Myasthenia Warrior

09/04/2026

I LOVE to cook. 🍳🥘

But Myasthenia Gravis sometimes makes standing at the stove for a long time feel impossible.

So instead of giving up something I enjoy, I’ve learned to adapt my kitchen to work with my body. 💪

🪑 Use a stool or chair.

I keep a stool nearby so I can sit while chopping, stirring, prepping, or even cooking at the stove.
Sitting saves precious energy!

🥣 Keep frequently used items within easy reach.

I try to avoid constantly bending, reaching overhead, or carrying heavy pots and pans.
Keeping everyday ingredients and tools at a comfortable height makes a big difference.

🍲 Use smaller/lighter cookware.

Heavy pots can become exhausting when your arms and shoulders are already fatigued.
Sometimes two smaller pots are much easier to manage than one big one.

⚡ Break cooking into steps.

Prep ingredients, take a rest, then cook.
I don’t have to do everything all at once.

And sometimes… the easiest meal is the best meal.

Frozen vegetables, pre-cut ingredients, slow-cooker meals, or takeout aren’t failures.
They’re adaptations. ❤️

Living with MG doesn’t mean we have to stop doing the things we love.

Sometimes we just have to find a different way to do them.

Adaptation isn’t giving up.
It’s making life work for you.

MG Holistic Society

09/04/2026

🚨 POV: Your immune system is being a jerk… so you got a shirt to say what everyone in the MG community is thinking. 😂🩵

MG SUCKS! 🦥💥

This adorable little sloth says what we sometimes don’t have the energy to say ourselves. 😴

Myasthenia Gravis can steal your strength, energy, vision, voice, and so much more. So why not fight back with a little humor + awareness? 💪🩵

✨ MG Sucks Sloth Tee
🩵 Perfect for MG warriors, caregivers & supporters
🦥 Cute enough to wear anywhere
💬 Guaranteed to start a conversation about invisible illness
🎨 Featuring an adorable character created by young artist Addison Hancock

And right now…

🔥 GET 10% OFF! 🔥
Use code MGWARRIOR at checkout!

🛍️ SHOP
https://sew-it-or-knot.myshopify.com/products/mg-sucks-sloth-t-shirt-chronic-illness-awareness-tee?variant=50496245170369

Because sometimes you just have to wear the truth:

MG SUCKS. 🦥🩵

09/04/2026

Did you know September is NICU Awareness Month?

My son has a very short stay in the NICU.
Only 6 hours.

My pregnancy was not very easy.
At first, I thought Myasthenia Gravis was the only thing I had to worry about.
Boy was I wrong!

Fairly early into my pregnancy, I started seeing Maternal Fetal Medicine (High-Risk OB).

We discussed my entire list of medical diagnoses.
There is a lot of them! 😂

They told me that the antibody I produce for Sjogrens Syndrome crosses the placenta.
And when it does, it can cause a heart block.

So we saw perinatal cardiology for the majority of my pregnancy—until they said my son’s heart was working and growing just fine!

For most of my pregnancy, my Myasthenia Gravis symptoms were pretty stable.

I did receive IVIG monthly starting at about 18 weeks.
After week 20, they do fetal monitoring when you get your IVIG.

While I hated being at the infusion center for like 6 hours—it was wonderful hearing my son’s heartbeat the whole time.

The biggest issue during my pregnancy was my high blood pressure.

When you have Myasthenia Gravis, you are limited on what blood pressure medications you can take.

We tried everything!

At the end, I was on 3 Clonadine patches (rarely used because it doesn’t work well), Hydralazine and Hydrochlorothiazide (super fun to say).

And still my blood pressure was insanely high!

At my 35 week appointment, I went in for my NST and they asked for preeclampsia labs on my way out.

They said I didn’t have to wait for my labs and could head home.

I got a call about 20 minutes into my drive home.

I will never forget that phone call…

“You sound like you’re in your car. We need you to turn around and come back to the hospital. You have preeclampsia and we cannot give you magnesium. So it is no longer safe to continue your pregnancy. We are going to induce you tonight.”

I said okay—fighting back tears the entire time.

