Living with MG: ‘Every Day Is Different’

Carmelita Pallares, 31, of Albuquerque, New Mexico, finds ways to conserve precious energy so she can care for her toddler daughter

Article Highlights:

In addition to this personal story, this series contains three additional sections, links to which can be found at the bottom of this page. These include:

In addition, read MG: Can the Immune Response Be Tamed? for a look at what is currently understood about myasthenia gravis, and the MDA-funded research seeking to extend that knowledge and develop more effective treatments for this difficult disease.

by Carmelita Pallares on June 25, 2013 - 11:37am

My name is Carmelita Pallares. I am Native American; I am a member of both the Navajo Nation and Santo Domingo Pueblo tribe. I am 31 years old. I was diagnosed seven years ago with myasthenia gravis, only three months after having emergency surgery and undergoing a temporary colostomy following an accident. My neurologist believed that the trauma my body suffered from this accident and the stress my body endured may have triggered the symptoms of MG.

My first symptom of MG was not being able to press my lips together after applying lipstick, then chewing food became very difficult. My jaw became so weak I could not open and close my mouth to eat. My eyelids then began to droop very low; I had double vision, and at times I could not see at all.

I thought I was losing my mind because these symptoms were only happening in the evening, then evenings went to late afternoons. I was at a birthday party and having really bad double vision when a girl asked me if I was blind. I looked in the mirror, and my right eye was looking back at me and my left eye was completely turned up — all I could see was the white of my eye. It scared me. I showed my husband, and he became worried too. That is when I went to the hospital and was diagnosed shortly after.

A week after receiving my diagnosis, I went into a myasthenic crisis and was hospitalized and went on an IVIG treatment. I began a regimen of medications and was told that I was not able to reverse my temporary colostomy because of medications I was on for MG.

Seven months passed, and I decided to get a thymectomy. Six months after the thymectomy, I found out I was pregnant and I stopped all my medications. Sadly I lost the baby, but because I was off my meds, I was able to get my colostomy reversed. I had no MG symptoms after the surgery, so I stayed off the medications.

I finished college and had a beautiful baby girl in the six years I was in remission. But in February 2013, my remission ended, my symptoms came back, and I am trying to live with myasthenia gravis all over again. To control my symptoms, I’m currently taking Cellcept and a high dose of prednisone, and using Mestinon when my symptoms become too hard to endure after rest.

Although I have bad insomnia due to my prednisone intake, the rest I do get is very important, and I try to rest as much as possible. Rest used to mean reading a book, watching my favorite movie, or talking and laughing with those I love, but with MG, even doing these simple tasks can cause muscle weakness. Now I rest by lying down with my eyes closed for different lengths of time.

In the morning, after hours of rest, I am at my strongest. I take that opportunity to play with my daughter, who is 18 months old. I make her breakfast and bathe her, and in between each task I lie down for 10 minutes, not moving my body.

I have different ways of saving time and energy. At the beginning of each week, we buy groceries and cut up all the vegetables, fruit and other food and place them in containers. To make snacks or meals, I simply open the containers and create a dish.

Eating meals is very challenging for me. Before I eat, I try to rest my body and try not to talk. I also try to make my meals easy to chew and swallow. Sometimes I cannot finish my meals because I am unable to chew due to weakness in my tongue and jaw. Swallowing becomes difficult when my muscles are unable to push down the food I eat. After meals sometimes my speech becomes slowed and slurred, and then my eyes become very heavy.

I stay out of the heat as much as possible as that also weakens the strength in my muscles. Living in the desert is not ideal for a person with MG. I do not drive as much as I used to as this causes muscle weakness in my eyes. Driving makes my eyes muscles work very hard in order to look at the surroundings while battling the sun. I tend to do more activities in the evening as it cools down. If I am lucky, I am able to walk down the street with my little girl.

The key is rest — but it is not always easy to rest when you have to work and are a parent. There are so many things to do in a day. I have had to realize of that list of a hundred things to do, I may only get two done and that’s my life.

I conserve my energy for important things that involve my daughter. My world revolves around her. I know when it is not safe to be alone with her as my symptoms worsen throughout the day. I am able to ask for help and accept it, even though this was not always easy. I have a huge support group that includes my husband, our parents, extended family and friends who help me take care of my little girl when my symptoms are really bad.

It’s difficult to live with a muscle disease that cannot be seen by the human eye. To others we look “normal,” and it is often hard for people to believe the paralysis our muscles go through on a daily basis. I know many people who have this disease often feel like they are losing their minds, and sometimes those in the medical field make us feel crazy too, but never doubt yourself.

I wake up with such strength, and I feel like this diagnosis has to be inaccurate because I feel wonderful. But as the day continues, out of nowhere my symptoms become apparent. With MG, every day, every hour and every minute is different. As my husband’s aunt simply and perfectly described it, “every day is a mystery.”

I realize that I will live my entire life with MG. I am hopeful it will go into remission again. Meanwhile, I am thankful for the times I am “normal” and can go through a day taking care of my family, attending work and teaching children, and not worrying about myasthenia gravis.

I’ve accepted that every day is different with MG and instead of worrying about what symptoms I may have tomorrow, I deal with the symptoms I have today and am hopeful for a better day tomorrow.

My advice to the MG community is that, with time and patience, you can make it through each day, slowly but surely. Wake up and smile at the sun — you’re alive today! May you all continue to walk the path of beauty, my fellow turtle friends.

MDA is committed to finding effective treatments for MG and to improving quality of life for people with the disease.

To learn more about MG research, medical management and more, be sure to check out MDA's myasthenia gravis resources:

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