Over twenty years ago, I was told I had Lupus and that it was a life threatening condition that had no cure, period.
I believed this.
Back then, the life expectancy with Lupus was 10 years mainly because it wasn’t as common as it is today. Or maybe it was common but we didn’t know much about it because we didn’t have the Internet.
According to Google, “While there’s no cure for Lupus, current treatments focus on improving quality of life through controlling symptoms and minimizing flare-ups. This begins with lifestyle modifications, including sun protection and diet. Further disease management includes medications, such as anti-inflammatories and steroids.”
Medications for Lupus and Their Potential Side Effects
1. Non-Steroidal Anti-Inflammatory Drugs (NSAIDs)
Mainly used to treat pain, swelling and fever associated with Lupus.
Side effects of NSAIDs include stomach bleeding, kidney problems, and an increased risk of heart problems.
2. Antimalarial Drugs
Such meds originally intended for malaria are used for Lupus.
Hydroxychloroquine (Plaquenil), is a common medication used for Lupus to decrease the risk of Lupus flares.
Side effects can include stomach upset and, very rarely, damage to the retina of the eye.
Prednisone and other types of corticosteroids can decrease inflammation associated with Lupus.
High doses of steroids are often used to manage serious disease that involves the kidneys and brain.
Side effects include weight gain, easy bruising, thinning bones (osteoporosis), high blood pressure, diabetes, and increased risk of infection. Such risks increase with higher doses and length of therapy.
These are medications that suppress the immune system. Examples include azathioprine (Imuran, Azasan), mycophenolate mofetil (CellCept) and methotrexate (Trexall).
Potential side effects may include an increased risk of infection, liver damage, decreased fertility, and an increased risk of cancer.
A different type of medication, belimumab (Benlysta) administered intravenously, can decrease “symptoms” in some people.
Side effects include nausea, diarrhea and infections.
6. Rituximab (Rituxan)
Also used for tough cases with Lupus. Side effects include allergic reaction to the intravenous infusion and infections.
What Are Your Beliefs About Lupus?
In my life with Lupus, I’ve been on all the medications above except for Rituximab.
Currently I have not been on medications in over 7 months. I’ll explain further about this later.
I believe I can cure and heal Lupus for myself.
To cure, by definition, is to relieve a person (or animal) of the symptoms of a disease or condition.
To heal, by definition, is to become sound or healthy again.
I can make this statement without attacks from the medical community because it’s my belief for myself.
It’s not something I do for others, nor do I expect others to cure or heal me. This is because I believe healing and curing of disease is an inside job.
This belief has changed the course of my life with Lupus.
Flaw in the Medical System
The medical community says there’s no cure for Lupus.
Herein lies the paradox:
I believe expecting a cure from outside of ourselves is the fundamental flaw in our medical system.
We are expected to rely on scientists and medical experts to figure out and provide us with a cure. We believe a cure can only come from outside of us and therefore we take a passive approach for our health.
So we wait, we hope, and we believe.
This is exactly why we are sick and getting sicker and sicker.
The medications listed above cause complications and side effects that are far worse than the disease itself. In addition, the worst part is that the medical community and the scientists don’t know the cause of Lupus.
From that unknowing place, we are left hoping and waiting. I believe this systemic idea of experts dictating our beliefs is fundamentally wrong.
It’s as if once sentenced with Lupus, we are at the mercy of the system that prisons us while feeding us poison, all in the name of a cure.
Nothing outside of me can cure me. This is what I believe for myself.
I Used Lupus to Empower Me
Once I changed my own beliefs, my thoughts, feelings, and actions shifted in a positive way. Slowly, I began to heal.
Healing was incremental and happened over time. It was never immediate, as I had to work and figure out deliberately what worked for me and what didn’t.
It was a convoluted path, but a path that lead me closer to becoming healthy again. The more I healed and cured myself of the symptoms, the more complete I became.
It was more about becoming empowered and confident enough to handle the potential risks with Lupus. Because remember, my Doctors told me Lupus cannot be cured.
I am a doer. I‘m a type A person who always needs forward momentum so it was in my nature to help myself by “doing”. Because of this, movement, exercise, and healthy eating came fairly easy for me.
But my underlying emotions and feelings were quite a slippery slope.
For a long time, I got busy doing the next best thing without thinking much about the underlying feelings I had and the looping thoughts that perpetuated these feelings.
Feelings made me a hot mess, and I used to tell myself to ignore the feelings and push them deep inside me so others won’t know just what a hot mess I was.
I had crazy looping thoughts that I masked by working or studying. It was pure will power that allowed me to get through and accomplish these things.
But at the core, I was not right.
