Pass the Mic 15: Ashley B Myasthenia Gravis Warrior

For those of you that are new to IWWB, Pass the Mic is a way to give other spoonie warriors a platform to share their chronic illness journeys with each other. Sharing helps us feel a little less alone in our battles. Wanna be featured? All you have to do click here. 

This month’s PTM warrior is Ashley, fellow myasthenia gravis (MG) warrior. She is here to share her experience as a snowflake (what they call people with MG).

SO WHAT’S YOUR NAME AND WHERE ARE YOU FROM?

Ashley B from Atlanta, GA

HOW OLD WERE YOU WHEN YOU WERE DIAGNOSED WITH myasthenia gravis? WHAT EVENTS LED UP TO THE DIAGNOSIS?

In 2017 I was a 22- year old Junior attending Georgia State University. My school schedule started at 5 AM most days and didn’t end until 4 in the afternoon.

I worked two jobs, serving at a restaurant lounge, and examining specimens as a lab assistant at a Children’s hospital. I ran my nonprofit organization, pledged as a member of my dream sorority, and had my hands in everything.  You get the idea; I was booked and busy.

I started to notice on my drives that I’d see two of everything but I ignored the double and blurry vision for months. Then I began to have trouble forming a smile and my words would slur after talking on the phone. Finally, after a long day, I came home, and my mom said I look like I’d had a stroke. The right side of my face drooped; eyelids so low they looked closed and my mouth uncooperative.

After months of showing symptoms of MG, I finally broke down and made an appointment with my primary care physician the next day.

When I met with my doctor, I told her everything and that I thought I had a disease called Myasthenia Gravis (learned about it in class a few months before my diagnosis). My doctor brushed off my comment and said I was too young for such an illness.

A few weeks later she sat me and my mother down and said that I indeed did have Myasthenia Gravis. I was officially diagnosed in April of 2017.

WHAT HAS YOUR TREATMENT PLAN BEEN? WHICH MEDICATIONS HAVE YOU HAD THE MOST SUCCESS WITH?

My treatment plan when I was first received my myasthenia gravis diagnosis was quite aggressive.

The goal was to treat my MG symptoms and if that didn’t work, we’d focus on the disease process. So, to get my symptoms under control my neurologist prescribed a high dose of steroids 3 times a day, 60 mg Mestinon. 4 times a day, and Imuran. I also received IVIg infusions; it was my “emergency drug”.

In December of 2017, I had my thymus removed in an invasive open chest surgery known as a thymectomy.

Currently, I no longer take any steroids, Mestinon, or IVIg (I’m severely allergic to this now). If I’m flaring or in a crisis, I receive plasmapheresis (PLEX). At one point I would take up to 9 prescription medications to manage my chronic illness and the side effects that came with some of them.

My treatment plan now is a chemotherapy drug called Rituxan every 4 months and Imuran. I attribute my success to my thymectomy surgery.

Are you in remission? If so, how long?

I wouldn’t say I’m in remission. I haven’t heard of an MG’er achieving such a thing, but I will say my symptoms are manageable now. At the end of my days, I still struggle to walk up a flight of stairs and my eyelids are going to droop if I’m tired.

BESIDES THE SYMPTOMS, WHAT’S THE MOST DIFFICULT PART OF HAVING A CHRONIC ILLNESS FOR YOU?

The most difficult part has to be the “surprise” factor of MG. One day I can be perfectly fine and the next I’m struggling to lift my head or swallow my food.

Chronic illness can be quite unpredictable, but I try not to live in a constant state of “what if” and anxiety. I try to stay grounded and focus on the things that I can control. So that means taking the necessary precautions to prevent getting sick, taking my meds routinely, nurturing my mental health, and overall, just treating myself well. 

WHAT’S THE BIGGEST IMPACT myasthenia gravis HAS HAD ON YOUR LIFE? HAVE YOU HAD TO MAKE ANY CHANGES TO YOUR EVERYDAY LIFE?

Myasthenia Gravis has impacted every aspect of my life, but my relationships have been affected the most.

Take my familial relationships, they’ve never been stronger than now. I lean on my mom, sister, and dad so much for the support! They are my backbone and I’m not sure if those relationships would be as strong without my diagnosis.

My relationships with other people have also been impacted. When I first got sick, gained 40 lbs, stopped being able to go out to clubs or bars; I lost a lot of people in my life I considered to be friends. I now realize that they weren’t. I’ve had to adjust in my everyday life, and I practice healthy boundaries now.

BESIDES PHYSICALLY WHAT OTHER EFFECTS HAS MG HAD ON YOU (MENTALLY, EMOTIONALLY, SPIRITUALLY, FINANCIALLY, ETC)? HOW HAVE YOU WORKED THROUGH THESE ISSUES?

My diagnosis takes a huge toll on my mental and emotional health. I struggle with anxiety and depression (even before my MG diagnosis).

At the beginning of it all, I was so focused on graduating college. I was rotating through major hospitals attempting to earn 600 + clinical hours, attending school full-time, working 2 jobs, and trying to stay afloat.

My mental health spiraled out of control. I realized I needed help and reached out to the counseling center at my university. Twice a week I’d sit in my therapist’s office until I graduated college. I still have a therapist and psychiatrist to this day to help me.

WHO OR WHAT HAS HELPED YOU THE MOST IN COPING WITH YOUR DIAGNOSIS?

My therapist was the most instrumental person that helped me cope with my myasthenia gravis diagnosis. She said that I could “grieve my old self”. She made me see that it was okay for me to miss my life, my physical capabilities, and my “normal” self before Myasthenia Gravis.

Our sessions were designed to help me work through the stages of grief and I have full acceptance now. My family has been very instrumental in my growth and prayer and meditation are also very helpful.

WHAT GOALS HAVE YOU BEEN ABLE TO ACCOMPLISH IN SPITE OF YOUR myasthenia gravis DIAGNOSIS? WHAT’S NEXT FOR YOU?

I’ve accomplished a ton of goals despite my chronic illness.

I became a member of Alpha Kappa Alpha Sorority, Inc., graduated from Georgia State University with a bachelor’s degree in Respiratory Therapy, passed my board exams, worked in the PICU of the top Children’s hospital in Atlanta, and worked in the best adult facility in the state.

I also manage my blog (Ashley’s Anatomy), candle business, write as a contributor for an app called Elly health and act as a patient advocate for other MG patients out there. My illness doesn’t stop me from doing much, just slows me down a little. 

THINK BACK TO YOUR myasthenia gravis DIAGNOSIS DAY. WHAT ADVICE WOULD YOU GIVE TO YOURSELF OR SOMEONE NEWLY DIAGNOSED ?

I would tell myself “Temporary pain for long-term gain”. Yes, things may seem unbearable now, but it will all be worth it in the long run. I would remind myself of that.

Any other comments or words of wisdom you want to share?

Chronic illness doesn’t define you. You are so much more than a diagnosis and I would just encourage anyone reading this to practice gratitude. It’s as simple as thinking of all the things you are grateful for.

If you are ever in need of a friend or someone to chat with my DM’s are always open! Follow me on social media to stay connected <3. Visit AshleysAnatomy.com to read more about me and life with MG.

Thank you Morgan for giving me the opportunity to share my story.

If you’d like to connect more with Ashley, you can find her on IG : @_ashleysanatomy or check her out on youtube.

Also, if you want to know more about Ashley and her journey, she and I are going live Wednesday 2/24 at 7:30pm EST to chop it up and dig a little deeper. You can catch the replay on IG or YT.