Learning to Live with Lupus

So, this is my first post on my new blog and my purpose is to provide a positive outlook on a lupus diagnosis. I am 30 yrs old and have only been diagnosed with lupus for about 2 weeks now. I had growing suspicions that my symptoms were coming from lupus but the final blood test finally came through with the news to confirm my suspicions.

My first symptom was really apparent in July 2011. I went to have my hair highlighted and cut and my stylist noticed 3 bald spots in the back of my hair. They weren't really apparent to me since I have long hair, but she was really concerned about them. She took a picture with my cell phone and advised me to see a doctor. I hadn't been to the doctor for a physical in a while and our new insurance for 2011 provided for a well check so I made the appointment. I saw my family doctor in August 2011 and we talked about the hair loss after the well check. He ran some extra blood tests to check my thyroid and autoimmunity. He also sent me to a dermatologist to treat my hair loss.

I went to my dermatologist appointment with my bloodwork in hand. The bloodwork came back as abnormal ANA, meaning signs of an autoimmune disease. There are several out there so this was not very conclusive. The results my dr office sent had an anotation that said - where is the reflex ANA - so I figured there was a mess-up somewhere. My dermatologist was able to help with the hair loss and the majority of it had grown back in our six week check up. She gave me Rogaine for men (only if a woman is not planning on conceiving), a steroidal foam called Luxiq, and a vitamin (Biotin). Using all 3 of these helped my hair grow back in almost all areas on my head. I decided not to go back to the doctor until I had more symptoms so I waited.

By the 3rd week of October, I went back to my stylist and she could see the hair growth. She continued to urge me to get some closure on my blood tests and make sure what was going on. The next day, Saturday, we took our church kids to the pumpkin patch. We played on the farm and went on a hayride to the pumpkin patch. By the time we got home that afternoon, I was starting to get sore. I laid down to take a nap while the boys (1 & 2) slept. I could barely get out of bed when they woke up. It felt like I had the flu - sore back and neck - but I wasn't running a fever and didn't really feel sick. I dealt with soreness in my back and neck for 3 days and finally called for another appointment.

I went to the doctor afraid he was going to tell me that I was being silly for getting concerned. He asked about family history of auto-immune diseases - I have a sister with Rheumatoid Athritis and an aunt with RA or lupus (I'm not sure) - so he sent some more blood to be tested. He said there was a screw-up with my last blood test and not every test was run that was ordered. This time my results came back and said that my dNa antibody was abnormal but the anotation on the paperwork said lab results are normal... It really confused me. I was still debating on what to do when 2 weeks later a nurse called to tell me the final blood test had returned and it was positive for lupus. So they referred me to a Rhuematologist. My first appointment is November 23rd, so I am very interested in what they have to tell me. I thought it was very interesting that the day after I talked to the nurse, my mouth broke out in sores (another symptom).

So it has been 3 weeks since the first flare up and my symptoms have been hair loss, back and neck pain/aches, and mouth sores. I'm not sure how long this will last but I am making it so far.

From my research online I have found:

There is no cure for lupus. It mostly affects women. It runs in families. Everyones symptoms are different. There are triggers that will bring on a flare up. Diet, exercise, relaxation and positive attitude can help reduce the symptoms.

I will let you know what the rheumatologist says...