02-04-2009, 09:46 AM
Hello everyone my name is Linda. I am 48 years old. I was just diagnosed with Lupus four months ago. I am a nurse and work for a company where I do education over the phone. I love my job and actually work from home which has been a life saver. I never thought I would get Lupus. My mother had Lupus but was able to be well managed for years. I was diagnosed after having a routine physical and my doctor thought I needed extra blood work due to some symptoms I was having. I have been under a lot of stress in the past year and thought most of the symptoms were related to that. So now I know what the problem is and am finding that I am frustrated, scared, lonely, afraid and just mad. I was diagnosed with Lupus, Sjogren's, Antiphospholipid Antibody Syndrome, Hashimoto's-Hypothyroid, Fibromyalgia and insomina. Some of my symptoms I have had for years but of course never put two and two together. I have even been tested several times for Lupus and the tests were always negative. I have been put on so many drugs I seem to be taking them all day. I am glad I have found a online support group and am hoping to be able to talk about things and learn from everyone.

02-04-2009, 12:46 PM
Hi Linda! My names Jeannette and im a 36 yr old mother and wife whos quite ill these days :? I'm pretty new here too! It's a great forum,i read it for months before finally joining. I'm glad I did,i dont feel so alone anymore!

Its interesting how you were tested several times for lupus and they were always neg. Im going through some of that right now and im tired of my dr. acting like im a hypo!

I keep having to push her for what im having done right now with specialists.

One said "omg obviously something is wrong with you girl"! Yeah,tell me about it! ive had sympyoms for yrs 2 but the past @ have been VERY DIFFICULT. Thats when my husband pushed me to go to the dr. He was getting scared from how i was feeling and acting. I have just about every symptom except the rash.

Hope you feel better for joining :D

02-04-2009, 03:51 PM
Hi Linda,

I'm Rob, I'm 41, and I was diagnosed with lupus 5 years ago. I spent years dealing with the strangest of symptoms. Being a guy, Lupus never really was suggested as the cause of my problems even though my mother was diagnosed with SLE back in 1990. After all, it's a woman's disease. Wrong answer, I have SLE. Like you, neither my Dr. or myself put the pieces of the puzzle together at first.

I was very much an outdoors person. Hiking, clmbing, camping, whitewater kayaks, I was into all sorts of stuff (still trying to be in some of it). The odd reddish welts I would get were always written off as nasty bug bites. My fever, and flu like symptoms after being out in the sun for a day were attributed to the fact that I am very fair skinned and I am light sensitive. The sore joints, well, hike the Grand Canyon twice in one summer and what do you expect? Sore joints. Finally the pieces of the puzzle came together, and I was diagnosed with SLE in 2004.

Frustration, fear, and loneliness are hard to deal with, and so many of us have those feelings. I think, people who have Lupus can only be really understood by others with the same disease. It's really hard to meet and talk to others with lupus in our day to day lives. That's what makes a place like this so special. We can come here and talk to others who understand. You will never be told "it's all in your head" here. This is a safe place where you will never be told you are a hypochondriac. You are here because you have a real problem, and you need real help, and real answers in order to control your disease and live your life. Welcome to our group, and please make yourself at home here.

02-04-2009, 04:02 PM
Hi Linda and welcome :)

I'm 48 yrs old and not diagnosed as yet. My mother also had lupus and my sister is diagnosed but is in remission...YAH!

I've had symptoms since I was in my teens but was never really tested. Was just told that I was being "watched".

A couple of years ago I suddenly developed serious joint issues. I went for blood work and an ANA test from that blood work went missing. It turned up last year and it was possitive. I was sent for further blood work and it came back boarderline and negative.

I have had malar rash and butterfly rash (which never really goes away) fatigue, headaches, sun sensativity and a few other goodies.

This is a great board. Very warm and supportive.

Glad you found us.

