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.