Read on Twitter
I always struggle with how much I should share about life with Lupus. However, I’m reminded of the way the Spirit moves through story sharing & testimony. So, here goes... 
Having an autoimmune disease means that my body is constantly attacking itself. Lupus causes my body to produce antibodies that target its own tissues.
I’ve been taking various medications to combat this since 2016. Most were designed to treat other diseases and/or manage side effects. Today I started Benlysta, the first FDA approved medication specifically designed for Lupus.
Rather than suppressing my entire immune system, Benlysta targets specific cells and reduces the production of the harmful antibodies.
I will have to go in monthly for IV infusions. I’m hopeful that soon, I’ll be able to decrease the number of medications I’m taking!
I will have to go in monthly for IV infusions. I’m hopeful that soon, I’ll be able to decrease the number of medications I’m taking!
Life with Lupus is a journey. Some days I feel great; other days are...tougher.
But each day I’m grateful for my support system (family, friends, colleagues, healthcare providers) + the ability to advocate for myself. #OnWeFight
But each day I’m grateful for my support system (family, friends, colleagues, healthcare providers) + the ability to advocate for myself. #OnWeFight
Second Benlysta infusion DONE!
Next one in two weeks. For now, I nap.
Next one in two weeks. For now, I nap.
Third Benlysta infusion DONE!
This was the last of the bi-weekly infusions. I’m on a monthly schedule now. Next infusion scheduled after Easter.
This was the last of the bi-weekly infusions. I’m on a monthly schedule now. Next infusion scheduled after Easter.
Lil update. Thank y’all for sending love as I walk this journey! https://twitter.com/super_von/status/1116776865891401728?s=21
https://twitter.com/super_von/status/1116776865891401728?s=21
“Alexa, play Drip by Cardi & the Migos”
IV Drippin’
Drip, Drip
IV Drippin’
Drip, Drip
April infusion done.
Next time I come to infuse,
I’ll be 27
(Birthday in 26 days!)
May is also Lupus Awareness Month
Next time I come to infuse,
I’ll be 27
(Birthday in 26 days!)
May is also Lupus Awareness Month
Maybe I’ll get a purple Apple Watch band or something. I’m not prepared to do purple every day! 
The view is kinda nice. It’s a beautiful day today!
The other room I infuse in doesn’t have windows 
But you know what they always have? SNACKS! I took two today.
But you know what they always have? SNACKS! I took two today.
#ootd Xavier Alumni sweatshirt x Super Von socks
I don’t think I’ve talked much about the side effects.
After an infusion, I be laid out. I’ve heard some refer to it as a”Benlysta hangover”.
You know that level of drained you hit after being in the sun all day - like at the beach or a water park? Just WOE OWT. Dassit.
After an infusion, I be laid out. I’ve heard some refer to it as a”Benlysta hangover”.
You know that level of drained you hit after being in the sun all day - like at the beach or a water park? Just WOE OWT. Dassit.
June Infusion 
July infusion
I didn’t sleep well + ended up oversleeping + was in a bad mood.
So while I was hooked up I decided watch clips of @KekePalmer’s talk show gig.
The nurse was like “I gotta ask: What were you watching?!”
I laughed (out loud, apparently) the entire hour.
I didn’t sleep well + ended up oversleeping + was in a bad mood.
So while I was hooked up I decided watch clips of @KekePalmer’s talk show gig.
The nurse was like “I gotta ask: What were you watching?!”
I laughed (out loud, apparently) the entire hour.
I did infuse in August but I was very much preoccupied by Nancy Parker’s memorial service.
Here I am... in all my sleepiness & awkwardness... September infusion in progress
I just realized, I never talked about my October infusion....
Okay, so... BOOM.
On Oct 9th my Mama had surgery. I was previously scheduled to teach at a conference in N.O. that following weekend, so I just extended my trip so I could be with my Mama.
Okay, so... BOOM.
On Oct 9th my Mama had surgery. I was previously scheduled to teach at a conference in N.O. that following weekend, so I just extended my trip so I could be with my Mama.
Everything went as planned. And I flew back to Denver on Oct 19.
That night I developed a really bad headache, so I took some meds and went to bed.
The next day, I woke up feeling like I had a sinus infection and things literally went down hill from there.
That night I developed a really bad headache, so I took some meds and went to bed.
The next day, I woke up feeling like I had a sinus infection and things literally went down hill from there.
I think a combination of stress, fatigue, changing climates, and trying to push through caused me to experience one of the worst flare ups I’ve had in a long time. It was awful.
Thankfully, I didn’t have a fever so I was able to get my infusion and just rest the following day.
Thankfully, I didn’t have a fever so I was able to get my infusion and just rest the following day.
That was Monday. Wednesday I had a doctors appointment. Friday I had therapy. And Saturday the temperature dropped. I ranted about that already: https://twitter.com/super_von/status/1188299315346690049?s=21
October has not been great. But I’m here. And I’m grateful for grace and rest.
Why’d I schedule an infusion in the middle of finals week?
Well, friends. It is finished.
November infusion
This is me, hot mess express & freezing cold.
November infusion
This is me, hot mess express & freezing cold.
Last night my anxiety about oversleeping for my infusion appointment caused me to wake up every hour.
And guess what I still did...
OVER. SLEPT.
And guess what I still did...
OVER. SLEPT.
Last infusion of the year
I was frustrated cuz I overslept and I, generally, have not been in a good mood the latter half of this week.
