Lupus: a chronic autoimmune disease that can damage any part of the body including, but not limited to skin, joints, and/or organs, per the Lupus Foundation of America. With lupus, one's immune system is essentially attacking itself (just like in other autoimmune diseases), and creates autoantibodies which are attacking and destroying healthy tissue resulting in inflammation, pain, damage to the body.
Chances are you, a family member, a friend, or someone you know is affected by an autoimmune disease. My best friend and twin sister, Lauren, was diagnosed with lupus in 2013. Many people ask if you can feel pain when your twin feels pain. Although I may not be able to feel the pain the same way Lauren feels the pain lupus causes her, it certainly breaks my heart.
My personal journey with the plant-based diet began when doing research for my oncology patients. However, after Lauren's diagnosis, I began to research its benefits for more than just cancer--autoimmune diseases, heart disease, high cholesterol, hypertension, infertility, etc. As you can imagine, the research for the plant-based diet and the many other chronic diseases emerged.
I asked Lauren to share some of her story and journey of lupus with us as a plant-based diet is part of what helps her manage the disease.
I'll let her take it from here.
Lauren, tell us a little about yourself.
My name is Lauren. I am a wife, daughter, sister, twin, aunt, godmother, friend, business owner and a lupus fighter.
Tell us about your journey to diagnosis of Lupus.
My symptoms started June 2013. I experienced joint pain in my hands which I thought was due to working on the computer each day. Unfortunately, over the course of the next few months my symptoms continued to get worse. My hands, elbows, knees and ankles began to swell. It wasn’t until I started losing chunks of hair that I convinced myself something was wrong.
The diagnosis process started in September with at an orthopedic who immediately ruled out the “simple” issues I was thinking it could be (i.e. carpal tunnel). The doctor was puzzled and decided to run several blood tests.
The blood tests came back with a high ANA number (antinuclear antibody). I quickly learned antibodies target harmful substances, such as viruses, by activating the immune system to help the body get rid of them. From there, I was directed to a rheumatologist who ran even more bloods tests.
After a few days, I received a call at work with the test results. As I sat in the a small conference room, I was given news which changed my life forever. Part of me was glad I had an answer, but I had never heard of lupus. After I hung up the phone I Googled “lupus” and after reading a few sentences I started crying right then and there.
After calling my mom and boyfriend Jeff, now husband, to share the news I walked back to my cubicle. I tried to be strong and continue with my day, but that plan didn’t work too well. I continued Googling lupus and learning too much about it. I decided I needed to take the rest of the day off.
When I arrived home, my entire family was at home waiting for me. I was still in shock, and I was for a few days, but I will never forget the support they provided from the very beginning. Plus, Jeff arrived after work with a bouquet of flowers saying “I’m going no where. We are going to fight this.” To this day, my family and Jeff are a constant support system.
Even with a diagnosis, the disease took a lot out of me. I couldn’t squeeze toothpaste on my toothbrush. I couldn’t open jars. I couldn’t dry my own hair (my mom would hold the hair dryer for me). Even high-fives from my boss were extremely painful. And one day, I woke up and couldn’t walk. Now that, was scary.
What was your lifestyle like prior to diagnosis?
Let’s just say, I was living life!
I was traveling from state-to-state for work and fun. My relationship with Jeff was fairly new and we were having tons of fun taking on new adventures together. Every weekend, and sometimes weekday nights, I was out on the town meeting friends doing something new and fun.
While I knew my diet could be better, I thought of myself as healthy individual. On top of that, I was a very active person when it came to the workouts. I had completed my first half-marathon, sprint triathlon and craved kickboxing classes. My workout regime was not only a piece of my social life, it was how I tried to stay in shape after my college years as a track & field athlete.
Would you be willing to tell us about the medication requirements when diagnosed with Lupus? Or, at least your personal experience?
Before lupus, I rarely took medicine, not even tylenol. But man, did that change when I was diagnosed!
A few months into my new medication routine, I remember sitting at the table with my mom with all of my medication in front of me. I sat there confused, trying to categorize all of my medication in my pillfold (p.s. I couldn't live without it). It wasn’t until I looked up and caught my mom’s eyes starting to fill with tears that I knew what she was thinking. At that point we both knew this was now my life. Filling pills, taking pills, refilling pills and on, and on, and on.
I don’t want to go in depth of what I was taking, but at that time I was taking about 16 pills just to get through the day. On top of the lupus symptoms, the medication took so much out of me. I ended up losing 10 pounds within the first few months (and not by choice). Additionally, one of the medications I am still on prevents us from starting a family as it can cause fetal death and is used as chemotherapy, in certain situations.
Often times one of the biggest questions for patients after diagnosis is, ‘What can I do?’. What did your physician recommend as for what you could do to help alleviate pain, symptoms, etc.? Anything specific to diet?
The medication regime was the first thing that needed to happen in order to prevent the lupus spreading to my organs. Aside from that, my doctor encouraged me to walk even if it was for a few minutes.
