The Lotus Flower Within

"The lotus flower blooms most beautifully from the deepest and thickest mud." --Buddhist proverb

It has been a busy month for me since my last post, and for a refreshing change, it has mostly nothing to do with problems regarding my health. Instead, I have been doing almost normal things, the usual mom duties, entertaining visiting friends and family, celebrating my sons' birthdays, receiving home infusion therapy for my MG, and working on one art project after another by drawing and watercolor  painting.  

Since I have been sick and mostly home-bound, I have been trying to draw and paint in watercolor every day. Painting has become my meditation and my therapy. I become temporarily lost in my paintings, even if I only have a few minutes throughout the day which I can actually devote to it. Being a mom to a toddler and a teenager does not exactly allow enough time for me to work on a project from start to finish in one sitting. But I have become adept at sneaking in a few minutes here and there, usually while my younger son is taking a nap, or while the kids are out shopping with dad. Brush stroke by brush stroke, I manage to finish one painting after another. I am also finding that the more I paint, the better I actually feel. I am fully convinced that working on my art projects is helping me heal in mind, body and soul.

In this post, I will offer you a glimpse of how I work on a painting project. I just finished a small painting of a lotus flower for my mom. She has requested the lotus because I had painted one before
for someone else, and my mother wanted her own original piece. And since the lotus flower is rich in
 meaning and symbolism in Buddhism, Hinduism and Confucianism, it is the perfect subject and inspiration for this post, and for all of us. 

The lotus is born in mud. In Buddhism, we are like the lotus, in that we are all born in a world where there is much suffering, and like the lotus, which gloriously rises and blooms from the depths and murkiness of the mud from which it was nourished, so we too can become stronger from our suffering, learn from it, rise from it, achieve wisdom, enlightenment, spiritual rebirth and become one with Buddha. When going through our most difficult times, we must look to the lotus and remember that all our hardship helps create the magnificent lotus blooming within all of us.

So come and paint this lotus flower along with me, while we reflect on the lotus flower within.

You will need the following:

-watercolor paper, 140 lb cold press, 6"X6" size (Arches or Fabriano)

-pencil (HB or B)

-eraser

-photo of a lotus flower you want to draw and paint

-watercolor tubes (I recommend Winsor and Newton professional tubes in French Ultramarine Blue, New Gamboge, Quinacridone Magenta, Winsor Red, Hooker's Green, and Sepia)

-watercolor brushes (Da Vinci Cosmotop Spin Mix F brushes numbers 6, 8, 10 and 12)
-clean water in a heavy bowl
-plastic palette for mixing (I also use a ceramic saucer)
-clean hand towel (for blotting excess water from brushes)
-paper towels (for blotting stray paint and water from the paper) 

Note: Even if you are just a beginner, I highly recommend using the brands of paper, paints and watercolor brushes I specified above. They are pricier than others but painting in watercolor takes some time and a lot of practice to learn, and nothing beats using materials with superior quality from the beginning. Using inferior paints and brushes will make it more difficult to control the medium, in my opinion, and might turn you off from the process completely. 

Below is my usual set up. I paint standing up so that I can see directly down on the paper. By the way, if you're like me who likes to drink coffee or tea while painting, put your tea cup as far away as possible or on the opposite side of the water bowl you will use for cleaning brushes. I have dipped my brushes in my tea or coffee too many times in the past.

Step One

The first step is to find a drawing you would like to paint. It can be from any image or photograph
printed from the internet or cut from a magazine. Transfer the drawing using pencil onto the watercolor paper using gridlines--draw a gridline on the image and on your paper, and draw the image one square at a time. Erase the gridlines gently.

 

Step Two

Using brush number 8 or 10 dipped in water and Quinacridone Magenta (can you say that ten times really fast?), brush on the light colors of the petals first. Be mindful of where you want the light and shadows to go on your subject. Use more water on the brush for lighter areas, and less water for darker areas. I painted the center of the flower with New Gamboge (yellow) using brush number 6 and then the leaf pods with Hooker's Green and a hint of New Gamboge. Very important in watercolor painting: let each color dry completely before painting right next to it. Yes, this exercise is also a wonderful lesson in patience.

Step Three

I glazed the petals with more layers of Quinacridone Magenta, going from dark to light from the center of the flower outwards. I mixed a little French Ultramarine Blue to the magenta to paint the two bottom petals. This gives the flower the illusion of depth.

Step Four

Using brushes number 10 and 12, I glazed the upper and lower leaves in darker shades of green by adding more French Ultramarine Blue to the Hooker's Green. I also intentionally let drops of clean water fall on the wet paint, creating interesting texture to the leaves. These are what I call "happy accidents", letting the addition of water drops define the painting for you. It's another reminder that when we let go, good things can still happen.

Step Five

Using brush number 6, I added brown strokes to the core of the flower. I developed brown by mixing magenta, blue and yellow together until I got the right shade of brown I needed. Tip: It's always good to keep your palette limited to as few colors as possible, and develop your hues using combinations of the same main colors.This helps create a more harmonious piece, than using many different individual paint colors. I glazed the areas of pond water using a mixture of Sepia and French Ultramarine Blue.

Step Six

The final step is to paint the shadows under the petals using French Ultramarine Blue mixed with Quinacridone Magenta. Tip: The placing of the shadows need not be very accurate--in fact I don't recommend painting to copy  a photograph exactly. When painting the shadows, just mimic the shapes of the petals in general and call it good. Our eyes and our brain will do the rest of the work. I call it "seeing from your mind's eye and painting from the heart". 

I also touched up some of the leaves and shadows with more French Ultramarine Blue. Tip: Varying the shades of the leaves and petals add interesting drama to the painting. But keep hues very close in range.

Step Seven

Now let dry and frame it, hang it, exhibit it, sell it on ebay or etsy, or give it to a loved one.

I hope you enjoyed this quick art lesson. Remember too that there is no right or wrong in art. But keep practicing, see with your mind's eye, paint from the heart and most of all have fun.

P.S. By the way, I don't wear a beret when I paint and I don't even own one. I just thought it would look cute in my illustration. I do wear a floppy hat when I sketch outdoors and paint alfresco.

Namaste

My Favorite Smoothie

When friends and family visit me, I serve them my favorite smoothie made from berries and coconut water, which is so yummy that I am always asked for the recipe. So here it is--the smoothie I discovered by accident. I was about to toss overripe bananas into the garbage when I researched online what else I can make with them other than the usual fattening banana cake. This smoothie recipe is so simple, as I had illustrated below.

This is such a delicious, refreshing and most important, nutritious smoothie that is so easy to make and I drink it everyday. Since then I noticed that I have more energy, my blood pressure stays low and I have even lost a few pounds. It is great for people with MG, but I think it is just as awesome for everyone else. Because the fruits are frozen, there is no need to use ice. Make sure the fruits are ripe before freezing them. This way, you will not need to use sugar. All ingredients are good for the body, and you should just trust me and stop reading here now and go to the grocery store and stock up. But if you really must know, here is a breakdown of the ingredients and their most important health benefits.

