What Doctors Don’t Tell You About Lupus

by | Aug 28, 2017 | Lupus Blog | 0 comments

What Doctors Don’t Tell You About Lupus

After living with Lupus for over 19 years I finally have some perspective.  What doctors don’t tell you about Lupus is that they really don’t know what the cause is or how you will respond to the medications and treatments.  It’s a big mystery to them.

I used to be that patient who would sit at the doctor’s office with blood pressure elevated because I didn’t know what to expect.

And this is from someone who’s more versed than your average Lupus patient.  I had a Doctoral Degree in Physical Therapy when diagnosed with this “confusing” disease.

I met my first Rheumatologist at Loma Linda University and I have to say his bedside manner was second to none.  Although my current Rheumatologist comes close.

My visits got easier over time and when my symptoms were finally under control over a period of about 2 years, I began to ask questions about the medications and curiosity sparked in finding a solution to this problem of mine.

I became anxious about getting off the toxic meds ASAP and over time, we were able to decrease the dosage.  This was a true fight for me with my Rheumy to get off the meds, as he was weary of taking me off the prednisone.

This is where we as patients need to become educated and empowered.  When our symptoms are under control, then it’s up to us to start rebuilding our health.

Truths About Lupus

Doctors don’t know what the outcome will be for you.  That’s the truth with Lupus.  Yet, so many of us place our confidence in our doctors to “cure” us or keep our Lupus under control.

My current Rheumatologist is a renowned physician with the best bedside manner ever known in medicine, in my opinion.  She is compassionate, caring, and hard working.

But she only has so much time for me or my Lupus because she’s traveling all over the world for various symposiums, medical conventions in Rheumatology, and she sits on the board of many nonprofits supporting them all….

I honestly don’t know how she does it but I am truly thankful for her as she strives to be on the cutting edge of this AUTOIMMUNE epidemic.

I do understand that these meetings and conventions will help with new research and finding treatments to address specific differentiated autoimmune conditions.  And I do know that while these clinical trials are the first step in finding the cure, they are not the ultimate solution for the future. The solution should be in prevention, in my humble opinion.

With the invention of antibiotics, we have been able to save many lives, but we are now having issues with tough strains that are no longer responsive to the antibiotics, and this is becoming a huge issue. And us Lupies have to rely on various antibiotics, as we are susceptible to many infections.  This is just an example to support my stance.

Perpetual Cycle

I’ve come to realize that we’re creating a perpetual cycle of disease. As a Lupus patient, as well as a healthcare provider, the more logical option is to understand the CAUSE in order to PREVENT autoimmunity altogether.

There are clear solutions to this problem, yet, the medical system is looking in the wrong direction, and often us Lupus patients are passively waiting for the “cure”.

Lupus awareness is important but what’s more important to me is knowing how to HEAL Lupus.

Medical System

We relocated from Loma Linda, CA to the suburbs of Georgia in 2003 and I was in the market for a Rheumatologist.  Having come from a renowned research hospital, Loma Linda Medical Center, where I attended school and was overseen by my favorite Rheumy, I wanted nothing but the best.

I looked to Emory Medical Center and met the best doctor there, or so I was told.  Long story short, after 4 months of waiting, I was finally able to get an appointment to see the Rheumatologist, and I was ultimately disappointed because I felt as if I was talking to the wall.

First, I sensed that he couldn’t care less about my Lupus or me as a patient, and it was clear to me that the interest was lacking.  I never went back.

Teaching hospitals like Emory attract lots of physician residents and foreign trained physicians, and many serve time there to get to the next level in their professional career.

I have many physician friends and I understand their struggles intimately.  Many of them have lost their passion for the work due to the bureaucracy with the current health care system.

Pivoting Moment

When my Lupus became life threatening in 2004, I sought out the Lupus Foundation of America.  I was in Georgia so I met with the founder the of the Georgia chapter at the time, and to be honest, their focus was on Lupus awareness, promoting Lupus awareness walks, and fundraising.

I honestly didn’t feel any genuine interest for Lupus patients from the chapter leader. I felt the foundation was more about raising funds.

I didn’t know how all those efforts would help in the long run, but I kept in the loop and attended symposiums and patient support groups.  I was desperate for ANSWERS.

When I attended the symposium here in Georgia, there was a forum discussion with a row of physicians sitting at the front of hundreds of patients who were asking questions mainly on “medications” and the plans for future research.

Then I supported the local Georgia chapter in attending the gala here locally in 2009 and again, I felt the focus was clearly not where I wanted it to be.

Don’t get me wrong, these events are all very important, but I know all too well that focusing on the problem, is not the answer.  Medications can be a short term solution, but for long term health and prevention, we must be proactively “creating health”.

This takes discipline, persistence, commitment, and most importantly ACTION.

I’ve also seen a few Lupus blogs and they seem to be more about spreading  Lupus awareness, so I decided that I would devote my blog site to be more about the day to day SOLUTIONS to our deep problems.

I call this site the Lupus REBEL because we must start to push the boundaries a bit to radically change the current state to one that is more conducive to healing and hope for us Lupies.

We’ve got solutions that have worked wonders for me personally, as well as the patients I treat at my center.

You can begin taking action today by downloading this Lupus Diet Guide.

Visit our Lupus Rebel Supplement Store to support your health, as the root cause of our Lupus begins in the gut.

Thanks for reading. I’d love to hear from you, so please leave me feedback, share, follow me and subscribe to my YouTube channel.

 

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