Healing is More Than Just Changing Your Actions
As I got stronger physically from the practice of Yoga and Pilates, I began to explore my breath.
I connected my brain with my body and became efficient at moving without pain.
As I practiced Yoga, I became centered and focused through my breath. I learned how to breathe into my discomfort.
Then, I began to journal and write down all the things that were occupying space in my brain, such as the thoughts that were constantly looping in my mind.
I learned that there was so much to unpack within my thoughts. We think 60,000 thoughts a day and when I observed what I was thinking by writing them down, I realized just how unkind I was to myself.
I was thinking thoughts that were seeded in self loathing.
Then I learned that my thoughts created my feelings. The feelings I kept feeling were resentment, self pity, shame, fear, and guilt.
I was good about ignoring these feelings and doing the next best thing. Eventually I realized my thoughts kept producing such feelings.
As a result, I had no joy and fulfillment even when I was physically healthier and professionally succeeding.
This was the paradox I kept exploring.
Then just last year I had an epiphany. I got really sick to a point of almost death. In the hospital bed, I thought long and hard about the events which lead to that moment.
I was poked, prodded, and questioned by an oncologist, cardiologist, hematologist, and a rheumatologist.
No one knew what was going on with me. They only reviewed my labs, the only tangible evidence to determine exactly what was wrong.
It occurred to me that each medical expert brought their expertise and biases to the table. Each one assessed me based on his scope of practice only.
Oncologist was looking for cancer, hematologist was looking for infection, cardiologist looked only at my heart, and Rhematologist was only assessing my Lupus.
I felt it was an inhumane way to be treated while sick. Nobody was interested in my thoughts or feelings. I was just a pathological case to them – a case to be managed.
Medical stability was everyone’s goal. Once that was accomplished, then I could be discharged.
I was not involved in my care, it was all outside of me.
After 9 days in the hospital and 6 months of follow up, no one knows to this day what happened to me.
They said it was from plaquenil toxicity. But if you go back to the list of side effects I discussed earlier, plaquenil has only minor side effects.
The epiphany I had was that healing is an inside job.
Emotional Turmoil Can Make You Sick
I have a long history of tension with my mom. I love my mom but for so long I had resentments and blame toward her that was sabotaging my relationship with her and my twin sister.
I’ll spare you the details but just before I was hospitalized, I had a blow up with my mom and that blow up was a severe one.
She decided to disown me and cut me off.
My relationship with my mom was an ideal one that I created on the outside. But on the inside, I harbored feelings of hatred, blame, and resentment that was so unhealthy.
Justified or not justified is not the point. These feelings were slowly killing me inside.
My mom cutting me off is a normal pattern for her but I was consumed with guilt and remorse so much so that I became obsessed and progressively depressed.
I truly believe this emotional distress was the reason I was sent into the hospital.
Your Beliefs Predict Your Outcome
According to the movie Heal on Netflix, our thoughts, beliefs, and feelings drastically alter our ability to heal.
I believe our beliefs about our ability and role in our own healing have a profound effect on the outcome of our healing.
I’m at a point in my journey with you where I had to take a sabbatical from the practice of Yoga to focus on the exploration of the deep thought work.
I wanted to be transparent and authentically aligned with the message we are putting out at Lupus Rebel.
Despite what the Doctors and the authority figures may say, I believe we can all heal ourselves from any chronic disease.
But this process requires you to shift your paradigm. It requires you to change your beliefs.
Your beliefs about Lupus will either stagnate you or progress you forward.
There’s a time and a place for everything. I believe in getting “treatment” when necessary, but owning your health means first changing your beliefs about Lupus.
Assuming and believing Lupus is incurable only leads to a passive and reactive mindset which completely disempowers you.
We want to dare to take responsibility for our health by owning our thoughts, emotions, and actions that we take every single day.
Because the truth is, no one else cares about your wellness and health more than you.
So how much do you care?
More importantly, what are you doing about your wellness and health?
Lupus Health Revolution for Shifting Your Paradigm
Thank you so much for reading.
If my message resonates with you please come check out our Lupus Health Revolution program that we open up to potential clients twice a year.
It’s a yearly coaching program where I guide you on changing your beliefs about your health and Lupus, and owning your thoughts and feelings to create desired outcomes in your life.
It’s all about applying and living the self healing concepts to truly own our lives and health in a meaningful way.
Guarantee is that you too will be empowered to heal yourself and change your beliefs about yourself and Lupus.
Life will be full of healing, health, and vitality. Most importantly you’ll be able to live your life on your terms.
Click HERE to get on our waiting list, as enrollment is currently closed.
Thank you for reading and I hope you enjoyed this message.
See you soon.