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Lupus Blog: Benlysta Blues

Once a month, I get up when the sun comes up, put on some leggings and a hoodie, and head to SUNY Downstate for my monthly infusion of Benlysta. This process literally takes my entire day, from 8:30-3pm. Come follow me, follow me, follow me down the path to getting the only medication created to treat Lupus.

The only reason I can get out of bed is the promise of sleep during the long process at the hospital. On days I have been allowed to flex my hours and get to go to work late, it's a nice rest. So, I throw something comfy and quick on and take the train there (parking sucks in the area).

I arrive at SUNY Downstate Medical Center and get on the line for outpatient registration. Low and behold, the woman who totally ignores my good mornings and checks me in is absent, leaving the older, less speedy man to register everyone by himself. The struggle is real. This process has taken anywhere from 10-45 minutes, just to have them put the bill in the system and print me a paper. I say thank you and head to the 6th floor.

I get to walk through the Cancer ward of the hospital to the chemotherapy unit. "Wait, I thought you had Lupus?" Yep, I do but the same guy that mixes the IV infusions of chemo and dialysis treatments mixes the Benlysta for my IV treatment. It's a big room where everyone sits in a wide circle with their own sea-green leather recliner and loud ass personal TV so they can watch Maury or Divorce Court during their stay. Personally, it's not fun being surrounded by cancer patients since my mom passed away from cancer a few years ago and chemo did nothing for her. But a gal's gotta do what a gal's gotta do. I get my vitals taken and blood drawn to make sure I'm healthy enough to get a treatment that suppresses my overactive immune system. Ohh and they serve free breakfast. Yay. (I wish there was an emoji that indicated my extreme sarcasm). I'm greedy so I eat it anyways.

Yes, two hours later, the results from my tests come back. My Rheumatologist has to check the labs and evaluate them. If the results suck (meaning if there's a risk of infection from a low White blood cell count or something like that), then I get my meds raised, sent home, and told to come back in a week. If all is decent, the order is made for the guy in the basement to get his double-double-toil-and-trouble on and mix a bag of Benlysta. The nurse starts me on a drop of fluids for a bit until it's ready.

I have no clue what the Macbeth witch is doing but it takes him forever to mix & bring up the Benlysta. So in the meantime, I get my IV of Benadryl which prevents me from having any sort of allergic reaction...and knocks me out like Fight Night. Here is where I catch up on any missing hours of sleep and not even the man screaming his excitement for not being some child's father on my neighbor's loud personal TV can wake me. I do wake for lunch which I usually request to be the Tuna sandwich and salad, and give away the soda it comes with. (I never understood hospitals that serve soda and fatty food to its patients. I guess that's how they stay in business.)

Finally, the bag of Benlysta makes its way to the IV line on the top of my hand. Still groggy from the Benadryl, I head back to sleep between answering work emails and the occasional phone call. This is the best part of the process: finally getting it and sleeping.

Almost 2pm-

Beep! Beep! The IV machine signals that I'm done. I get some more fluids to flush my veins, and the nurse removes my IV. Since I'm on blood thinners, it takes a sec to get the blood to stop flowing. Once it's safe, the lil bandaid goes on it, completing my time in the Chemo Ward. I get asked to schedule the next one exactly 4 weeks away by day, not by date. It can be difficult making this decision without consulting my job but I've been getting better at it.

Overall, I'm still on prednisone so I don't know how effective Benlysta is. My doctor swears it's doing something. I don't know... But it's a part of my world, Take care if it ends up being in yours.


