About Hetlena J.H. Johnson, The Lupus Liar

I truly believe that we make our life the way we want it to be. If we believe that we are happy, we will be happy. If we believe we are having a good time, then so it is! I know firsthand that it’s not easy being human with our fallacies, doubts, and memories of mistakes made. We may not be able to change our past, but as the old saying goes, we can learn from it. We can thrive from our past because each experience makes us unique. Each experience allows us to learn something that we can pass down to someone else. I am resolute about the facts that if life is going to happen, make it happen happy!I believe in never giving up. Maybe that’s the Taurus in me or maybe that just comes from being the only girl growing up with six brothers. Whatever it may be, I do believe in never giving up.

Despite Lupus, I never stopped believing in myself.

I decided to speak up more about my diagnosis. I felt like coming out of my hiding space and tell the world that, "Yes, I have lupus, but lupus doesn’t have me." In 2013, I started going to lupus support groups. And then I stopped going. Since this is about me, I’m going to be honest. I was bored, upset, and sad each time I left a support group meeting. So I met up with a fellow lupus patient and we started a support group where we lived. And this support group was FUN! So fun and informative at times that the library we were meeting at had to shush us often. I believe we all can find some joy in ANY situation. I had found my old doctor’s notebook of my symptoms and decided to share my journey with lupus. This led me to publish Diary of a MAD Lupus Patient. It’s hard sometimes, to talk about your illness, but it’s best to do so.

So, next I started blogging about my journey and my experiences. I believe everyone is different and can bring a fresh perspective into any situation. All of the blogging and support groups grew into me doing peer mentoring and training others on how to help those diagnosed with lupus or any chronic illness. The loves of my life, advocacy, support, and training has grown into being more that I could have imagined! I have several communities, online and on-site, that involved others supporting each other to achieve their dreams and purse bigger goals.

To sum it all up, your story and my story has only one difference—your story is yours, and my story is mines! Let me tell you a little bit more about me and where all of this happiness comes from.

My hair came out, I was confined to a wheel chair for a while, then walker, then a cane. I was so happy to get out of that chair and walk! But at times I continued to feel like the walking dead. My friends avoided me and my mother declared I shouldn’t tell anyone about the name of this disease. She was scared I was going to be teased and be labeled as an outcast and be debased. Luckily I was never one to shy away from anything. I was curious about why this happened to me and I wanted an answer! My family was already strapped with six boys and one girl. And this one girl was terribly sick, so I see why my mother was scared. I had one true friend that this disease didn’t scare off at all. And it was nice at that time to have someone, outside of my four walls, I could talk to about the things I couldn’t do and what my peers were getting ready for at that time.

I felt like I was dying.

Because, at the time, I thought I wouldn’t even be able to graduate.

Death and fear partnered with me when I was told that I have this crazy disease that I knew absolutely nothing about. My mother and father were devastated that their only girl just might die. I questioned more than often if it was going to happen and even asked God when. I asked because of all the constant, consistent pain I was in every second, every minute, every hour of the day. The pain wouldn’t stop! It was excruciating and I couldn’t explain it. At first, every doctor I saw thought I was making it up. Of course I didn’t want to go to school is what I thought they were thinking. That was not it. They didn’t know me as a human being, they knew me as a number. I loved school! I wanted to go back to school. But I ended up being on home-bound my entire senior year of high school.

I wasn’t dead yet…

I was a good student and teachers supported my homebound teacher in getting my school work. I was able to graduate with honors and even obtained a few scholarships –all while on homebound my senior year! It wasn’t easy facing all the emptiness and feeling alone. I had a house full, my mother, father and six brothers, yet I felt alone and estranged more than often. I was getting humongous from the exchange of 65-80 milligrams of prednisone a day, all the medications and the confounded side-effects was enough to make you dizzy. I rarely looked into the mirror and my self-esteem was no more. I was fortunate that I had a father that often told me I looked nice and pretty like my mother. Although there were times I didn’t want to open my eyes, I did!

Getting from under my lupus…

I re-created my strength and meshed it with my faith to move forward. When I felt a little better, I was determined to teach Sunday school, at least. I started trying to work again and that didn’t happen. Store managers declared that I was lying about not feeling well. I often felt that everyone thought I was lying. I started talking to a male cousin of mines more and more. We had a great relationship, but it was magnified when I learned that he had been living with lupus long before me! How could we be so close in the ‘family unit’ and not know? This is when I realized that so many people had never even heard of lupus, better yet, cared what it was. They were scared of it because all doctors would tell them is that they are only going to live a few years after diagnosis. Wrong!

Finally a patient physician had me to start writing down my sporadic symptoms and feelings. She wanted to refer me to a psychiatrist, my mamma said no. (Let’s be honest, she explicitly added another descriptive in front of that no.) But eventually I started accepting my diagnosis despite my mother’s worry and unwillingness to get more familiar with the disease. I couldn’t blame her, she wanted her baby back. I was ready to keep doing what I did. I loved helping people and I was determined to get better so that I could continue to help others at church, walk to the store with my brothers, and participate in after-school activities. It didn’t happen much, but eventually I graduated from college, despite all the ridiculous setbacks lupus threw at me. I kept hitting them back!

I was NOT GOING TO LET LUPUS place me somewhere I didn’t want to be. So I got ready for the world, my new world, with lupus.

YES! EMPOWER MY LUPUS!

I changed the way I looked at life while living with Lupus.

I acknowledge that I have been diagnosed with lupus.

I realize that new symptoms and challenges will come.

I do my best to live my life as normal as possible. And so far, I've done a pretty good job at it.

I share how I feel with those close to me.

I know that navigating this huge change lupus has placed on my life is not always easy, but it can be done.

