The Joy of the Lord is my Strength!

I could finally doze off once I received that scripture after a whole night of struggling with fear. It was Mother Mary’s birthday, 8 Sept 2021, we had our appointment cancelled in the last minute and we thought let’s still make the best of the day. I made the decision to happily finish my food despite struggling with difficulty in chewing (due to worsening of Myasthenia Gravis) for the past few days. As I sat down to have lunch, my mom called with the news that my younger brother had a stroke and was unconscious. That immediately sent me down the spiral of fear. I cried and started shivering the whole day through. We made preparation to get back to my brother as soon as possible.

The Joy of the Lord has indeed sustained me through this difficult time of losing my younger brother. The stress from this has also taken a deep toll on my health as my condition continue to worsen. As I try to make sense of the whole situation I came to realize fear was the main factor that may have triggered the thymoma in me which eventually led to MG. For that revelation, I am grateful. Balancing between regulating my emotions, taking care of my body, being present for my child and husband and at the same time fighting for my brother in prayer was quite exhausting. By the grace of God, he received the sacrament of baptism. Then on Saturday, a day we honor Mother Mary, my younger brother Bartholomew was called to eternal rest.

When the stroke happened on Mother Mary’s birthday, in the midst of chaos, a still small voice whispered hope in me. I could not put everything in perspective as there were just too much fear of losing my brother. On the day he passed, that gentle assurance came back. I knew Mother Mary is taking care of Bartholomew. When I found out that his funeral was going to be his birthday, 15 Sept, I knew without doubt he is in the safe care of Mother Mary. 15 Sept is the day we celebrate Our Lady of Sorrows.

Seeing his final resting face gave me so much of peace. He wore his signature smile and looked absolutely peaceful. With peace begins the grieving process. It is very raw at this moment and once again learning from my father’s passing, I encouraged everyone to grieve with gratitude. I certainly am going to do that. That process does not take away tears, rather grieving with gratitude elevate our praise of God. The loving memories become something we cherish. Healthy grieving is so important as part of our human experience.

We were best friends growing up and sometimes best fighting buddies too

God is seeding something in my heart – a desire to help people through an experience loss. Let’s see where this is leading. Dear friends, as you read this please pray for the soul of my younger brother, Bartholomew and I pray that you are immensely blessed in your journey.

With lots of love,
Irene

Turning Misfortunes into Blessings

I used to be a person who proclaim certain ways of eating some food as being food crime. How could someone possible put rice on pizza? Or what a strange way to eat chips with ice cream! There were heaps of comments that I would make as I was a picky eater. Then the ultimate funny thing happen when I actually started liking the very food crimes I used to judge. It started when I ran out of ingredients to cook the conventional way. What’s the best next option in that case? Creativity kicked in and I started experimenting making food in ways that was crime for me. Those turned out to be the most fun experience as I managed to turn a challenge into a blessing.

Seeming misfortunes happen all the time because our plans do not always turn out the way we want it. The matter here is our response towards those incidences. Some are small matter that can be easily turned into something good and some are heavier stuffs that need time and space to make sense of. Big stuff like the diagnosis of Myasthenia Gravis for me was not a pleasant thing that happened. I certainly did not choose that misfortune. However, I have the power to choose my response to move forward to make this a meaningful season in my life.

The experience of making the best of the worst that happened reminded of the song, This is How We Overcome. It says: “You have turned my mourning into dancing, You have turned my sorrow into joy”. Such powerful way of turning the worst scenarios into a blessing – turning to God almighty for help. Even your deepest hurt can be turned into a gift to the world. That brought me to a principle I learnt in prayer school that says: “Your deepest hurt becomes the launching pad of your greatest calling”. More often than not, this is hard to comprehend as deep wounds like childhood trauma often scars people deeply. So much so that some chose the destructive path.

