May is Lupus Awareness Month. I was diagnosised on August 1, 2017 with Lupus. It was a very long road and so many tests to finally get an answer to what was wrong with me that it was a welcome answer; someone confirmed that indeed, something was very wrong with me and it wasn’t all in my head and I wasn’t just lazy.
Lupus is Latin for Wolf. The first mention of lupus in history dates back to the 13th century physician Rogerius describing a rash on a face as similar to a wolf bite. Lupus can be contained to the skin in rashes and lesions, called Discoid Lupus. Lupus also is often manafested with a “Butterfly” or Malar Rash across the cheeks and bridge of the nose, thus associated with a butterfly. By 1904 Systemic Lupus Erythematosus (SLE) was firmly established. SLE is a chronic autoimmune disease that attacks different parts of the body. It is unpredictable and misunderstood, often called “the great immitator.” No two cases of lupus are alike. Common symptoms include joint pain, skin rashes, debilitating fatigue, brain fog, low fevers and inflamation. Most people with lupus don’t look sick. Lupus can affect any organ or tissue, from skin, to joints, to heart or kidneys. Because the cause is unknown and there is no single blood test to diagnose more than half of the people with lupus have suffered at least four years and saw three or more doctors. There is no cure.
I have had Hashimoto’s Thyroidistis since 2009 (though I suspect I have had it much longer). This autoimmune disease attacks the thyroid. The symptoms include major fatigue, hair loss, and weight gain. Keeping my thyroid monitored and adjusting thyroid medicine as needed became part of my life. For a few years it was well controlled and I lived a very normal active life. Suddenly, in 2013, the fatigue came back with a vengance. I had extra thyroid tests done, including ultrasound on my thyroid. There were a few small nodules, but nothing significant. My labs showed my medication was the correct dose, yet I was not well. After insisting on being tested for Mono, that test came back positve for reactivated Epstein-Barr Virus. My doctor was surprised but she gave me a prescription for an anti-viral medication and sublingual B12 to see if it made any difference. It did not. She said I would have to wait it out. At this point I had started running as a stress reducer and to try to lose some weight. It was very slow going, but it was helping. I guess the EBV went away or became dormant and I was feeling much better again. I started training for a 10K, then a half marathon, and finally a marathon. I even got a BQ on my second marathon! I was doing great.
We moved to Amarillo, TX in December, 2015 and I ran my first trail half marathon in Palo Duro Canyon in May, 2016. I was smitten by trail running. I ran the Palo Duro Trail Run 50K in October, placing 3rd female overall. I quickly looked for my next 50K and chose Monument Valley 50K in March 2017. It was everything I could have wanted in a trail run (except maybe for all that sand…) I felt overly tired after this race, but attributed it to needing more recovery after my race. I also had a strange rash on my face. After a month of overwelming fatigue I knew it was time to head back to the doctor. I can’t explain this fatigue – I was sleeping well, and long hours, yet I required a nap every day. I had a very hard time focusing on anything! let alone work or the kids or my poor husband. My PCP had labs done and sent me for a sleep study. All of that was normal. I saw my endocrinologist to check on my thyroid. He did all the tests plus another ultrasound and everything looked normal. When everything comes back “normal” but you don’t feel normal, you wonder if it really is all in your head. When I initially saw him, I had a positive ANA in my lab work which indicated another autoimmune disease so he referred me to a rheumatologist. August 1, 2017 I met my current doctor, and though he gave me some bad news, I wanted to give him a hug! I started on the standard treatment, Plaquinel, which is an anti-malarial drug. When I went back in for a check up 4 months later, I was a changed person. My hands didn’t hurt anymore, I could squeeze out a sponge and wash dishes without any trouble, I could think clearer, I didn’t need a nap every single day, and I could run. Running has been such a huge part of my treatment for depression. I walk a fine line between running enough to stave off depression, but not too much as to stress my body and throw myself into a lupus flare.
Not quite a year of treatment, I have come back to running. I was able to run my 3rd 50K last month and though it was much slower than my first, I thoroughly enjoyed it and was so grateful to be running again! I still have pain but most of the time it is managable. The fatigue is still my worst symptom, and try to rest or sleep when I can.
The hardest part of lupus to me is the guilt. There are so many things I need to do or would like to do but I chose rest more often than not. Most of my decisions are based on staying home and low key whenever possible. Except for running. If I can go for a 10 mile run, why can’t I do the laundry? go to the grocery store? work full time? meet a friend? I feel selfish. My excuse – I need to run for my sanity. And honestly, the more I run (to a point), the better I feel. The slow repetative movement of running releases those wonderful endorphins, which actually do reduce the perception of pain, as well as making me feel better mentally. After a run, I do have more energy for a few hours at work or a couple of errands. But that’s it. I am depleted rapidly. I hate that my mind wants to go and do but my body says no.
I don’t know why I have these diseases. I am human and I do despair sometimes. I feel sorry for myself. I cry in frustration and pain and fatigue. But I do know I can trust God and all of his promises are true. He never promised a pain free, illness free, trouble free life. God gave us Jesus. And with Jesus I can have it all! He came that I might have life, the abundant life as John 10:10 says. I keep going back to my faith, because with it, I have hope.
We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love. Romans 5:3-5
My struggles can bring me joy if I allow them to point me to God and to become more like Jesus, “who for the joy set before him, endured the cross.” (Hebrews 12:2) I relate my spiritual walk with my running life. I want to develop endurance – for it helps me to push beyond what I thought possible, in miles and in this illness. I want to develop character – maturity and strength of character, so that I am not bitter or lead a life of complaining. I need hope! Hope gives me confidence that I can finish the race and hope in the future because it will not disappoint.
For Lupus Awareness Month, Tonia Smith has made a video she gave me permission to share here:
I’m also linking the lyrics by Lecrae, because they really address my thoughts! Read them here.