#butterflywarrior

My Diagnosis 2016

I came down with a high fever at first and headache. After a 3 days I decided to see my PCP. They told me to give it a few more days and if I don’t get better to come back. Well day 7 came and I went back. The doctor did a chest x-ray and ran some labs, all came back normal. I was very annoyed at this point and asked for antibiotics for a sinus infection thinking maybe that could be it since I constantly suffer from allergies (I should not have asked for antibiotics-don’t do this). After about 4 days of taking the meds I broke out in a rash. I called the ER and they advised me to stop the meds and take Benedryl. I followed their orders and by morning I still had the rash and it had spread all over my body! OMG I’m freaking out now and don’t want to touch my kids thinking I could possibly infect them with whatever the heck this was. I went to the ER at this point and was praying they could figure out what in the world was going on. Day 12 of fever and headache and now this body rash. They did a few more tests, said it was nothing and to just wait it out. That was over the weekend so when Monday came I went back to my PCP. She referred me to an infectious disease specialist who I saw the next day. The rash was gone but had been replaced by another symptom... the only way I could explain it was that it was if I was looking through a dirty window. My vision was off and everything looked like dirt was all over it. The specialist did so many labs that I felt like a pincushion. Day 16 and my fever and headache finally went away but my vision remained dirty for weeks after. The specialist had me come in for my results and this is when he told me I have lupus and referred me to a Rheumatologist. The story goes on from there but we will save that for another day.   

What is Lupus? 

That’s the first question I asked myself after getting my lab results from a doctor that literally said “Well, you have Lupus, but I don’t know anything about that so I’m sending you to a specialist.” Lupus?!?! Being a House fan, the only mention of Lupus I have ever heard is when the amazing Dr Gregory House insisted “It’s never Lupus.” Well apparently this time it is. With technology at my fingertips, i started googling on my walk in the parking lot to my car. I sat in my car for about half an hour looking up information about this diagnosis I was just given. It was so much to take in and I didn’t understand how I could all of a sudden have this debilitating disease. At the time I had a 10 year old son and a 6 month old daughter. I didn’t have the time or patience to be sick with something that couldn’t just go away with antibiotics. 

Here is what I have learned over the years-now 3 years since my diagnosis:

Lupus is an autoimmune disease where the immune system is hyperactive and confused. If you have lupus, your antibodies can’t tell the difference between an infection and healthy tissue so it sometimes decides to fight something that didn’t have anything wrong in the first place.

Some of the systems affected by lupus and other autoimmune disorders are the skin (Butterfly Rash), joints, and internal organs such as the kidneys. Lupus is an inflammatory disease. Inflammation is caused when the immune system is fighting an infection or injury. This is why when you sprain your wrist the area looks swollen and when you are sick your glands in your neck swell. Anyone can get lupus but some that are more at risk to develop the disease are women between the ages of 15 and 44. I was 28 at the time I was diagnosed, but after learning so much about the disease I believe I already had it years before my diagnosis. The even crazier thing about lupus is that no two patients are alike. I may have joint pain and occasional fevers, but someone else may have none of those and suffer from kidney or other organ failure. 

There are different types of lupus:

Neonatal Lupus- children born from a mother with lupus

Systemic Lupus Erythematosus (SLE)- This is the systemic lupus affecting the systems of the body with a wide variety of symptoms that can be mild or severe.

Drug-Induced Lupus- said to have been caused by use of certain medications

Common Lupus Symptoms

Some of the most common lupus symptoms are:

Extreme fatigue

Joint pain

Fever

Muscle pain

Hair loss

Skin sores and rashes (Butterfly Rash)

Mouth sores

Skin sensitivity to sun

Diagnosis

There is not one single test that will tell you if you have lupus. The doctor can run a series of tests based on symptoms and come up with this diagnosis based on your specific case. However, there are some common tests that can help diagnose the disease. If the doctor suspects lupus, they will check your antibody levels to see if they are elevated meaning your body is fighting something.

Antinuclear Antibody

Around 95% of people with lupus have a positive result for the ANA test. However, some people test positive for ANA, but they do not have lupus. Along with other tests, this positive result would help to confirm the diagnosis

Anti-DNA Antibody

The result of this antibody is more likely to be positive during a “flare.”

Anti-dsDNA Antibody

The anti-double-stranded DNA antibody is a specific type of ANA antibody. If the test is positive, it may mean that a person has a more serious form of lupus, such as lupus nephritis, or kidney lupus.

Your rheumatologist will usually check these along with any other labs, ultrasounds, biopsies, etc depending on your symptoms. I see my rheumatologist once every 3 months to check my blood levels. Since I choose not to take the medication she has prescribed (I manage mine with exercise and diet), she says it’s very important we stay on top of my labs to make sure none of my organs become damaged. I suggest you follow your doctors recommendations as I am by no means a doctor. I just choose to avoid meds as long as I am able to and s far it has been working great for me. If you are interested in how i am managing my disease along with taking care of all the daily responsibilities of adulting and motherhood, please subscribe and follow.