Tragic childhood trauma like an abuse is indeed very detrimental to the person. It confused the child and sent wrong messages to the child which in turn destroyed the true identity of the child. It takes a lot of work and heaps of courage in the part of the victim to rise up to victory – reclaiming their true identity as a beloved child of God. We know for a fact that none of us are immune to trauma whether inflicted by a trusted person, teachers, schoolmates etc. Treating ourselves with great compassion and taking the courageous path of healing with trusted companions have proven to be a path towards great victory. Putting these misfortunes in its right place bring out blessings that would otherwise be hidden.

In my current season of immersion in Positive Intelligence (PQ), I see a connection to this concept. The author of the book, Shirzad Chamine shared his childhood wounds were indeed blessings in disguise. It took him heaps of work to be where he is today, a deeply compassionate person who is directly blessing me with this programme. The inspirations drawn from this program is beyond what I imagined. Being an active gift and opportunities seeker in all circumstances is a powerful gift to self and the world we live in.

Dear friends, what are you facing today? I pray that you are given the grace to turn EVERY circumstances into a blessing. My father’s death which was a tragic event has taught me so much about life precisely because I choose to grieve with gratitude. This blog is one of the beautiful fruit coming out of that season of grieving. Be encouraged dear friends to be conqueror that is capable to tap in the grace of God – turning misfortunes into blessings. In the event that you need some help in getting there, feel free to contact me for coaching information.

May you be blessed!

With lots of love,
Irene

For the Love of Food

Food is a great means of unity, celebration, expression of love, reconciliation, happiness and heaps of other things. For me food is my source of creativity. I am a person who refers to recipe and method but never really follow the exact measurement or method. Most of the time, I prefer to modify the recipe to suit my taste, the needs of my family as well as availability of ingredients.

Recently I felt inspired to try steaming fish the way restaurants did. It was a pleasant learning experience because in the past, I could not be bothered doing a few steps process. I like things simple and easy. However, my past way of steaming fish never produce truly satisfactory taste. With the newfound knowledge, I immediately hooked on to the method and started creating all sort of sauces for steamed fish. It was such fun experiments and I look forward to Fishful Friday just so I can create new dishes every week.

Creating food being therapeutic has been a great help especially when changing diet is a neccesity due to the autoimmune diagnosis. Eating healthy can be tasty and enjoyable. All that is needed is a dash of creativity.

I recently came to realise what a great gift is this expression of creativity. It was a difficult morning and I was starting to beat myself up for not being a perfect parent. I knew “being a perfect parent” is a lie, I had that intercepted so those negative emotions did not drag me further. As I was trying (and struggling) to gain better perspective, I decided to create a new dessert for dinner. It resembles milk pudding from my hometown but I have never been able to get any recipe. So with a little bit of imagination of the taste I began my experiment. Praise God it turned out well.

The effect of that 20 minutes of creativity was beyond just yummy dessert, I was able to clear my mind and start seeing things from a better perspective. I was able to show empathy towards myself and to express my loving concern towards my child. My level of happiness increased so was my overall wellness.

I recalled my days in the mission centre where celebration of life was emphasized. We will work together to create a beautiful atmosphere for celebration. The most elaborated one would be an Agape Meal that typically involved good food, well decorated room, well dressed people and heaps of honouring – a setting that enabled expression of creativity in so many ways. I remember having fun cooking, baking and sometimes trying things like decorating and flower arrangement. That kind of excellence has become my lifestyle though not as elaborated. We recently celebrated my husband’s birthday and it happened to be a Friday. I was jumping with joy as that was an opportunity to express myself creatively. I steamed a large fish and made a marble milk pudding as the “cake”. It was a joyous occasion filled with love.

Some of my food creation

The experience of having my mind cleared and filling my love tank through creative expression has demonstrated to me its importance. Creative outlet does something great to our being. It helps us to connect deeply to our true self and hence enable us to appreciate the being who’s made in the image and likeness of God. The direct impact is the release of stress and clarity of mind. In our fear saturated and highly stressed out world, creative expression becomes a remedy to bring us some sanity.

Dear friends, I pray that you are encouraged to make time for creativity, however you like to express it. May you find joy in the little things in life that fill up your love tank. Make sure you also empty your stress tank regularly. Have fun expressing yourself creatively.

