Living with Lupus: An In-Depth Interview with Kennya Sanchez
What to know about Lupus
What are the biggest myths about Lupus?
That it’s all in your head. That was one of the biggest challenges I experienced myself.
Another myth is that different members of the same family cannot all have it. They can and it can show up differently for each one.
How do you get it?
Lupus is an autoimmune disease. What that means is that your body becomes confused and starts attacking its own tissues and organs. It can be hereditary, hormonal, or it can be due to environmental factors.
Why is it so hard to diagnose?
Symptoms can vary. Your body can respond differently to each flare up. Many times, Lupus is misdiagnosed as a different illness.
How is it different for children and adults?
I’m not sure how it’s different because I became aware of my own symptoms as an adult. I can imagine is more dangerous for a child.
I know that as a child I would have had less willpower to make the changes I made as an adult. By then, I had a clear understanding of why I needed to make lifestyle changes.
What were some of the symptoms you were experiencing before you were diagnosed with Lupus?
For a long time I was confused.
I felt numb, hazy, and I had a lot of pain throughout my whole body, both internally and externally.
I experienced severe headaches. I felt extremely weak. I bruised easily. I also had dry skin, rashes on face and body, mood swings due to the pain and internal fevers (ones that happen inside the body).
I also had unique symptoms that were hard to explain to the people around me. I could feel my organs palpitate. I had uncontrollable breathing. It almost felt like if I were to let go, I could let go of my life.
How long had you been experiencing those symptoms?
I experienced symptoms like this as a child but they were very minor.
I remember mentioning to my mom that I felt like I wasn’t really here.
I remember feeling a lot of fatigue. Not always when I was young, but my symptoms got worse after having my first child.
What was it like to experience extreme fatigue?
It’s pretty crazy because you can’t do anything.
I remember just having to lay in bed, sometimes with tears in my eyes, because I couldn’t get up or do much with Christopher. I wondered if I was just lazy.
I had to do everything one step at a time.
Did you feel helpless when you were experiencing those symptoms?
Because I didn’t understand my symptoms and I couldn’t explain it to people. And I didn’t want people to think I was crazy.
At the time, I was working at Verizon. There were times where I would be at work, and I couldn’t help but cry because my body was palpitating. People were shocked to see me in that state and I didn’t even understand it myself.
What triggers a flare up?
Many things can cause flare ups.
Some of my triggers have been:
- Contact with chemicals, such as bleach or other cleaning products, paint thinners, and other harsh chemicals.
- Certain foods like gluten milk, too much sugar, and pork.
- Poor or disrupted sleep.
When I first started working out, that would trigger them. But the more I worked out, the less I flared. Now, working out actually helps prevent my flares.
What symptoms do you experience during a flare up?
I get a rash on my face, that lets me know right away that it’s a flare.
I become very weak and all I can do is lay in bed. My breathing becomes faint. My vision becomes blurry. My organs begin to palpitate. Many times, I can even feel my kidneys being affected by it.
Getting a Diagnosis
How were you diagnosed?
Before I had Christopher, I jumped from doctor to doctor, trying to figure out why I felt so much fatigue.
I was always told that it was because I did so much. That answer didn’t feel consistent with what I was experiencing, so I kept looking for an answer.
Eventually, I got a few answers.
One doctor diagnosed me with dyslexia. I also went to natural chiropractor who didn’t help much with getting an answer but I felt great when I was adjusted!
I began to go to my doctor so often that he finally referred me to a neurologist and a rheumatologist. The neurologist found a small cyst behind one of my eyes. It’s benign and does no harm unless it grows. The rheumatologist diagnosed me with Lupus.
What kind of emotional impact did you experience after your diagnosis?
At first, I felt sorry for myself but I was also relieved to finally have an answer.
Much later, after a some time of feeling like a victim, I decided to take control of my own life.
Making Lifestyle Changes
What dietary change that made the biggest impact?
One of them was to remove wheat or gluten.
When I played around with taking gluten out and putting it back in, I noticed that I experienced small aches and my bones and muscles when it was in my diet. Through experimentation, I also figured out that some foods would cause what is called a “lupus fog”.
I found similar effects from drinking milk.
What other dietary changes made a huge difference for you?
Removing wheat, milk, and sugar made the biggest differences.
How long did it take to start feeling more energy, after making your dietary changes?
Almost immediately. I begin to think clearly to see clearly!
I used to have very blurry vision. I was able to do more chores and enjoy being out longer. Even my breathing changed!
Have you created a method for dealing with flare ups?
Yes! I’ve learned to be aware of how my body reacts. I make sure to take my vitamins. I take care not to push my body and stress level too much. I have also learned to relax when I need it.
What would you have done differently from the get go, now that you know more?
I’m not sure if I could do anything different. I think it was a great learning experience. It took many years.
Do you have any specific websites that you went to for help on understanding?
My biggest help wasn’t with a website but with a Tony Robbins course on CD’s.
He helped me put things into perspective when he said don’t be a victim to an illness and don’t speak about it as if it owns you. It doesn’t.
To connect with Kennya, check out her Happy Hour Dance Workout Class on Mondays and Tuesdays, or check out her next community event! (Interviewed and edited by Gloria Lopez.)