Myasthenia Warrior

03/02/2026

Mark your calendars for support group meetings!!

03/02/2026

This is a post I shared a few years ago:

“I have lost about 40lbs since the first picture was taken. I am down about 55 in total now. My face has changed so much shape. My left eye has gotten lazier. I have zero muscle tone in my face and throat.

I am still working on eating solids. My throat muscles just get so tired so easily. I have seen an improvement on my upper jaw moving forward. But there is still so much movement and inflammation in my jaw that I still feel stuck in the same place.

I know it has only been about 3 weeks into the growth appliance. I know I am in this for the long haul. I know I won’t be back to normal for a while. But damn…I just want my fully functioning face back.”

Reflecting back on this post….
It is so obvious it was Myasthenia Gravis!

I had been diagnosed with TMD (temporomandibular dysfunction), which I do still have! But that was not the reason behind all of my weakness.

I am glad I was finally properly diagnosed.
I honestly don’t know how much longer I would have survived if I had not gotten my diagnosis.

03/02/2026

Today is Teen Mental Health Awareness Day.

🌎 Worldwide, 1 out of 7 teenagers is diagnosed with a mental health condition.

According to CDC data, 40% of U.S. high school students reported persistent feelings of sadness or hopelessness in the past 12 months. 😔

20% of those considered unaliving themselves, and 9% attempted.

🙏Mental Health Awareness has such a negative stigma and it shouldn’t!

🫶I wish I had sought mental health treatment as a teen. Maybe I would be in a better place mentally?

🫣I always laughed off my struggles, and continue to do that today. Something I am working on in therapy.

📸: My senior picture (2009). My mental health was really bad, but I was great at hiding it.

If you, or someone you know is struggling with their mental health, please reach out! 🙏



🔗: https://www.cdc.gov/healthy-youth/mental-health/index.html

03/02/2026

Monday Mantra:

I adapt, and that is a powerful skill.

Living with Myasthenia Gravis has taught me how to adapt.

Having a dynamic disability means having symptoms that fluctuate.

It can be difficult to have concrete plans.
But adapting in the moment is a superpower!

Not allowing the negatives to overtake your life. Not every day will be easy, but we will survive!

03/02/2026

🗓️ The more you understand your Myasthenia Gravis symptom patterns, the more control you gain over your day.

💪Many people feel strongest in the morning and progressively weaker later in the day. 🫩

🤩Knowing your personal pattern—and on which days or at what time you feel best—is key to planning your activities effectively.

🧐How to plan your day?

📝 Schedule important tasks for your best time
Pay attention to when your energy levels are at their highest. Plan activities that require more physical effort during that window.

🛌 Break up tasks and take regular rest breaks.
Split bigger tasks into shorter segments. Rest BEFORE you feel exhausted!

🍲 Plan meal strategically
Eat smaller meals more frequently. Consider softer foods and take medications before meals to improve muscle strength while eating.

🫣Adjust based on daily symptoms
Symptoms can vary daily. Don’t expect to do the same amount of activity every day. Use a symptom tracker or journal to help identify patterns.

🗒️ Keep stress, weather, and other triggers in check.
Plan to avoid extremes whenever possible. Activities like errands in hot weather or emotionally stressful tasks may need to be rescheduled.

💊 Start with your med schedule.
Medications like Mestinon often work best at specific times. Try to plan around when it will “kick in”.

🔋Organize your space. Keep commonly used items within reach to reduce spending energy.

🙏Be flexible. Your plans should adapt to your energy levels. Don’t feel the need to push through because your body may regret it later.

Here are some final tips you can take away from this:
✔️ Consistent routine and flexibility may give you better symptom control.
✔️ Listen to your body above all.
✔️ Track your symptoms to help you and your clinician make better decisions.


MG Holistic Society

03/01/2026

For those who don’t know, I also crochet!

Not only am I busy being a CNA, a mom, a partner, an advocate, but I am also busy being an artist!

I am having a 20% storewide sale!
I am transitioning to upcycling clothing.

Bringing crochet and fabric together!
Join me on yet another adventure!

