Myasthenia Gravis

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A friend recently sent me a thank you/ I’m thinking of you note. In it she shared the following quote:

“The secret to juggling is determining which balls are made of rubber and which are glass.”

She concluded her sweet note with words of support and concern and encouraged me to consider which balls were unnecessary and ok to drop. This friend knows me well. She knows all the balls I have been struggling to keep in the air recently. She also is aware of the health struggles I’ve had in the past. She encouraged me to allow all those “rubber balls” to drop so that I could conserve my strength for juggling the “glass balls” in my life. When she sent that card she had no idea how inspired her words were….how prophetic. She had no idea the physical challenges I was struggling with.

Good health and physical strength are things I have come to take for granted in recent years. That was not always the case. Those who are more recent friends in my life, or who know me only through this blog, know the healthy, strong, high energy Katie of recent years, but there was a time in my life when things weren’t going quite so smoothly.

14 years ago I was diagnosed with a neuromuscular disorder called Myasthenia Gravis. I was pregnant with Rusty when I first started having signs and symptoms.  It began with distorted vision and progressed to double vision. At the time I was blessed to have been referred to an ophthalmologist who was also familiar with neurological disorders. At that first appointment, during that first exam, he suspected fairly quickly that I had Myasthenia Gravis. This was a “God blessing.” To get a diagnosis so quickly is unusual.

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After giving birth to Rusty the symptoms of my Myasthenia Gravis exploded out of control. Over the next few years my symptoms included muscle weakness in most of my voluntary muscles, including my eyes, eyelids, jaw, arms and legs.

What this meant in day to day life was  debilitating muscle weakness that prevented me from accomplishing simple, ordinary, everyday tasks. These symptoms were especially challenging being the mom of three little ones under the age of 5. I woke up each day with a certain amount of energy and strength and had to carefully budget my way through my day until Toby came home and could take over.

The weakness in my muscles made the simplest tasks impossible. During that season of my life I was unable to hold my arms above my head to wash my own hair. I had to lean the telephone against the couch cushion and press my head to the reciever to talk, because the weight of the telephone was too much for my arm muscles. I could no longer eat solid foods that required active chewing and had to adjust my diet to softer foods because chewing gum or meat wore my jaw muscles out. Bathing the children had to happen when Toby was home because I feared that once I got them into the tub I would be unable to lift them back out of the water. A trip to the grocery store was only possible if Toby was there to push me around the store in a wheelchair. On especially bad days Toby would set us up in the living room before he left for work, blocking off the room to contain my three little ones, leaving a supply of diapers, wipes, sippy cups, and snacks next to the couch where I was trapped for the day. The kids would play and I would parent them from the couch  until Toby arrived home.

It was during this time of my life I learned a lot about surrendering. As a “doer” and a “go getter” being trapped in a body that didn’t work was incredibly frustrating. There was so much that needed to be done and I couldn’t accomplish the simplest tasks.

But God did not abandon me and great blessings came from this hard season. I learned a lot about the gift of selflessness in service from the many MOPS friends, church members, and family members who stepped in to sacrifice their time and their energy to help our little family function. Meals were brought in on a daily basis, babysitters would come and go throughout the day so that I could lay down in my bed and nap. Volunteers would show up to clean my home or to do a few loads of laundry. Because of my inability to care for myself and my children I was able to witness Christ-like love in a way that I had never witnessed it before.

Another great blessing that came from that dark time was a sweetness and depth to our marriage. At a young age Toby and I had the opportunity to learn what true marital love looks like. As a young wife I watched my husband come home from a long day at work and then step in and take on all my duties in the evening. He would make dinner, throw in a load of laundry, feed the babies and tuck them into bed…and then he would come to me and asked me if there was anything I needed him to do. He knew the frustration I was struggling with being trapped in a body that wouldn’t work, and after a long, hard day his only thoughts were on how he could make my life easier. This sort of selfless love in a marriage usually only comes with time, maturity, and life experiences. This sort of selfless love usually evolves over time, peeking during the twilight years of a marriage. I was given the rare opportunity at age 25 to witness the selfless love and care of my husband…and a glimpse of who he will be at age 85….and I fell even more in love with him.

Over time we were able to get my symptoms managed and under control. As a result of great neurologist at the Myasthenia Gravis clinic at Mercy Hospital we were able to set up a treatment plan that involved removing my thymus gland, medication management, and weekly plasmapheresis treatments (which my mother lovingly drove me to each week during that season of my life.)

It has been so long since I have struggled with the symptoms of my disease that often the memories of this time of my life feel like a distant dream. The physical symptoms of my condition are but a faded memory and I don’t often think about them. It wasn’t until recently, when after 10 years of being symptom free I started having symptoms again, that it has all come back to me.

It started about 2 weeks ago when I began having some vision issues. My initial thought was that perhaps, after years of perfect vision, I needed glasses. Within a few days that distorted, blurred vision evolved into true double vision and I knew that it was the Myasthenia Gravis rearing its ugly head once again.

(This is what reading a book looks like for me lately…)

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I have found the most helpful tool for combatting the double vision is an eye patch over one eye.

The result: only seeing 5 children running around my house instead of 10…oh, and lots of great pirate comments from small children at the grocery store! 😉

In addition to the double vision I am having drooping in one eyelid and muscle weakness in my arms as I perform repetitive tasks like stirring a pot at dinner, or brushing my hair.

If I am being honest and transparent (as I try to always be in this blog)  🙂 I would have to admit that the appearance of these symptoms after such a long remission scares me. When I look at my life now, the busyness, the commitments, and the work that needs to be done with our to adoption treasures, the thought of having a body that can’t function scares me.

And it motivates me…

It motivates me to make changes that will hopefully stem the advancement of my symptoms and keep my condition from flaring up. What this means in a practical sense is self care. It means reducing the amount of stress in my life as much as possible. It means saying “no” to all unnecessary responsibilities. It means lowering my standards and conserving my strength for the most important tasks. It means budgeting my energy conservatively. It means implementing the tools that I know help my body function in the midst of a flare up.

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But mostly it means saying, “No.”

My hope is that through rest and self-care in the upcoming months I will be able to get my symptoms under control and avoid full flare up and the necessary treatments that come with it.

I share all of this not to garner sympathy… Because anyone that knows me knows that there’s nothing I hate more then being  a source of worry or concern for others, but rather to give you a “heads up.” Over the next few months I will be pulling back, focusing my allotted energy on the care of myself and my family, and saying “no” to extra burdens. Please, don’t take it personally. I would love to be in a position to continue saying “yes,” but I simply can’t. Hopefully this season of focused self-care is a short one and I will be back to my former energy and ability level soon.

In the meantime I will continue finding joy in the journey and praise my Father in Heaven for a season of forced respite as He prepares us for whatever the next season holds.

2 responses »

  1. I got to have the same kind of thing with my husband taking care of me early in our marriage, but for a different reason. Two months after getting married we found out I was pregnant. We were so excited, but it was a very difficult pregnancy. At 6 weeks I had to be taken to the emergency room because I couldn’t keep down anything, including water. There were days I couldn’t even sit up because I was too sick. My husband worked nights, then spent all the time he wasn’t sleeping taking care of me. I remember one time I’d had an especially hard day and was really dehydrated. My husband sat beside me in the bath pouring warm water over my stomach for two hours, having me take a sip of water and a bite of cracker every ten minutes because if I didn’t keep down something we were going to have to take me back to the hospital. That time was really hard, but I am so grateful for it because of the way it brought my husband and I together.

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