I have what?!

The gem cannot be polished without friction, nor man perfected without trials.   ~  Chinese proverb

Being diagnosed with an incurable disease that can be potentially life-threatening is like having the rug pulled out from under you, while you are carrying a cake--a giant chocolate cake with candles and sprinkles and fudge frosting. You fall down flat on your back and the cake falls on your face, and your life will never be the same.

My story began a little over six months ago. I was polishing our wooden floor, sliding my foot vigorously forward and backward while stepping on a rag soaked with a liquid floor cleaner. It was Christmas Eve and I wanted to clean the house to get ready for Christmas dinner with family the next day. I must have overdid it, because I was breathless afterwards, and could not catch my breath the next day, or the day after that, for a full week. I went to see my doctor at the end of December, had a chest x-ray and blood work done, but she could not find out anything wrong, and even suggested that it may be an allergic reaction to the liquid floor cleaner. There were no signs of pneumonia, no wheezing, no fever or any other signs of an infection. I went home with a prescription for an asthma inhaler, but it did not help me breathe any better. Somehow I knew this was nothing like my previous asthma attacks, which I have not had for years. This felt like more like I could not pull my diaphragm deep enough for a full breath. I could not yawn, I could not cough, I could not even blow my nose properly, and my breathing became worse if I slept on my back. It was totally weird. But life went on, and my breathing somehow improved, or I became used to it. My family and I even went on a road trip to see snowy mountains in the countryside.

Then New Year came, and I was noticing more strange things happening to me. The day after New Year, I suddenly could not smile. My smile was lopsided. Looking in the mirror, I saw that right side of my face, although not exactly drooping, just did not match my left side. Was I having a stroke? I also noticed that I started to slur my speech, as if one nostril was closing up inside and I started talking like I was holding the top of my nose just below the bridge. What is going on? Suspecting stroke, I quickly told my husband and we packed up the kids and went to the nearest ER. But I was not having a stroke. The doctor instead diagnosed me with Bell's Palsy, a temporary paralysis of the face caused by a viral infection. I was prescribed Prednisone and I went home.

But my smile stayed lopsided, and two weeks later, my breathing became shallow and difficult again. I went back to see my regular doctor. She was still puzzled, and ordered additional lab blood work done. My blood pressure was also elevated so she prescribed hypertension drugs and again I was sent home. My blood analysis all turned out normal, so my doctor suspected that there could be a blood clot in my lungs. It was urgent for me to schedule a CT scan as soon as possible as this was a life-threatening condition. In the meantime, I noticed that I suddenly cannot swallow food. Food and even water would come shooting back up my throat. Eating was so hard that I would go to bed without eating some nights. Thinking it was an allergic reaction to the hypertension drugs, I stopped taking them.

Then my arm muscles started getting weak. In the evening, my arms would feel so heavy that I felt they were made of lead. Shampooing my hair has never felt so exhausting. My head would also feel so heavy, like a bowling ball. Strangely though, the heavy feeling would go away the next morning after a good night's sleep, well not so good with the shortness of breath. Fed up with my symptoms I went to see my regular doctor yet again, and while she still puzzled over me in the exam room, I was overcome with so much tiredness that I asked to lay down on her exam table. That's when my doctor suspected that this was a neurological disease, and she also decided I needed to go to the ER as soon as possible. She called 911.

A short ambulance ride later, I was in the ER of the nearest hospital, my worried husband and frightened children by my side. I was hooked to an IV, a vital signs monitor and an oxygen saturation finger monitor. My mother-in-law picked up our children to spend the night at her house and my husband, at the doctor's approval, went home to get clothes and toiletries for the night. While he was gone, I was taken by the nurses to the imaging department to get a CT scan of my chest. The CT scan went smoothly, but after the last of the imaging was done, I started exhibiting signs of an allergic reaction--a severe allergic reaction which I will learn later to be anaphalactic shock, due to the contrast dye that I was injected with. It would send me spiraling down to near respiratory-failure. The staff quickly wheeled me back to the trauma room while I was gasping for whatever air I could not get. I was blacking out, and I knew if I gave in I might never come back. The last thing that jolted me back to fight was the thought that I had not said a proper goodbye to my husband, my children and my loved ones. Leaving now while they were gone would be devastating to them and I would never forgive myself, even in the afterlife. I struggled to sit up, and although no words would come out, I somehow managed to say to the doctor and nurses, "Please don't let me die," and they assured me that they wouldn't. I was given an oxygen mask, called a bi-pap ventilator--and I let the machine breathe for me. Breathing through the bi-pap machine, and shot of antihistamines later, finally stabilized me. It was a close call. I wept through the mask.

I read in another person's blog that giving in to the call of death felt as easy and peaceful as letting go of a balloon string, but the call of motherhood was much louder and stronger. I would say it was exactly the same thing for me. I will be damned if I let my two children grow up without their mother. My husband then arrived and came running into the room at this point, having received a call from the ER doctor that I had an "episode", which I thought was a nicer way of saying I almost died. After what seemed like hours of waiting while I breathed through the machine, the doctors came back with their initial diagnosis. They told me that my CT scan is showing an enlarged thymus gland, a gland that sits on top of my heart, which points towards a condition called "myasthenia gravis", a rare, incurable but treatable, auto-immune neuromuscular disorder where my antibodies are mistakenly attacking the signals from my brain that tell certain muscles in my body to contract, namely, the breathing, swallowing, speaking, eye, arm and neck muscles. And I just very possibly went through a "myasthenic crisis". I have what?! Hearing the words "rare","incurable" and "myasthenia gravis" felt to me like it was coming from a dream, a nightmare, and it did not immediately sink in. In fact it has taken me months and another crisis for it to finally dawn on me and shake me to the core.The rug was pulled out from under my feet, and I had fallen flat on my back with the cake on my face. And so begins my journey of getting up on my feet and cleaning the frosting off my face, and living life with this strange, strange disease.

It has taken me months before deciding to write about what it is like with MG after I was diagnosed, because it has taken me months to begin the difficult process of acceptance--that this is my new life, my new normal and that I have no other choice but to make the best of it. I believe that writing will not only help me process through the many thoughts that go through my head these days, break down the recurring feelings of anxiety and worry, but it also be one of the many paths I can take towards self-healing. I see the world in a different light now, and I will write about these insights in my blog as often as I can. If I can just help educate one person about this disease, or comfort another who is suffering from MG like me or has a loved one who is afflicted, or inspire a person to donate towards finding a cure, and at the same time helping me heal and discover a deeper appreciation for life, then this blog will have served its purpose.

I am also a fighter. Writing will be one of my weapons in this battle. Bring it on.