Here it is, the fourth day of May, the 4th day of Lupus Awareness Month here in the United States; in the UK it is in October but this is a global issue that requiresan entire month of a flurry of activities nationwide to spread awareness of exactly how pervasive, debilitating, and life-threatening this disease is.
I have been planning for this month since January, a tight schedule packed with blogging, posting the Daily Fact from the Lupus Foundation of America on Facebook and Google+; attending events physically if I could, virtually if I cannot. How ironic yet fitting of the “expect the unexpected” nature of Lupus on a daily basis that a little over two weeks ago I was hospitalized for a heart attack due to years of this disease attacking every system of my body, every joint, my entire spine.
I’ve been battling this auto-immune disease for 14 years now that I know of; I’m sure I went undiagnosed and actually have had this increasingly devastating process much longer. Anyone with Lupus knows exactly what I mean, but do you?
No. That’s the resounding answer of a recent poll that the majority of people not only have never heard of Lupus or SLE, if they have they have no idea what this disease is, how it’s treated, the number of people, mostly female, that die every year from complications of Lupus.
The tv show “House”, brilliantly played by actor Hugh Laurie as Dr. House, put Lupus on the map to viewers with his infamous diagnostic line “It’s NOT LUPUS!!” driving all of us Lupus Warriors nuts in dismay that yet another opportunity was again lost to show the world exactly what Lupus IS! Yet we also cheered because at the least, the name of this disease itself was finally being programmed into the viewing publics’ mind. We wouldn’t wish this disease on anyone; we all wish, hope, pray to live long enough to see a CURE for lupus in our lifetime..especially those, like me, who already know we are living on borrowed time every morning we wake up & are still alive..those who know they’re life expectancy is drastically shortened yet much longer than the original 10 year death sentence Lupus was not too long ago..that Benlysta, the first drug in 50 YEARS finally approved by the FDA to treat lupus specifically a long-awaited victory.
I will do my absolute best to spread awareness this month as I have for many years but obviously my focus must remain on my continued recovery; my still very active lupus flare that began back in December that stopped my blogging & my entire life in it’s tracks..to be the best Mom I can possibly be to my now teenage son, my living miracle that keeps me going, gives me the strength to dig deeper within to push through every day regardless of how I physically feel.
I will never give up or give in to lupus or my circumstances. I will never stop trying to help & support the many amazing women that have come into my life over the years from Facebook; we are united in love by a terrible disease yet the bonds we have strengthen each of us in numbers alone.
No, we don’t look sick on the outside but on the inside of our bodies our immune system has turned against us. We need your help, your love & support; we need you to scour the internet, go to the Lupus Foundation of Americas’ website, sign petitions for research money from our government; we need..you. Please read the Call to Action article by using the link posted at the top.
Thank you for embarking on this journey with me; please search & find the millions who are devoting their lives with lupus and read their stories for I am just one voice of so many.