Bananas
- rich in potassium, which protects against heart attack, hypertension and stroke; increases alertness
- has high levels of tryptophan, which is converted to serotonin and helps overcome depression
- anti-inflammatory, protects against type-II diabetes
- relieves digestive problems including diarrhea, constipation, acid reflux, ulcers
- lowers body temperature during a fever
- helps speed recovery from nicotine withdrawal

Strawberries
- anti-inflammatory, anti-oxidant
- helps lower risk of heart disease, helps lower blood pressure
- helps burn stored fat
- promotes bone health, eye health, strong hair and nails

Blueberries
- anti-inflammatory, anti-oxidant
- promotes healthy bones
- helps lower blood pressure, helps lower cholesterol
- helps improve blood sugar
- helps promote short-term memory
- aids weight loss
- fights wrinkles

Raspberries
- anti-inflammatory, anti-oxidant
- helps lower risk of heart disease, helps lower blood pressure
- aids weight loss
- promotes bone health, eye health
- alleviates arthritis

Coconut water
- high in potassium, helps protect against heart disease, lowers blood pressure

Flaxseed
- helps reduce risk of heart disease, stroke, diabetes and cancer
- aids weight loss
- anti-inflammatory
- helps lower cholesterol

Now go, buy, freeze, blend and drink up. Cheers!

The Queen of Jupiter

"You yourself, as much as anybody in the entire universe, deserve your love & affection." ~Buddha

 I have written extensively about my experiences since being diagnosed with myasthenia gravis, including my stints at the hospital, but I have yet to write about what it is like to live day to day with this disease. As I had described in my previous posts, MG is an autoimmune disease where abnormal antibodies are mistakenly attacking the signals in the nervous system that are responsible for moving voluntary contracting muscles. The disease varies from person to person. Some have ocular myasthenia, which prodiminantly affects facial muscles only, with symptoms such as droopy eyelids, double vision, lopsided smile, and impaired swallowing. My disease is generalized myasthenia, which affects not only facial muscles but also respiratory muscles. In both variants of the disease, however, there is also unusual fatigue, lack of energy and weakness in the arms, legs and neck muscles. It is as if our arms, legs and our head are being pulled down by invisible weights, similar to the weighted belts and similar contraptions athletes wear to strengthen their bodies while training, so that when the athletes finally remove the weights they can defy gravity and jump like a gazelle, or run like a cheeta. In people with MG, the weights only become lighter with rest and medication.

Our energy waxes and wanes throughout the day, even if we get a full eight hours of sleep at night. Simple tasks can be tiring, even talking, so we tend to plan more strenuous activities during the time of day when we are at our strongest. Emotional stress, physical exertion, extreme temperatures, viral and bacterial infections, and even bug bites can bring about exacerbation or flares, and severe exacerbation, where respiratory muscles are impaired, is called a myasthenic crisis, and usually lands us in the hospital. 

The most unusual and often frustrating thing is that people cannot tell we are sick just by looking at us, and the disease is so rare that not many people have heard about it, let alone spell it, including many healthcare and emergency responders like paramedics, police, and fire fighters. Weakness can be misinterpreted as being drunk or intoxicated, which is why I have avoided driving since I was diagnosed with MG. 

There are no known causes of MG or why they come about when they do--which is sudden and without warning--and there is no cure for it at the moment. The removal of the thymus gland through surgery may help MG sufferers improve or even go into temporary or complete remission, but there are still a few, about a third of us, whose symptoms will not improve and even get worse in our lifetime. Current medications only treat symptoms, and many medications have unpleasant side effects, including puffy or moon face, shaky hands, insomnia, dizziness, osteoporosis, malaise (general feeling of being sick) or develop kidney and liver problems, like diabetes. The few treatments that do work, like plasmapheresis or IVIG immunoglobulin therapy are so expensive that insurance companies only approve them for emergency life-threatening cases, and often deny their use as preventative maintenance measures. These treatments also only provide relief for a few months only.

So what is someone like me to do, faced with all the challenges of this disease? The way I see it, it is quite simple. I only have two choices--either I let this disease take over not only my body, but my mind and my spirit, only exist from day to day, being pumped with medication so I can at least function--which is not like being alive at all, or....I can choose the opposite. Putting it that way, I see that there really is no choice but the latter--like millions of other people facing their own life challenges, whether it is disease, poverty, loneliness, drugs, or even war--to live life fearlessly, to transcend this illness, to face it with dignity. I choose to live my life with MG as a queen...the Queen of Jupiter.

Okay, she's gone nuts, probably on way too much medication, you might be thinking. And that might be true as well, since I have heard of people taking similar medications as mine exhibit mild psychotic behavior, like one woman who ripped her wallpaper off while on medication and painted her walls a hot shade of pink (well, wallpaper is depressing anyway, I think). But the point is, I also know that if I can find a way to cope with my illness by thinking I am a queen, specifically the Queen of Jupiter, as long as my kingdom exists only in my imagination, then what harm can I do? 

But why a queen? Since this illness is very rare, only 14 people out of 100,000 gets it on average according to the Mayo Clinic, then its rarity puts me automatically in royalty status, in my opinion. I declare and crown myself a queen, that is, among a super tiny minority---and who will dare object to this? We are such a small number that each of us can have a kingdom in our own little corner of the world and still not get in each other's way. That's how rare and special we are. And I would definitely rather be a queen than a princess. A princess almost always needs saving. Queens have it all handled and under control.

But why Jupiter? Well Jupiter has a gravitational pull that equals 2.53 times that of earth, which is exactly how my arms, legs and neck feel when fatigue sets in, and that time is usually just before I need to take my medication, or right now, that's every six hours. But I can also think of it as my diamond tiara just getting a little too heavy, my golden scepter just feeling more like a dumbbell, and my ruby bracelets getting a tad too burdensome as the day unfolds. So I just need to take them all off and rest my royal body in my golden four-poster canopied bed and take a royal nap--in fact, many royal naps, as many as three or four times during the day. I am queen after all. I should be entitled to as many naps as I want (yawn).

Because I am queen, my time is precious, and I should plan my days in advance, saying yes to only very important events, like weddings and birthday parties for very important people like grandmothers, best friends, spouse and children, and decline others, like anniversary sales at Nordstrom, Pirate parades during Seafair in downtown or monster truck rallies. And since I now only have half the energy of an average person in a day, I must learn to prioritize my work, which should be on important activities like reading to my child, cooking a delicious meal or finishing a really good book. The same goes for keeping my home easy to care for and clean, so that it will always look like a palace with minimal effort. I should not be afraid to enlist the help of my family and other willing royal subjects and even neighboring allies to help me perform the duties of keeping our palace tidy. 

My closet should reflect my new discriminating taste. It should only behold a few but refined clothes that are simple yet elegant and timeless. I should refrain from amassing hordes of fleeting fashion accessories, like handbags, shoes, and jewelry. My diamond tiara, golden scepter and jeweled bracelets are more than enough bling to get me by. They may be invisible to others, but they are very real and heavy enough for me.

When it comes to eating, I should only dine on the finest food fit for a queen--the freshest fruit and vegetables, the purest grains, meat, poultry and fish, free of pesticides, steroids, antibiotics and other chemicals that may be toxic to my royal body. I should just be drinking the cleanest water and the purest types of tea. Gone are the days of mindlessly devouring a whole bag of Kitkats and Cheetos, kept in secret stashes behind innocent boxes of quinoa and gluten-free cereal in the pantry. No more ordering Grande Double Caramel Macchiattos with whipped cream, just because it sounded terribly fun and exotic and made people who order Americanos roll their eyes. Looking back now, it puts me in deep shame just thinking of how all that junk was ruining my royal body.

As queen, I should also avoid polluting my royal mind with trash television, worthless websites and boring books. Life is too short to waste the mind on useless endeavors. Instead, I should develop my talents--in art, writing, and culinary disciplines, read books that expand the mind, watch film with cultural value. Who cares if anyone is keeping up with the Kardasians? I should be keeping up with the History Channel instead. After all, I should be learning from the lives of my famous predecessors, like Cleopatra, Catherine the Great and Rani Lakshmi Bai of Lansi.

