Myasthenia Warrior

Myasthenia Warrior Author, Artist and MG advocate sharing life with Myasthenia Gravis. Empowering others through awareness, education, and lived experience.
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NOT MEDICAL ADVICE—just real insight from my journey.

Find new ways to look at the world.Change your perspective.Life is tragic, but it is also beautiful. Life is messy, but ...
08/05/2026

Find new ways to look at the world.
Change your perspective.

Life is tragic, but it is also beautiful.
Life is messy, but you can still find routine.

View the world like a child.
The innocence.
The hope.
The curiosity.

Don’t lose that part of yourself.
That part will help you stay present and grateful.

08/05/2026

🥺Getting a diagnosis of Myasthenia Gravis is a lot to process.

😬It’s chronic and unpredictable.
Which can bring along anxiety, a completely valid response.

🎯Here are a few things that we can do to help us cope with the anxiety after diagnosis.

📚Learn as much as you can!
Uncertainty fuels anxiety.
What we don’t understand can be terrifying.
Learn what your triggers are, your medication options, and what a flare looks like.

🤝 Connect with others who have MG.
Groups like the MG Holistic Society offer communities both online and in-person.
Connecting with others who truly understands helps ease the sense of isolation.

😷 Build a flare plan.
Know exactly what steps to take when symptoms worsen.
Who to call and what to watch for.

😴Pace activities and rest deliberately.
Fatigue often worsens symptoms and anxiety.
Give yourself the guilt-free rest breaks to ease to help manage your energy levels.

🗣️ Work on emotional side, not just the physical.
Therapy is a healthy option to cope with the anxiety and grief after diagnosis.
Try to find one who specializes in chronic illnesses.

🙏You are not alone in this journey.
Don’t let your anxiety get the best of you today.

08/04/2026

Representation matters.

08/04/2026

I know that my calling in life was to share my heart and compassion with the world.

I never knew what direction life was going to take me.

But I always knew that every day good or bad was leading me in the right direction.

Through all my trials and tribulations, it has helped me take care of others.

Because not only have I been the caregiver, but I’ve also been a patient.

And that is not a perspective that every caregiver has.

I have a chronic illness.
I have a disability.
I’ve been in the hospital multiple times.
I’ve had a major surgery, which I’d say was life-saving.
I’ve had a Foley catheter.
I’ve been on oxygen.
I have had drain tubes.

I have even had nights where I did not think I was gonna wake up for the next morning.

So sharing my caregiving experience is what I was put on this earth to do.

Because I know how bad it can feel being the patient.

And I don’t want people to feel bad in their most vulnerable situations.

Have you ever had a moment of spiritual awakening? Have you ever felt like everything happened exactly the way it was su...
08/04/2026

Have you ever had a moment of spiritual awakening?

Have you ever felt like everything happened exactly the way it was supposed to?

Last night, I had the pleasure of a Spiritual Guidance session from Jen Carew, Founder of Ancient Hearts Collective.

My spiritual journey has taken a lot of twists and turns over the years.

Being pulled in different directions and not knowing where I need to go.

I always thought my spiritual views didn’t align with anything I had been introduced to.

Jen asked me to explain in my owns words what I feel is my spiritual connection.

I was raised Catholic and always had more questions than answers.

And I was extremely turned off from the concept of religion when a Catholic priest ripped open the confessional booth and called me the devil for saying I didn’t think I needed to confess my sins to him as the “middle man”.

I have always believed in a higher energy.
I have always believed in karma and the balance that it brings.

I have always believed in reincarnation, and the hope of eventually “moving on” when we learn all the lessons we needed to learn.

Jen says…that is very Hindu of you.

Hinduism.
Obviously I have heard of it, but didn’t know much about it.

I have always just done my own thing to keep my spirituality in check.

But I realized that by living a truly holistic lifestyle, you need to take care of your mind, body AND spirit as a whole.

You cannot focus on one without hindering the others.

Last night was the reminder I needed.

I know my purpose in life to help others.
To be a caregiver to the world.

To help those in need. 🙏

Have you ever had a truly beautiful spiritual experience?

Over the weekend, I attended my cousin’s outdoor wedding!Outdoor weddings can be a struggle for people who are affected...
08/04/2026

Over the weekend, I attended my cousin’s outdoor wedding!

Outdoor weddings can be a struggle for people who are affected by heat and humidity.

