I woke up this morning and felt high on endorphins even though I had only a few hours of sleep and no exercise. Over the past few weeks, I’ve felt more and more myself.
Since the beginning of the year, I’ve been seeing an acupuncturist as a first line of treatment for my fibroids. Dr. Liu is a trained medical doctor who learned Chinese medicine later. She aims to help the body achieve optimum health with the belief that it will then be able to dissolve the fibroids. She’s had a lot of success with patients, and although there are no guarantees, I can definitely say I’m feeling better than I have in months. That is a huge win.
In addition to my higher energy levels, my insides no longer feel twisty, and I can breathe normally (all month long) in everything from dresses to jeans to yoga pants. Blue says I look more “sleek,” and because I feel it, I walk it, too. #hotmama
Held in conjunction with national sponsor Macy’s, the event promised a star-studded catwalk. Celebs would include Gina Torres, Kat Graham, Alicia Quarles, and Anika Noni Rose. Anika asked me to tune in if I could. I did, so I did.
The fashion show, streamed online, began fashionably late. The women sported gorgeous designer gowns, some of them strutting, dancing, and bouncing down the runway.
Although the online stream played some strange techno mix, I later discovered the live audience was treated to upbeat songs. Anika shimmied and sashayed to Dreamgirls hit One Night Only. I’ll admit bias, but she was my favorite with Bella Thorne not too far behind.
As some of the women appeared on the catwalk, messages projected behind them. The sayings included their names, their featured designer, and why they walk. I walk to empower women, for instance. Later on in the evening, Anika shared why she walks:
The official cause of death was a brain hemorrhage, which was an unfortunate complication of her heart attack. Although she’d been slowly working to reclaim her fitness, lower her cholesterol and free herself of nicotine, time wasn’t on her side. She died a few months before her 60th birthday.
I wrote a piece for the Body Narratives, a project founded and curated by Hana Riaz. The project creates space for women of color to reclaim and share their experiences. It’s a beautiful platform, and I’m honored to have a piece included in this body of work.
Here’s Hana’s introduction:
Our bodies are often physically and emotionally tied, and yet the disconnect experienced, the gap between the two can often seem overwhelming, painful, difficult. In this moving and deeply honest piece, nicole d. collier talks about living with fibroids and the body as a site of trauma.
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.
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.
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.
Late last month, I checked email to find this subject line topping my inbox. I’ve known Marla, a slim, vibrant beauty from Chicago, since college. She’s always been stylish in her size zero clothes, a graceful stride in striking heels or casual kicks. Perhaps it’s the dancer in her, she’s regal, shoulders back, long neck, even when frowning about some injustice. Whether in locks or a full ‘fro, her hairdo compliments her warm countenance.
From the mid-90s until two years ago when we saw each other at a soror’s wedding, this was my enduring image of her. In 2011, she hadn’t changed a bit. And even though her life is dramatically different now in 2013, much about her is still the same.
At 38 she is still warm, she is still vibrant, and now she is living with lupus.
Marla agreed to share a bit about her story, as there are still many people who know little to nothing about lupus. Rather than summarize or paraphrase, I’m using Marla’s own words here (quoted and in red). It’s her story, after all. I want her to tell it.
I began by asking her to define lupus:
Our immune system is supposed to create antibodies that protect our bodies from viruses, bacteria, germs, etc. Lupus is an autoimmune disease. This means that my immune system can’t tell the difference between the bad stuff and the good stuff. So it creates antibodies that also attack and destroy healthy tissue. Lupus can affect the skin, joints and damage major organs (kidneys, heart, lungs) by causing inflammation and pain.
It’s somewhat simple to describe what lupus is, but discovering you actually have it is another matter entirely. In 2012, I remembered receiving a text from Tavares, a mutual friend of ours. Marla had been in the hospital for days by then, but no one could say why. I ventured a phone call to see if she was up for a quick hello. Her voice was weak – practically a whisper. It was disconcerting to hear her that way. Ages passed before doctors put the pieces together and made the diagnosis. Marla describes this period as the scariest time of her life:
It was early January 2012, I got sick with what I thought was the stomach flu. I was having really bad stomach pains, fever, fatigue. This lasted for about four days with no reprieve. After the fourth day, I started to have chest pains and difficulty breathing. It was at that time that I decided to go to the ER.
I was seriously dehydrated because I hadn’t eaten anything during those four days. My blood pressure was really low and my heart rate was really high. They ended up giving my about 19 liters of fluid and I gained 20 pounds from that alone. I was first in the ICU (Intensive Care Unit) for about two days. They found out nothing was wrong with my heart, so I was sent to the regular area. Over the next 11 days, I was tested for everything under the sun. I had biopsies on my skin and lymph nodes. I had innumerable CT scans and x-rays. I had a colonoscopy. They could not figure out what was wrong.
Looking back, I can see that things were happening that I didn’t see as symptoms, but just as health issues. I would get my regular physical every year. Maybe starting in mid 2009, my blood test started to show that my white blood cell count was low. After retesting a couple of times and getting the same results, in mid to late 2010, my doctor referred me to a hematologist. More blood tests.
One of the tests is called an ANA test. It isn’t a definitive test for lupus – there isn’t one – but it can show that someone can be predisposed to it. I tested positive. I retested and it came back positive.
At this time, my doctor referred me to see a rheumatologist. Because I wasn’t having any symptoms of lupus, I would see her every 3 months just for testing (throughout 2011). White blood cell count was always low and I would always test positive on the ANA test. They wanted to start me on medication, but I was like, why would I do that, I’m not having any symptoms? Also, in 2010 I started having these pains on both sides of my body right under arms, and after seeing my doctor and not knowing what was going on, she referred me to a pulmonologist (lung doctor).
He thought it could have been caused by leftover scar tissue from pneumonia (hadn’t had it). We did a biopsy on my lung and nothing was conclusive. These pains remained off and on through most of 2011. So, I guess there were signs but I just didn’t know it. While I was in the hospital in 2012, I made all of this aware to my doctors. And after them finding nothing else, my final diagnosis was lupus.
Marla shared more of her story, including how her life has changed since her diagnosis, some of her favorite resources, and encouragement for others living with lupus. Read the second installment here. Marla’s walk is October 19. Please click here to find out more.
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.
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.
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.