Last but not least, I should smile like a queen, charm like a queen, and laugh like a queen, no matter what my life's circumstances may be. Maybe not so much like the Queen of England, who can hardly be seen laughing in public, but more like the queens of comedy like Betty White and Carol Burnett and all the funny women of Saturday Night Live. According to the Mayo Clinic, laughter has many short-term and long-term benefits, the short-term benefits including stimulating the organs by letting in more oxygen-rich air, cooling our body's response to stress and soothing tension by relaxing the muscles; and the long-term benefits including pain-relief, boosting the immune system, improving mood and making it easier to cope with difficult situations. 

I choose to live my life with MG by being the Queen of Jupiter. It means loving myself in spite of my new inabilities and limitations, and accepting them with love, faith, grace and humor, and striving to live life fearlessly.  It means making the best of an unfortunate situation, but believing that it is all for a greater reason. God does not make mistakes, and He did not make a mistake when He made me. I know that I am still perfect in His eyes, in spite of my many imperfections and health challenges. MG is just another way for Him to help me find my hidden strength and inner beauty, for without it, I would not have realized my inner queen. 

 

A Slice of Me - (My Thymectomy and Recovery) Part 2

"No one saves us but ourselves. No one can and no one may. We ourselves must walk the path." --Buddha

Major surgery is traumatic. It was a real learning experience for me and although it has been two and a half-months since my surgery, I am still learning new things about my body every day. If statistics give us clues on future trends, most of us will go through surgery sometime in our lives. According to an article in the Journal of American College of Surgeons, the average American has 3.41 inpatient, 2.56 outpatient, and 3.20 non-OR, for an overall total of 9.17 surgical procedures in an 85-year lifespan.¹  The World Health Organization also estimates that 234.2 million surgeries are undertaken around the world every year.²  Ouch. If you have never had surgery, that is certainly good for you and I sincerely hope you will never need any, but since no one knows what the future holds, it is best for all of us to be prepared.

Here is Part 2, as promised, where I will offer tips before and after surgery and a daily or weekly account of my recovery. I had thoracic surgery, specifically a partial sternotomy to remove a thymic tumor, but I suspect anyone facing any kind of major surgery can benefit from my suggestions on how to make life easier for them and their family. Of course my surgery was scheduled months in advance. These tips certainly do not apply to surgeries due to medical emergencies. And although everyone recovers differently, sharing my experience during my own recovery might be able to help other people, especially my co-MGers who have gone through a thymectomy, avoid the many things I now realize I did wrong, which probably contributed to my going back to the ICU six weeks after my surgery, which was so not fun.

Pre-surgery Tips

 1. Be your own advocate. Make sure you ask your surgeon and your specialists if you can continue taking your current medications before surgery. I had to taper and stop one of my medications as it would have slowed down my healing, four weeks before surgery. A good surgeon will bring up this topic, but if he or she doesn't, make sure to ask. You may need several weeks to stop or taper your own meds before your surgery.

2. Now is the time to ask for help. I don't like asking for help. I have been too used to playing the role of supermom for so long that asking and receiving help is foreign to me. But trust me, you will need all the extra pairs of hands you can get. If you haven't already, start training your kids to do things on their own. Even a two year old can be taught to pick up toys, help water plants, and put clothes in the washer/dryer. Recruit family and friends in advance to help watch the kids, run errands, prepare meals and even stay with you in the hospital for a night or two. Do not be shy. Most people actually love to help and will jump at the chance to lend a hand. Try to get help to cover 6 weeks after surgery. Now is the time for you to be pampered like a diva and you deserve it.

3. Clean and organize your home, as long as your strength permits. Your home will be messy for a while while you're recovering and that is okay. A few weeks and days before surgery, I washed and changed bedding, cleaned out my closet, got rid of heavy pots and pans in the kitchen and replaced them with lightweight aluminum ones, cleaned out the fridge and stocked up on groceries and household supplies (toilet paper, bath products, etc.).

4. Stock up on healthful food. Cook simple meals good for at least a week and freeze them. I was already cooking meals five days post-surgery, although they were nothing too fancy. For delicious healthful smoothies, freeze ripened bananas (no peels), strawberries, and blueberries in the freezer. After you come home from the hospital this smoothie will be your magic healing potion. Blend the fruits together with coconut water and flax seed and drink once a day while you are recovering. Coconut water and bananas contain potassium to aid in hydration, promote healthy heart, bones, nerves, blood pressure and muscles, as well as alleviate MG symptoms. Strawberries contain Vitamin C which is necessary for healing. Blueberries have super food properties and are just so darn delicious. Flax seed has omega 3 fatty-acid which helps keep inflammation under control. 

5. Bring or buy appropriate clothes for going home and recovery. After chest surgery, your arms will be useless for a while. I bought four pajama sets with button-down fronts, because I know it would be painful to wear regular tee shirts for several weeks. I bought pull-on yoga pants and shorts since I expected button pants will be impossible to pull on while I was still sore. For women, buy a few front closing racerback bras. I still have trouble putting on regular bras even now and I still pull my tops off like a boy. 

6. Buy lots of pillows. If you are going too have thoracic surgery, you won't be sleeping flat for a while because of the pain. Stack pillows together to form a giant wedge for your back (see my drawing in Part 1). You can add or remove pillows as you gradually recover from the pain. Forget using a recliner. It is much easier to roll slowly out of bed with a hug pillow than get up from a recliner. We bought a recliner days before the surgery (I foolishly followed someone's advice from an online support group) but I just couldn't get out of it without using my arms considerably. I would have been stuck there if I needed to go to the bathroom or get up to take my medication, unless I kept waking up my poor husband to help me get up. The recliner now sits idly in our bedroom, an accidental shrine for laundry that is waiting to be ironed. At least it's clean laundry. 

7. Bring a small pillow to the hospital. Hug it against your chest when the doctors and nurses ask you to cough, or else it would be pure torture. It sounds like they're just being evil, but they just want to make sure you can clear your lungs and avoid pneumonia before leaving the hospital. Holding the pillow against your chest will help dull down the pain when coughing or shifting your body to get in and our of bed. Without it, you would feel as if your chest would rip apart and the pain would be enough to make you swear, I swear. I used this pillow for several weeks at home to roll in and out of bed, when sneezing, coughing, etc. until I could do them with minimal discomfort. It became my BFF. I also used the pillow to support the back of my head on the drive home. Unless your car has a sporty bucket seat with an adjustable head rest, you will need a pillow behind your head to support its weight every time your driver hits the gas pedal a little too hard. This prevents pulling on your sore chest muscles, especially if your driver is a frustrated Indy 500 or Formula One racer.

Post-surgery Tips

1. Try to move around, get up and walk.  After surgery, the nurse or a physical therapist will make you try to get up, move around and walk, even as early as the day of the surgery itself. Don't hate them for it. Although it sounds counter-intuitive, the faster you can move around and walk, the faster your body will heal. Moving helps prevent post-surgical complications like blood clots or pneumonia.

2. Take your pain medicine, and take them on time. I have a high tolerance for pain and I avoid taking medication whenever I can--just part of my powers as superwoman. I stopped taking pain medicine a few days after each of my c-sections, even though I had enough prescription for a month. But my c-sections were a piece of cake compared to my sternotomy, which brought me down to my knees. I realized then that my surgeon had lied to me when he told me that the pain of sternotomy was comparable to a c-section. Duh, but of course I should have known better than to believe him. First of all, he is a man, therefore has never had a c-section and I bet he has never had a sternotomy, even though he is an expert in performing one. So I took all my pain medication and took them on time, and I needed every single dose in order to function properly. Don't try to be brave. You will need your pain meds especially if you want to get quality sleep at night. And sleep you must in order to heal.

