Rare Disease Girl
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How to be productive when you just feel like lying down?
The Ever-present Challenges of Adulting While Sick
Mar 9
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How to be productive when you just feel like lying down?
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2
I Don’t Know What My Disease’s Name is Anymore
Patients were ghosted in the rename process and I’m mad.
Mar 3
1
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Rare Disease Girl
I Don’t Know What My Disease’s Name is Anymore
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2
February 2025
Calling all Zebras!
What it means to live life RARE on Rare Disease Day!
Feb 28
5
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Rare Disease Girl
Calling all Zebras!
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6
We are not supposed to love our bodies forever
Is aging a gift, preparing us for our mortality?
Feb 21
2
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Rare Disease Girl
We are not supposed to love our bodies forever
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8
Happy Anniversary - a love letter to you
Rare Disease Girl Turns 2!
Feb 14
3
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Happy Anniversary - a love letter to you
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4
Do You Have Problem-Solving Fatigue?
Ways to relieve the burnout and overwhelm.
Feb 9
2
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Rare Disease Girl
Do You Have Problem-Solving Fatigue?
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6
How is my disease related to a King Cobra?
Happy Year of the Snake!
Feb 2
2
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Rare Disease Girl
How is my disease related to a King Cobra?
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1
January 2025
Happy birthday to my dream-come-true
My disease and her milestones will always be linked - but it makes today more special, not less.
Jan 28
4
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Happy birthday to my dream-come-true
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10
LA Fire Family Update
Thank you emergency services!!
Jan 12
4
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Rare Disease Girl
LA Fire Family Update
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3
Happy New Year - But Don't Let the Romans Boss You Around
Wishing you a healthy, restful, rejuvenating new year
Jan 2
1
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Rare Disease Girl
Happy New Year - But Don't Let the Romans Boss You Around
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December 2024
Another year of survival - birthday reflections
Did I reach my survival list goals from this wild year around the sun?
Dec 22, 2024
2
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Rare Disease Girl
Another year of survival - birthday reflections
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4
Food and Freedom - the hospital journey continues
Going to the hospital farmer's market after not eating for three days.
Dec 8, 2024
2
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Food and Freedom - the hospital journey continues
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4
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