One More Bump in the Road

It has been a while since I updated this blog. A few months ago, I had a sudden burst of motivation. I renewed my WordPress plan, I started practicing teaching Zumba, and I was ready to get back to business. Unfortunately, the Universe had other plans for me. The last week of May, I started to get tired and achy. The joints in my hands and knees were very sore. I was abnormally fatigued but nothing that really bothered me until the next week. I became increasingly tired. I went to the urgent care center and they tested me for Lyme and it was negative. I got even worse as the days went on. The fatigue had gotten to the point where I was afraid my heart was failing. I could not walk 10 feet without feeling like I would collapse. At one point my legs were so weak I was shaking as I took steps. My sinuses were swelling causing migraines. I had pain all over. I was convinced I was going to die.  I went to the ER twice, I had two negative covid tests, 1 head CT, and had over 24 vials of blood drawn in 2 weeks. It was a nightmare.

Based on a tip from my aunt, I had asked for a basic autoimmune panel in the first round of blood work that pointed to an elevated ANA which is usually the first indicator to autoimmune disease. My doctor sent me to the rheumatologist who then had another 17 vials drawn. Initially, all that came back abnormal was a previous Epstein-Barr infection that I did not even know I had. He said some people reactivate the virus under stress. I thought, “great! At least I have an answer”. Then a few days later I got a call from his office saying I had tested positive for autoimmune vasculitis antibodies and I needed to go for a chest CT to check for damage. Thank goodness I was switched to an antidepressant that helps with anxiety because that news was not what I wanted to hear.

ANCA Vasculitis is an autoimmune disease where your body fights its own blood vessels. Depending on the type, it will also attack other areas. I am looking to have small vessel so it can also cause damage to my lungs, kidneys, and sinuses. The CT doesn’t show damage, so he thinks we are catching it early, but I do have an elevated risk of thrombosis, so I have been instructed to start an immune suppression medicine called Cellcept. (3 giant pills twice a day on empty stomach!)


The doctor assures me that without treatment, my body is overloaded and I would still be high risk for Covid so taking the treatment will be no different but I may find relief from my symptoms on treatment and becoming active again will help keep me healthy. I will still have to wear a mask and wash my hands often. I will have to be on top of my family members to do the same for all our safety. I am not going to lie. I’m terrified. I feared getting sick even before I had this diagnosis. Now I’m even more anxious. I can’t even think of sending my children back to school right now. This is all so overwhelming.

I have to look on the bright side. I’ve survived 100% of what life throws at me (and it’s A LOT). If I did not request the autoimmune workup, they would have assumed I had hidden Lyme again and treated me for something I didn’t have. I would have been sitting on a ticking time bomb and who knows what could have happened in the future without catching it.  I will need to work on my stress management which was something I was already working on. It’s more important than ever. I feel like everything is more important than ever but I’m stuck in some twilight zone with a million things to do and care about and no time or energy to do them. One step at a time.

Also, thank you if you are one of the people who are adhering to the guidelines and wearing a mask for the sake of those who are compromised. I appreciate your kindness.

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