I was terrified.
I was by myself, driving on the interstate.
There was nowhere for me to turn around for another 5 miles.
And worst my partner didn’t answer his cell phone when I tried calling.

I finally got ahold of my partner who eventually met me at the hospital.

I was induced that night and gave birth about 36 hours later.

When my son was born, he struggled to manage his blood sugars.

It was up and down a lot.
Which we were told is common for preemies.

They said if he has 3 low readings he has to go to the NICU.

Well…he had 3 low readings and they came in and said he had to go to the NICU.

A flood of emotions comes along with it.

We knew we were fairy lucky.
Our son was healthy overall.
He did not need any oxygen.

He just didn’t eat consistently.
He would eat fine one time, then barely anything the next time.

Once he was in the NICU, they said he needed 3 good readings and he could leave.

He had 3 perfect readings each time he was checked!
Little turd just wanted a tour of the NICU I guess. 😂

So that is my long and short story of our NICU experience!

I left out a lot.
But you get the gist of it.

09/04/2026

This was too funny not to share!

Why did the MG Warrior bring a ladder to the party?

Because even the small things can feel like a big climb!

Happy Friday Funny!!

09/04/2026

Sharing this as B-Cell treatments are becoming more available.

CDC Issues Warning: People on B-cell drugs face a 40% mortality rate if they contract mosquito-borne diseases.

The Centers for Disease Control and Prevention (CDC) has issued a Health Alert Network advisory warning that patients taking B-cell-depleting or modulating medications, such as anti-CD20 monoclonal antibodies, face an elevated risk of severe and potentially fatal neuroinvasive disease from mosquito and tick-borne viruses.

These drugs—commonly prescribed to treat multiple sclerosis, leukemia, lymphoma, and rheumatoid arthritis—leave patients highly vulnerable to viruses like West Nile, Eastern equine encephalitis, and Powassan.

In published case reports, patients on these therapies who contracted neuroinvasive arboviral infections experienced a staggering 40% mortality rate, with most survivors suffering from long-term neurological complications.

Because there are currently no approved human vaccines or treatments for West Nile virus—the most common arbovirus in the United States—health officials are urging clinicians to educate patients on aggressive prevention strategies.

Immunocompromised patients are advised to use EPA-registered insect repellents, wear protective clothing, and avoid peak biting hours. Experts emphasize that the risk is particularly high as West Nile season peaks in late summer and early fall, and patients on B-cell therapies may present with atypical symptoms or prolonged infections that delay crucial supportive care.

source: Centers for Disease Control and Prevention. (2026). Risk of Severe Arboviral Disease in Patients Receiving B Cell-Depleting or Modulating Medications. CDC Health Alert Network.

09/04/2026

MG Community!!
Here are a few different study opportunities for you.

STUDY #1
The Details:

Who: Patients Myasthenia Gravis, living in the US
What: 60-Minute Interview - qualified participants may be eligible for additional future paid opportunities, photo/video shoots, speaking events.
Compensation: $120 for your time!

STUDY #2
The Details:

Who: Patients & Caregivers of those living with Myasthenia Gravis, living in the US
What: 60 or 70 Minute In-Person Interview
Compensation: up to $225 for your time!

STUDY #3
The Details:

Who: Patients & Caregivers of those living with Myasthenia Gravis, living in the US
What: 30-Minute Online Study
Compensation: $60 for your time!

STUDY #4
The Details:

Who: Patients with Myasthenia Gravis, living in France, Italy, or Germany
What: 30-40 Minute Online Survey
Compensation: 50€ for your time!

Sign up here ⬇️
https://rarepatientvoice.com/myastheniawarrior

09/03/2026

How often do you nap?

Daily?
Multiple times a day?
Whenever you can?

I wish I could nap every single day.
But I don’t always get the opportunity.

So I take advantage when I can!
I would say a couple days a week for sure.

09/03/2026

I swear this is one of the biggest pears I have ever eaten!

What is your favorite fruit?



09/03/2026

I truly believe in karma.

09/02/2026

Sometimes life knocks you down.
But you gotta get back up!

Life is all about perspective.