BUT... the weather is beautiful today
And Chaka Khan has been the soundtrack to the morning! So, we good.
I was frustrated cuz I overslept and I, generally, have not been in a good mood the latter half of this week.
BUT... the weather is beautiful today
And Chaka Khan has been the soundtrack to the morning! So, we good.
I try not to schedule anything after my infusion so I can rest.
But today was the only day I could get a therapist appointment in before I head home.
Prioritizing my wellness this year has proven to be fruitful. And I’m discerning ways to take it to the next level in 2020.
But today was the only day I could get a therapist appointment in before I head home.
Prioritizing my wellness this year has proven to be fruitful. And I’m discerning ways to take it to the next level in 2020.
Insurance Saga 2020
https://twitter.com/super_von/status/1218231390883454978?s=21 https://twitter.com/super_von/status/1218231390883454978
https://twitter.com/super_von/status/1218231390883454978?s=21 https://twitter.com/super_von/status/1218231390883454978
First infusion of 2020 is done.
Did not sleep well, so (for the first time ever) I slept the whole way through the treatment. I was KNOCKED.
Went well overall. I stopped to get some pancakes. And now I’m headed home to get actual sleep.
Did not sleep well, so (for the first time ever) I slept the whole way through the treatment. I was KNOCKED.
Went well overall. I stopped to get some pancakes. And now I’m headed home to get actual sleep.
One year infusion-versary!
I have been infused.
March 2020
March 2020
My rheumatologist is the specialist I see for my lupus. I saw a sign today at the office that said something about “Rheum Service”
And I think that’s the cutest thing. I think that’s how I’m gonna tag my infusions from now on: #RheumService
And I think that’s the cutest thing. I think that’s how I’m gonna tag my infusions from now on: #RheumService
A lot has changed in the past month. Nevertheless, I’m here once more & again for an infusion.
I also had bloodwork done (WBC count was a bit low last time) + a check in with the doc. He’s one of the best doctors I’ve ever had! So good.
#InfusionDay #RheumService #Purpletuity
I also had bloodwork done (WBC count was a bit low last time) + a check in with the doc. He’s one of the best doctors I’ve ever had! So good.
#InfusionDay #RheumService #Purpletuity
My doc and the nurse facilitating my infusion today both led by asking about my family in Louisiana 
They rearranged the waiting room and infusion rooms to increase the space between patients. They have been incessantly cleaning the equipment. And everybody has on a mask.
April infusion
There’s a spot I usually visit after my infusion to get pancakes. But, well, you know... So, I’m gonna make some at home & take it easy the rest of the day.
There’s a spot I usually visit after my infusion to get pancakes. But, well, you know... So, I’m gonna make some at home & take it easy the rest of the day.
BTW - Follow The @Purpletuity Project, my new lupus advocacy + awareness endeavor.
I have something special launching this week!
I have something special launching this week!
Hi! Hello!
It’s May. It’s happening. I’m sleepy.
It’s May. It’s happening. I’m sleepy.
That special thing from @purpletuity last month was a blog!
First post was about my personal journey. Here’s a link: https://purpletuity.org/blog/f/blog-post-1-my-journey
And since May is #LupusAwarenessMonth, I’ve been posting a lot.
Here’s the latest about lupus + race + gender: https://purpletuity.org/blog/f/lupus-race-gender
First post was about my personal journey. Here’s a link: https://purpletuity.org/blog/f/blog-post-1-my-journey
And since May is #LupusAwarenessMonth, I’ve been posting a lot.
Here’s the latest about lupus + race + gender: https://purpletuity.org/blog/f/lupus-race-gender
It’s June. Today’s infusion is being brought to you by Chloe x Halle. I’m ‘bout halfway through.
It’s warm. And there’s a slight breeze. And I’m done.
I went from being in denial... to not knowing how to talk about it... to owning my narrative... and now I’m looking to hold space for others, wherever they are on this journey.
If you are someone you know my be interested, see below for details.
https://twitter.com/purpletuity/status/1271245134818996224?s=21 https://twitter.com/purpletuity/status/1271245134818996224
If you are someone you know my be interested, see below for details.
https://twitter.com/purpletuity/status/1271245134818996224?s=21 https://twitter.com/purpletuity/status/1271245134818996224
And follow @purpletuity on all platforms!
And I am scheduled (infusions, bloodwork, and appointments) through October.
It is loud in here on today. There’s a new nurse training. 
Also, I usually like infusing on Fridays but there was a scheduling hiccup, so I’m here on a Tuesday.
Nevertheless, it’s happening...
Please enjoy this photograph of the flowers from the waiting room.
Also, I usually like infusing on Fridays but there was a scheduling hiccup, so I’m here on a Tuesday.
Nevertheless, it’s happening...
Please enjoy this photograph of the flowers from the waiting room.
In @JasmyneBracy’s words: These days are flying by!
I feel like I was just here. But that was a whole month ago.
I feel like I was just here. But that was a whole month ago.
Since I’ll be deleting this account at the end of the month, I’ll be shifting all things lupus related to @purpletuity
I plan to continue this thread as an “ongoing” blogpost at http://purpletuity.org/blog
Also, free to follow my new personal account, @vonmagination
I plan to continue this thread as an “ongoing” blogpost at http://purpletuity.org/blog
Also, free to follow my new personal account, @vonmagination
