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

Navigating Motherhood through a Chronic Disease

My world was in a daze back in February when I fell flat on my face on the road before being diagnosed with Myasthenia Gravis (MG): an autoimmune disorder that attacks the neuromuscular juncture causing muscle weakness; including voluntary muscles used for breathing. The first thing I was asked from every person I talked to was: “Were you carrying your baby when you fell?”. Thank God I was not carrying my baby. It all started a little less than a month prior to that fateful mid February day, when I noticed difficulty in chewing my food. I thought it was the effect of me feasting away during Chinese New Year.

The symptoms got worse that I started making my food softer and did some research on what could be happening to me. MG came out as the top possibility. Reading more about it made me dread it and kept hoping that it’s not MG. My GP was hoping of the same but somehow my symptoms worsen to the extent that I could not lift myself up from sleeping position, chewing became increasingly difficult that often followed by slurry speech, lifting my arms for short while took a toll on me, smiling was a task and I was constantly exhausted.

Upon arrival at the hospital, the neurologist ordered a brain MRI scan to rule out stroke. MG was given as a preliminary diagnosis that was to be confirmed the following Monday (I went in on a Saturday), when the nerve testing centre is in operation. We decided to go home for the night and planned to be seen as outpatient on Monday. However, I started having difficulty in breathing. It was a scary evening, the what ifs were all over the place.

Sharing with community of friends who prayed for me certainly helped me through that evening. I received the grace to accept the diagnosis and to enter into treatment regime. Upon seeing me as inpatient, my neurologist quickly ordered the necessary tests to be done and had me started on IV immunoglobulin (IVIG) rescue therapy while also start me on my longer term treatment. I was blessed to have tolerated the treatment well. After the first dose of IVIg, I could tie my hair and that felt so good. A Chest CT scan also revealed the existence of a thymoma which means surgery is needed to remove it but that can only be done once I am stable enough.

My biggest worry was my daughter. How am I going to mother? How am I going to provide for her anymore? I enjoyed our breastfeeding journey and does that mean I need to stop altogether? God was so gracious to speak to me at that time by inspiring me to seek breastmilk donation. I am grateful we have a very good network of breastfeeding advocates. Through the group and through friends who helped out, I managed to source out enough donated breastmilk that nourished my baby. Till today she is still enjoying the benefit of human breastmilk thanks to the generous giving of our local Mama Tribe. My own breastmilk supply has suffered a great decline due to the treatment. Even if it is limited, I am still grateful my child still get something from Mama.

We recognized that strength is the major challenge for MG patient, hence we were quick to get practical help. My mother arrived the day I was admitted to the hospital which was such great help for us. She helped me with the baby and daily household stuffs when my symptoms was at the worst. We also arranged for cleaning company to clean the house. My mother’s stay for almost a month helped me to balance a new lifestyle. I was able to get the rest I needed and to get around organizing stuffs that would aid daily living.

At the peak of the treatment to suppress the autoantibodies and to replenish my strength, I was swallowing 20 tablets daily with the help of 5 alarms to remind me of the timing. On top of that, I also started taking specific health supplement tablets to aid with my body function as well as to counter side effects of treatment. The first month since the diagnosis was really blurry. I could only hold enough strength to play with my daughter. I was afraid to carry her in case my strength fail and she slipped off my arms. My emotion was all over the place partly due to the side effects of the medication. Normalcy were hard to imagine.

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Days passed and then months, I started to feel much better. Looking back at the timing, I can testify to the goodness and mercy of God. After my mum left, I got help from my niece and sister for a short while. I’ve also got a friend to help out with cooking on some days. At that point I started to take back the cooking role at home. God in His mercy showed me His unique way of empowering me forward.

Due to the lockdown, we were short of an extra pair of hands after my sister went back to her home and also was locked away from hiring help for cleaning. By that point, my symptoms has started to stabilize to the point that I was confident to carry my baby with the help of a carrier. But I still occasionally feel overwhelmed and limited. So I asked God what was the best view to see my situation? God was quick to answer: “think possible and do what’s possible!”

It was a great place to begin. What’s possible were different on day to day basis. Some days possibility looked like a clean house and warm meals, some days it’s the grace to be grateful that the day went well with little done in the house. There were times possibility meant just being able to pray and connect to my Source through the demands of motherhood. The invitation was to enter to a place of trust and rest; and I happily accepted that invitation.

One of the first breakthrough was me driving alone to pick up my baby’s breastmilk donation. Heaps of preparation ahead of time and I was so pleased that I made it. Driving can be difficult as the bright sun tends to tire me and often resulted in ptosis (droopy eyelid). That fateful morning was bright as and I responded with praise because if God allowed it, then He must be planning to show me His glory.

Thinking possible and doing what’s possible has also helped me to recognized my own preference. I realized piles of chores can overwhelm me, so I start to manage household chores in bite size. Meals became simpler and priority to spend time as a family became our top agenda daily. As my baby grow, her needs also evolve and I am invited to follow her growth with an open mind. The abounding grace I receive through prayer has helped me to have enough time and strength to learn about supporting my child’s development. One of the most fun thing we have decided to apply is Baby Led Weaning method of introducing solids. I had so much fun watching my baby enjoying her food and growing in her fine motor skills. Through all these, the joy of the Lord is my strength!

What brought me through from the peak of my flare up (with the autoantibodies level 200 times above the positive trace) to where I am now; is this scripture;

do not fear, for I am with you,
do not be afraid, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my victorious right hand.

Isaiah 41: 10

A dear friend of mine reminded me to let the One who loves me hold everything up for me. That encouragement has helped me in my process of surrendering and that eventually led me to my rest in trust of the Lord. There’re still heaps to figure out and many are graces that I need. I pray that sharing my story with you will give you a sense of awareness about MG and that you are also encouraged to live in your victory through your circumstances.

With lots of Love,
Irene