I feel a deeply seeded discontentment that sometimes comes up to my throat about the present state of affairs in Lupus management.
For the 18 months, I’ve been in my Rheumatologists office receiving Benlysta infusions monthly and realized how hectic and chaotic the office is.
Every time I’m there, the waiting room fills up to a point where there’s nowhere to sit. Everyone, there is waiting for their turn with the doctor. To do what? Review their quarterly lab results, check on meds, and be on their way. I’ve had to wait up to 3 hours in that office to get my turn.
I think about time invested in such routine visits and what the outcome was.
I was diligent about my visits as there were times when I wanted to get off my meds and if my lab values didn’t reflect quiet disease activity, then there would be no adjustment.
The butterflies in my tummy in anticipation of the lab results used to cause my blood pressure to spike.
Never Be the Same…..
I didn’t know what that meant to live with Lupus. I’ve never been sick, never been to the hospital, and I was known to those around me as the epitome of health.
I hated it. I cried, wallowed in my sorrow….retracted from life and isolated myself.
But life isn’t something that you stop living when you’re struck down with a disease.
At the time, I was severely fatigued, rashes out of control, pain ravaging my body, and hair loss to a point of bald spots.
I fought to stay and complete my graduate program, but I just couldn’t.
I asked for a 5-week leave and it was the hardest and the saddest thing I’ve ever had to do. To go to the administration office of our department to reveal my health crisis.
I don’t know why I felt so sad about it at the time, but in retrospect, I feel I was sad because it was a defining moment that took a different trajectory in my life.
In my 19 years as a clinician, I’ve learned that we come not only in all shapes and sizes but also with very different life perspective. That we see the world as “WE” are not as “IT” is.
When I sought out the Lupus Support Group in 2005 and attended for the first time, I knew I didn’t want to be around the faces of Lupus.
Why? Because it scared me. It scared me to witness of the possibilities of my disease progression.
It was then that I realized that I didn’t need to learn “coping” mechanisms, rather, I needed a new goal post.
That this battle isn’t the one that the meds or your Doctors fight for you, it was a battle no one can help with, but one that only you can determine the outcome.
I don’t think this realization comes to all of us at the same time or at all.
I think that we are all different in our ways of coping. But I was intrigued by the inherent “perceptive” views that can so alter the way we see the world.
When going against the grain and making progress, it’s a lonely path. There’s an unspoken ego in medicine where the patient is the receiver and Physician is the provider.
I haven’t met many Physicians that are truly egoless and advocating patients in their health path. But I don’t fault them for this as it is what they were groomed to be.
They are institutionalized in medical school to think pathology and disease. Then spend another 4 years clinically managing the disease.
An average physician spends 6 hours on nutrition in all of their 8-year training.
Those that are exceptional are the ones who have the courage to place their ego aside for the true benefit of their patient and is willing to go the distance to change the rules and dare to use lifestyle before medicine.
They are the ones with humility enough to admit what they don’t know to begin to help their patients to heal rather than leading with the pharmaceutical protocol.
FEAR can mislead
When faced with a serious health crisis, all logic leaves you. So in picking up the pieces of your life after the diagnosis is only the beginning of the new, unknown life ahead.
I wanted so much assurance and security in knowing the outcome of my disease when there was no way of knowing.
But I can tell you that every day that passes living with this disease, I think the anticipation and the perception of the anticipation are what ultimately determines your outcome with Lupus or any disease.
You see whether you’re scared, upset, or simply burnt out from feeling bad, if you can muster up enough optimism to take just one step forward by doing one little thing for your health, then you’ll find that it’ll make or break your success.
Depending on medications to manage or control your disease progression will be a dangerous gamble. Over time, you are stuck with the disease, because that’s your perception. You are on a path to defend your disease.
On the contrary, if you take responsibility for your health and begin to help your body create health, you’ll find yourself on a new path. A path where hope and possibilities now fuel your every step forward with the expectation of reversing Lupus. Your outcome will be quite different from the alternative.
I chose the latter and I am so much better for it. I hope you do too. Being in charge of your destiny vs living your life without a clear destination is like a ship without a rudder. You end up living your life that others influenced on your behalf.
For me, that’s not an option.
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