02-04-2009, 05:19 PM
I just wanted to say thanks to the warm welcome, I really think I am going to like it here. :) I think everyone is right, it's hard to find support anywhere locally and if nothing else I can always curl up with the laptop and enjoy new friends. I think it's been hard for me with the diagnoses most because I didn't just have one I have to deal with the overlapping immune diseases. How fair is that? I went from taking a few routine medicaitons to like 36 a day. Most of this winter I have been on antibiotics and I really must say I AM SICK OF THEM!!! I get one infection after another. Right now my last check up the doctor told me my liver is starting to look bad but then it could be the drugs that is affecting it. Crap-you can't win for losing sometimes. I try to stay positive and keep my spirits up. Like I said I have been under a lot of stress, my husband was seriously ill this year and almost died twice. Now is home dependent on oxygen so I am his caregiver. My mom died just a few weeks ago from COPD and Lupus(which really makes me feel great about having the disease too). I am a nurse and everyone thinks that I can handle everything but it's not that easy. I am never sick and I don't like being sick. So really this is all new to me. Am I sounding like a big baby? I guess I probably am. Anyway I want a place that I can say what I want about this disease and not be treated like I have a disease. Does that make sense? I have started a journal I figure I can write down thoughts, fears, symptoms, etc and it has helped me also. I am learning to slow down in life which I have never done to much of. I also want to enjoy everything I can and life itself. I think have a support system that you can vent to and find out how others are living with the disease is going to be helpful.

02-04-2009, 06:24 PM
No Linda you are NOT sounding like a baby.

You sound like someone who has had a full plate to deal with and you're looking for a rest and some support.

You've had a rough go of it and more than a stressful year. And of course lupus LoVeS stress.

Now is a really good time to be extra nice to yourself and do all the right things for your body.

So sorry for your recent loss of your mother. My mother passed away when I was 27, I still have a sore heart from that.

I'll keep your husband and yourself in my prayers, hoping for continued improvement for him and yourself.

02-04-2009, 07:31 PM
Hi im new here my name is Diana and Ive had lupus since I was 13 im now 27. It feels good to find a place where I can talk to others with the same or similar situations. Well right now im kind of frustrated, because besides developing rheuamatoid arthritis and having to deal with it for years. Its been more frustrating to me that Ive had three miscarriages after having my first born. I was wondering has anyone been through this and can give me advice on what to do. My first pregnancy was completely healthy, afterwards is when this started to happen.

02-04-2009, 08:49 PM
Hi Linda,
Welcome to the site. My name is Kathy. I have SLE, Lupus, Sjogrens, Pernicious Anemia and several other auto immune disorders. I hear where you are comming from. I have had the Lupus for most of my life. I just turned 50 last month. I did not get diagnosed until I was 36 years old and that was only because the Lupus nearly killed me big time and then the sorry doctors were forced to listen to me. What is sad is the Rheumatologist told me that he believes that I have had Lupus since about the age of 5 years old. He told me that I have one of the most classic cases of Lupus that he had seen in all the years of his practice. I will never figure out how so many doctors flat out missed it. Oh well. I am hanging in there and doing the best that I can. I hope that you keep posting. There are a lot of great folks that comes in here with a vast wealth of information.


02-04-2009, 09:44 PM
Hello Linda and Welcome..... :D

Glad you decided to join us. I'm 45, been living with Lupus for more than 25 years. My father has Hashimoto's. (For those not familiar, it's a thyroid disease). He's been well managed by an excellent specialist for 10 years now.

I am so very sorry about your mother. :cry: Gentle hugs to you.... Mothers are the most important people in the world, IMHO. I'm a mom to 2 'miracle' children. :D

The first 5 years after my diagnosis were the toughest. I was in and out of the hospital more times than you want to count. And I remember hating the part where I had to take 27 different prescriptions a day. That is so disheartening....so absolutely frustrating! But once my Immunologist got things in control, things began to calm down. It took time for me to understand the 'stress' thing, and to learn how to manage my stress and not overdo it. Because I was 18 when diagnosed, I also fought the 'avoiding the sun' thing. I just didn't want to believe that "all of a sudden", I couldn't go out in the sun anymore. But those two things ended up being the #1 culprits in causing my worst flares.

I have been in remission for 12 years now (and counting), and I am thankful for every day I am given of remission! If I could share anything with people new to a Lupus diagnosis, it would be to recognize early on, that stress (of all kinds) is one of the worst things for a person with Lupus. None of us can avoid stress, but if you can recognize it when it comes and work to take extra care of yourself during those times, you will be better off for it. The hardest thing for me to learn was how to truly slow down. I was always trying to do too much. Now, I survive by taking it 'one day at a time', each and every day. No more. No less.

