My First Pearl

My experiences through the past 25 years have been priceless. The many faces of lupus are imprinted on my heart and  there are sixty inches of  precious pearls on my strand, so I had better get started.

I was nine when my journey started.

There were many theories on what ailed me as young child.  One was Rheumatic Fever, another was mono.

My first pearl on my strand would be my mother, Rose.  When I first came down with symptoms she was the driving force behind my wellness.  My mom had four children and worked full time.  As I look back and reflect on our many hospital stays and doctor visits, I am now aware how cumbersome the task of caring for me was.  Since lupus was very mysterious, I was not correctly diagnosed with lupus until I was 27.

Doing her very best to take care of me, she and dad would pull me out of school each winter (we live in Ohio) so that we could be in Florida. After all isn’t the sun healthy for everyone? Obviously not true for lupus patients.  So, each winter I had rashes and sunburns.  They did not know that the sun was my enemy.  

**Do you know that the sun is the enemy for lupians? This is true.  Long exposures to the sun can bring a dormant lupus to surface.  We are very sun sensitive and many of us suffer from photosensitivity.  Sun tan booths are an absolute no for us.  Sunbathing too!  We need to limit the amount of time we are exposed to the sun.  If you must go in the sun at its peak, be sure to use the highest level of sun block you can find.  Remember to read the instructions completely.  There is a company that sells sun protective clothing for those that must be in the sun.  Also I have seen UV umbrellas. Try to limit your exposure and do not go out in peak times. Remember too that because we lack the sun we will most likely need vitamin D to take its place. ( Ask your doctor about it).

The other challenge was at the same time, I took penicillin every day of my life until I was 18.  Really?  How crazy was that? You need to know that the biggest challenge a lupian can face is infections.  We have a very difficult time fighting off infections and often infections are the cause of our demise. 

Since I was taking large doses of antibiotics, I was at risk for my body becoming complacent to the drug.  I was constantly fighting off colds, strep throat, etc.

So, at the end of the day, my family thought they were helping me but were actually contributing to my illness.  How sad is that? They did not know. They thought they were doing what was best for me.  Still… my mom was the one who brought me to the Lupus Foundation of America when I was 27.  She was a member first.  She was determined to make up for the past and get me on the road to wellness.  I remember fighting her tooth and nail, not wanting to attend that first meeting.  I followed her and bless her heart; she knew it was exactly what I needed.

To be in the presence of others that have walked in my shoes was such a relief. Finally, there where others out there in the world that had similar challenges.  Through the years, I have learned so much from the LFA and most importantly, I have fostered relationships with my fellow lupians that have lasted my lifetime.  Together we have met challenges, and together, we have championed them.  One of my favorite sayings is “There Is no I in lupus, but there is an US!”

I will be eternally grateful for my mom dragging me to that first lupus meeting.  Today I lead a support group.  Wow!  It is better for me than most of my meds I take! 

Get involved with the Lupus Foundation of America; I promise you, it will change your life.  There is no reason today that a lupus journey should be a lonely and misunderstood one.   Mom knows best, and I am grateful she took charge and did not give up on finding what was wrong with me.  It was through her tenacity that I got diagnosed.