Tonight I will tell y'all about GreatGrandmomInBed, all one word.
Pinning to remind me.
When my grandparents married my great-grandmother and my grandpop's younger brothers moved in with my grandparents.
Eventually the boys left, but my Great-Grandmom stayed.
My mom eventually got married and bought the house next to my grandparents.
By this time my Great-grandmother was almost completely disabled.
#ChronicPain
#Disability
#RA
#RheumatoidArthritis
My mom's cousins had kids.
Those are my cousins.
They are older than me, though.
On weekends my cousins' parents would tell them to get dressed to go see GreatGrandmomInBed.
My cousins heard it as one word.
This is why I am 51 and it's still GreatGrandmomInBed when we discuss my grandpop's mom.
#ChronicPain
#Disibility
#RA
#RheumatoidArthritis
I got to dress up and visit GreatGrandmomInBed exactly once.
I was a week old.
I was carried up to her and she held me.
A week later she passed away.
She was 90! In 1971 with an autoimmune disorder that was huge.
I am so far the only descendent that has RA.
#ChronicPain
#Disibility
#RA
#RheumatoidArthritis
Tuesday night when I had my first really bad RA fever I tried to figure out what else it could be.
Not Mono for the 3rd time. Not fatigued enough.
Covid negative.
No other symptoms except fever, severe joint pain throughout my entire body, and shaking chills.
Oh.
Oh.
I see.
#ChronicPain
#Disibility
#RA
#RheumatoidArthritis
And I cried.
A lot.
A lot a lot.
I will never be a Great-Grandmom.
But I don't want to be MomInBed.
And my younger son said, "Mommy get up tomorrow?"
And I cried more.
And then I realized that it's not 1971.
And shit is better. In this case.
And I get far more out of my life than my Great-grandmother did.
She was also in a house upstairs with a commode.
Only room.
#ChronicPain
#Disibility
#RA
#RheumatoidArthritis
Also in the middle of the night I Googled removal of RA nodules and I don't know why I expected it to not involve actual surgery, but I can wait, because they can grow back.
Also I feel like GreatGrandmomInBed held me and said, "You're the only one stubborn enough."
Yes I know how science works.
Let me imagine.
I hold my own hands and massage them and appreciate them and give them my energy so many times a day you'd be amazed.
My hands.
They're everything I do. Except they're not.
I need to do the same thing for every other joint in my body.
@Shelter Sometimes those conversations take a long time.
@Curiousfoolish
You know what?
They do.
@Shelter Worth the wait.
@Curiousfoolish
I have a fictional story percolating about her and the cousins but I need to focus to get it done.
@Shelter 🤝 💜 you are a very strong person. She definitely knew.
@Coffee_and_Salt
I guess I am.
I'm broken, but I'm still good.
Thanks.
As shitty as the US is to disabled people it is NOT 1971.
And I will allow myself to stay in bed when necessary with maybe only a fleeting thought of not getting out again until I truly can't.
90 years old and not InBed is my goal.
I might not.
But I just might.
#ChronicPain
#Disibility
#RA
#RheumatoidArthritis