Every single one of your feelings you list after you were given your diagnosis are completely normal. I'm willing to bet every one of us with Lupus have had them. I went through some of them more than once. :)

Hang in there. And come and 'hang out' here. We'd love to support and share with you.

Looking forward to your contributions..........


Lori :P

02-05-2009, 08:04 AM
Hi Dianita;
I think that your post was possibly missed because you posted in the middle of another newbies post. I just wanted to welcome you here to our family and to tell you that, yes, there are members here who have dealt with (or known someone who has dealt with) miscarriages and pregnancy with Lupus.
It is very possible to have successful pregnancies and healthy babies while being a Lupus patient. Doctors usually like for you to wait until your symptoms are very well controlled or until you've reached some from of remission before you try to become pregnant. Many Lupus women suffer from antiphospholipid antibodies and it is felt that this condition contributes to miscarriages in Lupus, especially in the second trimester because of their increased risk of blood clotting in the placenta. Have your doctors ever tested you for this symptom? If not, perhaps it is something you should look into before you decide again to get pregnant.
Hopefully, others will be along who can give you personal experience and/or advice about pregnancy and Lupus. In the meantime, welcome to our family and I am sure that you will find friends here and so many wonderful people who are here to help you in any way that we can!

Peace and Blessings

02-05-2009, 08:05 AM
Hi Linda:
I see that you have been well taken care of and made to feel welcome by many of our members here. I just wanted to make sure that I welcomed you to our family also.
As you can see, this is a place that is filled with caring, friendly, and knowledgeable people. I am glad that you are here with us.

Peace and Blessings

02-05-2009, 11:53 AM
hi linda,

just want to send you a big hi and welcome to the forum. I, like so many others, feel very comfortable talking with each member, and I soak up as much information as I can from all of the posts.

again, welcome,

share a smile today,

02-05-2009, 06:40 PM
Welcome Linda, you will find many ears to bend on this forum. Although I may not always have the answer (according to my husband he's still waiting to be proved wrong :D ) I will always listen and so will everyone else here. Welcome.

02-05-2009, 08:59 PM
Hey Kathy can you explain what Celiac diet is? I have never hear dof it but you mention it. Thanks :?:

02-06-2009, 09:47 AM
Hi there! Welcome, I too just really got here. I have been reading for awhile but just now started posting. I am also a nurse and that is such a hard thing for me to balance, it takes so much of my body to be a nurse and I just have no energy, it is very difficult!

I look forward to getting to know you!

I am a diabetic since age 12 and they told me it was caused by my body attacking my pancreas. Interesting that was my first auto immune experience I guess!

Then at age 29 I had my son and a few months later started having joint pain, bruising, fatigue, etc. - had positive ANA. The joint pain has gotten worse, I have tingling, cold digits sometimes, my knees give out sometimes, my joints swell, I am fatigued most of the time, having horrible dental problems right now, foggy brain sometimes and dermographia.

Wishing you the best!

02-06-2009, 04:36 PM
hi lmangusrn

The Celiac diet is basicly wheat product free. Wheat contains glutons which coat the intestine of people with celiac's and makes it so they can not absorb nutrician. Basically they starve to death.

My sister has lupus and was diagnosed with celiacs almost four years ago.

The sysptems of both conditions can be very similar and she kept putting everything down to lupus.

I had not seen her in a while, one day I called her up and asked her out for lunch.

I almost fainted when I saw her. She had lost sooooo much weight I was scared.

Nagged her into going to the doctor, she had lost so much of her bone mass due to the celiacs blocking nutrician.

So :lol: to answer you question....no wheat products AT ALL! And you would be suprised what they put wheat in.

Colgate tooth paste as filler, processed meats, restauront chilli, and of course beer and some alcohol.

She has been on the celiac diet for years now and looks and feels much much better.

Sorry for the ramble, but I almost lost my sister over this...so I'm a bit passionate about it.

Her bone mass was so bad, she dropped a pie and it hit her ankle, and broke it. And ummm pie is out of the question too.

and cookies