me an email and we can talk.

susanacevedo
04-26-2011, 08:15 AM
Did they do an ANA test? My doctor did an ANA test twice just to make sure the results were correct. Doctors are not good to anyone, anywhere. They don't understand the pain, frustration, and loneliness of having a disease.

riverlaken
05-16-2011, 06:30 AM
Hi there Cynda,
I grew up, in Newport Beach for 35+ years, I am now in Arkansas, although, I am always up for a chat.
~Dana

tgrpam
08-28-2012, 02:42 PM
HI
i live in OC and am new to lupus and sjogrens.
do you like your doc? what symptoms have you had. my are very few... face rash, joint pain in hands, and positive ana, ss-a, and thyroid tests. plus the symptoms of sjogrens, dry eyes and mouth,
i consider myself very lucky.

deannegirl
11-07-2012, 06:07 PM
Hi all on this thread, tgrpam, susanacevedo, dianannsano! I live in Temecula, CA and just created a new group on Meetup.com called "Temecula Valley Lupus Ladies"! I would love for you to join, I would be happy to create a monthly meetup in the OC or LA areas and drive out to meet you! :)

I am 30 years old, diagnosed with SLE among other things. xx

gizlby
03-06-2013, 10:09 AM
Anyone in the north orange county area? I'm in North Tustin. Would love to meet up with other people.

Morgause
07-08-2013, 10:10 AM
Hi,
I live in Denmark, Europe, but my husband is considering a job in Santa Monica. Being a lupie I wonder how it works with doctor / hospital visits, prescriptions, costs etc. in California. The company offers 4 different kinds of health assurances that includes the spouse. Is there anything particular we should be sure is mentioned in the policy or anything else it would be good for us to be aware of before we take the final decision whether to move or not?

I'm in my late 30'ies and luckily I haven't been hospitalized the last couple of years if that has anything to say.

I really hope that there a one or more persons who can help me with this since it's such a big decision for us. :)

/Morgause

Alis
12-04-2013, 01:31 PM
hi! I am from OC so anyone how want to talk I am here if you live close.

Lucia
03-07-2014, 02:13 PM
This is a kind of quiet topic but I figured I'd try anyway...

I'm in OC (Newport Beach/Costa Mesa area) and looking for other people with Lupus around here, maybe to start up a support group if I can't find one otherwise because it seems like there are no resources around for people with Lupus in the area. Anyone still out there in the area/paying attention to this topic?

Saysusie
03-10-2014, 10:06 AM
I think people still read these posts, just no one from Orange County! Sorry. I do hope that you hear from someone soon! In the meantime, keep coming here to WHL and we will always do whatever we can to help you as much as we can.

I wish you the best.

Peace and Blessings
Namaste
Saysusie