"Why am I sharing this with you? My hope is to share with you not only a part of my journey but to build an awareness of this cruel disease."
Hello, my name is Jazmin Leader. I am 25 years old, a mother of 2 children, and wife to Jason Leader. On February 28, 2015, I was diagnosed with systemic lupus erythematosus (SLE).
What is Lupus?
Lupus, also known as systemic lupus erythematosus (SLE), is a systemic autoimmune disease in which the body’s immune system attacks healthy tissue. There are many kinds of lupus, but the most common type is SLE, which affects many internal organs in the body. SLE most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys, and nervous system. Lupus occurs nine times more often in women than in men, especially in women in child-bearing years ages 15-35. Lupus is also known as “the great imitator” because its symptoms mimic many other illnesses. Lupus symptoms can also be unclear, can come and go, and can change.
A few facts:
Lupus is not contagious. It is not like or related to cancer. Lupus is a chronic disease which means once diagnosed, there is no cure and the people with it, live with it the rest of their life. And while there is no cure, the most common forms of treatment range from immunosuppression, infusions, and chemotherapy. The course of the disease is unpredictably filled with moments of illness (considered “flares”) and moments of remission. Many of which the individual has little to no control over. Outside of a butterfly-shaped rash, covering the face across the cheeks and nose, in some people, there is no outside “sign”/physical indication to signal that a person with lupus is sick with this disease. It often gets referred to as a “ghost disease” for its lack of outside physical appearance. But lupus is a painful disease which affects most lupus patients daily. From dealing with swollen joints, hands, feet, and around the eyes, and pain in chest on deep breaths, day to day activities are not done easily and require a lot of energy and effort physically and mentally. For example, turning a doorknob can be excruciating, or walking up a few steps inside my own home can be unbearable.
Why I am sharing this with you:
I share this with you not just on my own behalf, but in honor of the many people that suffer from lupus every day-an estimated 1.5 million people in the U.S. alone. May is Lupus Awareness month. My hope is to share with you not only a part of my journey but to build an awareness of this cruel disease. This is still new to me and it is still something I am trying to figure out every day, but my approach in caring for myself is not the same as others. I hope that with my approach I can inspire others to take better control of their health, with or without this disease.
What I am doing:
Right now I am specifically working on how to better my overall health, beginning from the inside out. I have changed my eating habits to strict clean eating (sticking with the principals of The Whole30 and The Wahls Protocol guidelines) and by adding rich supplements to support my body as best I can (fish oils/omega3 fatty acids are your friends!!!). I have dedicated myself to keeping my body balanced physically by going under chiropractic care on a regular basis, by attempting yoga an hour a day, by spending time outside inhaling fresh air and by not being too hard on myself.
Learning my limits physically has been a huge push on maintaining my symptoms to a minimum. I don’t quit once it gets hard, I just listen a lot more closely as to what my body is saying and respecting that my limits may differ in range from day to day.
And finally-mentally I have dedicated myself to reading 30 minutes a day minimum; from a book, not just social media browsing.
Exercising my will with food, my body with a daily activity, and my mind with reading, has already helped me to feel immensely better.
Now, that doesn’t mean I am ALL better, I still struggle some days, but I am much more in tune with my body that I can anticipate how I will feel, which emotionally makes it much more tolerable. But I know others with lupus are not so lucky. Others can only wish that they can get up to do something physically, like walking around the neighborhood, but their days are much harder and much more unbearable that it simply is not an option.
So this is my challenge to YOU:
For those who are able, I challenge you to do something physical. You can do push-ups, sit ups, jumping jacks, or a good ole run around the neighborhood, try to do one or try to do all.
I challenge you to honor your body in a way that you don’t get to do daily; to honor your body by skipping a drink of soda by drinking water instead, and to honor your body by giving yourself a break from your phone for 15 minutes and by picking up a book.
In honor of those with Lupus, I stand with you all #LupusStrong and thank you to everyone who helps us along our journey.
#LupusStrong was written by Jazmin L. and is republished here with permission. Jazmin fights Lupus SLE and she is starting a nonprofit to support people with autoimmune conditions. She has a husband and two small children.