About
Hello there and Welcome to the Little Living Lupie blog!
My name is Solange (sew-lawn-j) and I have lupus. Thanks for stopping by my little corner of the internet!
Little Living Lupie came about when I was taking a "new" media class at Boston University where I went for undergrad and was required to create a blog over the course of the class. During my time in the class, I was suffering from a lupus flare. Getting up and out of bed, during winter and the beginning of spring, was hard but I made it to class up until I had to be hospitalized for kidney failure. I was in my senior year of college and worried that all my hard work over the last four years were for naught because I was in the hospital and unable to attend classes. Well, no matter how many times you may find me complaining somewhere on this blog, I am one fortunate, blessed, and highly-favored person. My professors were incredible and accommodating and I was able to complete my courses from my hospital bed. Remembering that I had to create a blog (I'm a procrastinator, au natural), I decided to write about what I was living in that moment: living a lupus flare. My flare was escalating to kidney failure and my doctors wanted to preserve my kidneys so I began Cytoxan chemotherapy treatment. I wrote about my experiences: sights, sounds, thoughts, young adult woes. I always turned to journal-ing when stressed or filled with so much feeling I didn't know what to do with it. (I didn't always have someone to talk to.) So, this seemed like a natural solution to my assignment problem. It turned out to be something that really helped me work through what was happening while still trying to reach milestones like everyone else.
So, if you have any questions - shoot them my way! if you have any concerns - shoot them the other way! Buckle up and get ready for a bumpy, windy, sassy, kind-of gross, kind-of scary, kind-of funny, maybe concerning, fully researched, fully authentic ride!
Little Living Lupie came about when I was taking a "new" media class at Boston University where I went for undergrad and was required to create a blog over the course of the class. During my time in the class, I was suffering from a lupus flare. Getting up and out of bed, during winter and the beginning of spring, was hard but I made it to class up until I had to be hospitalized for kidney failure. I was in my senior year of college and worried that all my hard work over the last four years were for naught because I was in the hospital and unable to attend classes. Well, no matter how many times you may find me complaining somewhere on this blog, I am one fortunate, blessed, and highly-favored person. My professors were incredible and accommodating and I was able to complete my courses from my hospital bed. Remembering that I had to create a blog (I'm a procrastinator, au natural), I decided to write about what I was living in that moment: living a lupus flare. My flare was escalating to kidney failure and my doctors wanted to preserve my kidneys so I began Cytoxan chemotherapy treatment. I wrote about my experiences: sights, sounds, thoughts, young adult woes. I always turned to journal-ing when stressed or filled with so much feeling I didn't know what to do with it. (I didn't always have someone to talk to.) So, this seemed like a natural solution to my assignment problem. It turned out to be something that really helped me work through what was happening while still trying to reach milestones like everyone else.
Once life became busy, in sickness and in health, I did not keep up with writing. Depression and Anxiety crept up. So did Calciphylaxis. Lupus can be a consuming and depressing condition and finding inspiration and the energy to write can be daunting. This is why there are gaps between posts and I may struggle recalling some experiences (fugue states). I'm revisiting this blog (since it's conception) to try and memorialize my experiences, especially my most recent life-altering experience with Calciphylaxis.
In this space, I hope to illuminate the varying degrees lupus affects the day-to-day of it's patients, the multitude of other conditions that may come along with it, and how to still thrive even during uncertain times. I hope to be a source of inspiration or, at the very least, a resource. I do my very best to be articulate and knowledgeable. I don't pretend to know everything, because, with lupus, it feels like I know very little. (there are surprises. keeps you on your toes.)
In this space, I hope to illuminate the varying degrees lupus affects the day-to-day of it's patients, the multitude of other conditions that may come along with it, and how to still thrive even during uncertain times. I hope to be a source of inspiration or, at the very least, a resource. I do my very best to be articulate and knowledgeable. I don't pretend to know everything, because, with lupus, it feels like I know very little. (there are surprises. keeps you on your toes.)
