UPDATE: Spinraza Injection No.2:


Trying to save my life looks like mountains of lab work and urine samples to make sure my kidneys are okay.
It looks like two cancellations and a ‘maybe today will be the day…? (I doubt it)’ attitude because you’re tired of the running around, doctor visits, labs and more labs but realize, what is the alternative?
Saving my life looks like not wanting to take any pictures of my comfy cow slippers this time because it was all I could do to show up today.
It’s peeing in a bed pan in front of nurses who have been praying for your kidneys to be okay so you can receive this life saving medication without further delay.


Saving this life looks Nurse Simona undressing you from your street clothes and helping you don a gown… like Bestie wearing the chain your Momma gave you at 16 while you await the results of this pee test.
It’s hearing your intake nurse Nuri, saying she thinks your results came back good because your other Nurse Jo, has a big smile on her face.
Life saving is the doctor coming to check on you before the treatment begins and his eyes are soft and warm and championing this for you in this silent way he seems to be doing.
It is Nurse Tiffany reading off your info before the start of the procedure like she’s heading up a call to prayer.


It is six nurses, silently praying their Gods and Ancestors to guide the treatment and the doctors hands as he snakes a needle between the small space a ways behind your right ear to access your cerebral spinal fluid.
Life saving is feeling the pain and pressure of this intrusion and not crying this time as the requisite amount of CSF is drained from your brain meats in order to make room for the medication.

It’s hearing nurse Yvette speak, as she tells you ‘you’re doing a good job’ but only following her instructions to breath in deep because your nerves are just about shot from all the stress surrounding this injection.
Saving this life feels like the final gurgle as the medication is inserted, knowing that most of the danger in this moment is over.
It is a band-aid covering the entry point, masking how big of a deal this ‘minor’ procedure was.

It is the staff of five placing you back in your chair, dressing you, re-introducing themselves and you sharing part of you in return (Bethany​).
Saving my life looks like Bestie, being at the helm, a watchful eye keeping vigil. It is Bethany sending me messages of her love, it is Nurse Denise giving me hugs and kisses and being proud of me without even knowing me.

It is all the time and hours CNA Lora has spent helping me pee in the middle of the day and the times Little Bro has to help me pee sometimes in the middle of the night. It’s my GPs office giving me the sample pee cups and Melanie having to find my maddeningly rolly veins for bloodwork.
Saving this life, takes a village – and I thank you all ?
Injection No.2 of four down in the books.

Take care of each other Fam ✊?

#TrueStoriesOf2019 #DisabledChronicles #SpinrazaShit #SMAShit #SpinrazaStrong