Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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New to Lupus

Hello everyone, I am new to this site as well as new to lupus. In Feb of 2013 I became very ill, after going to the doctors and hospitals and being told I had brocades, being put on several medications, steroids and inhalers it got to the point I was coughing up small amounts of blood. I went back to the hospital were I had an oxygen level of 84. I was taken back in the ER without waiting, they put me on oxygen, and gave me several medicines in my IV. After doing x-rays I was told I had pneumonia and my lungs on the bottom part had collapsed which was the cause of me coughing up blood.

After taken all sort of meds by IV running CT scans, blood draws every few hours around the clock and breathing treatments every two hours while wearing oxygen (level 4) around the clock nothing was working. They sent a pulmonologist in and they performed a bronchoscopy on me. It showed my ANA levels were positive, changed my meds again and sent me home 4 days later on breathing treatments, lots of meds and follow up appts.

Going forward a couple months my pulmonologist did a breathing test on me which I failed even though I seemed to be doing better other then giving out of breath from time to time after taken a shower or walking to the mailbox and back. The pulmonologist told me he felt with my ANA levels coming back positive in my lungs that lupus had attacked my lungs and that was the reason they were having such a hard time getting me better before and after going into the hospital. So he sent me to a rheumatologist. The rheumatologist did an exam on me and sent me for a ton of blood work (18 tubes) at the hospital. On my next visit they said my ANA was still positive but they were not 100% sure it was lupus because everything else was normal but they wanted me to try a couple medications that help with lupus to see if it made me feel better.

Due to work I missed my last appointments with my rheumatologist and pulmonologist but my pulmonologist called me and said while in the hospital they had done a echocardiogram that showed my heart was enlarged on the right side and he wanted to order another echocardiogram which I have had the test ran but have not had a chance to go back to get the results. I do have an appointments to see both Drs. on the 15th of Aug.

While in the hospital in February my husband of 16 years filed for divorce because he did not want to take care of a sick person, and only visited me a total of 3 times. (I was in the hospital 14 days), kicked me and our 14 year old daughter out of the house and moved his mom in to take over our home. I finally excepted he was not going to let us come home so I have hired an attorney and purchased a house in a new area about 30 mins from him so we were far enough away from him not to want to bother us but close enough to be able to see our daughter if he wants.

Since February I have not been the same. I work 10-12 hours a day, come home and get in the bed due to pain throughout my body. I have started having major headaches, pretty bad depression were I just want to cry but don't because it will upset my daughter and I shake a lot throughout my body. When it rains my head kills me and my legs hurt from my toes to my hips, other days my chest almost feels like my chest is caving in. But it gets very tight around the left breast area almost like a complete circle, and sometimes that same feeling goes to the right breast area as well.

Within the past month or so I don't want to get out of bed, I literally stay in bed all weekend other then to take a shower. I sleep mostly but other times I look at the walls, I don't turn on the TV in my bedroom, honestly I could care less about what's going on and have distanced myself from everyone expect my daughter because I know she needs me. I go to work and put on a fake smile for everyone to see till I get to my office an close the door as I am a billing manager for a local doctors office here in Athens, GA.

I have been having issues getting off at work which I explained earlier, well my manager kept making remarks to me about why I don't get on disability since I have lupus or why do I shake like I do, etc. On July 30th I come into the office to find my manager boxing my things an told me I was terminated because I have been acting "different" since I got sick. Honestly I think it's because she was upset about me taken the 15th off to go to my doctors appointments and she did not like the fact I may have lupus.

So here I am, really not sure what to do. I am not 100% sure I have lupus, but I know I am taken a lot of medications the doctors have given me. I am desperately looking for a job because I have to support my daughter and I, and to make it worse I'm still trying to get through this divorce, do not have health insurance yet (cobra will kick in soon I hope), and I am not sure with me looking for another job if I have to tell them I have lupus or not since I am not 100% sure even though it sounds like I do from reading other information on lupus.

Sorry for the long message but I was told support groups can sometimes help so I thought I would give it a try. People from the outside looking in can sometimes see things a whole lot better then someone in the situation I know. Any feedback would be helpful, I am not trying to throw a pity party for myself, I just can't understand why life has just caved into a storm since I got sick in Feb of 2013. Before then I was active running 100 places going 20 different directions at once and loving every min of it. Now my family and friends say they don't know who I am anymore, and to be honest I am not sure I know who I am anymore either.

Thank you for taken the time to read my message - Christie



Hi, Christie. Welcome to this forum of nice people. I hope you will be encouraged here, as you certainly need some uplifting. I'm still learning about lupus myself, so I'm not very helpful. But if you read some of the older posts, you will learn a lot.

As for insurance, according to my experience, there should be no disruption when going from insurance coverage to Cobra, unless you don't pay the premiums. Because I have another autoimmune disease, no insurance provider would accept me once Cobra ended. So during 3 years without insurance, I put the cost of an insurance premium into a savings account each month to pay for my medical expenses. Then someone on another forum told me about pre-existing condition insurance. Here is a website for that should you need it. Be sure to look under your state of residence for specifics that apply to you.

You have had a very difficult year, and I'm so sorry. Wish I had a magic wand that I could wave to take away your problems. But I don't. However, I can and will pray for you. Please keep us updated on your situation--both job-wise and health-wise. Best wishes to you.

Hi Christie,
I will write more soon, but want you to know that even though we've just met you, we know exactly who you are, and we love every single thing about you. Never change ... you're perfect just as you are.

Welcome to the DS family :)


Thank you both so much!

I just posted this for another newly should read it and pass it along to friends and family:

Hi Christie, you are not alone. Having lupus has definitely changed my life. I now say this is the new normal for me. My family at first really didn't understand how sick I really was cause I look fine outwardly. At times they still invite me to go to the beach with them for family get togethers, and I have to remind them that I can't be in the sun or heat. My kids are all grown and I do have twin grandchildren (15 month's old) and many times it is hard for me spend time with them cause of my lupus. It can be so depressing at times.... I am so sorry that you are going through such a hard time right now... your husband doesn't deserve to take care of you! Sometimes people that are closest to us can say things that hurt..Take it one day at a time. We are here for you! Hopefully your team of doctors will soon find what exactly is going on and get more concrete answers. Take care and you are not alone!

Christie, take care of yourself. Everything you go through leads you to your next place in life. I know that is probably hard to hear right now and probably doesn't make much sense. But it might someday when you look back.
How did you make out on the 15th?
Be gentle with yourself. Try to go for walks. Be there for your daughter. Maybe the days of working 10 - 12 hour days are a thing of the past? You will find new and engaging activities to replace that time that you might find helps lift your mood too. I started doing some art work that I never could do in the past. It is very therapeutic and fun.
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