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Patient InsiderHi, I’mTashaWhen living with myasthenia gravis,finding balance is key.

MG patient insider, Tasha

I could not even pronounce it

Neither could my dad. I was 6 years old when I was diagnosed with myasthenia gravis back in 1993. My mom noticed that I took a lot of breaks and was always lying down. Once I was playing outside and my body just gave out. I tried to use the fire hydrant to pull myself up. That's what prompted my mom to get me looked at. At the time, there wasn’t much information out there about the disease. One thing that made it a little easier: my aunt has MG. So I literally had my own walking human dictionary for everything that I was experiencing.
I learned to avoid negative conflict the hard way.

A car dealer made my MG come back

I was trying to get my car fixed. It was September. It was hot. And the dealership didn’t want to fulfill their part of the contract. It's so different for women and men at the car dealership. They were trying to close me in this room and force me to do what they wanted. I'm in the lobby and I'm getting loud. I just wanted them to do what they said they would. That’s when I learned about stress and MG.

I went home and everything started going haywire. Parts of my face felt really heavy. I was like, "No, something's not right." So I ended up going to the emergency room.

The ER doctor thought I was having a stroke. My eyelid was droopy. My speech was slurred. I had no clue what was going on. But I knew that I have MG. And I knew that I wasn’t having a stroke. The doctor was trying to give me a med that people living with MG aren’t supposed to have. It took some back and forth to get him to listen. The challenge? Not everyone is familiar with MG. In fact, the nurse on duty told me that I was the second patient with MG she’s seen in her 20-plus-year career.

Over the next couple of years, I was in and out of the hospital 5 times. The whole experience was really traumatic. With the help of a neuromuscular neurologist, I was able to get my MG better managed again.

I was 22 years in remission until this incident at the car dealership. Now I don't allow things to frustrate me, especially since stress is such a big trigger for me.

an eyeball crying

Let those emotions out

When you’re having a hard day, don't hold emotions in. MG is connected to our emotions. And when our emotions are triggered, we're triggered. It just throws us all out of whack.

The truth: you're going to have days where you just want to scream. I still do. So have those moments. Get it out of your system. Holding anything in that's negative is stressful, and that can trigger our MG. Don’t bottle it up. Scream. Cry. Whatever you need to do. Talk to someone. Write it down. Just don't hold that stuff in.

Becoming my own best advocate

Doctors can choose who they want to see. And, as patients, we should have the say-so of who we want to take care of us. Over the years, I’ve learned to ask a lot of questions, especially when interviewing prospective doctors. If you’re not comfortable and you feel that the doctor isn't listening, you have the right to say, "No, thank you."

What do I do when preparing for a doctor’s appointment? I keep journals. I write down how I'm feeling now, how I felt from the last appointment, and how I feel from one treatment to the next. All this information helps so much. Nobody can tell our story and how we feel better than we can. So we have to speak up.

Another thing I do? I make sure to carry a list of medications I can and cannot take because of my MG. A couple of years ago, I had to go to urgent care for a mild case of bronchitis. I had this list with me, which helped during the appointment. And the doctor was so appreciative, too!

Balancing it all

I know my limits. When to sit. When to go to bed. When to stop. If it’s a hard day and getting to the kitchen is an accomplishment, celebrate it. What might be a mediocre thing to someone else is huge for us.

But I don’t want to live a life that feels limited. My parents never really held me back from anything. I still try to live that way. With life, sometimes you have to take a leap of faith. So that’s exactly what I’ll be doing: going skydiving for my birthday. For me, it all comes down to hope. If you have hope, you're not going to limit yourself.

a parachute
Hope is one of the most beautiful words to me.
MG patient insider, Tasha

My Reading List

You're not alone on this journey. Here are some articles that may help.

Oh, and follow more of my story.