A Year On Living with Myasthenia Gravis

It was a bright and beautiful morning but the symptoms of muscle weakness has been worsening. We were planning to go back to my General Practitioner and then head out for our delayed Valentine’s lunch afterwards. As we arrived at my GP’s clinic, we decided that I would go in to check if she could see me (it was first come first serve with a limited number basis pre covid era). Unfortunately she could not see me, so I walked out to wait for my husband to drive by. When I saw him, I took a step down to the road and fell flat on my face. My husband saw someone fell but was shocked to find out it was me. I could barely lift myself up. That incident propel us to go to the hospital that very day.

For a year now, we are very grateful that the protection of God was upon me and still is holding us tightly. Just days before the incident, I saw my chiropractor for a different issue and told her what happened. She checked me and found that my muscles were fine. She also told me if things worsen, go to a neurologist because that would likely be nerve problem. Looking for a hospital with a neurologist was made easy thanks to a dear friend of mine who worked in that hospital. After checking in to the hospital, a brain MRI scan was ordered immediately to rule out stroke. No stroke but Myasthenia Gravis (MG) was given as a preliminary diagnosis. My neurologist needed to confirm the diagnosis through a nerve test and that was only available on weekdays (it was a Saturday when we checked in). We decided that we will go home and get back to the hospital on the following Monday for outpatient consultation.

My condition worsened to the point that it was difficult to breathe and that got us to decide to admit me the very next day. The difficulty in breathing freaked everyone out. My neurologist initially thought he could treat me as outpatient but when he saw me the following Monday in the ward, he ordered the nerve test to be done immediately and rescue medication to be administered right after the test. The nerve test result baffled my neurologist so was the ultra high autoantibodies level. MG is so variable that he could not predict what would happen to me, his only hope was that I respond well to treatment and hopefully I can get into a remission.

Ever since my diagnosis, I have learnt a lot about MG. The variability and uniqueness of each patient’s condition are just simply mind blowing. The more I learnt the more I am in awe and grateful for the goodness of God. I was literally days away from a myasthenic crisis. If I had been a few days late and got into a crisis, I would have needed intensive care and intubation would be necessary because MG also affect voluntary muscles including those for breathing. Those thoughts brought tears of gratitude and just filled my heart with praise of God. He is really good to me. My autoantibodies level was 200 times above the minimum trace level, an 8cm thymoma was present and the nerve test was horribly failing. Who could have saved me from the worst if not God?

From the beginning of my journey of healing I’ve sensed the Lord assurance of His presence and love. He meant this for His glory and for my good. Living with MG has brought me to a place of even higher praises where I learnt about surrendering in victory. I name this a process of spiritual healing that affects my physical healing. One of the greatest victory is my ability to let go of my burdens. A dear friend of mine lovingly reminded me to let the One who loves me most carry those burdens I was carrying. From the beginning, I’ve recognized stress as a harmful trigger to my symptoms, what I did not recognize was how much stress I put myself through. Motherhood was new, I did not realize the years of living in the lies of the world has dampened my ability to connect to my natural maternal instinct. The rejection of genuine womanhood in my surrounding has chipped away my own natural womanly instinct. It was stressful when most of the voices around me were literally telling me what I’ve done wrong as a mother. I began to shut everything down and was determined to reconnect to my heart again on top of all the stress of new motherhood. Not only that, I was also malnourished but I just did not realize it back then. When my body could not take it anymore, it broke down to bring me to a place of clarity again. I regretted my lack of care towards my own body and I apologize to my body, made a promise that I am going to take care of me seriously.

We took so many actions to give me the best chance to beat MG in many aspect like changing diet and lifestyle.  Even our prayer life changed for the better. For this post, I’d like to focus on the blessings of prayer. I initiated a 54 Days Rosary Novena for my healing on 19 March 2020, the Feast of St. Joseph. I was daring enough to ask for a forever remission to happen on 19 March 2021. My prayer journey with the support of numerous people has blessed me tremendously.

I’ve improved so much and am now on the last leg of steroid dose adjustment (I am still on high dose of immunosuppresant). The most stubborn symptom that remain is ptosis. Throughout the year of good days and bad days, I’ve remained positive and hopeful thanks to the grace from prayer. Then finally in mid Jan, I started experiencing more symptoms free days (I’ll share more about it in the next post), my boldness to hope for a full remission also increase.

Meanwhile the current climate of what’s happening in the world is pretty chaotic. We see a greater need to pray even more fervently. By Divine Providence I stumbled upon a video talking about consecration to St. Joseph by Fr. Donald Calloway. I’ve wanted to do it last year but MG was just overwhelming (plus another major drama of my brother’s hospitalisation), so when reminded about, we made a decision to do it this year. I wanted to consecrate on 19 March 2021 and my first action was getting the book early Jan but it was on restocking list that may take up to 5 weeks to arrive. We bought it in faith hoping that it’ll arrive on time.

Praise be to God, we got the book on time and when I realise the significance of the date to begin the consecration journey, I was awestruck. It begins today, 15 Feb – the anniversary of that fateful day I fell flat on the road. Wow!!! The love of God through our Spiritual Father, St. Joseph moved my heart to praise Him. I felt so loved and it’s like St. Joseph is assuring me of his prayer. How awesome is that!!!

I am feeling hopeful!
Photo Credit: Karen Soh

Dearest friends, I pray that you are blessed by my story. I believe our personal story is a unique and exciting one when we see it from the perspective of the One who love us most. May the coming Holy Season of Lent brings grace upon grace in your life and may your story be one that bless the people around you.

With lots of love,
Irene