3. Follow your discharge instructions. Don't lift anything heavier than 5 pounds for at least 6 weeks. Don't soak your incision in the shower. Call the doctor for signs of infection, like persistent pain, fever, swelling, discharge, etc. Of all these, I would say it is easy to forget the lifting restriction part. Although I was still sore, I would try to reach for things at arm's length, like items in the back of the fridge or across the kitchen sink. My chest muscles would then protest by sending an angry, sharp spasm and then I would be reminded that I am not strong enough for that yet.

4. Talk to your kids. Little kids need to know what mommy or daddy has been through. They are probably very scared and confused while you were in the hospital. Show them the incision and let them know you have an "owie" and won't be able to do some of the things you used to do for a while, like carry them, or put them on your lap. My two year old understood and that was a relief. Instead of asking me to carry him around nap time, he is content to lay down beside me in bed or the sofa until he falls asleep. 

5. Eat sensibly. Remember the healthful food you stocked up before surgery? Well you need to remember to actually eat them and stick to a healthful, anti-inflammation diet while you are healing and, preferably, for the rest of your life. I ate fruit and veggies after surgery, alright, but I was not consistent. I was still drinking coffee, consuming candy, chips, pizza and cookies. I was still eating refined carbs and dairy, which did not help my MG. I was in denial. I regained the weight I lost since my first MG crisis, and I felt less than energetic. It didn't occur to me to overhaul my diet completely since I have been diagnosed with a chronic autoimmune disease. Sadly, it would take another MG crisis for me to realize this.

6. Patience, patience. Do not push yourself. This is my most important tip of all. I was doing so well after surgery that I had completely forgotten I was still chronically ill. I returned to my bad habits--I was still eating unhealthful food, staying up late, wearing high-heeled wedge sandals for crying out loud, when my legs could buckle anytime from muscle weakness, and even had the audacity to travel out of town in an exhausting and stressful road trip six weeks after surgery, in extreme heat and traffic, no less, without consulting my doctor. It was the perfect storm. I ended up in a full-blown MG crisis a few days after returning from my trip, so close to respiratory failure that I had to go to back to ICU. I was in the hospital again for 12 days, straining my already tired family and driving me to the brink of depression.  While everyone recovers differently, make sure you take it easy before you do anything crazy. Get a thumbs up from your doctor before doing any kind of traveling. Listen to your body.  Better be safe than sorry--a tired cliche, true, but a good one nevertheless. I know another person with MG who is already weight-lifting and doing marathons 8 weeks after surgery. Well, good for her, I'll just chill on the couch and write on my blog, thank you very much.

Recovery

Once again, no one person with MG is exactly the same as another and the same goes with how each person recovers after surgery. Although it has been thirteen weeks since mine and I am relatively pain-free, I still have funny, tugging sensations in my chest whenever I'd switch sides while sleeping and when I'd get up from bed. 

Below is a daily or weekly description of my progress, just to give you a general idea of how long it takes to reach each little milestone. Be sure to congratulate yourself for every small victory because you deserve it.

Day 1 - Home from hospital. Still sore and groggy from anesthesia. I was still sleeping most of the day. I  still had little or no appetite, ate mostly crackers and soup but I drank water constantly. Needed a shower seat for bathing. Had to get help from my husband to wash my hair as I could not extend my arms all the way over my head. Slept upright, almost at 45 degrees on the bed with tons of pillows to support my back, right arm and under my knees. Could only stay in this position the whole night for six weeks.

Day 2 to 3 -- Same as Day 1, but sleeping less during the day. Removed the dressing from chest tube wound at the end of Day 2. Appetite is back to normal on Day 3. Still painful to get in and out of bed. Used hug pillow to help with pain.

Day 4 -- Still needed help to undress for shower, but I could wash my hair by myself, although with some discomfort. Stopped using the shower seat. Still had soreness from each side of incision and had stiff, achy shoulders. The incision itself felt numb.

Day 5 - I was able to cook for the first time since coming home. Still could not reach inside the fridge, or cupboards, though.

Week 2 - I was able to do minor housework like sweeping. Bending was still hard. Had my post-surgery follow-up with my surgeon.

Week 3 - Amazingly, I was already able to swing a golf club while playing with my son in the back yard. My superwoman powers were coming back.

Week 4 - Tight feeling in incision area. Would try to gently stretch chest muscles to relieve tightness.  Either side of incision is still sore, but life already seemed to return close to normal.

Week 5 - Can already push vacuum cleaner, but cannot carry it. Started taking pain medicine only as needed. 

Week 6 - Felt almost normal that I forgot I was still sick with MG. Pushed myself too hard and went on a long road trip in 90-degree weather. Caution, do not do this! I was stubborn and didn't fully listen to my body. On the plus side, I could finally sleep on my side, but with a pillow to support by back. 

Week 7 and 8 - Back in the hospital for trouble breathing. Stayed for a total of 12 days. Big sigh.

Week 8 - Back home and taking it super easy this time. Weaker because of MG. MG, they say, tends to get worse after thymus surgery, for about two years. But soreness from incision was much diminished. Rest rest rest. I overhauled my diet and finally quit caffeine, dairy and sweets. Cold turkey.

Week 9 onwards - Pretty much pain free at the incision site. I could sleep flat and turn on either side with a hug pillow for sleeping. There is still a weird pulling sensation inside my chest when ever I would get up from bed, as if my scar tissue inside is settling down due to gravity. But I am so used to it now, that I probably will miss the feeling when it finally goes away one day.

Week 12 - Can finally lift my son! But only for a few seconds. He is heavier, after all, and I am still weaker from my MG. But I've come a long way, baby.

Postscript

My incision used to look dark and crusty because of the glue, and when the glue finally rubbed off a few weeks ago, it has become a soft pink, like the shade of a rose petal or a delicate silk ribbon, and almost as pretty. I used to hide it when I'd go out for errands and doctor's appointments by wearing a scarf or a high-necked tee, but my clothes would rub it sore. So I finally decided I will not hide it anymore. I don't necessarily wear it proudly like a badge of honor, even though a good friend remarked that it makes me look like I finally have cleavage in my photographs, but I am not embarrassed to show it now either. I see it more as a gentle reminder of who I am now. Battered but not beaten. It's a reminder to myself that I am no longer in control, that I am no longer superwoman, and that it is time to let others be superheroes towards me for a change, and while that took some time to get used to, I have become absolutely fine with it.

References

^{1. Peter H.U. Lee and Atul A. Gawande, The number of surgical procedures in an American lifetime in 3 states, Journal of the American College of Surgeons, Volume 207, Issue 3, Supplement, September 2008, Pages S75} 

2. Thomas G Weiser, Scott E Regenbogen, Katherine D Thompson, Alex B Haynes, Stuart R Lipsitz, William R Berry, Atul A Gawande.An estimation of the global volume of surgery: a modelling strategy based on available data., World Health Organization, http://www.who.int/surgery/global_volume_surgery.pdf

A Slice of Me - (My Thymectomy and Recovery) Part 1

Be strong and take heart, all you who hope in the LORD.--Psalm 31:24

I underwent major surgery last April to have my thymus gland removed. My thymus was enlarged because of a tumor, in which case it is called a thymoma, and it needed to be taken out as soon as possible in order to prevent its spread to other parts of my body. It was also most likely contributing to my illness, myasthenia gravis, although the reasons why it does is still not quite understood by the medical community.

