“Know the rules well, so you can break them effectively.” -Dalai Lama
Living with Lupus has taught me that healing is an inside job.
I’ve written and spoken about the importance of mindset. The root of our stress and problems is our beliefs and thoughts about our situation.
For example, as a Lupus patient, if one has the mindset of a victim, they tend to give their power away to the medical authority and don’t take responsibility for their health.
On the other hand, there are those who adapt a rebel mindset. These people decide to take ownership over their health and do everything to help their bodies heal.
Victim mindsets begin to identify themselves as “Lupus patients” and defend their identity.
Rebel mindsets challenge the limitations of Lupus and decide to actively help their bodies heal and get strong.
Complacency vs Empowerment
Having adapted both mindsets in my life with Lupus, the rebel mindset is so much more liberating. Rebel mindset simply works to help me to own my health and life.
I decided long ago that my Doctors are guides who manage my sickness. I began to understand their position and their role when it comes to my disease.
Relying on the Doctors for answers for many years made me realize their main belief is that I have Lupus and it’s their job to “treat” Lupus.
My goal was to limit my need for their services.
I became my own experiment for various supplements, diets, detoxification, exercises, meditation, self help, etc.
Also, I obsessively studied many disciplines and learned to understand their premise so I could begin to apply them artfully in my life.
I learned that the more you know, the more you can bend the rules to make things serve you.
My Recent Episode
As many of you know I’ve recently been in the hospital.
The whole time, ALL Doctors considered my Lupus to be the underlying driver for my condition.
It began with my Rheumatologist. He dismissed my condition as a “minor” Lupus flare.
Looking back, my labs indicated something potentially far worse.
He treated me with standard plan of care, which included corticosteroid tapering dose for 10 days, and sent me away.
One week prior, he ignored the hot red rash on my face, saying it was a typical Lupus rash. He didn’t believe I was having fevers because in the office it was normal.
I was spilling some protein in my urine since 6 weeks ago, so he kept urging me to go see my nephrologist.
I’ve had three episodes of kidney nephritis so I knew it wasn’t my kidneys. The protein marker was only 2+ and when one is fighting an infection, some protein in the urine is common.
He assumed it was my Lupus and advised me to take my medications, Benlysta and Plaquenil.
I did go see my nephrologist during the day (the very day I became hospitalized) and moved my schedule around to accommodate for this appointment, only to find out I needed preauthorization from my insurance.
My Rheumatologist was relying on my nephrologist to do a CT scan, as I began to have lower belly aches, vomiting, and cramping.
I called him and asked if he wanted to see me to order the CT scan because I didn’t get to see my Nephrologist. I didn’t hear back until late afternoon.
But my fever kept spiking and I felt something was terribly wrong.
My spouse had had enough. He took me to the emergency room.
I was in excruciating pain, couldn’t urinate, fever was high, and it became progressively hard to stay vertical.
Negotiations with My Doctors
I was discharged with an unknown condition. I potentially had aplastic anemia or Plaquenil induced bone marrow suppression.
If it was the latter, elimination of Plaquenil will resolve my issues.
I was to follow up with the Hematologist, Infectious Disease Doctor, and Rheumatologist.
It’s been a busy few weeks with running my business, seeing my patients, and making time for Doctor visits.
My labs began to improve exponentially that by the end of week 2, my lab values were normal.
Remember, when I was discharged, my white counts, neutrophils, and platelets were dangerously low.
The Doctors sent me home with a PICC line to inject antibiotics every 8 hours to take care of the staph infection.
My Hematologist gave me oral antibiotic Cipro to protect me since I had no immune system.
As soon as my neutrophils reached 500, I asked to remove oral antibiotics. I called the Doctors office on my own to do so.
Then with my antibiotic infusion, I was able to remove the PICC line and stop the infusion three days earlier.
With my Rheumatologist, he wanted to have me on prophylactic Prednisone regimen at 10 mg per day. I negotiated it down to 5 mg and let him know I would not stay on it long term (my rebel mindset was showing up here).
I see him next week and you bet we will eliminate the Prednisone.
All this to say, when you’re involved in your care, you can ask questions and be proactive about what and how you’re expected to take the medications.
There is no shame in asking questions about your health with your Doctor.
If your questions aren’t answered in a manner that’s satisfying to you, then give yourself permission to seek out another Doctor that you resonate with.
You are your biggest advocate, so know your rights and know your body.
Lessons I Learned from this Experience
Life is fleeting.
When you don’t have health, you have nothing.
Doctors overprescribe medications to cover liability.
Conventional medical system is amazing at sick care (I would have died without them).
Trust your gut, listen to your body.
Love, laugh, and live joyfully.
We are our best Doctor.
My mission in life is to empower as many as possible to take responsibility for their health.
After a sick episode, get busy healing the body.
Give gratitude for everything, including the experience.
I realized how strong I am today thanks to living with Lupus and my rebel mindset.
The experiences that I’ve lived through because of Lupus enables me to have more compassion, humility, love, empathy, and understanding for those in pain.
I also realize what miraculous bodies we all have.
I already feel my body is recovering from this episode and fighting back stronger than ever. I’m just busy supplying it with whatever it needs to do just that.
I have so much gratitude and love for all of you in my life. I hope my experiences help you to find the strength to fight just a bit longer and harder and change your beliefs to serve your needs.
Again, I want to say thanks so much for being with me on this journey.
See you next time.