I know what it takes to be healthy and happy while living with lupus, and I recognize that I am only human.

Girl Scout Badges! That’s what I called them. Lupus is a very complicated disease. It’s unpredictable, complex in nature of its symptoms, and can be fatal without proper medical treatment. I had a challenge to face, and I decided to challenge the challenge! The pain can be unbearable at times, but it was my pain. All mine! I realized that lupus was my new best friend.

So to satisfy it, I released my inhibitions of “having” Lupus. I decided to live with it.

Changing the way I looked at life while living with lupus. . .

I pollinated my self-esteem and got back out there! My mother was scared, my father was too, but I was complacent. Managing a new lifestyle was forced on me and I decided to not only manage it, but master it. This is where I am today!

One of my favorite quotes of Dr. Martin Luther King, Jr. is, “Every man must decide whether he will walk in the light of creative altruism or in the darkness of destructive selfishness.” I got up. I got out. I got back to being me! Because I was so blessed to regain my sanity, I knew I had to help others learn to walk with journey with lupus in tow. I do not regret the fact that I was diagnosed. I accept it and decided to take this as a sign that I was meant to show others that life can still be lived —as best you can!

Adversities will come, complications will happen, but if anything is going to happen, we have to learn how to make it happen happy. Psalm 91:15 – “He will call on me, and I will answer him.” I admit that it is not easy, but I’m willing to learn from each step that I must take. Because I know, first hand, how Lupus can distort your outlook on life, I wanted to help others navigate through the disease’s complications. I chose to yield to the calling to help empower others.

Personal Clarity

The strongest medicine I continue to take everyday is Faith. The malleableness of this has allowed me to continue to develop my passion in my life. I hope to continue helping others along this Lupus journey with

Empowerment to push beyond the past.

Passion and empathy that supports growth from the heart.

Stories that remind you to be the best you that you can be.

Togetherness that encourages sharing quality information.

"The people who are crazy enough to think they can change the world are the ones who do.”

~ Steve Jobs

I believe that there is strength in information. . .

Power comes through understanding the value of quality information. I have come to realize that through the lessons I share and the tips that I have given, that those experiencing what I am experiencing with lupus, want to be happy, living their best life, and reaching their goals, despite their circumstances.

I am so happy in helping others! I do believe that is one of things that keep me going strong. I yearn to help others tell their story about living with lupus in hopes of helping the next person.

"I did my best over these past 23 years to fight this disease and I continue to decide on me."

I decided to not let lupus harass me. Yes, this disease is terrible. There’s been plenty of times that I have been discouraged, disappointed, scared, nervous, unsure, and downright confused and lost. Even Jesus fell down under the weight of the cross! I and my cousin, a male, who has dealt with this for more than 31 years in and out of the hospital choose to build my confidence around God and have faith that lupus cannot and will not conquer my life. This is my little step of faith.

My new beginning!

I choose to NOT let it control me. I, like you, can go into so many horror stories over the years of wear and tear on my body and deaths of my friends as it relates to lupus. I hope this helps you understand what I planted in myself. I believe in life, not this thing called lupus! I choose to use my talents in research, writing information articles, books, mentor training on how to be the new you, and coaching on how to make lupus your business and not your burden.

“A good man out of the good treasure of the heart bringeth forth good things…”

~Matthew 12:35 KJV

I am always inspired by listening to others stories that emphasize the positive in the journey taken. I am often humbled, inspired, and motivated by what others have went through. I wholeheartedly know that everyone can help spread lupus awareness.

I look forward to hearing more about other’s personal struggle and fight for a cure for lupus.

I've learned that a positive attitude in spite of negativity can change your life. Every story is a testament to how different lupus is in each and every one that is diagnosed with this complex illness.

The Lupus Liar is a personal stand I take and hold. I mean to offend no one but to encourage myself to continue to believe that lupus is a lie in terms of controlling me (“…and calleth those things which be not as though they were.” ~Romans 4:17)

17 Facts About Me:

I am the only girl out of a family of 9.
I am the middle of six brothers –three over me and three under me, in age.
I can still do a 360 on a skateboard.
I’m a tomboy for life!
I love animals!
When I was little, I wanted to grow up and be veterinarian and a pediatrician. (How would THAT have worked?)
I also wanted to be a ballet dancer!
I am most creative when I am at play. My atmosphere has to be fun and enjoyable. I am a preacher’s kid (PK).
I love reading horoscopes at the end of the day to see if they really relate to my sign.
I’m a Taurus!
I adore musicals. My favorite is “Annie!”
I want to learn how to play the guitar.
I believe every conversation can be turned into a song!
I’ve never taken a lesson, but absolutely love the moves.
I am a Disney channel hog! Can’t live without it.
I want to change the world!
I feel it in my bones that I was put here to help others learn more about how to live their best life!

Let me provide you a personal L.E.G. up on living with lupus.

I have been thriving and living with lupus for more that 25 years. I am infamously known by my peers as the lupus cheerleader. I am motivated to help others channel their worth. It‘s inspiring how those diagnosed with lupus can go from feeling trapped to being free to explore new possibilities. I love guiding people in support groups and on retreats. Professional and private consultations are a joy to give because they offer a more intense feeling of confidence to my clients.

It takes strong desire and motivation to be willing to accept unique change in yourself. New possibilities can come from learning how to live with a chronic illness. A lupus patient once said to me, "You don't get it until you got it." I do believe it to be so! If you need someone to talk to about being diagnosed with lupus, consider a no-cost 15-minutes lupus empowerment session. Sign-up below for more information.

About Me...

~Hetlena

Providing you a personal L.E.G. up on living with lupus.