Unfortunately, when I asked my doctor about what kind of diet changes I should make there wasn’t much said. She informed me there simply wasn’t enough data to support diet recommendations when it came to lupus, however, she did insist on an overall healthy and balanced diet.
I absolutely LOVE my doctor and am grateful for the support she provides me. She is always straightforward about the facts and highly involved in the research available for managing lupus. Unfortunately, during their formal education physicians are taught minimal, if any, nutrition so I can't blame her for the limited knowledge regarding diet and lupus.
As our readers know, Wholesome focuses on a plant-based diet approach. What started you on the plant-based diet? What changes have you noticed since starting a plant-based diet?
Since there hasn’t been tons of specific data about diet and lupus, I decided to do my own experiments. I noticed there were certain foods the lupus thrived on. My favorite meal, Mom’s Chicken Pot Pie, was one of the first meals I realized I could no longer eat. It was unbelievable how fast my body would hurt before the meal was over. From there, I eliminated creamy and salty foods. This made a huge difference immediately.
Once my family and I started getting the hang of what foods were too salty and too creamy, I started eliminating highly processed foods. No more packaged cookies, chips, prepackaged meals, etc. Everything became homemade. Again, I noticed a huge difference.
Then, at the end of 2015, I decided to make even more changes and implement a plant-based diet recommended by Alison. No more meat. No more dairy. This step look a lot of hard work but my family and Jeff supported it. With some research proving a plant-based diet helps minimize the symptoms of autoimmune diseases, it was worth a try. Plus, how can eating more fruits, vegetables, whole grains and legumes harm anything?
After getting the hang of the new lifestyle, I started going weeks… then months without a lupus flare. I was able to start weightlifting again -- something that finally made me feel like Lauren again! The blood test marker which was 398 at diagnosis, now fluctuates from 105-150 on a plant-based diet. On top of that, my high cholesterol (around 290) dropped 100 points and my blood pressure was better than ever. Oh, and I dropped another 15 pounds--but this time in the right way!
On my new plant-based lifestyle, I am down to about 8 pills… which is cut in half from where I started. Plus, my doctor and I are working on dropping that down to 4 so Jeff and I can start a family (if/when we are ready!).
Outside of diet, what other things do you believe have helped you live well?
I made a lot of changes in my life to help me live as well as I am today. I quit my stressful job and became my own boss. I am now a yoga regular which has not only helped my lupus but chronic back pain. I treat myself to a monthly massage. Although it is expensive, it keeps my muscles and joints in check; plus, it is much cheaper than a few monthly prescriptions!
Overall, I am more in tune with my body than ever before. If I don’t listen to it, things can go south real quickly. And most importantly, without my supportive husband, family, friends and doctors I wouldn’t be where I am today.
What do you feel is your biggest challenge regarding living with Lupus?
The biggest challenge is accepting that I can no longer do things I used to. I used to weight lift on a regular basis (I could squat 250+lbs!). I used to be able to run long distance. I used to go out with friends and not worry about how much sleep I was going to get.
Now, my social life has been altered so I don’t wear down my body. I have to limit how much I drink… we’re talking 1-2 drinks a month (I miss my bourbon!). And I have to constantly think about taking my pills at the right time.
What do you feel is your greatest strength regarding living with Lupus?
Oddly enough, it is the same as my biggest challenge. I may not be able to weightlift like I used to, but I have learned to be strong in a different way. Without lupus, I probably wouldn’t have given yoga a chance -- I can’t believe some of the shapes I can “bend” my body into. I now find strength taking a walk as it gives me time to reflect, breath and move.
I now honor my body the way it should have always been honored. I eat to nourish my body. While I now accept, at least on most days, I will live the rest of my life with this disease I know this disease has changed me for the better. It has made me healthiest version of Lauren I could have ever imagined.
Unfortunately, there are many living with autoimmune diseases, and many can be physically and mentally debilitating for many patients. What is your advice to them?
You’re 100% right. I will admit I still have bad days -- both physically and mentality. And that’s okay. We’re all humans. And because of that, my advice to anyone living with an autoimmune disease, or any chronic disease for that matter, is to slow down. Take a few deep breaths.
Seriously, right now… take 3 deep breaths.
Ask yourself WHY is my body reacting this way? Did I push my body too far? Am I too stressed? Have I been eating poorly? Am taking care of ME?
You will never be able to overcome the disease until you take a back seat and put your health before anything else.
Is there anything else you would like to share with our readers?
Even if your readers don’t have an autoimmune disease, I hope they take the advice I gave above.
Our bodies are precious. My body shouts (AKA a flare) at me when I do something it doesn’t like. Just because your body may not respond with a painful flare, doesn’t mean your body isn’t being negatively impacted. Over time, too much stress and poor eating habits will catch up with you. Why wait for something bad to happen?
I am LUCKY… yes, lucky... because God put a huge mountain in front of me at an early age to say “Lauren, wake up. It’s time to take care of this body I gave you.”