LIVING WITH MYASTHENIA GRAVIS

The Book

In 2013, Kemi was diagnosed of a rare disease that causes severe muscle weakness; this disease affected all the muscles in her body just after she gave birth to her daughter, and it currently has no known cure.

This experience is the driving force behind this novel. Kemi’s dream is to give hope to people with diseases that currently have no known cure, and to those going through tough times. With a passion for motivating others to find their purpose, she shares her story for them to know that there is always a silver lining in the darkest cloud.

Disease is nothing new in life. It is often associated with pain, weakness and self-pity. It is a very sensitive topic that is not usually talked about.

There is a popular saying that “health is wealth”. Certainly when a person is in good health, that person has the ability to concentrate on getting wealthy.

However, having a disease changes your perspective of life. It is like an eye-opener, removing the veil from your eyes. It allows you to focus on what is more important in life. In essence, it allows you to better appreciate life.

Some people say, “experience is the best teacher”. If you have never been diagnosed of any disease, you can never understand how it feels to be sick. Now imagine being diagnosed of a disease that currently has no known cure, it is more difficult to understand the daily struggles associated with it.

This book recounts a real life experience of a young lady who was diagnosed of a rare disease known as “myasthenia gravis”. Myasthenia gravis simply means severe muscle weakness. The whole body is made up of muscles that enables us move and live, so imagine what happens when all the muscles in your body become weak and refuse to move. This is what happened to this young lady. Available literature about this disease shows that it affects a handful of people. Since it currently has no known cure, treatment is aimed at reducing the severity of the symptoms and preventing any possible crisis or fatality.

This book will take you on a journey through the most painful phase of her life. You will discover how the physical and spiritual aspects of her life interconnect, and how powerful the mind and positive thinking is. It will also let you know how important the support from family and friends is during such hard times.

As you read the book, you will travel on this journey with her; you will see how it all started and how she got diagnosed. You will also learn a bit about this rare disease so you have a better understanding of it. Then you will get to know about her struggles whilst on admission and how she tried to cope after being discharged home. Furthermore, you will get to see the impact her family and friends had on her recovery and life in general. Also, you get the opportunity to see the whole ordeal through the eyes of her loved ones. Most importantly, you will see the scriptures that have been her companion from the onset of this difficult phase, along with the declarations she made daily.

There are a number of people with diseases that currently have no known cure.
This is to let you know that you are not alone. I understand your struggles. You can still have a great life despite the unfortunate condition. You can still live life to the max and achieve your dreams. For people with loved ones battling with any disease, this is to let you know that your love and support is very important during this crucial phase of their lives. They may try to hide it from you, but it is difficult for them to cope, so try to show more empathy.

A friend put it perfectly when he said, “some scars cannot be seen but can only be told”. You will discover on this journey that there is always light at the end of the tunnel. There is always hope with life.

It does not matter the kind of card you are dealt in life…
With God, you can handle it!

Shortly before we left Ghana, I had been trying to conceive. However as soon as we arrived Canada, it finally happened. I had a positive home pregnancy test on September 10th 2012; the test strip showed that I was a little over three weeks pregnant. I was overjoyed. I was so excited to be an expectant mother because it was something I had longed for. How it would feel to hold my baby in my arms for the first time; this was just one of the things I longed for. Little did I know that this was going to be the beginning of a different kind of experience for me, an experience that would change my life forever.

I had my first antenatal visit on October 2nd 2012, and like most women in the beginning of pregnancy, I vomited excessively and lost appetite for food. I knew this was all part of the journey to motherhood. I was soon to experience more pain than I had ever known. I got so weak that I could hardly get out of bed, so I had to crawl to the bathroom or to the kitchen to get something small to eat.

As the months went by and my pregnancy progressed, I started to feel a bit better, the vomiting stopped and I was able to eat well and started gaining weight. I was so ready to welcome my little girl into the world, to shower her with all the love I was bursting to give.

During her birth however, there were some complications. I lost a lot of blood. While holding my baby, I remember thinking “is this how my life will end?” Then I passed out. I spent two days in the hospital during which time I received four units of blood.
I was glad to be home, to bond with my angel and to start a life with my family. A new life that will not just make us doctors but also parents. At that moment, I was happy.

The four weeks following the birth of my baby were a bit strange to me. I ended up at the hospital more times than I expected, and I had several tests carried out on me. This was not how I thought my life, as a new mom, would be. I was confused, sad and scared.

During all these, I had been losing weight uncontrollably and getting weaker and weaker by the day. I could not carry my baby. I had become so emaciated that I could hardly do anything for myself, eating and breathing had become too difficult. I was angry and could not pray. All I wanted was to close my eyes and it would have just all been a dream. I wanted to wake up from this nightmare, and I just wanted to be a wife, a mom, and a doctor.

Finally, in the fourth week, on May 27th 2013, I ended up at the emergency unit again at 11 a.m. because my condition had deteriorated. This time the doctors made up their minds to get a definitive diagnosis by employing all necessary means. They resorted to a more systematic approach. The cardiologists repeated the tests and my medication was changed again. The neurologist, after a very detailed history and examination at 8 p.m., finally made a diagnosis of MYASTHENIA GRAVIS, specifically a MYASTHENIC CRISIS. I was immediately admitted at the Intensive Care Unit (ICU) at the Royal University Hospital (RUH), Saskatoon.

I went through the following weeks in pain, with a lot of questions on my mind as to why this had to happen to me now. Through it all, I found myself again, found Christ again, found purpose, and found the freedom to live again.

ENDORSEMENT
FOREWORD
INTRODUCTION
CHAPTER 1: HOW IT ALL STARTED
CHAPTER 2: WHAT IS MYASTHENIA GRAVIS (MG)?
CHAPTER 3: THE EXPERIENCE
CHAPTER 4: DECISIONS! DECISIONS!
CHAPTER 5: THE HOME PHASE
CHAPTER 6:  MOVING BACK HOME
CHAPTER 7: THE REALITY OF THE CONDITION
CHAPTER 8: GOING DOWN MEMORY LANE
CHAPTER 9: MY SUPPORT SYSTEM
CHAPTER 10: LOOKING THROUGH MY FAMILY’S EYES
SCRIPTURES OF HOPE
MY FAITH CONFESSIONS

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