Months before the surgery, my surgeon, a mild-mannered friendly guy around my age, briefed me on the procedure. He told me that because of the size of the tumor, the only way to safely remove it would be through a sternotomy, that is, to split part of or maybe my entire breast bone down straight in the middle and yank it open, extract and cut the thymoma, reconnect my breast bone back together with sternal plates (little connector thingies that look like IKEA fasteners) in the case of a partial sternotomy or reconnect it with sternal wires if the entire breastbone needed to be cut (gulp). He said with a chuckle that I don't really want to know what that surgical procedure would look like, so don't google or search for it on YouTube (big, huge gulp). He promised me though that he would try his best to get the entire thymoma out with just a partial sternotomy, but he cannot guarantee it until he sees the actual extent of the thymoma, so the more invasive full sternotomy is still a possibilty. Recovery is from six to eight weeks for a partial sternotomy and up to twelve weeks for a full one, during which time I should refrain from lifting anything heavier than five pounds. I felt a pang of sadness at the thought of not being able to carry my two-year-old for a while.

He did add, however, that the pain is actually not as bad as I might think, because the middle of our chest does not have as many nerves as say the sides of our trunk. The pain, he assured me, would be comparable to a caesarian section. Oh well, I thought haughtily, I went through two of those and while I would never wish that pain on anybody, I was able to get through two c-sections just fine and have two healthy boys to prove it. I was beaming with confidence. And then he stated that there were the usual risks of surgery, of course, like internal bleeding and infection, and because the thymus sits on top of my heart, a very vascular area, my heart or arteries or the phrenic nerve (a large nerve that controls my diaphragm) could get nicked by accident. Last but not least, given my recent crisis involving respiratory distress, there is a chance of a prolonged hospital stay if I needed to be hooked up to a ventilator. My confidence then just quickly turned into mush. He did end the explanation matter-of-factly by saying the risks of mistakes are very minimal, and since I had recovered well from my recent MG crisis and I am otherwise healthy, that I will do just fine.

I left his office in a brain-fog. As soon as I got home, I once again did what any sane woman would do who is scared out of her wits due of an upcoming, unavoidable major surgery--I turned to Google. Knowledge is power after all, and at this point I felt incredibly powerless. Stopping short of watching those dreaded surgical videos on YouTube like my surgeon warned me about, I looked for any information I could find on thymectomy surgery and recovery, and I particularly sifted through the discussions posted on MG online support groups where members shared their personal experiences.

There was not a lot of information available. I think this is because MG and thymectomies are so rare. Of the few personal experiences that I did read, there were not too many clear details on what to do to prepare for the surgery and what to expect after the surgery, how much pain is expected, and how well and how long the patients completely recovered. I made a mental note to try and document my own experience and share it with those on the same journey, including tips before and after surgery and a week-by-week account of my recovery (see Part 2).

I remember many things about the days surrounding the surgery. I remember being calm the night before--I was actually able to sleep well. I have also been praying to God a lot for the surgery to go well and somehow God was filling me with a sense of peace that everything will be alright. At the pre-operating room the next day, I remember telling the surgeon I was scared silly but he just smiled, patted me on the arm and said there is nothing to be afraid of. I remember meeting the assistant anesthesiologist, who was totally McDreamy-handsome and that I shamelessly told him he was cute, in front of my dear husband, no less, while the nurse poked my hand for an IV. I remember meeting the head anesthesiologist, who I was told was the outgoing president of the Society of Regional Anesthesiologists in the Pacific Northwest, and I thought with awe, gee, I should ask for an autograph. I remember being wheeled into the operating room, which was refrigerator-freezing, and scooting onto the hard operating table. I was shivering from the cold a little from fear, then the anesthesia kicked in. I immediately felt sleepy. I remember the nurses telling me "sweet dreams," me saying a little prayer "Lord I am all yours." And then I was out. 

I woke up after what seemed like a fifteen-minute nap, even though the surgery took two and a half hours,  and I found myself already in the recovery room. I realized with huge relief that I was breathing on my own. I did not need to be connected to the ventilator! My husband was by my side, a little tired but profoundly relieved as well. He said the surgeon was able to cut the entire tumor out and that he only did a partial sternotomy. God bless his heart. My incision measured only two and a half inches long and It did not even have any stitches. Amazingly, it was super-glued instead. I was sore and groggy and very grateful to God.

I was still very sleepy so I have to say I slept well that night in the hospital in spite of the pain. The next morning, the assistant surgeon came to see me and inspect my chest tube, which is a small plastic tube that snaked around my ribs under my skin, protruded out from under my collarbone and was connected to a suction machine. It drained the excess blood and other fluids from my chest. It hurt like heck. Every time I took a deep breath, I would feel a giant spasm at the bottom of my left rib and the shooting pain would knock my breath away. I expected it to stay inside my chest for another night. But unbelievably, the doctor said she can remove the tube right then and there and I could go home if I wanted to. Go home! After an overnight stay? Without hesitation, I chose to go home that day, back to my family. My parents had flown in from halfway around the world to help watch the kids. My mother-in-law also took time out from work to help out for a few days so my husband could take a break. It was good to heal in the comfort of my own bed, with home-cooked meals and my loved ones nearby.

It has been exactly twelve weeks to this day since I went under the knife. The surgery was successful and I was able to recover really well. What I haven't mentioned yet--and is the actual point of this blog post--is that in the days leading up to the surgery, like anyone about to undergo a major medical procedure that may result in death or severe incapacitation, I spent many hours lost in anxious thought. I was trying to hone in to what it was that was really bothering me--was it the thought of dying on the operating table? 

Upon deeper reflection and a whole lot of prayer, I was sure that it was not dying itself that frightened me, especially death from surgery. What better way to go than being asleep, peacefully sedated with anesthesia? Even dying from MG is probably not as bad either. I would probably pass out first from the lack of oxygen due to respiratory failure before I finally suffocate and die. Not too shabby. What distressed me, like any parent in the same situation, was the thought of leaving my spouse and young children right when they need me the most. How will they eat? My husband still gets my grocery list wrong after eighteen years of marriage. How will they find things they need? My older son cannot find his way in the pantry or fridge or locate his own belongings to save his life. Everyday it's "Mom, where are my flipflops? Mom where is the big ipad? Mom, where are the hash browns? Mom...mom...mom...?"  This made me realize what I needed to do, I needed to start a conversation with my family about what should happen if I were to die. And they needed to start getting lessons on how to survive without mom.

It was not an easy conversation by any means. When I was growing up, death or dying is not something people talk about at home, the same way nobody wants to talk about money problems or marriage troubles. It was considered taboo and did not earn a place at family talks over dinner. It is the same way with my close friends even now. Either you bring it up as a joke or as a hypothetical question, never an actual possibility. When I had my first MG crisis, I wrote my friends that I wanted to thank them for their friendship because I came so close to dying and I didn't want to miss another opportunity to say so. Some of my friends were a bit shocked. "Why are you saying these things?!", like I might as well be talking about shaving my head and joining the Neo Nazis. If I said something like, "But really, I am not afraid of dying because I know I will finally meet God and my departed grandparents, I just want to say that I have been very blessed to be your friend....", I am given the usual replies, "enough, you will live to be a hundred years" or "you'll live long enough to have great grand kids, so hush." It is as if the very mention of dying will hasten its arrival, or worse, that I had completely given up on my health and my life and I am ready to go. Goodbye, cruel world. So I am usually left frustrated and unable to really say what I want. 