With lots of love,
Irene

Celebrating Progress

I recently learnt that healing is circular instead of linear; that was quite astounding for me. There’s great encouragement and wisdom in that school of thought. I found myself experiencing setbacks in the midst of progress periodically. Those moments can be discouraging but when seen through the lens of a circular healing journey, it’s quiet empowering. Setbacks just meant it’s time to take a pit stop and evaluate. It becomes a circle of learning more of myself and the condition. With every circle of learning, I also come to appreciate myself and the whole journey more deeply.

In an older post, I elaborated the importance of celebration. Living celebration through my healing journey from Myasthenia Gravis (MG) has been a great experience of affirmation. We started celebrating from the moment we’ve got a confirmed diagnosis as we finally knew what we are up against. When I was discharged, we celebrated with a good meal. I remember vividly how nervous was I when I finally started driving again. Thanks to the lockdown, the option at that time was me driving out to collect donations of expressed breast milk (EBM) for my child. We were blessed to have generous donors who helped us through those early months of fully breastfeeding our child. I knew my limit very well at that time, so there were great planning involved – with full gears of sunglasses and hat plus praying really hard for an overcast morning. I came back within an hour with new supply for the baby and feeling victorious. We celebrated that big time as it was real progress and such a great milestone.

Then came the time when I started on the steroid dose reduction, it was a happy day and great celebration. After a few months and was almost off steroid, I started having regression. It was quite discouraging but I did not allow that to stop me. Pushing through with a good mindset and a strong network. I was still experiencing a fair bit of symptoms back in Dec 2020 but we decided that my birthday is a good day to celebrate. Every initial disappointment after the doctor’s visit was being treated as an opportunity to find a better remedy for me.

Having friends that introduced various natural remedies to me is a true blessing. I am glad people are open and they know me well enough to be confident that I take responsibility for my decision whether to try the remedies they introduced or not. The values that I believe in and live by has also been a navigating post for me. I cannot imagine missing out on good remedies just because of being a scary blamer that absolutely nobody dare to recommend anything. Being daring to try stuffs (some of which did not work) is certainly something worth celebrating.

Celebrating progress keeps us going and it makes the journey pleasant. Dear friends, I encourage you to be creative in your celebration keeping in mind that this is not just a reward system. Celebrating yourself is directly celebrating the One who made you. Think about it, who gave you the grace to see goodness in the midst of darkness? Who enable you to work through your issues? Who is the happiest when you are happy? My answer to those questions: none other than God. I wish you a great time honoring your Creator by celebrating you.

With lots of love,
Irene

Healthy Mindset Makes Healing a Great Journey

A very important but seldom talked about element when it comes to bodily healing is mental health. We are a whole being, therefore mental health is vital for any healing journey. It was clear to me one of the biggest aggravator of Myasthenia Gravis (MG) in me was chronic unmanaged stress. Hence managing stress and regulating my emotions became a primary goal. I learnt to let go of a lot of unnecessary worries, grudges and heaps of things not in my control. I began to set better priorities and strengthen my boundaries all the while learning to live with MG as well as learning to mother.

What helped me to stay on the course was an overall healthy mindset. I am determined to beat MG and thrive in my life. I know well the reality may be difficult at times, not denying it in a bit. It was tempting to get into a pity party when symptoms hit hard. In all honesty, symptoms are discouraging and hard to live with. I felt like I want to get over and done with it fast whenever it hit me. However, there’s a hard reality that my body needed the time and conducive environment to heal. So, bouncing between “yes, I got this” to “I just want to give up” were common occurance especially in the beginning. I am so blessed to be surrounded by people who support me in this journey, constantly reminding me who I truly am.

Those reminders were fuel for me. Every time I felt beaten, I face the giant instead of running away from it. I allow myself to acknowledge how I felt and also decide not to stay in that low state for too long. How do I rise above the feeling of defeat? – that has been a question I asked myself over and over again. Friends, this is where it is so important to have someone (or a few people) you trust that you can share your life with. I have a few people that I share deeply with; just being able to talk to someone who love you for who you are, is healing. It would be extra awesome if the one you share with is able to just listen and ask you meaningful question. Effective questioning practiced by coaches has power to unlock certain perspectives that would otherwise be blind to us.

