My Rebel Story

by | Dec 5, 2017 | Lupus Blog | 0 comments

Since 1998, when enrolled in a graduate program, I felt suboptimal, always tired, and I struggled with migraines. I attributed these symptoms to the stress from school.

Officially diagnosed with Lupus in 1999, the process of getting diagnosed was painful.  From severe hair loss, rashes, severe pain, and fatigue, I had to take a leave of absence from my graduate studies.

For me, getting the diagnosis was actually a relief.  At the time, I welcomed the prednisone as it helped to control the physical deformities that Lupus caused, like hair loss and rashes.

Then in 2004, Lupus struck hard after I gave birth to my first son.  It attacked my kidneys and chemo-medrol- maintenance therapy ensued for about 1.5 years.

Lupus struck me a second time in 2008 after delivering my second son and the same treatment was rendered.

My Rheumatologist and Nephrologists joke that I fire them when I’m well.

In truth, I did.  I was on no medications for over 2 years and was determined to beat Lupus. I enrolled in the courses through the Institute of Functional Medicine and committed to changing the course of my disease.

Then Lupus struck me for the third time in 2013.

With similar approaches I recovered fast and again, as with each relapse, my doctors are amazed at how great my recovery is.

As many of you understand, this disease that we share, is ruthless.

We don’t know when, how, and where it’ll strike.  It’s a monster within.

I have a healthy respect for this disease and I understand intimately all your struggles.

The struggles of getting up in the morning, with a big question of “now what?” when you are so overwhelmed with the disease itself.  Believe me, it’s so easy to wallow in sorrow as Lupus sucks the livelihood out of you.

It challenges your emotional, physical, psychological, and spiritual being. It also changes the dynamics of your relationships.

So on this third go around, I was offered Benlysta as a relatively safe new drug to try.

I told my Rheumatologist that I did not think my body could tolerate another flare, so I decided to go ahead and receive the injections.

During the last 18 months of receiving the injections, I had an opportunity to spend much more time in my Rheumatologist’s office, as the infusion time is about an hour once a month.

I watched as the waiting room filled to capacity with patients who have various autoimmune conditions.

Seeing this allowed me to reflect on the chaos, from waiting for an office visit, which can sometimes take up to 3 hours, to the lab work that frequently gets misplaced or not correctly processed, to the insurance processing issues and errors.

Because of this, I grew to really understand that for me, this process will not be a part of my life.

More importantly, I didn’t want to be subjected to a “system” that is just not effective.

I don’t like the situation I’m in; I don’t like that I have Lupus.

So about 4 months ago, I created Lupus Rebel to commit my life to restoring my health, as well as to help as many as possible REVERSE the progression of their disease.

This movement aims to create a better way to live our life with Lupus.

I believe Lupus is REVERSIBLE. Lupus Rebel challenges status quo by redefining how we CHOOSE to live with Lupus and defy the odds. How? We utilize holistic approaches to regain control over our health.

Personally, I understand the culprit of my third relapse.

There was so much turmoil in my marriage for years and that relapse was the year that lead up to my divorce in 2014.

A health crisis makes you realize that your time is numbered in this world.

I had to make some hard choices and it was an extremely stressful time.  And we all know, stress is bad for Lupus.

Healing starts from the inside.  I can tell you that it wasn’t until I became a single mom I realized that I needed to begin to really fill my cup.

For the last three years I have been working on myself, and the most important take away is that once I began to apply the health advice that I’ve been giving my patients for years, to myself, my hair, health, and livelihood was restored.

A few months ago, I was talking to a friend and I commented that I’ve never felt better in my life.  Really feeling better, hair stronger, skin glowing, and physically stronger.

The need to share this and reach out to those who need help is how Lupus Rebel came to be.

That’s why I do what I do.

I don’t want to sit here waiting for another flare, dependent on the medical system to tell me what medication to take.

I want to get busy creating health for myself to be able to not only support my kids, but to live my life to the fullest.

So we’ve got some conditions that we need to be aware of.

  • We must learn to bend the rules
  • We must change our mindset
  • We must strive forward everyday
  • We must learn to love ourselves again
  • We must learn to redefine FEAR
  • We must stand together
  • We must dare to challenge the status quo

For those of you who are reading, if this resonates with you, please leave comments, share this message, and help support our movement by liking our Facebook page, subscribing to our podcast and YouTube channel, and leaving a review of our podcast on iTunes.

We are in this together. I can’t possibly do this alone. We must stand together, arm in arm.

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