So I very gently brought up the topic with my husband weeks before my surgery. To his credit, my husband took it rather well and engaged me in the conversation. We are both practical people after all. We talked about many things--how we'd like to raise the boys, how I'd want him to talk to them about me and how I'd want to be remembered, whether they should move or stay put here at our home for a while (because of memories, etc), how and where I'd like to be buried, and that I really wouldn't mind if he eventually remarried, or at least hire a maid--which made him  laugh--and I promised not to haunt him during my birthday or wedding anniversary, but just watch over them, and keep them out of trouble. Then he said, with a wink, that if he did remarry that I probably shouldn't watch over him and his new wife too closely --which made me laugh. And we took turns talking. He also told me what he'd want me to do if he kicked the bucket first, since nobody really knows when the time comes to say bye bye to earth. The dreaded conversation surprisingly became an intimate, loving and pleasant one, and I am glad we did it. And that is why in the days leading to my surgery, I became less and less worried, and the night before my surgery, I had no trouble falling asleep.

The conversation about dying need not be a difficult one. When done with great love and sensitivity, after prayerful reflection, it could be a rewarding experience with your family and friends. Whether it is you or a sister or husband who is ill, or an aging parent or grandparent, or a friend who just wants to share thoughts and feelings about dying, these conversations are an avenue for making last wishes known, for opportunities for saying thank you for being a part of each others' lives, and a reassurance that the person will be remembered the way he or she wants to long after they leave their earthly life. It can even be a little celebration of sorts, a day of shared happy memories and even laughter, and greatly help ease the person's worries about leaving their family and their earthly life behind. It can also help ease the heartache and be a source of great comfort and peace long after the person has gone.

Whether you are sick like me or if you are as healthy as a horse, and a parent of children young or old, if you have an aging parent, or sister or a best friend facing major surgery, please do them or yourself a favor and start the conversation while you can.  It is a conversation that belongs in the comfort and privacy of the home, between close family and friends, at a time when everyone is calm, collected and comfortable. It does not belong in the ICU or operating room or in the ER when it might likely be too late, with a whole world of things left unsaid. Please do not wait until then.

In memory of Ivy Sayson, my older son's former nanny, who would have gone through a similar type of surgery for her heart condition, but she joined our Lord in heaven in December 2014. May you rest in peace, Ate Ivy. 

Chasing the Sunshine

Keep your face to the sunshine, and you cannot see the shadows. It's what sunflowers do. -- Helen Keller

Since getting diagnosed with myasthenia gravis, I have been assigned two nurse case managers, one from my health insurance and one from my health care provider, who follow up my ongoing treatments with regular phone calls. They call every two weeks or so to see how I am doing, how I am responding to treatment and to answer any questions that I might have. They also ask if I am feeling depressed or if I notice any signs of depression. Hmmm. I am always stumped when they ask me this question. I have no idea if I am depressed. So I tell them honestly that I don't know, that I do feel sadness about my condition once in a while but it is not a sadness that prevents me from getting up from bed in the morning and going about my day. I think they are satisfied with that answer, assure me that if I ever feel the need to see someone for prolonged sadness, that they are willing to recommend a health professional for me to see or suggest some course of treatment. Long after I hang up the phone, the question still lingers. Am I depressed?

A friend or loved one may have told me once that if you have to ask yourself if you are depressed, then most likely you are not. So what is depression and what is it like being depressed? Depression is defined by the Mayo Clinic as a persistent feeling of sadness and loss of interest. It affects how you feel, think and behave and can lead to a variety of emotional and physical problems. You may have trouble doing normal day-to-day activities, and depression may make you feel as if life isn't worth living. Depression is common among people with chronic illnesses like MG, Parkinson's, lupus, rheumatoid arthritis, etc. Well, I certainly have had days when I felt sad since I got sick. I felt hopeless when I landed back in the ICU for the second time in my life only four months after my first. Since then I have come to realize how fragile my health is, and that this disease is not to be taken lightly. I felt sad and lonely in the hospital, and felt sad and lonely when I came home to an empty house. My husband had left for work in the morning and my children were staying with my sister-in-law. Alone with my thoughts and still feeling weak, it was the perfect sowing ground for the seeds of negative thoughts and emotions. Will I ever be strong again? What if I continue to get worse? Will I be able to do the things that I love? Will I be able to travel and see family and friends in other parts of the world? What happens if I die soon? How will my poor husband and children cope without me? The torrent of questions scared me, and so I did what anyone in my situation would do right there and then--I googled 'depression' on my ipad and researched ways on how I can battle it.

I read articles upon articles, medical websites, blogs, watched videos, and followed the tips (there is a ton you can do when the kids are away) and since that day (which was only a few weeks ago), I was able to start slowly driving off the darkness. It is a daily struggle--and so far I have been quite successful, although I do not fully understand the reasons why they are working for me. But for readers who may be going through a rough time, I am happy to share the tips that I am finding to be effective--drug-free natural ways to ward off depression.  I'd like to stress, however, that if you are suffering from a chronic or serious illness like I am, to first try to get as much medical help from a physician and to learn as much about your disease as you can. Whether it is MG, or allergies, migraines, cancer or constant pain, and even clinical depression, we first need to be seen by a doctor as soon as possible and hopefully get a correct diagnosis, so that we can all be on our way to treatment and recovery. That being said, here are my own ways of chasing the sunshine.

1. I pray.

I pray differently now and I pray more. By this I mean I talk to God in my head constantly, from the time I open my eyes in the morning to the the time just when I am about to fall asleep at night. It is an on-going honest-to-goodness, no-holds-barred conversation all day long. I occasionally read from the Bible, prayer books and pray my rosary, but it is the one-on-one chat session with God that pulls me up and gets me through the day. I also found this prayer from St. Ignatius of Loyola, which I say in the morning before I literally get out of bed right at the time of day when depression tries to rear its ugly head. St. Ignatius famously suffered from depression, and was able to overcome it by recognizing his unhealthy thoughts when they come and replacing them with positive ones--which is very similar to modern day cognitive therapy techniques used to treat people with depression, or so I've read. He hit the nail right on the head with this simple prayer.

O Christ Jesus
When all is darkness
And we feel our weakness and helplessness,
Give us the sense of Your Presence,
Your Love and Your Strength.
Help us to have perfect trust
In Your protecting love
And strengthening power,
So that nothing may frighten or worry us,
For, living close to You,
We shall see Your Hand,
Your Purpose, Your Will through all things.


I pray for myself to get better, and I pray for others who are sick like me. The same way I brush my teeth, wash my face and dress every morning, I also don an armor of faith through prayer. This fills me with peace and assurance that everything will be okay and God is nearby to carry me and others through the day.

2. I get busy, but I know and respect my limits.

I find that whenever I have too much time to myself, negative thoughts and emotions find their way through and if I am not careful, can easily take control over how I see the rest of my day. Luckily I do not have to look too far to find something to do. I am a busy stay-at-home mom of two children, the younger of whom is only two years old, and unlike my older, calmer child, is a big ball of energy who keeps me on my toes. Plus there are meals to cook, dishes to put away, laundry to wash and fold, rugs to vacuum, emails to read, bills to pay, bills to file, plants to water, books to read to my child, etc. When I do have time to myself, I write on this blog, I draw, paint, watch Korean dramas on YouTube, or just watch TV. But I know my limits and I honor them. I sneak naps in between chores when my energy wanes. When my husband watches the kids I stay in bed and meditate. Being busy doing things that are not related to my illness makes me think less and less about being sick, I have no time to feel sad and I actually feel really good. One day when I am stronger, I will also find ways to help others too. Helping others is the all-around hands-down antidote to depression, but that will come in time when my body has healed enough to be able to lend a hand.

