In Part 1 of this brief series, Marla shared the long road from obscure symptoms, to crisis, hospitalization, and diagnosis. In this installment, she discusses the ways her life has changed as a result and how she is supported on her journey.
Marla at a party in 2010
My life has changed quite a bit. I now take medication every day, which I hate. Some medication I may have to be on for the rest of my life as a maintenance kind of thing. Because lupus has no cure, all you can do is treat it and manage it. Boooo!!!
I was in denial at first about my diagnosis, but not because I couldn’t accept it. Everything I would read would list these typical symptoms that I didn’t have. It wasn’t until November of 2012 that it all became real.
Out of nowhere, these itchy skin rashes popped up all over my legs and arms. I had a constant reminder every day that I had lupus and I still have these rashes. They have left hyperpigmentation that has yet to fade.
I now have a sensitivity to the sun, and this is a common symptom. So, I have to avoid the sun as much as possible. This summer, no shorts for me . I have to wear sunscreen every day (yes, black people need to wear it too). This has been extremely hard to deal with because I love the sun and now I’m afraid of it. So now, in addition to the rheumatologist, I also see a dermatologist. (Really tired of all the “ologists”). I’ve lost a little hair. I am also experiencing more than usual fatigue, which is also a common symptom.
Most recently, and I say this with a whisper, I’ve noticed a significant decrease in my libido. I don’t know why, but I’m thinking it’s a combination of the medication as well as the psychological trauma and stress of this journey. I haven’t spoken with my doctor about this yet, but I plan to. I mean, I’m only 38.
The hardest thing I’ve had to deal with is the not knowing what could happen to my body next. I didn’t know these rashes would appear, they just did. Will I have the joint pain that is characteristic with lupus? As a former professional dancer and I’m being candid here, I think that would devastate me. I know that I would prevail, but that would be really hard.
Marla (who made her own costume) as Puss in Boots in 2011
Family and friends have been amazing. In addition to educating myself, I have had to educate them. They can be of more help if they know some of what is going on. Some of my friends have referred me to friends they know who have lupus. Talking with them has been a tremendous help.
I have felt alone with this disease and still do sometimes. Lupus manifests itself differently in each person. For me, right now, it is affecting my skin. So being able to relate to someone else has been instrumental in the processing of this journey.
Friends and family members have also turned me on to alternative methods of healing. I’ve incorporated acupuncture, adopted a gluten-free diet, and tried to reduce the stress (a major cause of having a flare-up). Therapy – I know that we aren’t supposed to talk about that, but therapy helps. Having someone not emotionally connected to you provides a different type of support. I have also entertained the idea of joining a lupus support group.
What do you want people to know or understand about lupus?
I would like people to know that lupus is a quiet disease, kind of a mystery disease. Most times, no one would know you are living with it. The symptoms aren’t in your face. For me, I can cover my arms and legs, so no one would know I have these rashes. We have all said we are tired, we say it all the time. But for someone with lupus, the fatigue can be extreme. Those who don’t have it or understand it may not take someone saying they are tired as seriously as they should. It’s not laziness, it’s fatigue.
There is a quote by Maya Angelou that I love:
You are not your lupus, and life continues. You just might have to make some adjustments. There are going to be bad times, but also good times. It’s the looking forward to the good times that help you through the bad times.
I have learned a lot about myself during this journey. I learned how strong I am and how far I can be pushed and still succeed. But at the same time, I learned that I didn’t have to be so strong, trying to get through this alone. I learned how to ask for help. And, I learned how to truly love myself.
I’m home, after a day of inspiration. And like I’ve been for the past few months, I’m tired. I’m not bone tired or weary, but I’ve just noticed that I’m not as energized as I used to be. There are many very specific reasons for that, but they all boil down to one: change.
One day after work, I did handstands and cartwheels in this grass.
Over the past several months, I’ve changed a lot and so has my environment. From my zip code to my job responsibilities, to aspects of romantic and platonic relationships.
Personal goals and professional goals have shifted. Exercise habits have changed. Food. The amount of time I spend in the sun or the ways I engage nature. The amount and type of sleep I get. It’s all been one massive ball of change.
Some changes have been on purpose, and others were the result of circumstances. But it still amounts to the same thing: a whole lot is different right now.
It reminds me of the time I was a classroom teacher. At the beginning of every year, I started routines and rituals. I got to know my students, and in some cases new curriculum, new materials, new administrators, and/or new colleagues. All I could do was work my heart out each day and come home and sleep. And sleep.
Sometimes, at the start of school, I’d be asleep well before sunset (not kidding) and I wouldn’t move until daybreak. And that would go on maybe two or three weeks. Suddenly, I’d get in the swing of things. I’d be on it. Everything would run smoothly at work, and I’d have plenty of energy to plan ahead, or dance, or date, or take classes, or whatever.
But it always took time. And even though it happened every year like clockwork, I had to be gentle with myself, and do what I needed to do to reach a state of equilibrium with my surroundings.
Except for exercise choices, which are primarily seasonal, my recent changes have not been cyclical. They’ve been positive, yet progressive and persistent. One month after another, there’s been a new spin on things. And I haven’t been very good at stopping to reflect. To do the inner work to harmonize fully with all aspects of my life.
Today’s keynote speaker, Akilah Richards, asked us to consider,
…but how do you want to feel?
And I took the time to sit with that this morning. I journaled about it. I sat in the sunshine. I mulled. I want to feel energized and accomplished. Cheerful. Not superficially, or for a few hours in the morning, but I want these feelings to pervade my day and influence my environment.
At the core I want to BE energy and BE productivity and BE good cheer. I’ve felt that way before. I’ve been those things before. I know how to be that person. I’ll learn how to be those things again, in my new place and under my new conditions.
2010 marked the end of graduate school, and the end of writing by committee for a while. In 2011, I planned to write for self. And I did. Sort of. But not as much as I envisioned.
In 2012, I wrote more often than years past. And I wrote about things that were intellectually and/or emotionally fulfilling. This was especially true in August, when I participated in Tayari’s WriteLikeCrazy and Aliya’s 30 in 30 (30 blogs in 30 days) challenge. As a category, my 30-in-30 posts were the most rewarding to write and many of them ranked among the highest views for the year.
Creating time to write, and mustering courage to share my writing were two challenges I battled for nearly every post this year. But I did create the time. And I did share. And so did you…
Thanks so much for reading and sharing my rants, confessions, mini essays, declarations and lessons this year. Here are the ones that seemed to resonate most:
The difficulty of sustaining faith during challenging times was something I thought and wrote about quite a bit. I also wrote about the dangers of lamenting too much, and the importance of being gentle with ourselves.
When we are not gentle with ourselves, we risk sabotaging our own efforts at change. I encouraged you to cultivate inner discipline through small steps and praise instead.