✨ Big News from Sew it or Knot ✨

I’m officially transitioning my business model and leaning even more into what I love most — repurposing clothing and creatively blending crochet with fabric pieces 🧵🧶♻️

Because of this exciting shift, I’m having a

🎉 20% OFF STOREWIDE SALE 🎉

This sale is happening until further notice, but don’t wait — stock is VERY limited! Many items are:
✨ One-of-a-kind
✨ Uniquely handmade
✨ Not being remade

Once they’re gone… they’re gone. 💨

This is your chance to grab something special before I clear out current inventory to make room for the new vision of Sew it or Knot 💛

Shop here:
🛍️ https://sewitorknot.square.site/s/shop

Thank you for supporting handmade, sustainable, and creative fashion. I can’t wait to show you what’s coming next! 💚

03/01/2026

🐘 You’ve got Elephant-Level EXCELLENCE!

Be proud of who you are.
Love yourself. 🫶

🙏 Sometimes we need those reminders.

03/01/2026

Today we celebrate International Wheelchair Day ♿🌍 — a day to recognize the importance of wheelchairs in millions of lives and to celebrate the strength, independence, and community of wheelchair users everywhere.

A wheelchair is not a limitation.
For many, it is freedom.
It is access.
It is mobility.
It is independence.

It’s also important to understand that not all wheelchair users are the same:

🔹 Non-ambulatory wheelchair users cannot walk and rely on their wheelchair for all mobility.

🔹 Ambulatory wheelchair users can walk to some degree — sometimes short distances, sometimes with pain, fatigue, balance issues, or medical risks — but still need a wheelchair for safety, endurance, or participation in daily life.

Both are valid. Both deserve respect. 💙

You cannot always see someone’s disability. Many conditions are invisible — chronic pain, neurological disorders, heart or lung conditions, autoimmune diseases, and more.

If someone stands up from their wheelchair, walks a few steps, or appears “fine,” it does not mean they are faking or that they don’t need it.

Today is a reminder to:
✨ Respect mobility aids
✨ Avoid assumptions
✨ Make spaces accessible
✨ Listen to disabled voices

A wheelchair is not a sign of weakness — it’s a tool for independence.

Happy International Wheelchair Day!
Let’s build a world that moves for everyone. ♿🌎

03/01/2026

🌸 MARCH AWARENESS MONTH 🌸

March is packed with powerful awareness moments that matter deeply to the chronic illness and rare disease community. Let’s honor them all 💙

🌷 MONTH-LONG OBSERVANCES

💜 Autoimmune Awareness Month
Shining a light on the 100+ autoimmune diseases affecting millions. Awareness brings understanding, earlier diagnosis, and better support.

👩‍⚕️ Women’s History Month
Celebrating the strength, leadership, and resilience of women — including the millions of women navigating autoimmune and chronic illness every single day.

📅 AWARENESS WEEKS

🛡️ Patient Safety Awareness Week (March 8–14)
Advocating for safer healthcare, informed patients, and empowered voices.

🧠 Brain Awareness Week (March 16–22)
Promoting brain health, neurological research, and education — vital for conditions that impact the nervous system.

📌 IMPORTANT DAYS TO RECOGNIZE

♿ International Wheelchair Day (March 1)
Celebrating mobility, accessibility, and the people who use wheelchairs worldwide.

🧑‍🤝‍🧑 World Teen Mental Health Awareness Day (March 2)
Raising awareness and reducing stigma around teen mental health.

🌍 World Kidney Day (March 12)
Highlighting kidney health and the importance of early detection.

💉 National Nurses Day (March 19 recognition)
Honoring nurses who advocate, care, and show compassion daily. 💙

🩺 National Doctors Day (March 30)
Thanking physicians for their dedication and commitment to patient care.

March reminds us that awareness leads to advocacy, research leads to progress, and appreciation strengthens community. 💜

Let’s educate.
Let’s support.
Let’s amplify voices.

03/01/2026

💰 My goal this month was to make $100.
And I did it!!

🫶 With the support of all of you.
We continue to raise awareness for Myasthenia Gravis.

🙏 Thank you all for being here on this journey with me.

02/28/2026

🌞 Yesterday was 56° and sunny.
❄️ Today is 30 and snowing.

🫩 These kinds of drastic changes in weather can be difficult for someone living with a chronic illness.

🙏Take care of yourself.
🛌 Rest when you need to.

02/28/2026

You’re proof that calmness and kindness create real strength!

Happy Rare Disease Day!