I have had the honor of being featured in the Lupus Foundation of America Magazine and been blogging about my experiences since 2010. I have a Bachelor's degree in Public Relations and a Master's degree in Arts Administration both from Boston University in Boston, Massachusetts. I have had the privilege of working for known institutions such as the Huntington Theatre Company and Beth Israel Deaconess Medical Center in Boston, and the Pennsylvania Humanities Council in Philadelphia. I currently live in Lehigh Valley, Pennsylvania with my husband, four cats, and two dogs, working as a freelancer and consultant while doing home hemodialysis, recovering from Calciphylaxis, and working towards getting back on the kidney transplant list.
Find me on my social media channels: @sol.lady_sayshii (Instagram) s0langegarc1a (Facebook)
TIMELINE OF SIGNIFICANT LIFE EVENTS:
12.07.1988 I have arrived. BORN in St. Croix, USVI.
1996 I discover my love for theatre.
1997 Little brother born. So Excited.
1999 Move to Ohio.
2000 Lose Stepfather to Motorcycle Accident. Move to Florida.
2002 Start feeling lupus symptoms, I just don't know it yet.
2003 “I think you may have rheumatoid arthritis.” - some doctor
2004 “SOMETHING SOMETHING ANA SOMETHING” - my first rhuematologist
2005 “Yep, It's Lupus.” - some rhuematologist
2006 “It's actually Lupus Nephritis.” - Mayo Clinic, Graduate high school, Move to Boston for college.
2007 Kidneys failing (lupus flare). Must start Cytoxan treatment. Move back home. Can't stand it. Move back to Boston.
2009 Kidneys failing again (lupus flare). Still doing Cytoxan. The struggle is real.
2010 Create this blog. Graduate from college (somehow). Attempt adulting.
2011 Go back to school: Grad school edition.
2013 Complete grad school. Level up. Move to Nashua, NH. Prepare for preemptive kidney transplant.
2014 Got a kidney transplant. Got married.
2015 Moved to Pennsylvania.
2016 Lost the kidney. Start hemodialysis.
2017 Move to California. Start Peritoneal Dialysis. Develop Calciphylaxis. Live in Burn Unit.
2018 Survive. Move back to Pennsylvania. My THIRD lease on life.
2019 Mental Health struggle. It is okay not to be okay.
2020 New coping strategies. Pandemic. Quarantine. Home hemodialysis. Working on getting back on the transplant list.
TIMELINE OF SIGNIFICANT LIFE EVENTS:
12.07.1988 I have arrived. BORN in St. Croix, USVI.
1996 I discover my love for theatre.
1997 Little brother born. So Excited.
1999 Move to Ohio.
2000 Lose Stepfather to Motorcycle Accident. Move to Florida.
2002 Start feeling lupus symptoms, I just don't know it yet.
2003 “I think you may have rheumatoid arthritis.” - some doctor
2004 “SOMETHING SOMETHING ANA SOMETHING” - my first rhuematologist
2005 “Yep, It's Lupus.” - some rhuematologist
2006 “It's actually Lupus Nephritis.” - Mayo Clinic, Graduate high school, Move to Boston for college.
2007 Kidneys failing (lupus flare). Must start Cytoxan treatment. Move back home. Can't stand it. Move back to Boston.
2009 Kidneys failing again (lupus flare). Still doing Cytoxan. The struggle is real.
2010 Create this blog. Graduate from college (somehow). Attempt adulting.
2011 Go back to school: Grad school edition.
2013 Complete grad school. Level up. Move to Nashua, NH. Prepare for preemptive kidney transplant.
2014 Got a kidney transplant. Got married.
2015 Moved to Pennsylvania.
2016 Lost the kidney. Start hemodialysis.
2017 Move to California. Start Peritoneal Dialysis. Develop Calciphylaxis. Live in Burn Unit.
2018 Survive. Move back to Pennsylvania. My THIRD lease on life.
2019 Mental Health struggle. It is okay not to be okay.
2020 New coping strategies. Pandemic. Quarantine. Home hemodialysis. Working on getting back on the transplant list.
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