3. I surround myself with positive energy.

Positive energy comes in many forms--listening to fun, upbeat music, watching feel-good movies, reading inspirational stories and books, eating more healthful food (more fruits and veggies), sharing recipes with others, tending a garden, caring for a pet, keeping in touch with family and friends from around the world, maybe less Facebook and more Facetime, less Game of Thrones more Downton Abbey, surrounding yourself with positive people, laughing more, smiling more and practicing many, many random acts of kindness towards your self, friends, family, neighbors and even to strangers, even when you don't feel like doing it sometimes. It can be as simple as just thinking happy thoughts--a mental challenge in this age of cynicism and a universal disdain for Barney the Dinosaur, true, but with practice it can be done, say today I had a good hair day in spite of the heat and humidity. Score!

I find that in practicing positive thinking I need to start being kind to myself first, before I can be kind to others. On days when I feel especially weak, I talk to my body and I tell her that today we will take it easy. I picture myself beside my body gently coaching her to rest when I need it, to ask for help reaching for heavy plates in the cupboard, and praise her for trying to get through the day without complaining, to admire her for keeping calm even when her toddler is screaming his head off because he wants the big ipad which his brother simply refuses to share. When he does break out in a monster tantrum, I try not to take it personally, and instead patiently wait for the tantrum to subside, and look at the situation with a sense of humor (I now try to film my son in the throes of a tantrum with my video camera and play the video for him later when he's happy and we have a good laugh every single time). I also seek positive images, like I now refrain from watching violent films. I try not to read the news. If I happen to read bad news or see terrible events unfolding on TV where people are hurt, I say a prayer for them and their families.  When people say they want to visit me and help babysit the kids for a day, or even just to see how I am doing, I take them up on it and enjoy their company, even when I don't feel like being sociable at that moment. I try not take my illness too seriously, and count my many blessings. It is a mental exercise that I must do daily and conscientiously if I am to keep depression away.      

4. I meditate.

A good friend of mine who is into holistic medicine suggested I give meditation a try. I said sure why not, and added "how to meditate" to my list of Google searches. At this point I will try anything just to avoid getting sicker and having to go back to the hospital. There are dozens and dozens of ways to meditate, I have learned, and YouTube is full of videos for self-guided meditation. But as to why we should mediate, especially those of us who need healing and are trying to get away from depression, it turns out that there are actually science-based studies that prove the benefits of meditation.

Meditation alters the way our brain functions in a good way. While I will not get into the technical brain science details, because they are just way too over my head (no pun intended), studies have shown that meditation changes the way our brain processes fear, anxiety and other negative emotions and trains the brain to look at these from a more rational perspective. The end results are a calmer mind, greater capacity for empathy and compassion, and being able to respond in a more balanced way to people or events in our lives. But meditation must be practiced on a daily basis, at a minimum of 15 minutes each time, in order to strengthen and sustain these new neural connections, otherwise, our brain will go back to their old unhealthy habits. For the complete article on the science behind the benefits of meditation, here is the link.

I have since been meditating, even while I was still in the hospital, just before I take an afternoon nap and right before I go to sleep at night. My meditation of choice is one that is called "full body scan meditation", where I visualize a powerful beam of white light from the sky scanning my body from my toes to my head, healing me as it floods my body. It may sound like I am describing a scene from Star Trek, or my body laying upside down on top of a giant Xerox machine, but I find that the process of quieting my mind and visualizing healing light energy bathing my body for just 15 minutes each day certainly has had a calming and relaxing effect on me, and has been keeping stress, bad thoughts and bad feelings at bay. It has also helped me fall asleep faster, a huge bonus considering that a side effect of my medications is insomnia.

5. I literally chase the sunshine.

It is a well-known fact that sunshine affects our moods. Sunshine helps boost levels of serotonin in our brains, a neurotransmitter that affects sleep, appetite, memory, and mood. Sunshine makes us happier. It also helps people recover more quickly from the stress and pain of surgery and alleviate symptoms of chronic diseases including MG. I noticed its effects on my mood during my hospital stays. I know I felt more optimistic and hopeful during my second time in ICU, where I had huge southwest-facing windows, even though I was weaker physically. In contrast, my first ICU room four months previously had smaller irregularly-shaped windows that faced north. My room then was darker, and I felt sicker and less hopeful about my prognosis, even though physically I was much stronger then. So these days I strive to sit in the early morning sunshine with a cup of tea and browse through my ipad. I only sit for 5 minutes under direct sunlight because too much can exacerbate my symptoms. Five minutes is also more than enough to get the daily recommended dose of Vitamin D, which is 2,000 IU. It is also enough time to read Psalms 145-150. Remember to wear shorts and no sunscreen. Right now it is summer where I live and it is easy to get my morning Vitamin D's. It will be trickier in the winter, but I will cross that hopefully sunny bridge when I get there. In the meantime, I will chase the sunshine whenever I can.

6. I try to look my best.

When you're sick like me, and a busy mom at that, the last thing on your mind would be how to look your best. My medications also have that lovely effect of putting dark shadows under my eyes from lack of restful sleep. But I know that when I feel bad AND look bad, then I'd feel even worse, especially when I'd catch my reflection in the mirror or see the three hundred photos my toddler occasionally takes of me using the ipad. Unless I cover every mirror or reflective surface in my house or lock the ipads away, then I am doomed. So I try to do the minimum I can to look presentable--brush my hair, wash my face and wear clean clothes with fun colors. As long I don't scare the neighborhood kids or the UPS man when I get my packages at my door, I'm good, unless of course it's Halloween, then I all I need to do is dig out my witch costume and a broom. Too bad Halloween only comes once a year.

7. I try to get enough sleep at night.

The key word of course is the word "try" because getting a full straight eight hours of sleep is downright impossible for someone like me. My toddler still looks for me in the middle of the night, and my teenaged son has a tendency to sleepwalk. But I do trade places with my husband during weekends--he wakes up for the kids while I sleep in. It works, if only for two days out of the week, but two days of quality sleep is better than no sleep at all.

8. I draw strength from my family.

I am blessed that I don't have many difficult days like this. I read somewhere that there are people who are genetically predisposed to depression, and thankfully I don't seem to be one of them. I've read that if a person grows up around another family member who is depressed, there is a small chance he or she will experience it too sometime in life. I don't remember seeing anyone depressed in my family while I was growing up. My extended family has been through rough times like everybody else, but I have not seen anyone exhibit any signs of depression. Maybe we are just really good at denial, or maybe we just know how to be sad and when to be happy. And if there is one thing my extended family knows how to do well is not to dwell on sadness, but to party. They can come up with all sorts of reasons to celebrate with food and family. No matter what each one is going through, they find reasons to get together and feast--and do it often. At my maternal grandmother's funeral many years ago, which sadly I was not able to attend, they had a family photo taken where everyone was dressed in white, and there were about twenty or so relatives, and each one was smiling or mid-laughter in the photograph. I don't think they were happy that my grandma passed away (she was 84 and died peacefully in her sleep after battling cancer), but I think they just made peace with the knowledge that dying is a natural part of living, and we were all blessed and happy to have been a part of my grandmother's life, and life goes on. This is a strength I do not and will never take for granted, and look forward to the day when I am strong enough to rejoin those family reunions with my husband and kids.

9. I live life a day at a time and I am thankful for each day.

When all else fails, especially on difficult days when none of the tips above seems to be helping, I just try to get through life a day at a time, and maybe even an hour at a time if I have to during extra bad days, and be thankful for being able to manage my illness and avoid the hospital for another day. I also sometimes just let out a good cry--it's certainly cleansing and cathartic, and my toddler is my role model when it comes to crying. Boy, can he bawl. I also remind myself that the body breaks, it is temporary. Who I am is not just my body. I am more than my body. I am my thoughts, my feelings, my faith, my relationships, my memories, my talents, my dreams. 

