#TheLikenessofLupus: What is Lupus?
Happy first day of Lupus Awareness Month!
If you've stumbled onto this blog via my various social media platforms, WELCOME! If you're a reader regular, WELCOME BACK!
Like I mentioned in my previous posts and on my social media platforms, I haven't really kept up with this blog. It's been years since I've tended to it since my focus has really just been staying alive. Since we last "spoke" I was complaining about some boy (probably) and my feelings and young adulthood, plus being a lupus nephritis patient who would eventually need a kidney transplant...lose it...and learn a whole lot about human biology and the human condition.
A lot has transpired since then. But before we get into all of that...let's cover the basics.
DAY ONE: WHAT IS LUPUS?
Lupus is a chronic (long-term) disease that can cause inflammation and pain in any part of your body. It’s an autoimmune disease, which means that your immune system — the body system that usually fights infections — attacks healthy tissue instead. Lupus most commonly affects your: Skin, Joints, and Internal organs (like your kidneys and heart). Because lupus affects many parts of the body, it can cause a lot of different symptoms. (lupus.org)
WHAT ARE THE TYPES OF LUPUS?
When people talk about lupus, they’re usually talking about systemic lupus. But there are other types — including cutaneous lupus, drug-induced lupus, and neonatal lupus. (lupus.org)
For the purposes of this blog, I will be talking about my experience with systemic lupus nephritis (kidney involvement).
WHAT'S YOUR STORY?
My story is a long one. I've had lupus most of my life. I don't remember a life without it. My detailed story can be found here, but here's a quick timeline:
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That brings me to today. I just got back from my third home hemodialysis training session. My husband, Zach, and I are getting trained to be able to do dialysis from home. It couldn't have come at a better time considering the state of the WORLD right now, let alone the United States (#1 in COVD-19 cases - yay?) My access has been giving me a lot of trouble. What sucks is I don't have a ton of options for accesses anymore.
My body is really worn out and options have been exhausted. I'm only 31. I'm a tough stick. I currently have a graft because every fistula attempted failed. I've had two angioplasty's on my graft and am scheduled for my third on Monday. My body can't seem to keep this sucker from clotting or just fucking up. (Oh. I forgot to mention...I'm an adult who uses adult language. This is who I am. Me. I speak this way too. [shame on me, I guess? yea, I don't care.] So leave your sensitivities at the door. This is going to get a lot more up close and personal raw nitty gritty and ugly (so much so that that whole sentence didn't need any commas)). My graft is my access so I can get dialysis treatment. It is in my left arm (non dominant). I need dialysis treatment because I have kidney disease as a result of my lupus... and there is more...
That's all we will cover for today. I think that's a whole heck of a lot that I inundated you (the reader) with. SO, to review: today we covered WHAT IS LUPUS and a timeline of SIGNIFICANT EVENTS in my life as they relate to lupus.
Now that I leave you, take a moment, do a quick google search: 'lupus nephritis' or 'lupus' or, if you're an overachiever and want to get ahead of the class, 'calciphylaxis'. Learn a little more about this life changing condition (in good ways and bad ways and all the ways).
Til next time...signing off...
Solange the little lupie
**This is a campaign (#TheLikenessofLupus) to raise awareness of the invisible illness: Systemic Lupus Erythematosus**
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| Sticker image created by artisan Jencutsvinyl. https://etsy.me/3aPMCXz |
Like I mentioned in my previous posts and on my social media platforms, I haven't really kept up with this blog. It's been years since I've tended to it since my focus has really just been staying alive. Since we last "spoke" I was complaining about some boy (probably) and my feelings and young adulthood, plus being a lupus nephritis patient who would eventually need a kidney transplant...lose it...and learn a whole lot about human biology and the human condition.
A lot has transpired since then. But before we get into all of that...let's cover the basics.
DAY ONE: WHAT IS LUPUS?
Lupus is a chronic (long-term) disease that can cause inflammation and pain in any part of your body. It’s an autoimmune disease, which means that your immune system — the body system that usually fights infections — attacks healthy tissue instead. Lupus most commonly affects your: Skin, Joints, and Internal organs (like your kidneys and heart). Because lupus affects many parts of the body, it can cause a lot of different symptoms. (lupus.org)
WHAT ARE THE TYPES OF LUPUS?
When people talk about lupus, they’re usually talking about systemic lupus. But there are other types — including cutaneous lupus, drug-induced lupus, and neonatal lupus. (lupus.org)
For the purposes of this blog, I will be talking about my experience with systemic lupus nephritis (kidney involvement).
WHAT'S YOUR STORY?
My story is a long one. I've had lupus most of my life. I don't remember a life without it. My detailed story can be found here, but here's a quick timeline:
12.07.1988 I have arrived. BORN.
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 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 list.
-------------------------------------
That brings me to today. I just got back from my third home hemodialysis training session. My husband, Zach, and I are getting trained to be able to do dialysis from home. It couldn't have come at a better time considering the state of the WORLD right now, let alone the United States (#1 in COVD-19 cases - yay?) My access has been giving me a lot of trouble. What sucks is I don't have a ton of options for accesses anymore.
My body is really worn out and options have been exhausted. I'm only 31. I'm a tough stick. I currently have a graft because every fistula attempted failed. I've had two angioplasty's on my graft and am scheduled for my third on Monday. My body can't seem to keep this sucker from clotting or just fucking up. (Oh. I forgot to mention...I'm an adult who uses adult language. This is who I am. Me. I speak this way too. [shame on me, I guess? yea, I don't care.] So leave your sensitivities at the door. This is going to get a lot more up close and personal raw nitty gritty and ugly (so much so that that whole sentence didn't need any commas)). My graft is my access so I can get dialysis treatment. It is in my left arm (non dominant). I need dialysis treatment because I have kidney disease as a result of my lupus... and there is more...
That's all we will cover for today. I think that's a whole heck of a lot that I inundated you (the reader) with. SO, to review: today we covered WHAT IS LUPUS and a timeline of SIGNIFICANT EVENTS in my life as they relate to lupus.
Now that I leave you, take a moment, do a quick google search: 'lupus nephritis' or 'lupus' or, if you're an overachiever and want to get ahead of the class, 'calciphylaxis'. Learn a little more about this life changing condition (in good ways and bad ways and all the ways).
Til next time...signing off...
Solange the little lupie
**This is a campaign (#TheLikenessofLupus) to raise awareness of the invisible illness: Systemic Lupus Erythematosus**
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