Here’s my game plan:

☀️ Shade + seating > standing all day
Be conscious of the shade moving. I started out in the shade and was in the sun for most of the ceremony.

💧 Stay hydrated, bring cooling accessories
I had water easily available. I also used my neck fan quite a bit.

⏰ Time meds so strength peaks for the big moments

🍽️ Ask for a seat at the buffet — holding a plate while standing is no joke
Don’t be afraid to use a wheeled walker with a seat. You can either use the seat or put your plate on it.

🛑 Permission to leave early, guilt-free
Say your goodbyes, but don’t feel guilty. The day is not about you anyways. They will be happy you showed up for what you could.

🕶️ Sunglasses for glare + ptosis
The sun will make your eyes get tired more quickly.

MG doesn’t mean missing out.
It just means showing up a little differently. 💙

MG Community!! Here is a great opportunity! Monday, August 3rd Georgia MG Support Group Meeting.Meeting details. 6:30 PM...
08/03/2026

MG Community!!
Here is a great opportunity!

Monday, August 3rd Georgia MG Support Group Meeting.

Meeting details. 6:30 PM - 8:00 PM at 4147 Chamblee Dunwoody Rd. Atlanta GA 30341 and via Zoom.

We will have as our guest speakers Angela Chandler, MD, FAAN from AMGEN to discuss the new MG treatment UPLIZNA

For in person attendants:

I want to encourage as many people as possible to be in person (bring family and friends). Please let me know if you are coming in person, so I know how many groceries to buy!!!

For virtual attendants:

You are invited to a Zoom meeting.
When: Aug 3, 2026 06:30 PM Eastern Time (US and Canada)

Register in advance for this meeting:
https://us06web.zoom.us/meeting/register/wTVEnX6MSjiYu9Qd0A3S1g

After registering, you will receive a confirmation email containing information about joining the meeting.

Not every flower blooms in a perfectly tended garden.Some of the strongest living things push through cracks in the conc...
08/03/2026

Not every flower blooms in a perfectly tended garden.

Some of the strongest living things push through cracks in the concrete.

They grow where no one expected them to.
They survive harsh weather, curious feet, and impossible conditions.

Sometimes, that’s us.

Living with a chronic illness, disability, or any challenge can make it feel like we’re growing in all the wrong places.

We may not have the ideal circumstances, endless energy, or an easy path forward.

But growth isn’t measured by where you grow.

It’s measured by the courage to keep growing anyway.

Maybe you’re the one quietly showing up to doctor’s appointments.

Maybe you’re learning to celebrate the small victories.

Maybe you’re helping someone else feel less alone simply by sharing your story.

You don’t have to bloom in perfect conditions to have purpose.

So be the mushroom by the sidewalk.

Grow anyway.
Take up space anyway.

Remind the world that resilience doesn’t always look glamorous—but it’s beautiful all the same. 💙🍄

I found this amazing mural in Cedar Rapids.If you look closer, you can see all the little details. It is a balanced stac...
08/03/2026

I found this amazing mural in Cedar Rapids.

If you look closer, you can see all the little details.

It is a balanced stack of stones, with a giant stone in the middle.

Each side shows a different picture.
Each side tells a different story.

Similar to life.
A bunch of different stories put together a beautiful stone.

Your perspective can change by looking at different parts of your life.

08/03/2026

Have you ever thought of food affecting the way you feel?

Food journaling and symptom tracking have been found to help people living with Myasthenia Gravis.

Since our fatigue and swallowing issues can vary so much day to day.

Here are a few tips for how you can start a food journal.

What to track?
⏰ Time of day for meals and symptoms
🥗 Food texture and consistency (solid, soft, liquid)
😫 Chewing and swallowing effort (any choking or fatigue)
😬 Jaw fatigue partway through a meal
💊 Medication timing relative to meals
🍱 Portion size and meal duration
😮‍💨 Overall symptom severity that day (MG-ADL score)

Try journaling right after eating and not hours later.
MG fatigue can affect our memory for those details.

Note if your symptoms improve after resting mid-meal.
That is useful information for your neurologist.

Flag “bad days” separately you can look for triggers.
That might be heat, stress, illness, missed medication dose.

Or may you even notice that your symptoms get worse when you eat specific foods.

All of this information is a good way for you and your neurologist to find what treatment works best for you.

MG Holistic Society

Address

Janesville, WI

Website

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