juvenile rheumatoid arthritis

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I’m Disabled, I’m a Mother, and I’m Done Being Quiet

I’ve spent a lifetime learning how to endure.
Endure the pain that locks my joints, edure the judgment that follows when I walk without a cane, then use one moments or days later.
Endure the silence that creeps in after I advocate for myself or my daughter.
Endure the way people smile at me with pity or worse with suspicion.

I’ve heard whispers and accusations since I was a child. That I was faking and that I wanted attention. I was lazy and I was too sensitive or depressed. That I needed to pull up my boot straps and push through, and of course I believed them.
I internalized the idea that my pain was too much for people to care about, that my worth was tied to how well I could perform as being "normal" and how much my "normal" body could do. So I learned to hide my pain and I learned to shrink myself in order to be accepted and fit in.

But as I grew pain has taught me how to listen deeper. Becoming a mother has taught me how to fight louder and surviving has taught me I don’t owe anyone proof of my pain.

I’m disabled and a mother to a fierce, magical little girl. She has epilepsy, kidney disease, and the most radiant heart and light I’ve ever known. She is the reason I rise when I’d rather disappear. She is the reason I advocate even when my voice shakes and she is the reason I stay soft in a world that hardens people like us.

Raising her with a body that betrays me daily is a lesson in adaptation. Every task from bathing her, making meals or getting out the door requires calculations most people never think about. Some days I can pass as functional, and some days I can barely lift my arms, but every day I am her safe place.
That’s the most important job I’ll ever have and one I cherish daily.

We live in a world that asks disabled people to justify our existence and a world where medical care is rationed. Where accessibility is treated like charity and not a right and where even family can become a battlefield of misunderstanding and cruelty. I know what it feels like to be gaslit by loved ones and I know the heartbreak of being tolerated instead of embraced.
I’ve felt invisible at family gatherings and I’ve smiled through tears so my daughter wouldn’t see how shattered I was.

But I’m not here to center the pain of being misunderstood, I’m here to name it so I can set it down.

I’ve learned that my voice is sacred and that rest is resistance. That saying “no” is necessary and protecting my peace is a priority for me. I’ve also learned that boundaries don’t make me mean, they set me free and demand the way I deserve to be treated.

If you’ve ever been made to feel like a burden, you're not, if you’ve ever mourned the loss of people who chose judgment over love, let them go. And if you’re building a life inside limitations please know that beauty grows there too.

I write to remember who I am and who I desire to become.
I write so my daughter can see her own worth and so she does not shrink herself, but blooms over and over again.
I write so others don’t have to feel as alone as I did.

Disability does shape how I move through the world, with tenderness, awareness and empathy.

If my story resonates with you, please know that you are worthy, you are not a fraud and you don’t have become small to be loved.
You don’t owe anyone your pain, but you can turn it into something powerful, whatever that means for you.

All my love, Mighty warriors 🤍

#Disability #JuvenileRheumatoidArthritis #ChronicFatigue #Lupus #MentalHealth

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Gentle reminder that whatever you say to yourself in your mind comes out and affects you even if you don't mean it to

I definitely need to work on how often I vent frustration with the body I have been given. Every so often I have to stop and readjust my thoughts for the better, thanking my body for all it does to try to do what I want.
It does the best it can and I need to appreciate what it can offer.

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #AmplifiedMusculoskeletalPainSyndrome #bedbound #BoneSplints #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #gallstones #HypothyroidismUnderactiveThyroidDisease #Eczema #Grief #Hypersomnia #HighBloodPressure #JuvenileRheumatoidArthritis #Insomnia #Lymphedema #PosturalOrthostaticTachycardiaSyndrome #PTSD #Psoriasis #PsoriaticArthritis #Psychosis #PanicAttack #PanicAttacks #plantarfasciitis #MentalHealth #MightyTogether #MajorDepressiveDisorder #MemoryLoss #Migraine #musclespasms #MultipleAutoimmuneSyndrome #RareDisease #RheumatoidArthritis #SuicidalThoughts #Scoliosis #ShinSplints

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Hello Christmas!!

So many new things happening as of late.

Humera helped not a bit. The first month and a half felt great and it reminded me the good of being human. Five months later and my rheumatologist put me on a new medicine called Enbrel(amongst my 55 other meds I take for my many conditions).

I took my first dose on Sunday but I feel as bad as if I wasn't taking any meds whatsoever.

Years ago my EDS meant I had to learn to walk more carefully so I didn't dislocate my joints hundreds of times a day and using my tendons wrong, bruising them left and right. Now I have to relearn and the pain is simply horrific.

