Hi mary!

Welcome to the group! It is nice to meet you.

We are here for you. What do you want to discuss? Do you have friends and/or family that don't really understand what having lupus means?

Talk away...We'll help *any* way that we can!

Hugs,
ladybrannon

Hi, welcome... In more ways than one.
I know exactly how you feel with family who don't understand. Mine is like that too. Not that they don't support me when i'm sick, they just don't understand while when i'm not sick why I cant do certain things. I try to explain the daily maintenence you have to do with lupus, they just dont get my meaning. And some wont even acknowledge that I even have a disease! its just something else I have to deal with. My husband and kids know that when I say I cant do something or that I have to take a nap that it is because of the lupus, but others are always saying " well, you look fine to me! "
so I understand completely. You can come here, and talk all you want about any of this, someone has probably been where you are at, at some point, and can walk you through it.
It's nice to meet you.

Big hugs,
kris

Hi mary, this is not an easy life we live,it's nice to have a place to come and know we are not being judged!
Feel free to let it all hang out(so to speak). We all have days we need to vent, and or cry, or just talk and share.
Welcome to our site.

sharon

Thank you ladies for your response, I have search many sites and have not found what I am looking for till now.
first a little history.
I do understand whats going on with me now. When I was diagnosed in 1999 the way I was told I had sle freaked me out, I was scared so I went untreated. I did do a little research on lupus but being young and having so much to do I still chose to be untreated.
Thankfully my ob doctor told me I had to see a ruematoligist threw my pregnancy or he would not treat me. Neither doctors took my constant questions seriously (so few cases in my area).
I remember at midnight I was in so much pain I couldnt stand it, my temp was 103.6 the oncalls blew me off. At 8am when my friend found me in a non responsive state and called mmr. In the hospital the test showed my kidneys were producing infection only and my blood was full of it. Boy thats enough to get you to take your illness seriously.
I thank my lucky stars that even thow my liver and kidneys are so bad I still had a healthy new born.
I have one friend that does try to understand and be supportive. My grams crys all the time because she feels its her fault, my mom only discusses my illness as a topic to see her pshyciotrist instead of me My husband and kids still think I am supper woman, and all the doctors in the area I begging me to come to them cuz they have never had a case as severe as mine. Jeepers.
How do you guys deal with the pain? I a on tylenol 3s and vicodin it does even start to give me any relief.
Has the plaquenil affected any of your vission?
What do you do when you have the heartattack feeling? Would a heating pad help?
Sorry guys now I know their is support I go on and on forever. Thank you for being here. Sorry I am a jaber jaw

Today I had a Dr. Appointment, I told him I believe that I have lupus , that I had done much research on the web and that I found that those people with lupus had all the same symptoms as myself. He told me he would do a ana test and if it came back positive that I do have lupus, if not, then it's not lupus. Now I belive that i've read that it is not always nessesary to have a positive ana test to determin if there is lupus . I tried to show him a list of test to do and as I read it off to him, he just acted as if he didn't hear me. Anyway I gave blood, n I have to wait and see what happens. Just a note , I really felt pretty good today when I woke up. I think my latest flair is dissipating. I wonder what that will do to my test results? Lily.

Lily...Get someone who will listen to you, please!

I can get you some info if you would like.

Also, try www.Lupus.Org!

Hugs,
ladybrannon

I was wondering if anyone has the same problems that I do. I was diagnosed with lupus a few years ago, but mine is in the early stages. I was wondering if anybody else has problems with reaccuring infections. I seem to have different kinds of infections constantly. Is there anything that I should be doing to help keep them away besides antibiotics?

Eve n if you are on antibiotics the infections still come. Mine likes to pretend its other things. I find the steroids are what keeps the infections away.

Hope all is well and happy holidays,
mary

Hi,
i have a problem w/ reoccurring infections,too. Over the last 15 months, i've had probably 12 or 13 infections. Five of them were staph infections. My Dr. Is as frustrated as I am. It seems like we can't prevent them from occurring--just treat them after the fact. I have had to go on steroids for several of the infections. Those infections were the respitory ones. Besides those and the staph infections, i've had a kidney infection, uti & sinus infections. I'm looking forward to hear what others are doing who have this same problem.
Lizbet521

Hi weezie! Welcome to the group!

I have to ask...What are your meds? Remember lupus is an overactive immune system ; therefore, a lot of the medicines we take are immunosuppressants. Is it possible that your meds are playing a part in this? And if so, what has your doctor mentioned for you to do?

Hugs!
Ladybrannon

I was told I had lupus at the age of 18 after having my first child, they told me it came from my c-section and stress threw labor. I was on meds. For a short period of time then took myself off of them, scared and not knowing how serious this is, and I still dont know. My problem is I cant find a doctor in my area that will take my insurance. No one will help me and no one knows anything about lupus. I'm so tired all the time with now a 2 yr. Old and it just hurts that no one takes me serious or will help. I was hoping someone can help. I know I do have the internal lupus.
Please help.

Welcome to the forum. I've only been posting for a few weeks myself, but I feel that everyone is very welcoming and friendly. I would really recommend that you go back through the forum and read past postings. I went back through and read all the subjects that interest me or seemed pertinent to how lupus affects me. It also made me feel better acquainted with all the other people posting and how lupus affects them.

Have you called your insurance company to ask them for a list of rhuematologist in your area. They should be able to tell you this. If there aren't any close enough you can also try an immunologist. I also think that if there is not a doctor within a certain mile range that takes your insurance they have to pay for someone within a certain range.

I was diagnosed 11 years ago. I was sick for many years before they figured out what the problem was or how to treat me without doing more harm than good. I was hospitalized 3 times for a combination of adverse drug reactions and interactions ( the doctors faults), dehydration and malnutrition caused from months of throwing up constantly and not being able to eat because of uclers, fissures and lupus itself. After a long time, working my way through a few doctors until I found the ones who would listen and treated me, not just my lupus, I found a way to live that is as much preventitive as it is required not to get sicker. I am happy to say that for the past 5-6 years, until recently, that I was able to live a relatively normal life. Unfortunately for the last 6 months I saw all of that coming to an end, as i've had a pretty serious flare.

Good luck with finding help, and if I can every help from here let me know. I usually check in every couple of days.

Mia

Hi everyone,
i am glad I came across this forum as it assumingly will help me through this emotional time between first diagnosis and finding out shortly which type of l.E. (discoides? Systemic?) I will have to deal with. And the time beyond.
My first post you can find under "new member introduction".

And I kindly ask you to look up matt's post under "leukemia"!
If you can help him in any way- p l e a s e do so!
Nothing is worse than not knowing at all what's going on and being kept away from information.
I believe a lot of you do agree!
Thanks!
Cori

Hello,
I am new to this site,would like to make friends, I am single and suffering from lupus for the past 12 yrs.I also have pulmonary hypertension which was diagnosed 5 yrs back.Just a doubt,is pulmonary hypertension because of lupus?And do anyone one of u have ph in the group.What is the best tretment for lupus ? Thankyou you and looking forward to have friends.
Bye ,with love and prayers,
suma :d