In our fast paced world, so many of us lack the time to even be present to ourselves. Some of us due to childhood trauma may not even know how to regulate our emotions. When I was on the peak of taking steroid as a means of MG disease control, my emotions were so messed up. I cried for small matters and it was hard to even regulate my emotions properly. Thank God my husband was really understanding and supported me through those tough times. This is where having some tools in hand would be helpful. When we feel a certain uneasy emotion, it is important to take a pause. A simple way that I practice is to first name the emotion, then ask Jesus how would I like Him to minister to me at that moment?. These kind of pauses helped me to calm down. With a calm mind, then I can tackle the source of those uneasy emotions. From then praise will rise. In the same way, I think it is also good to take a pause when good emotion arises – just taking time to thank God for the blessings and share that moment with Him. I am pretty sure God loves celebrating with us.

Whatever journey we are on, the path would sometimes be smooth and sometimes there are potholes on the road. Whether it be a nicely paved road or some bits where we are met with holes, always remember to look up – I bet the view is beautiful. Dear friends, I wish you a great adventure in your journey. If you find it particularly hard at this moment of your journey, reach out to someone – a family member, a true friend, a coach or a counsellor. Please share your life in all sincerity because it is normal to want to be known by someone. Indeed it is very good for our mental and overall health if we are able to allow ourselves to be truly seen and heard. I leave you with this quote and pray that you are blessed in your journey.

With lots of love,
Irene

Self Responsibility and Healing

One common outcome I observed from coaching is the client’s shift from chaos to ownership of their actions. This eventually lead to a happier life as they embody a lifestyle that empowers them to self responsibility. They no longer see the surroundings as disadvantaging them, rather they are empowered to take the responsibility for the actions towards their wellbeing. In other word, self ownership is a major step towards meaning in life. When it comes to my healing journey, self ownership plays an important role for me – it shifts my perspective and energy towards the important and necessary. When I first got the diagnosis of Myasthenia Gravis (MG), the question I asked myself was: “what needs to happen to give me the best chance to beat this?”.

That question was the beginning of a creative journey of exploring my options. I left the hospital with prescription medicines, some advice on managing the symptoms with the prescriptions and nothing else. Lifestyle change, diet and management of stress was never mentioned. Thank God I have people who were experienced in managing other autoimmune with diet who immediately suggested that I research on the right diet. From our observation, autoimmune seems to be triggered by chronic stress, environmental change and sudden diet change. So, that became the first point of research.

There were so many articles and so little information about healing MG naturally. So a lot of decision were made based on the little knowledge we can garner. The first step was making a change in diet. My best decision was to cut down on sugar and carb. About 9 months afterwards I was so grateful I made that change. Turned out one of the side of effect of steroid is insulin insensitivity. My blood sugar was on a rising trend though still within limit. When we saw the trend, my doctor then asked me to cut down on sugar and carb. Imagine if I did not make that move earlier on! It also help as sugar worsen the symptoms for me, so it’s easier to say no.

Apart from diet I also explore the option of natural remedies that would support the healing process. MG is so rare that I never hear testimonies of any products that helped. I came across products that helped other autoimmune diseases and was very keen to try. Everybody asked me to consult my neurologist before trying anything out which is a safe move and I thank God my doctor is a very open minded and respectful person. When I brought the idea of trying the herbs out, his response was so encouraging. He told me he has no experience and the only way to find out is to try it out. If it doesn’t work, just stop it. I shared this experience with a friend of mine who is healing from another autoimmune disorder, his response was: “good on you, your doctor is very open minded and supportive”.

