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#DisabledLifeHacks2

#DisabledLifeHacks2

It came quick, fast and in a hurry! The bottom of the pump broke through the packaging and had me worried it may have been damaged. Further inspection revealed that it was not damaged. The hydraulic pump for my lift arrived TODAY- three days ahead of schedule! Woot...

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#DisabledLifeHacks

#DisabledLifeHacks

UPDATE 2: $190.76 - one week hoyer lift rental. $575.94 total - that’s how you spend $600 in less than an hour: be disabled and have an emergency. Follow me for more #DisabledLifeHacks ——————————————- UPDATE 1: $385.18 so far. That was the cost of the new hydraulic...

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Screaming Heart

Screaming Heart

My heart has been screaming at me for the past few weeks that we’re supposed to be winding things down here and packing. It’s convinced that it will be time to move soon and that I should be getting rid of things - not buying more. That I should be downsizing and not...

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Life Supports Where Life is Supported

Life Supports Where Life is Supported

Life supports where life is supported. - Unknown I’ve been doing a lot of reading lately and I don’t remember where I got this from. But it’s stuck with me. I’ve been trying to sit with it but really It’s been sitting with me. I’m trying to understand what that means...

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Grown Drinks in a Kiddie Cup

Grown Drinks in a Kiddie Cup

My first post COVID vaccine outing. Grown drinks in a kiddie cup (cause plastic cups are easier to handle). I belly laughed at the irony. Bestie and I sat outside and for a couple of hours, life felt normal. Revelations: Drinks are expensive and I’m a super...

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Momma

Momma

Yesterday was Haitian Mother’s Day. June 2nd is my Mom’s birthday. She would have been 74. Maybe now I would have begun to worry about her no longer being with me in the coming years. I am squarely in my feelings. So much so I asked my aide for a hug as I balled...

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This Body

This Body

It was told to me that there were things I couldn’t do that were important. Being told that… hearing that? Crushes a part of you that can never really be brought back or fixed. I think about those words and sentiments a lot. Some days those words collapse me. Utterly....

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Sun Baby

Sun Baby

Haven’t worn a dress in 11 years It’s so comfy Legs sooooooooo pale tho I’m gonna be a bit of a Sun Baby this year #truestoriesof2021 #SMABody

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Spinraza Gift

Spinraza Gift

I’ve been feeling really self-conscious about my body and it not being able to ‘do’ things like able bodied folx. Like really self-conscious. I’m not immune from this, even though I’ve been disabled all my life and have done more in my short little Brown Woman’s life...

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Disabled Chronicles, No. 2i

Disabled Chronicles, No. 2i

29 The amount of seconds my labs say it takes for my blood to clot and for any potential punctures, say to my spinal column, to patch themselves shut and stop leaking. 30 The amount of minutes it takes for Spinraza to thaw/ come to room temperature before it can be...

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Powerhouses

Powerhouses

I drink four bottles of water a night - 67.6 oz. every. night. Just during the night. During the day I manage another 1-3 bottles, depending on what the day brings. I committed to this months ago, after one of my previous Spinraza labs came back with quite terrible...

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