Lazara
© 2019 Sandra Jean-Pierre This body in silent dissension over being roused from its long assumed Final march whines aches cries from joy and pain uncertainty realizing there may be life yet left for the living... we Both hold on, scared and leaning in for the ride...
Disabled Chronicles, No.2b1
Looked down at my naked thigh this morning while I tried to extend my right leg. The muscle on top rose in a massive sheet. It reminded me of the definition bodybuilders get. I was shocked? Before Spinraza, my muscles didn’t do that. Not even a little bit. The...
Disabled Chronicles, No.2b:
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...
Disabled Chronicles, No.2
I was hoping this update would have been as easy and neat as one of my many #DisabledChronicles posts: a dramatic retelling of my true life events leading to an ultimate revelation. Succinct. Deep. Raw. Instead, in the days since my procedure, I’ve found myself near...
Fight ME!
I was one of those kids who was sure that No ONE was the boss of me; not even my Momma. I remember the very first time I was ever angry with her, being five or six years old and how I glowered at her as she tied my dark brown orthopedic shoes and tried to push me to...
Celiac Chronicles, No.7465
That one time you ask your aide to make you multiple servings of the new Cream Of Rice cereal you found and that was purchased along side Bethany’s Cream Of Wheat... And though they were bagged together but in separate containers, your aide managed to grab the wrong...
Disabled Chronicles, No.8
The amount of advocating I've had to do for myself (and with some help) this past week has been astronomical. This has been on top of the normal fuckery people bring on the daily. It's also made me weary. The landscape of my main condition has been shifting... for...
Disabled Chronicles, No.7
The Set Up I've been putting off getting a new electric power wheelchair for well over a year. Okay, so it's closer to 2/3-ish years. I know, you're thinking, 'But isn't your chair like, important?' Extremely. My wheelchair operates like my legs. If I need to get...
Silent Detonation
Her hands were warm and firm as they held onto mine the first time we were meeting. She knew to reach into my space to complete the connection. Knew from the hours of calls logged, from the technical and medical explanations, knew from my recountings and stories of...
Carry Her With Me
I was cleaning out my purse and forgot that I carry Her with me. Her last rosary and two coins from our trip to France when I was a teenager. It surprised me to find these, even though I was the one who put them where they were. Opening the thinning Asian-style...
#CeliacWhileBlack
New-to-Me doctors are an interesting bunch: They either discount everything I say and treat me like any other typical patient (never a good idea) or they are so determined to peg me into some kind of category that they miss things. That is never good either. So it was...
Hard Stick
Those who’ve been following me for any extended length of time know that my body does not like giving up my veins for sacrifice (this is called: being a hard stick). Not for routine blood work or to save my life. You’d also know my ordeal with Quest labs, where they...