That is the right patient and doctor relationship. I recently came across so many instances where the opposite was true. It is utterly unacceptable that some doctors telling the patient to either listen to him/her or go home and die when the patient raised some concern. This is where we need to draw the line as patients. Something important to bear in mind is that your physician is responsible to help you co-manage your disease and you are responsible for your own well being and health. Get this, your attending physician is your hired hand, they work for you not the other way round. They are hired to provide professional opinions but it is still up to you to accept it or not. That’s why when things doesn’t feel intuitively right, it’s wise to seek second opinion. After all, informed consent of procedures and prescription drugs is the right of every patient.

Hence it is very important to NOT place your doctor as your ultimate health authority. They are also human and they like us can also make mistakes. Remember that God is your highest authority, with that set right you’ll discover great freedom in within you to listen to your body and you’ll also find creative ways to honor your God given body that has an amazing ability to heal with the right condition.

Some of us may have heard stories of people given the diagnosis of cancer and was given a “death sentence” by their physician who say that they only have a short period to live and the person really die at the predicted date. We know that death and life are in the power of the tongue (Proverbs 18: 21), hence that makes it even more important to know God is your authority. I was told I have a malfunctioned immune system at the beginning of the diagnosis but my immediate reaction was: “No, that’s not the truth and I refuse to believe that”. I said a prayer breaking those words and bless my body instead. I proclaimed to me that my immune system needed time to heal. This gave me great inner strength especially on difficult days that I could not even hold my eyes open for 10 seconds. Through the difficulties I still believe my body is amazing and has powerful ability to heal itself.

Another important responsibility of a person on the healing journey is to ALWAYS do your research and keep learning about the condition. Absolutely no one on this earth knows everything, even so called experts do not know it all. You are supposed to be the one who knows your body best. Unfortunately for some of us (myself included), we can be quite disconnected. When our body show us a symptom, our modern attitude would likely look for ways to suppress the symptoms like popping paracetamol whenever there’s a headache without even stopping to think if our body is trying to tell us something. Taking the symptoms seriously can help us to navigate our healing journey. Whenever the symptoms improved or worsen, I asked the question: what has been done differently? I go into all investigative mode just to make things a little fun for myself. That would give me a good way forward on what to continue or what to avoid.

Continuous education and openness to try different things has led me to a season of great progress in healing. I learnt to be patient with myself as most natural healing remedies take time and there bound to be some progress and some regress. That has been my experience with Terahertz treated water. I was initially drawn due to a lecture that pointed out our healthy cells vibrational resonance that is similar to the treated water, hence that would slowly promote healing with effective hydration. I tried it because it made sense to me and I took full responsibility in doing so and praise be to God I’ve been responding well to most of the remedies I tried.

It is really empowering to be more in tune with my own body especially when I can tell what works and what don’t. I did not choose to be sick but I chose to get the most out of my season of healing and celebrating every step of the way. Every medication weaned off is a great cause to celebrate. Every improvement on my eyelids strength when I drive is a great occasion to offer highest praise to God. I refuse to own the disease but I am owning every bit of my healing journey.

Dearest friends, have you stopped to think how in tune are you with your body? Do you agree that bodily health gives us the freedom to live out our calling more fully? Be encouraged therefore to take ownership of what you do with your body. Take time to read labels of food ingredients and discern well what you allow into your body, medication included. I pray for a great healing journey as well as a blessed journey of self discovery. Most importantly trust your God given body because your Creator designs well. May you be blessed.

With lots of love,
Irene

From Fear to Fullness of Life

Teal is the color representing Myasthenia Gravis

June is the month dedicated to the awareness of Myasthenia Gravis (MG) and it has become really close to my heart being on my journey of healing from Myasthenia Gravis. Yes I know the general consensus said that the condition has no cure but I choose to trust in my body’s ability to heal. MG thrivers are sometimes called snowflake warriors for the fact that every case is unique. That pose a challenge of its own as there is no certainty or a good pattern as reference. I have taken the path of looking at my unique condition as an opportunity to experience fullness of life in ways I would not have explored otherwise.