"Perfection" A Poem

This world isn't perfect.
And neither are you.
Yet, I feel
My life's quest was to find you
My life's purpose can be found in you
My life has more meaning with you.
You're a part of the Legend of me,
The part that's always beautiful.
You are affection
That the wind can carry.
A temple
Where I find sanctuary,
A warm summer day
Amidst the chill of February.
A missionary to my lost soul
Your wisdom I try to hold
While all others to cling to brass
I can recognize pure gold.
So I come before you boldly,
The way God told me to always be
And I offer you,
Unscathed by the previous prejudices
Prevalent in my past.
I'm past all of that
Cause you found a way to my heart Without the use of a map.
Calculated my thoughts
Read the signs of past scribes
Following the stars in my eyes,
Using my smile as your guide.
And during your journey
There were so many nights I cried
Yet now I realize
My wet tears watered the lips
That would one day
Hydrate your thirsty spirit
With each kiss of mine.
I missed you before we'd even met.
You are simply divine
Your name sounds love,
Your name tastes like joy
Your name resounds like praise.
Your name got me saved.
By beholding you, I truly see
That God's spirit dwells with man.
And even though you really don't
How 5 minutes in your presence
Can last a lifetime,
Where the meeting ground
For two like-minded spirits could be found,
Or why it's taking so long for me to say this,
But know that if this world were perfect
We'd fit together
Lock and key,
Rainbow and sky,
Seashell and sea,
I'd be a complement your strength
Like a pearl in your core,
Surrender myself and so much more.
So with hands clasped and eyes closed,
Only the Lord knows
What the future has in store,
While this world searches for perfection,
I see His perfection reflected in you.
And honestly,
That's perfect enough for me


Pimpin Disease

"Yo I'm about to make mad money off my disease."/ Said no one ever/ well except maybe you/ You think having lupus is something to do/ think you're doing me a favor hitting me up on IG./ Telling me you'll do lupus events with me...just for a nominal fee/ sweety/ I have the disease/ my body doesn't need your help/ And you tryin to cake off your health/ realize the only people getting money from these foundations are the foundations themselves/ I think about the reach of the project before I worry about pay./ Maybe because I'm more focused on the lives I'm trying to save/ you're trying to pimp your problem/ and maybe you have nothing better to do/ maybe lupus has limited the work you can do/ but talking money before collaboration sounds funny in my mind/ I talk about Lupus all the time while you seem to be chasing dollar signs/ I know you're just trying to live/ but I ain't about that life/ and you ain't Toni Braxton or Nick cannon/ the only Lupies it'd make sense to put a promotional dollar behind/ appreciate the effort but it's wasted breath/ no way to convince/ step your advocacy resume up/ cause paying you for Lupus/ won't and doesn't make any sense


Upcoming Show: THE SOUNDS OF PASSION (Roanoke, VA) 7/25 @ 7pm

Next event: THE SOUNDS OF PASSION (one night, 3 part event)
July 25th from 7pm - 12am
Downtown Roanoke, VA
Patrick Henry Hotel Ballroom

Part l
The Laugh At Lupus Comedy Show

Part ll 
The Sounds Of Passion 
(With a performance by ME and Sunshine Anderson)

Part lll
Light Up The Night ( finish the fight)
An evening event with a DJ, spinning the best tunes to get you moving

Tickets are only 40.00! 
Email for tickets


Good Times at the Annual Lupus Summit in DC (with the Lupus Foundation of America)

Much thanks to the awesome folk at the Lupus Foundation of America for the invitation to be a part of the Annual Lupus Summit on June 15th & 16th. I was able to meet with State Representatives and Senators to truly advocate for things that matter to Lupus.

Some point of reference, check out the chart below... Look at the dates for medications that have been approved for Lupus... 1958 and then nothing until 2011. And nothing since then. For 1.5 million Americans (and many many more that are still searching for an official diagnosis), this isn't enough. We need more funding for Lupus and more awareness. Also, the FDA needs to reform its policies on clinical trials. Since Lupus can attack any part of the body, it's hard to expect researchers to find 5,000-6,000 people with the same exact symptoms and specific demographic and medical background which they expect to be done to test new treatments. With these rigid restrictions that were created and haven't changed since decades ago, these requirements are dated and unrealistic for such a complex and unique disease as Lupus.

Glad to have learned soooo much. Also, it was soooo dope getting a shoutout from the Director of the National Institute of Health, Dr. Francis Collins at the oh so lovely Lupus Advocacy Gala. I'm looking forward to advocating next year!