Lupus is an autoimmune disorder with a multitude of symptoms. The symptoms may vary from one lupus sufferer to the next. But one symptom is very often a tell-tale sign that you may have lupus; the butterfly rash across the nose and cheeks is often a reason to suspect lupus. So imagine my fear when on the third day of experiencing weakness, generalized all-over aching and not feeling well and I looked in the mirror and discover the rash across my nose and part of my face.
I know two women who died of lupus; I was terrified. Maybe I was even in denial. I was long past the “why me?!” stage, after first being diagnosed with Hashimoto’s Thyroiditis, an autoimmune disease that is different than just hypothyroidism. Although it is the most common actual thyroid disease, Hashimoto’s can really contribute to significant health problems. My case is more severe, with my thyroid function completely destroyed. “Now here I am with a red lupus rash,” I thought.
I would not go to the doctor; I was tired of doctors treating me like I am stupid when I tried to tell them something is wrong. I seemed to get stuck with the doctors who think patients are half brain-dead and just because they are the one with the medical degree, the patient knows nothing. But two days later, I would have no choice; I had to go to the emergency room.
The redness on my face did not go away; it stayed there for two days. On the afternoon of the second day, it began hurting my nose and ears to have my glasses on. I noticed my vision seemed a little off. Just tired I thought, brushing it off…until I looked in the mirror. My face was now swollen and a larger area was discolored. My face was no longer just looking like I had the lupus rash across my nose and cheeks; something was terribly wrong.
At the emergency room, my primary care physician just happened to be working in emergency that day. I was glad to see her. When she first saw my face, her initial reaction was a lupus flare. She explained I could very well have it, especially since I have other autoimmune diseases. I was so frustrated as I lay there waiting on the results. I was always the healthiest in my family and could not understand why this was happening. I was probably more fearful than other individuals may be with the possibility of lupus, since I knew two women who died of lupus.
About that time my doctor came back and told me I did not have lupus. “Oh, thank God!” Things turned into a whole new blur as she started saying something about “elevated inflammatory markers” and she would be right back, that someone from registration was standing by to get me admitted. I was sicker than I realized. Next thing I knew a vascular surgeon was standing there with my doctor telling me how he was going to cut my hair to do a biopsy on the temporal artery in my head. Once again, I was terrified. I thought about the lupus scare as they were explaining about how I had to be awake since they were making the incision in my head. I wondered if I would be better off with the lupus as I drifted off into la-la land from the IV medication, but still vaguely aware of my surroundings since I was awake.
The lupus scare led me to the emergency room and to having my shoulder length hair cut off near my ear and an incision where my hair once was. I did not have temporal arteritis either, a form of giant cell vasculitis, it was explained to me. But I did have small vessel vasculitis, inflammation of the small blood vessels, which are closest to the skin. The inflammation was wide-spread when my face swelled and became discolored.
I fight the ”Palpable purpura,” medical-speak for reddish purple raised, itchy inflamed lesions, that come with the chronic vasculitis, on a regular basis. Like with lupus, when you have vasculitis, your body is attacking itself. The medications help but there is no cure.
Autoimmune diseases often have similar symptoms, which is what led both me and my primary care doctor to initially suspect lupus, given the redness on my face and other symptoms. The only way to know if you have lupus or another autoimmune disease is to get tested. Specialists may be called in to help diagnose exactly what is going on. Do not put it off if you believe you may have lupus. Yes, it turned out that I have a serious condition anyway, but the redness and weakness that someone else experiences may not be lupus or vasculitis and maybe not auto-immune related at all. You could be having an allergic reaction caused by something you came in contact with and you will be fine in a few days. There is only one way to know for sure – never be afraid to see a doctor like I was, facing a lupus scare.