When I was given the diagnosis in Feb 2020, my world was an utter chaos. There were so many things that I needed to consider and to take care of, all at the same time giving myself the best chance to beat this. Not only my world was chaotic, the world around me turned into a real chaos with the lockdown and restrictions started to affect our lives shortly after I was discharged from the hospital. The looming fear at that point of time was intense and I can feel it in the atmosphere. If anything you need to know about autoimmunity, extreme stress is very bad for any autoimmune condition. Mine was triggered by a prolonged period of unmanaged stress plus sudden change of environment. It is also known that people who are immunosuppressed like myself are categorized as being high risk of viral infection. So it was natural of me of being fearful.

I was just beginning to navigate life with a chronic condition and then this virus chaos came about. Fear was all over the place and I was not spared from it. Fear causes stress that worsen my condition and it’s very easy to see how bad it affect me. So I made a conscious decision since being out of the hospital to manage my stress well. This fear business took a toll on me as almost everyone around me were fear filled about the virus. I reached the tipping point real quickly and decided that fear is no way of living. It was sucking life out of me and I did not like it. In my desperation for life literally, I called upon the name of Jesus and asked Him; what should I do? How do I live?

Let your faith be bigger than your fear!”

That was all I heard and that was enough to propel me forward. The first strategy of winning a battle is to know the enemy and that’s where I started – naming my fear. It was not hard to name them as the first and biggest one that came out was the fear of death. I feared death after escaping death not too long ago. I feared that an infection may kill me because at that point of time I was swallowing 20 tablets daily; a majority of which were immunosuppressive drugs. That would made me really vulnerable. Nailing this fear to the cross and charging forward in life with faith was my experience of saving grace. I have confidence and courage that I will live and thrive. Proper precaution taken, the rest is trust and choosing to live in joy. After all, my health is my responsibility, I personally think it is unfair to put my health risk as a burden for the rest of the society. Praise be to God for His protection; all through this year of healing I have regained strength and is rarely sick.

Putting fear in perspective is an important element in moving forward. The way to do that is to seek the truth about the specific situation. We know that the truth will set us free although it is likely to be uncomfortable. Let’s look at some comparison: if you catch a cold, you know that the chance of you recovering and healing is more than 99%. With that knowledge, fear is by logic small in comparison. The inconvenience of being unable to function optimally for a few days that may bother you more than the fear of death. In my situation with MG, nothing was certain. When I was administered with the rescue medication, there was no guarantee that it will work on me, we hope I respond which I did (with no side effects). Same with the maintenance medication, we can only hope I respond, which I also did until we adjusted the dose. When I asked if a remission is possible, the answer I got was “I can’t tell you for sure because MG is so variable. Some patients get into remission and it came back again, some get into permanent remission and some never get into remission”.

With such variability and uncertainty, it was very easy to despair and let fear grip over my life. But I knew this very clearly, fear perpetuate stress and stress worsen the symptoms. Given the situation, although saddened, I made the choice to live in hope. If some people get into a permanent remission, I shall be one of them. The choice I made to live in the fullness of hope and life carved my way forward. I took actions that would give me the best chance to get to the remission. A massive change in lifestyle was required – diet, habits, routine etc. It was a sharp learning curve to be in tuned with my body again. I realized how brainwashed I was! And that was uncomfortable! One great thing coming out of this healing journey is the deepening of my empathy towards myself as well as to others especially those who could not see a way forward in a fear saturated world.

Being able to face my fears with the truth and knowledge in hand and then move forward in faith has been a great blessing. I live in freedom precisely because I never allow the disease to define who I am. I admit it is not the easiest of journey and fear does creep in from time to time. I allow my self to process the fear and then to formulate the way forward with my Saviour. All this is possible thanks to my years as a coach and also those years in ministering to people as well as support from my inner circle.

Fear is a constant companion whether we like it or not. Some are necessary like in the case of meeting a tiger, you better let your fear propel you run for your life. I would say most fear we face today are opportunities if we allow them to. Dear friends, if you are having difficulty in navigating fear and are feeling stuck, do feel free to reach out to me. I run my own coaching practice and I can also recommend other coaches or counsellors to you. Know that it is my prayer for you to be well. Fear does not have the final say and it is possible to live victoriously. May you be blessed!

