Epilepsy

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Looking forward to going away on holiday on Friday!

I’m going to Devon with the church just for three days on Friday (my support worker will be coming with me just in case I have a seizure- I have live in care you see). It’s been a very difficult few years with brain damage and brain surgery and a skin graft and loosing loved ones so going away is just what the doctor ordered! So I bought a few new dresses! Looking forward to wearing them too! So should be a good time!
#Anxiety
#Depression
#Hallucinations
#Epilepsy

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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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Harnessing Red Light Therapy for Pain Relief: What Actually Helps

Living with chronic pain is like having a shadow that never leaves — some days it looms larger than others. Over the years, I’ve tried everything from physical therapy and medications to heat pads and meditation. But one tool that caught me by surprise? Red light therapy. I was skeptical at first, but here’s what I’ve learned — and how you can make it work for you.

🔴 What Is Red Light Therapy?

Red light therapy (RLT), sometimes called low-level laser therapy (LLLT), uses wavelengths of red and near-infrared light to stimulate healing, reduce inflammation, and improve circulation. It doesn’t burn or hurt — in fact, it feels like a gentle warmth. The magic happens beneath the skin, where the light penetrates into cells and boosts mitochondrial function (think: better cellular energy).

💡 How I Use It for Pain Relief

Consistency is key: I use it for about 15–20 minutes per session, 3–5 times a week. It’s not a quick fix, but over time I noticed my pain levels drop — especially in my lower back and knees.

Clean, dry skin: I make sure the area is clean with no lotions, and I place the device directly on my skin or very close to it.

Right device matters: I started with a small handheld unit and later upgraded to a larger pad that wraps around joints or back muscles — super convenient and hands-free.

Time it right: I often use it after a hot shower or stretching session to help relax muscles even more.

✨ Real-Life Results

For me, red light therapy has become part of my self-care toolbox — not a miracle cure, but a solid support. On flare days, it helps me soften the edge of the pain. On better days, it helps me stay mobile and reduce stiffness.

⚠️ A Few Notes

It’s not for everyone — but it's non-invasive and low-risk.

Always check with your doctor if you’re managing conditions like cancer, epilepsy, or are pregnant.

Look for FDA-cleared devices and avoid cheap knockoffs.

If you’ve ever felt like your body’s in a constant battle with itself, red light therapy might be a gentle ally in your healing journey. It’s okay to try new things. It’s okay to need help. And it’s absolutely okay to hope for better days ahead. 💛

Have you tried red light therapy? I’d love to hear what worked (or didn’t) for you in the comments below. 👇

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New Diagnosis #PCOS #PolycysticOvarySyndrome

PCOS ( polycystic ovarian syndrome)
is defined as “A hormonal disorder causing enlarged ovaries with small cysts on the outer edges.”

And causes symptoms such as irregular periods . Irregular hair growth . Issues with fertility, acne , and obesity.

has been a suspect on the list of “ What is wrong with Megan “ for years because of my strong family history of it , and the fact since the age of 14 I have had had every single symptom .
But one .

And with the unstoppable edema I’ve been having ( to a point I was gaining 10 pounds of fluids every 2 weeks )

My pcp decided to try
Me out on Metformin .

And I don’t think it’s helped the edema ( I can fit into sneakers now so MAYBE it’s helped .. )
BUTTT, it’s improved my brain fog and epilepsy symptoms . One of my BIGGEST seizure triggers is low blood sugar , and as you all know my sugars will just dip into the 40s and 50s .

When that starts to happen ( which would be pretty regular )

I’d get dizzy . Lightheaded, Nauseous . My vision would go spotted / funky ( which are all symptoms I have and I’m about to have a seizure)

And I can think of 2 times that has happened during the 2 weeks I’ve been on metformin !

My mom has wanted me to be on it for YEARS but no one would take our thoughts on it seriously becuase without prednisone I’ve Always been naturally thin.

But now im on it and things are improving What a win !!!

Do you have PCOS?
How long did it take you to get a diagnosis?

#smileon🐷 #PCOS #polycysticovariansyndrome #newdiagnosis #metformin #ChronicIllness #keepgoing

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I was discriminated against yesterday at a local restaurant because of the way I look and act

Hey guys, I don’t think this will get lots of attention, but I wanted to share my story of an experience I faced yesterday.

I’d like to share an experience I recently had at a local restaurant where I was mocked and insulted by the owner and her friend. They called me “weird” and “creepy,” claiming I “intimidate locals” because I walk around town. The truth is, I can’t drive due to my disability and medication—walking is how I stay independent.

They also accused me of not paying for food, even though I do most of the time, or bring friends/family who order. Others in the community do the same or even keep unpaid tabs—but I’m the one singled out. I’m on the autism spectrum and live with multiple disabilities.

I believe this treatment was not only hurtful, but a clear example of ableism. I’m hoping to raise awareness and start a broader conversation about how businesses treat neurodivergent and disabled people. I’d be grateful if you could help share my story or guide me to the right place to tell it.

Thank you for your time and advocacy.
For context, the restaurant is called “The Dale” in Mountain Dale, NY. I have schizophrenia, epilepsy, Asperger’s disorder, and a essential tremor disorder which makes it hard for me to walk, do things independently, and makes me act quiet or very talkative in certain circumstances. I do not have a record of any violence, I just take lots of medications so sometimes I stare off into space or look grimaced.

#Ableism #SchizoaffectiveDisorder #Bipolar1 #EssentialTremor #PTSD #AspergersSyndrome #AutismSpectrumDisorder #AutismSpectrum #MightyMoment

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