I thought for International Lupus Awareness Month (October), that I would take this time to personally thank the entire Lupus Community for ALWAYS being there for me when I need them the most.
Here in the US, our Lupus Awareness month was changed to May so as not to conflict with Breast Cancer Awareness, which is also in October…but despite that, we are still part of the global community and stand strong with the rest of our international friends. Lupus knows no boundaries, it effects people of all races, gender, countries, religions and even our 4 legged friends too. It does not discriminate.
When I was first diagnosed, I remember how lost and afraid of the unknown I was. I was literally terrified. I had heard of Lupus prior to that but really had no knowledge of it whatsoever. You google statistics, etc on the internet and at the time, there really was nothing encouraging that I was reading. Doom and Gloom. And lots of the information available was confusing.
I remember reading how there was no new treatments at that time in over 50 years. Most of the treatments were considered “off-label” (created for other diseases, not Lupus). Also, the medications being used are highly toxic! What the heck?!!!!! That made me SOOOO ANGRY! I felt like no one cared about us. Why werent there any new medications? Was it because we were as a community predominantly women and we were being discriminated against by the medical community? Lots of anger and resentment popped into my head.
I remember stumbling upon an article written about Breast Cancer around that same time period. Basically, the article told the history of Breast Cancer Advocacy and how they went from being a virtual unknown disease to one that everyone became familiar with. It told how the early Advocates literally walked door to door to companies, called them daily urging them to help make a difference. They never gave up..they kept trying everything that they could think of to get the Corporations to take on their cause and it eventually worked. 15-20 years ago, no one really knew much about Breast Cancer, but advance ahead into the future a few decades and now everyone knows what it is.
I decided at that time, that I would do anything and everything in my power to try to change the future for Lupus too. Dont like whats happening? Change it- make a difference 😉 God blessed me with a big mouth and a vocal personality and voila here I am now.
I have been blessed to have met some remarkable Lupus patients from around the World. I know people from almost every continent with the exception of maybe Asia. Not sure why that is..but maybe in time, that will change also. It is such an honor for me to have gotten to know people from all over the world and to see things from their perspectives. I totally love my international friends. They bring me such joy and love. I think if our own governments would take the time to get to know people from other countries on this kind of a level, there would be hope for World Peace.
My Lupus family means the world to me. They are one heck of an awesome group of people! They bring me hope, love and encouragement at every turn. I have received so many letters of thank you from some of them that have literally brought me to tears because it touched my heart so much.
From the bottom of my heart, Thank you for everything that you do for me, my Lupus Friends. I love you all so much. Sending lots of love and hugs your way and wishing pain-free and symptom-free days xxooxx
[wearing my orange colors to support my international friends during International Lupus Awareness Month]
Orange is the international color of Lupus Awareness and Purple is also a Lupus Awareness color here in the US for organizations like the Lupus Foundation of America and the Alliance for Lupus Research. Just in case you were wondering about why the different colors because it does get confusing.