Four years ago today I was diagnosed with lupus. Lupus is the reason why self-care has been such a priority for me and a key focus of my Grace & Grapes platform. Beyond having amazing doctors and a steady stream of medicine, self-care is the one thing I can control that most directly impacts how effectively I manage my lupus symptoms day to day. Lupus is also the reason why I am such an advocate for your own self-care. Over the past few years, I’ve learned that what helps me manage my chronic illness are universal to all, and I hope that the lessons from my journey can help others lead happier and healthier lives.
My Lupus Story
First signs of illness
I often think back to the summer of 2016 – it was the summer of fun, fun FUN! I was a few months into a new job that I loved and my personal life was finally on a positive track. I was busy doing all of my favorite things: traveling a lot to see friends, going to every concert or outdoor outing I could find, and getting to a beach as often as I could. Every weekend was an adventure and I lived for being on the go in pursuit of good times. That started to change around Labor Day. All of a sudden, I felt the urge to stay home a bit more. I remember being on the beach in Costa Rica with one of my girls and saying to her, I think I’m going to slow down a bit when I get home. It was so odd to hear me say that out loud, but I felt tired in a way I hadn’t experienced before, and chalked it up to the fact that I had been traveling many back to back weekends. I mean, anyone would be exhausted from that right?
By the time Hampton Homecoming rolled around in October, I cheerfully got in the car to head down to my beloved home by the sea, but again, felt less than enthused because of the new exhaustion I was experiencing. Now THIS was really odd. For my close circle of friends and most HBCU alums, homecoming is one of the main highlights of the year. How could I be anything less than excited about this amazing annual family reunion? Yet I continued to press on, even through managing a constant headache that started weeks prior.
Right after homecoming, I developed a fever that wouldn’t go away. The fever and headache together made me very weak as I tried to treat it at home with Tylenol and Gatorade. Again, I thought this was just my body telling me to slow down, so I worked from home and waited for my symptoms to dissipate. But I was still planning to celebrate Halloween in a big way (it was year of Beyonce’s LIFE-GIVING Lemonade album and nothing was going to stop me from recreating her Hold Up video – yellow dress, bat and all!).
The morning of Halloween, my 103 degree fever felt higher than I should manage on my own as I could barely walk without assistance. I managed most of this in silence in my apartment. I went to urgent care where they quickly diagnosed me with walking pneumonia and sent me home with a new prescription. I went back home very hopeful that the meds would make me feel better, but sad I couldn’t celebrate Halloween (I know, priorities smh). But I took one pic in my costume, covering my weary eyes which as the only proof of my illness. After the photo, I got back in bed for several days.
After about five days, I still felt very weak, but the fever wasn’t consistently present, so that was a step in the right direction for me. By now it was time for early voting for the 2016 presidential election. Nothing was going to stop me from voting for Hillary Clinton that morning, who we all just knew would win. As I walked into the polling station, I noticed that I was unable to stand for more an about a minute and asked for a chair while I waited. By the time it was my turn, I got up to walk to my booth, and immediately after casting my vote, I vomited and passed out. I felt sick and weak as voters gathered around me, but I was mostly embarrassed by the public scene I created. After all, I think I’m on the road to recovery. After the threat of calling an ambulance for me, I quickly rushed out of the polling station, drove myself home and got in bed. It wasn’t until later that day while I was retelling my incident at the polls to my close friend that I decided to go to the ER. I was jokingly telling him how Hillary Clinton will surely thank me personally for risking it all to vote, and he started to yell at me about how I wasn’t taking my now weeks of extreme illness seriously. He was right and hearing it from him made me get into an UBER to head to the hospital where I spent the next two and a half weeks.
Diagnosis
I remember having a steady stream of doctors come in to try to figure out what was wrong with me. Because they couldn’t figure it out right away, I became a “special case” at the teaching hospital. Every time my doctor came in with an update, she was followed with ten medical students to stare and learn, just like on Grey’s Anatomy. Weird. Through a series of blood tests, they knew I wasn’t well enough to send home with another prescription. This was more serious. My hemoglobin blood count was steadily dropping. Normal hemoglobin range is about 12 –14 for women; mine had dropped from a low 7.4 to an almost fatal 5.8, the point where stroke or heart attack is likely. After a week of numerous tests and treatments – MRIs, CT scans, X-rays, a painful bone marrow biopsy, steroids, multiple blood transfusions and more, my doctors finally diagnosed me with lupus.
What is Lupus?
Lupus is a chronic autoimmune disease that weakens the body’s immune system, causing it to attack healthy organs and tissue. Lupus can affect any bodily function, but skin, joints, kidneys and heart are most commonly impacted. Lupus switches the body’s default function from protecting the internal system to creating a volatile, inflammatory environment that causes organs and cells to attack each other. Anyone can get lupus, but like many diseases, it more deeply impacts women of color.