And my whole digestive system is a mess of course. Swallowing ten times just to get one bite down really takes any good out of food. Constant nausea and vomiting doesn't improve anything whatsoever.

And a hundred more symptoms of misery makes my huge mountain of existing even heavier.

Yeah I am blessed in many things but health or ease of existing are most definitely not on any of the lists.
Only a very cursed body that does work hard to try to do its best in aiding me, poor thing. Thankful for the small bit of good it tries to do while also wishing I could trade bodies with a healthy person for at least one day.

If only!😕🫤😔

Alas, I wait still for my new meds to start working with fingers crossed and tears streaming down.
Thank heaven that I at least have a few doctors that are trying!
Such a long 29 years of devastating suspense!!!

May the holidays bring the light and hope you deserve this season. And if not, may these Christmas lights on my family's tree lift your soul for even a small bit of time ✨️✨️✨️

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #AnkylosingSpondylitis #bedbound #BoneSplints #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #CheerMeOn #Upallnight #IfYouFeelHopeless #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Eczema #Fibromyalgia #GastroesophagealRefluxDisease #Grief #gallstones #HypothyroidismUnderactiveThyroidDisease #Hypersomnia #HighBloodPressure #Headache #JuvenileRheumatoidArthritis #Insomnia #Lymphedema #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PsoriaticArthritis #Psychosis #plantarfasciitis #PanicAttack #PanicAttacks #PTSD #MentalHealth #MightyTogether #MightyPets #Migraine #MemoryLoss #musclespasms #MultipleAutoimmuneSyndrome #RareDisease #RheumatoidArthritis #SuicidalThoughts #Scoliosis #sciatica #ShinSplints #Sleepwalking #MajorDepressiveDisorder #nightterrors

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Miss Rosie with her boyfriend named Bruno. He is a Great Dane!!

They LOVE to play so our day revolves a Lot on hearing his bark from our bedroom and then Rosie races off the bed and spins and spins and spins in happiness while barking with her playful yips.

It is so much fun (Nixing the part where my joints all painfully pop out as I try to hurry and let her out) then she races up to the fence to bark and spin a lot more.

She was scared of his big self at first but me going up to him and giving him scrapes helped build up her courage ❤️

Can you tell she is my LIFE? 😁❤️✨️💖

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #AnkylosingSpondylitis #bedbound #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #Grief #gallstones #HypothyroidismUnderactiveThyroidDisease #Hypersomnia #HighBloodPressure #JuvenileRheumatoidArthritis #Insomnia #Lymphedema #PosturalOrthostaticTachycardiaSyndrome #PTSD #Psoriasis #PsoriaticArthritis #Psychosis #PanicAttack #PanicAttacks #plantarfasciitis #MentalHealth #MightyPets #musclespasms #MultipleAutoimmuneSyndrome #Upallnight #CheerMeOn #SuicidalThoughts #Sleepwalking #sciatica #Scoliosis #ShinSplints #BoneSplints

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Lil Miss Rosie had a dental cleaning vet appointment. Her owners who bred her in a tiny cage didn't help teeth cleaning for her first 4yrs.

7 teeth had to be removed and her two removed back molars were barely hanging on. For the past year I am so glad I begged my parents for this dental appointment. Already we can tell she chews normally without bouncing food around her mouth in obvious pain.

Of course animals require anesthesia so the pets don't face stress and the vets can work more easily. 6hours was so long as I worried for her.

Expensive but SO worth it! Her breath smells so so much better! Warm fuzzies all around! Though I do miss her tiny tooth that use to stick out like a super cute gremlin! Lol

Bless this dear pup friend 'o mine!!! ❤️ ❤️

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #AnkylosingSpondylitis #Anxiety #bedbound #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Eczema #Fibromyalgia #GastroesophagealRefluxDisease #Grief #gallstones #HypothyroidismUnderactiveThyroidDisease #Hypersomnia #HighBloodPressure #JuvenileRheumatoidArthritis #Insomnia #Lymphedema #PosturalOrthostaticTachycardiaSyndrome #plantarfasciitis #PanicAttack #PanicAttacks #Psoriasis #PsoriaticArthritis #Psychosis #PTSD #RareDisease #RheumatoidArthritis #Upallnight #SuicidalThoughts #Scoliosis #sciatica #MentalHealth #musclespasms #MultipleAutoimmuneSyndrome #MightyPets #MightyTogether #Migraine

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