This blog entry is long enough so I will stop here. The point of my post is that there are many ways to combat the stirrings of depression and I know I am not alone in the fight. If you are experiencing prolonged bouts of sadness, hopelessness and despair, please, please do not hesitate to reach out to talk to someone--friend or loved one who will take time to listen--and consider getting immediate professional medical help. I am blessed that I can shake off sadness and depression quite easily for now, but it may not always be like this. But I am aware of my options. I will talk to someone and even seek professional help if I ever feel the need for it. The nurses case managers check up on me every two weeks, so I am covered for now. In the meantime, I will continue chasing the sunshine while I can.

 

Why me? Well, why not me?

Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was 
oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, 
the more joy you can contain.. ---Kahlil Gibran

Myasthenia gravis affects 2 to 7 out of 100,000 people in Western countries according to the Muscular Dystrophy Association, and is considered a rare disease. It is not contagious and affects more women than men, between 20 to 40 years old, although it can occur in persons of any age, even children as young as two. The disease varies in severity from one person to the next. Some people have weakness limited to facial muscles only. Others have weakness in their arms, neck and legs. Others have predominantly swallowing difficulties. I happen to have the most severe version of it, since I have it all, but mostly it affects my breathing muscles which can quickly lead to a crisis and a trip to the ER plus several days in ICU. There are no known causes of the disease, so even if I would like to point the finger and blame someone (my parents? distant cousins twice removed? my great great grandfather?) or something (was it the water? was it the street food I ate back home? was it from all the caffeine from Starbucks?), there is no real reason for me to. Which leaves me free to blame the heavens, the universe, God, or Allah, or Buddha. Why me?! I just want to be a regular mom who drives her kids to parks and parties, shops too much, tries to go to church every Sunday, drinks too much short Cafe Americanos with extra room, and travels once in a while to fun destinations like the beach. Why do I have to be the bearer of a such a strange illness with no known causes, no cure, and not enough information to go by? Why do I have it, and why did it come out when it did?

I grew up Catholic and went to a Catholic school from elementary to high school. I don't know how it is to have gone to school in a non-Catholic or public school, but the lessons I have learned in the classrooms about God, prayer, love and fortitude have imprinted well in my young mind, along with math, science, reading, art and history lessons, and have forged an inner strength that I am only now beginning to discover. I owe a huge chunk of my mental and spiritual strength to the teachings of the kind nuns and religion teachers. Thank you Sister H (R.I.P.), Sister S, Miss V and many others.  I was also raised by a set of parents who continue to show me to take whatever life brings and make the best of it and continue moving forward. They are now in their seventies, and while plagued with their own share of health and aging issues, continue to travel everywhere and enjoy life with their tight-knit circle of caring friends. They did not always live a comfortable life. They have survived a cancer scare, among other illnesses, and their house burning down many years ago where they were left with almost nothing--thank God no one was home at the time and no one got hurt. But they soldier on, armed with a strong faith in God, a positive outlook, a great sense of humor, and an unwavering belief that all things--good and even sad, unhappy events--happen for a reason.  Pity parties are simply not in their vocabulary. And so I am actually proud to say that the episodes of me screaming "Why me, Lord?!" during difficult periods in my life tend to not last very long. It did not last long when I was told I have MG for the first time either. Because in the quiet of my mind, after all the initial tears have been shed and the constant worrying and asking "why me" fade in the distance, another question gently rises up from the depths and whispers back, "Well, why not you?"

Well, yeah, why not me? When MG entered my life, I was already a forty-six year old mother of two healthy children. My husband has been blessed with a stable job that lets me stay home with my kids in a comfortable house, and his job provides a fairly decent health insurance. One of the many kind nurses at the hospital also told me that I am lucky because I also happen live in a part of the world which is one of the best places to receive treatment for this rare disease--here in the northwest United States, where within thirty miles of our address, there are at least 23 hospitals, many listed among the top hospitals of my state. Twenty three! Many countries in South America, Africa and Asia, sadly do not even have access to basic healthcare for the most common of illnesses, not to mention access to clean running water. To top it all, I was diagnosed correctly within ten weeks of the onset of my symptoms, and I am now in the hands of a competent neurologist. Ten weeks! A person from a local online support group I recently joined told me that most patients do not get correctly diagnosed for many years. From this perspective, I have really nothing to complain about. MG from my standpoint is a just a small bump on the road. But what is the purpose of this bump?

The purpose of this bump is that it is a burden but it is also a gift. It is a burden but a very light burden at that. I am not even the sickest person I know right at this moment. While I do get tired very easily these days, I have no pain, other than the discomfort of my incision that is still healing from my recent thymectomy surgery. I still cannot drive because of my weakness, but then I get to stay home and just chill with my children, laugh with them at funny Youtube videos, write, cook, draw and paint once in a while. I have slowed down but I have not given up anything else. More than a burden I now realize that my illness is also a gift--a gift to see life more clearly than I did before, like I was looking through an unwashed window all my life, not realizing it was dirty, until that window was suddenly wiped clean. Now, the sky is not just blue, but a beautiful shade of cerulean. The  leaves of the cedar trees are a brilliant verdant green. The single peony that bloomed in the front yard is a source of great joy. I marvel at every new word my younger son learns everyday, and I notice more closely how his eyes shrink to slits and his cheeks ball up when he gives me his funny toothy smile, how rosy red he would quickly get after a few minutes in the sun. I thank God everyday for every morning I wake up breathing deeply. I am grateful when my strength picks up in the afternoon so I can sing and dance with my little one when his favorite TV show Space Racers is on and we both shimmy to the theme song. My older teenage son has also begun to be more attuned to my needs. He would now do chores around the house without me asking, and even volunteer to babysit his little brother when my energy wanes. He researches ways for me to be able to get to the hospital more quickly. My husband has become my hero in every sense of the word. He and I have become closer than we have ever been in our entire married life since my illness. I am kinder to myself. I am kinder to others. I eat more healthful foods. I no longer go shopping as much. I have stopped obsessing about a having a clean kitchen sink when I go to bed at night. I am more patient towards my family. I am more compassionate towards those who are suffering physically, mentally or emotionally. I now refrain from judging anyone, especially since I have come to realize that we are all fighting some kind of battle in our lives every single day, even when we do not show it on the outside. I am more grateful for every kind word and gesture from friends and loved ones. I pray more. I am beginning to see more joy and love, everywhere, all around me, and I am overwhelmed with an indescribable sense of peace and the knowledge that come what may, everything will turn out okay.

But what about the timing of my illness? Why now, and why not earlier in my life or much, much later? If my symptoms had appeared sooner in my teens or my twenties, I would probably not have been properly diagnosed. I would probably have been in a place where I would not get the help that I need. I would probably have decided not to have children, and might have shied away from any meaningful relationships. If my symptoms had appeared much later, then I would not have known that I have tumor in my thymus. While the tumor has been found to be mostly benign, thymic tumors are mostly asymptomatic. But mine was threatening to escape outside of its capsule, and if it had not been removed soon after its discovery, the tumor may have eventually spread to my lungs and my bones. I will never truly know what might or what might not have been, but the timing seems to have worked out very well in my favor. I also realize that these are all not accidents. This path has already been laid out before me, and where I am right at this moment is where God wants me to be.

Why me? Next time we ask this of ourselves when we are facing our hardest trials, maybe we should also stop and ask ourselves "why not me" and be amazed at all the answers. Thank you God that it has been me, and I will forever be grateful for this gift of grace.

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.