Lupus is often called the invisible disease. It can be very hard to diagnose because it can mimic the symptoms of many other diseases and it shows up differently in each and every person. For me, it showed up as hemolytic anemia, meaning that when inflamed, my hot and cold blood cells can attack each other. This causes low blood counts, which leads to symptoms of fever, headaches and weakness. A lupus flare up (or relapse) happens when the body’s affected function becomes inflammatory. For me, the signs of a flare up include headaches and fevers. Out of everyone I know with lupus, none of us have the same symptoms.
Living with Lupus
I’ve had to make some real adjustments in my life, but all in all, I’m very blessed that I can manage my illness and live a full and healthy life. The key is knowing what can trigger my flares and doing all that I can to prevent them from happening in the first place. And even with the best laid plan, flare ups will happen from time to time. That’s just a part of my life now. But I focus on what I can control, and that has helped me live mostly symptom-free, having many more good days than bad.
Self-care as a part of my treatment plan
I’ve prioritized self-care as a part of my treatment plan to prevent flare ups. The core healthy practices that keep me healthy are honestly things we all know we should prioritize: getting regular exercise, maintaining a low-sodium/nutrient rich diet, drinking ample water and resting when needed. Staying consistent with these habits seemed doable, but the most impactful self-care lessons were also the much harder shifts in my life. While I learned the importance of self-care through my lupus journey, these lessons are universal to everyone.
Six universal self-care lessons from my lupus journey
Trust and listen to your body
Over the course of the summer before my diagnosis, my body was giving me clear signs that something wasn’t right. I knew what “normal” felt like, but I brushed off my abnormal symptoms several times. I almost ignored what my body was telling me until it was too late. I learned a clear lesson of paying attention to the signals and doing something about it. How many times have you had the feeling of something being off in your body, but brushed it aside?
Go to the doctor when something doesn’t seem right
It took dramatically passing out at a polling station and the screams of a dear loved one to get me to the ER. Why did it have to take all that? I don’t know what would’ve happened if I had waited much longer. While we know our bodies, we are not the experts in our care. Taking care of ourselves means making sure we get help when we need it.
Manage stress above all else
This one is still the hardest for me to do, but it matters the most for my health. My body and countless doctors tell me that a high level of stress is a key contributor to my flare ups. But long-term stress is the reason behind so many other health issues in life including mental illness, heart disease, stroke and gastro disorders.
I talk a lot about how I manage stress through meditation, yoga, breathing rituals and finding a peaceful place to relax because it helps me manage stress levels, which I know wards off flares. Managing stress should be a priority in everyone’s lives, in whatever unique ways you find the most helpful.
Learn to say no
Ahhh, another hard one for me! This one honestly is the one that is necessary, but it doesn’t always make me feel good. I’ve had to say no to friend gatherings, family outings, celebrations and projects because I knew I didn’t have the stamina to show up. And while saying no is still hard, I know that pushing myself when my body is telling me to take a break is an easy way to ensure I miss a whole lot more in life. Our society creates pressure for us to do more and do it faster than ever before, and that unhealthy cycle can wreck havoc on our systems. Even when you are your healthiest, it’s good to assess when you may need to give your mind and body a break to rest.
Accept help from loved ones
I’m usually the doer and helper, and I usually ask for very few favors. When I was first diagnosed, I needed more help than I’ve ever needed in my life. And that was hard, but I have an amazing circle of family and friends who ARE family who were there at the ready to help me manage my new normal. They showed up for me in every way – from bringing me food, cooking lupus-friendly meals and cleaning my house. And equally important was the help I received while I was dealing with the emotional aspects of this illness – endless flowers, cards, notes of inspiration. And whew, bringing me a pair of hoops and red lipstick when I didn’t feel like myself or giving me a nice hat when my hair started to fall out. I was lifted up by the heartfelt expressions of support that I knew I needed. While I don’t need that level of care now, I know that I can depend on those who love me and I don’t need to go at it alone. And for anything that happens in life, this is an important lesson. Say yes to help!
Block out negative claims over your life
I’ve met a lot of people in the lupus community over the years to learn as much as I can about this disease. Most experiences have been positive, but I’ve come across a few people whose negative perspectives don’t align with mine. It’s not helpful for me to hear a great deal about all of the tragic ways lupus or any disease can impact your body long-term. I know many people struggle more than I currently do, and that this is a journey with lots of ups and downs. But no matter what, it’s an exercise in staying firm in your faith and believing that the outcomes of your life are not based on the outcomes of others. When I heard about the limitations I would have to face for the rest of my life, I created a vision board that included all of the things I was told I couldn’t have. And I feel very blessed that I’ve seen some of my visions become reality, against what I was told is possible. I believe you have to create your own narrative about your future to reduce the noise of negativity that can keep you from living the life you want.
Thank you for sharing this heart felt story. May God continue to bless you and your family.