With lots of love,
Irene

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

The Sorrowful Face of Christ

Image source: pxfuel.com

Many of us would agree that the year 2020 has been a real mixed bag on high speed. Everyone is affected in one way or another. It has been really heartbreaking to see people losing their livelihood and my biggest personal heartache is the lost of communal worship. It’s really complicated and the complication somehow pushed me to a book on my shelf – Consoling the Heart of Jesus by Fr. Michael Gaitley.

I was desperate and how blessed am I, due to that desperation. Given my daily rhythm with an active toddler, I did the retreat very slowly. One small chunk daily with the time I squeezed in during my daughter’s nap. The grace I received has been so abundant and I am just living in gratitude daily.

My daily connection with Jesus has been really rich ever since my DIY retreat. As the title suggests, consoling the heart of Christ becomes my daily “work”. I just come to the suffering Christ as I am in all my being – the mixed bag of my virtues and vices; offering him my little bit of presence as His friend. This in turn raised me up to praise His goodness.

So this particular December day was a tough one. My symptoms worsened and things were just not how I planned it. I was frustrated! Somehow grace comes flowing while I was nursing my child. I was sort of forced to stop with everything and just pray. And then there I went again, complaining instead of consoling but somehow grace overshadowed me. I decided to just be still and gaze upon the wounded and suffering Jesus. As I gazed on, I saw a pattern in me that needed redemption.

The pattern of my complain was an accusative one – my accusation that God did not answer my prayer. It has been a struggle of mine for a long time. Instead of judging me, Jesus brought me to the reality of His “neediness” – wounded, scarred and in need of a friend. I was quite struck by that image. That in turn brought me back to Feb 2020 when I was first diagnosed with Myasthenia Gravis (MG). After being discharged from the hospital, I created a fund raising page with an intention to create awareness mainly because prior to my diagnosis, I have never heard of MG. I gave a face to MG and at that point of time, it was also very important to raise enough money and to raise more awareness about this autoimmunity. I wasn’t thinking much back then or rather I did not have much capacity to think at that time.

During that grace filled time of prayer, Christ showed me what kind of face was I wearing back when I was first diagnosed – a needy face and probably quite sorrowful too. I was in need and I did not hesitate to reach out for help. I see the generous face of Christ in the people who supported me financially and through prayer. Little did I know back then, I was also a face of Christ – the needy and poor face of Christ. It was like scales came off my eyes and I felt humbled.

My mighty able self does not like to be needy, always prefer to give than to receive. Bu here’s a reality: there will be no giver if no one is willing to receive. Jesus humbled me to my knees and I realized that I have never wanted or like being a sorrowful and needy face. I also do not enjoy being needed, which is such a big lesson after the birth of my child. Now I am given the grace to embrace being needed and being needy with healthy limits.

Being the needy sorrowful face of Christ is also a beautiful face of Christ, a face to be desired. Sharing this reflection with a dear sister of mine led me to realise something deeper. Have you ever wonder why we have an affinity towards helping the poor? In the past helping the poor gives me a mood boost, always leaving feeling better after an outreach to a poor village. But deeper than that, our conversation left an even more profound reason – the poor face of Christ is the touchable and reachable face of Christ. I acknowledge that our preachers and community leaders are also faces of Christ but sometimes they are not reachable or touchable. I remember a sharing from a friend about his community leaders who are an amazing couple but being the leaders, my friend felt at that time, it was so hard to even talk to them. He literally felt they were high up there, too good to touch although that was not be the case. This revelation left us both so deeply encouraged. I am so grateful for the this beautiful lesson the Sorrowful Face of Christ taught me.

Dear friends, oftentime we are called to be both the Loving and Giver Face of Christ as well as the Needy and Sorrowful Face of Christ. Both are to be desired! Whichever we are called to at any season, I pray that we are given grace to carry that face lovingly. May you enjoy being the ambassador of Christ.

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