No matter how hard and how painful the experience of being sick was, unless one goes through it, he or she will never truly know what it was really like.
It’s now been one month since my discharge from the hospital and I promised myself that I would never forget the experience.
I didn’t want to forget the “feelings” the experience evoked in me and didn’t want to take this important and pivotal experience for granted.
I felt fear, hopelessness, despair, pain, anger, frustration, and doubt during this episode.
I wanted to share my experience to empower and provide insights to those who maybe going through something similar.
Also, to encourage those of you who need a bit more motivation to take responsibility for your health.
Sick to Health Spectrum
To literally go from super healthy to almost on my death bed, and back to fully recovered within a short time makes you realize just how fleeting our lives are.
This experience proved just how much we don’t know in the field of medicine.
No one told me I would die. But I felt as if it might happen and had to prepare my mind for the idea of death.
I knew that my failing immune system and the underlying infection made all the physicians very nervous.
The worst scenarios were entertained in my mind, including Lymphoma, Leukemia, or Aplastic Anemia, all of which can be life altering.
In the hospital, I resolved to be ok with whatever came my way and was overcome with a strange sense of calm that is completely out of character for me.
All my life, I’ve had an impact on whatever outcome I can produce, which included how I deal with Lupus.
But the recent episode was unlike my past experiences where I was able to quickly bounce back to full recovery.
I was completely dependent on the hospital staff and the physicians who oversaw my care, all of who didn’t really understand what was going on with me.
I felt worse everyday so my hope was just about zapped.
Multitude of medications were tried to calm my symptoms which included fever, constipation, anxiety, infection, and pain.
Many antibiotics were tried before finding the one that worked to decrease my fever.
I was discharged with the antibiotics to be infused via the PICC line every 8 hours for over 3 weeks.
Today I had my follow up after the PICC line discharge and the goal for my visit with my new Rheumatologist was to make sense of what next.
During the whole experience we now know that Lupus didn’t contribute to the sickness. Rather the medication to suppress Lupus was the root cause.
Because I was now off of the antibiotics and my immune system finally had an opportunity to bounce back to where it needed to be, as a “preventive” measure, my Rheumatologist suggested to put me on Benlysta, which is an immune suppressant drug.
Remember, the Plaquenil was the preventive drug of choice for Lupus which sent me into this mess.
So I asked him if I could give my body some time to recover from the antibiotics and the Plaquenil, rather than to be so quick to add yet another medication.
I expressed how concerned and scared I am of the unknown side effects of any medications more so now than ever before.
He listened and warned me that if we don’t do anything, there’s a potential for the Lupus to flare. Then he’d have to put me on the dreaded Prednisone to suppress my immune system.
I let him know that I respect Lupus and his authority as a doctor. I only want some time to let my body recover from the damage of such a traumatic event for a couple of months.
I also shared with him about my history, my education, and what I do for myself as a Functional Medicine practitioner, incorporating everything that may help my body recover and stay in remission.
He agreed and asked me to return in 1 month to recheck my Lupus labs and decide what to do.
When my Lupus serology is completely normal and in remission, all my doctors have always wanted me to be on Plaquenil to prevent flares.
Not one of them asked me to change my diet, stress level, or other lifestyle choices that may be putting extra burden on my body to cause a flare.
Truth is that stress alone will not cause the white counts to near zero.
Stress will compromise the immune system to a point where it can trigger a secondary effect. This can cause a tertiary symptom and can carry over into multitudes of reactions in our bodies.
I don’t know exactly what happened to me.
I do know it happened and I am in the process of focusing on restoration of my body first and foremost because there’s no one thing that was responsible for my experience.
It was a concerted effect that was triggered, exacerbated, and mutated by multitude of things.
This is the heart of the matter. That no matter how much I know and understand, it’s impossible to know exactly what caused this.
Lupus is a wild card that no doctor, including the Rheumatologist knows.
We are all individually different with different genetics, experiences, tendencies, and lifestyles.
Lupus isn’t the only disease that is poorly understood.
It’s when we admit we don’t know with certainty that we have to rely on faith.
When we speak of the root cause in Functional Medicine, even then we are not certain of what the root cause is.
We take collective data based off of the “story” the patient tells from the inception to the present and try to figure out where the “imbalances” took place.
We test labs where appropriate and address the lifestyle factors that we can help patients manage. Only then can a Functional Medicine intervention be effective.
The best doctor is YOU when it comes to your own health.
There are so many things that you maybe doing day in and day out that’s causing your body to be out of sorts to where you end up with a disease as a consequence.
Physicians have an effect “treatment” for your disease. It’s our job to not be diseased, rather, focus on creating wellness and health every day.
But human nature causes us to wait until we get a wake up call.
As someone who understands the experience of being sick, it is in your best interest to prevent disease and flares rather than wait for them to happen.
Taking responsibility is just that.
Understand normal physiology and then change what you FEED your body and mind, and incorporate MOVEMENT to promote healthy metabolism to detoxify and eliminate waste both from our bodies and minds.
It’s that simple.
Did you know we have programs to make it easy to take charge over your health?
To make it super simple, we’ve created a step by step program to help you to not only recover your health but to reverse your condition and prevent future flares.
It’s called Alkaline Transformation for Lupus. Link is here, sign up today!
I’d love to hear from you. Please leave comments and share your experiences and thoughts.
Please help us spread the word on empowering as many people as possible to take charge over their health.
As always, thanks for watching, see you next week!