Heaven’s Autoimmune Story

MEET HEAVEN

Hello! My name is Heaven, I am 17 years old and senior in high school. I was recently diagnosed with Myasthenia Gravis, however, I am so much more than my autoimmune. I love to read, write, learn new things, hang out with my amazing friends and family. I have an obsession with sloths and a passion to help people. This yearning to help others has inspired me to pursue a career as a nurse practitioner. I am very much a sensitive soul and want to make everyone I meet happy.

 DIAGNOSIS

n October of 2019, my family and I started to notice my eye lids were very droopy and heavy. I could not physically open them wide. I was also experiencing double vision. This was very concerning and I ended up making an appointment to visit my optometrist. These symptoms were very big red flags to her and she suggested I see a neurologist immediately.

By December, I visited a neurologist where she diagnosed me with Myasthenia Gravis (MG). It was arranged for me to have an EMG done to confirm her diagnosis. We originally thought my MG was ocular and only effected the muscles around my eyes. However, after being placed on a medication that was only intended to keep my eyes open, I started to have worsening symptoms that effected my entire body. I started having slurred speech, muscle aches, and started choking on food, not to mention the medicine I was prescribed seemed to help, but not by much. My mental health has never been the best, but it was at this point I struggled every day. I hated what I saw when I looked in the mirror, people made jokes about my droopy eyes, etc. I just sat there and cried sometimes, I had all these people around me who supported me, yet I felt alone.

I ended up meeting with neurologist again in February to discuss my worsening symptoms and this was very concerning to her. She then made the decision right then and there to contact the other neurological specialist she worked with and talk to them about getting me on proper medication because it was now clear to her, my MG was not just ocular. In literally a week, so much progress was made. The doctor who would be preforming my EMG requested himself that I be tested a week earlier than the day that was already scheduled. An MRI of my chest was also ordered to see what my Thymus Gland looks like (MG originates in the Thymus).

At the time of writing this post, I had my EMG two days ago (which by the way, was SUPER painful) and the doctor confirmed what we already knew, I have general MG. He called my case, “pretty severe”, but expressed to my family the next steps. Based on the results of my MRI (which I’ll have done in two weeks), I may have to have my Thymus removed which they hope could send me into remission for a while. My journey is only begininng, but I have become like the world’s biggest advocate! I have been unsucessful in finding other people who too suffer from MG, so I have broadened my horizons to the autoimmune community in general, we are all unique and beautiful, and strong! While I do have my bad mental health days at times, having MG is teaching me that I am stronger than I give myself credit for.

 LIFE CHANGE

MG has made it hard to do things as simple as wash my hair. I have to limit my physical activity and even driving is sometimes a challenge.

 HEALING

I still am looking for more things I can do physically to alleviate symptoms, but I do wear an eye patch on my lazier eye on days that my double vision is worse. I also wear a regular sleep mask, when my eye muscles are in pain, when just lounging. As for mental health improvement, I have a journal that I write in frequently whenever I’m sad, angry, or frustrated. I have also done some meditation to open my mind and relax me.

 STRUGGLE

I still struggle with double vision, however, my eye lids have become less droopy when on my new medication. Eating is still hard, but the biggest challenge is the lack of arm strength due to MG. Doing my hair is a challenge as well as washing my hair and even reaching for an item on a high shelf. The best way I know to explain what MG does to me is The Spoon Theory. I DEFINITELY have to be careful that I don’t use up most of my spoons in just one activity.

INSPIRATION

Oh gosh, I have a lot of quotes I enjoy! I am very much a quote-snob, but some of my favorites that have helped me on my journey are:

“I survived because the fire inside me burned brighter than the fire around me>”
“Still, like air, I rise” – Maya Angelou
“What we suffer now is nothing compared to the glory He will reveal to us later”- Romans 8:18
“At the end of the day, we can endure much more than we think we can.” – Frida Kahlo
“when you can’t find the sunshine, be the sunshine”
“Everything comes to you at the right time…be patient”

Well, since I shared a lot of quotes, that all follow the same premise. These quotes remind me that though life seems difficult right now, it will not always be this way. You are not alone and stronger than you perceive and your story is just beginning!

Find Heaven | @heavenpalffy