It's World Lupus Awareness Day: A Day in My Lupie Life

May 10th is World Lupus Awareness Day, so I thought I would write a post today. When I thought about what would be useful to write about, I decided to simply write about what a day in my life looks like. Yesterday was a great example because it was busy, filled with great things, things I enjoy, things I wanted to be doing--and yet, I was trying to psych myself up through the entire day because I was fatigued and in pain.

I started my day, turning off my alarm, and then falling back asleep for about 40 minutes. It didn't make me late. I just go ahead and account for about three hours of getting-ready time so that there is a cushion for my Lupus-related slowness. I have been so busy lately, I haven't been getting enough sleep--maybe six, seven hours a night when I personally should be getting about nine. So I'm tired when I wake up. With Lupus, I'm often already tired when I wake up no matter how long I've slept, so this is why I give myself so much time to get ready in the morning.

Anyway, back to my day. I did my morning meditation and fell asleep during the session. It probably didn't help that I was so tired, I chose to meditate lying down, with only my head propped up. Let's face it--I was really looking for another round of sleeping.

When I did get up, I worked on my Interfaith Love Quote of the Day, which is something I do on my ministerial Instagram account: @revmercyibarra. I love doing this. It's now part of my spiritual practice, along with meditation (when I do actually sit up and stay awake), and drinking my decaf (as a Cuban, coffee is sacred and I will have it even if I can't have the caffeine).

After breakfast, showering, and answering business emails, I was off to my monthly rheumatology appointment. Last month, I was showing signs of increased Lupus activity. My joints were swelling, I was developing the tell-tale Malar or Butterfly Rash, my hair was falling out, and I was dealing with even more fatigue and pain. My rheumatologist put me back on a short stint of Prednisone to calm everything down. This month, she could see that things had calmed down, but I also still had a lot of actively tight Fibromyalgia tender points. Because of this, after our usual discussion of symptoms and her checking of my joints, skin, and hair, she gave me a couple of cortisone shots in the hardest tender points, which at that moment were the ones in my shoulders, right under my neck. I also had my monthly blood and urine sample collection so that they can monitor whether the Lupus is actively causing organ damage. Last month's results looked good.

So, I'm not going to get into as much detail about the rest of the day, but I just want to give you a picture of why I ended the day in so much pain and fatigue.  I live in the Silverlake area of Los Angeles. My rheumatology appointment is at Cedars-Sinai, which is in Beverly Hills. That's about a half hour of driving. I then had to drive to a teacher professional development meeting at the arts school where I teach Flamenco dance. The school is in Santa Ana, which is in Orange County. From Beverly Hills, the total commute is about an hour and a half.  After the meeting, I had to drive to Alhambra to take a Flamenco workshop with an artist visiting from Spain. That was another hour and a half of driving. About halfway through my drive, the pain started. I could feel my legs tensing up, my jaw was tight, my neck was tight, and I had a headache. My body wanted me to go home. I spent the entire rest of the drive coaching myself to go do something I really wanted to do, fearing I wouldn't be able to do it.

When I got to the workshop, it was great. His dance style and musicality were amazing and I was so happy I was there. However, I was secretly in pain the entire time. This burning pain and stiffness would ride up my legs every time we picked up the pace of what we were doing. I was having a hard time catching my breath. I was getting hotter than usual and light-headed. Somehow luckily, every time I thought it was time to sit out, we would slow down. We took breaks right when I needed them. I wanted to cry because I loved being there and was happy I could push myself through it, but I was so sad that I needed to push myself through it, and scared about how much would be too much.

I survived the day and went home.  All in all, I drove a total of 91.9 miles, equaling four hours of driving on top of two hours of dancing, plus my appointment and meetings.  I started my day at about 7 am and didn't get home until 10:00 pm. This can be normal for a lot of people, but probably isn't something I should be doing regularly. My body was screaming at me at the end of the day and I had to take my nightly dose of pain medications and rub CBD balm and spray almost everywhere, so that I could fall asleep.

Part of my spiritual practice includes an end-of-the day reflection on the things that I was grateful for that day. Once I got the pain calmed down, I reflected and listed that I was grateful for my rheumatologist who listens to me and supports me, a job teaching kids the art form that I love so much, the amazing women who are my colleagues at the school, seeing friends I haven't seen in a long time at the workshop, dancing, Flamenco itself, a great workshop that was fun and inspiring, and my body. I am grateful for my body because it does so much for me. So I'm going to keep doing what I'm doing for as long as I can keep doing it, knowing that I just need to take extra care--eat right, stretch, exercise, drink lots of water, and fit in some more sleep. My life is filled with many things I love and I'm going to fight like the Lupus Warrior that I am, to defend the life I love.

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If you have a chronic illness, what do you do that is hard to do even though you love it?  What are you grateful for?  Feel free to share in the Comments section below.