Ciao from Lisa Gigliotti! I received my initiation into the zebra herd via the neuromuscular disease myasthenia gravis. In undergrad I had been diagnosed with a serious case of rheumatoid arthritis (RA) made obvious by red swollen joints and a slow, limping gait. A few years later the onset of a 2nd autoimmune disease, myasthenia gravis (MG), presented unique symptoms because they were often not visible. Instead of my cells attacking the joint spaces in my body as in RA, with MG my body made cells that clogged the receptors on my muscles, preventing them from moving.
The lessons I learned pursuing a remarkable legal career while living with daily intense pain and the uncertainty of whether muscles would cooperate that day led me to write a series of four books to inspire others to strive for a life that gave them meaning and purpose, despite the adversity which joined along the way. It was the courage (Coraggio!) of my ancestors that showed me it was possible to overcome a challenge like MG, where it seemed I no longer had control over even the most basic muscle movement, because with courage I could look for, find, and take charge of an aspect of the situation and move forward.
5 Invisible Symptoms
1. More than general fatigue–often the heavy sensation that 20 lb. weights are attached to your arms and legs.
2. Double vision-hundreds of muscles coordinate for you to see; even one weak eye muscle can lead to your vision seeing two of the same image.
3. Difficulty swallowing-strong muscles are needed to move fluids and foods from your mouth into your stomach. Weak muscles can result in choking or dribbling out fluids or feeling that food is stuck in your esophagus.
4. Unable to take a deep breath-the strong diaphragm muscle needed to pull in air becomes weak and cannot fully pull air into your lungs.
5. Lack of smile, instead frown-it takes muscles to smile but even if I am happy and think I’m smiling, weak facial muscles may make it appear I am frowning.
4 Things That Help Me Manage Pain and Other Symptoms
1. Attitude: My thoughts are entirely under my control! My thoughts can reduce my perception of pain and how I can reframe my goals to be achievable and fulfilling. Cognitive Behavioral Therapy (CBT) and pain psychology are go-to tools when I need help to steer out of an emotional rut and back on the positive road even though daily pain and muscle weakness might be companions. Constant inner, spiritual fortification is key so that no matter what comes my way, I am better able to stay centered and emotionally strong. I am not a victim. I am a beautiful woman of peace and resilience.
2. Adequate sleep: studies show that lack of sleep can lead to an increase in pain sensation. Sleep is when my body recharges and heals. I have to resist cheating on my 7-9 hours per night.
3. Nutritious food: I control what goes in my mouth. I need to daily select calories that will nourish my bones and muscles and reduce inflammation.
4. Exercise: I find work-arounds so I can continue to strengthen bones, muscles, and cardo-vasculature even with inflamed joints and weak muscles or from bed or chair. I love occupational and physical therapist ideas and videos!
3 Ways My Life Has Changed
1. From the minute I awaken, I need to focus my thoughts on giving gratitude for what I have and the possibility of good outcomes instead of the pain, muscle weakness or concerns that seem overwhelming.
2. Re-Prioritize what is truly important in my life for each day. Every day I start a new tally of the energy conservation I need to accomplish what I prioritized. I time my rest and medication to be optimal at the most needed time of each day. I had to change the past desire to be everything to everyone, to not disappoint anyone, and to be close to perfect. I believe in me, pay attention to me, trust in me.
3. Lighten the negative thinking load. Do I want to spend the day with a crabby Lisa? No way. Who has control of that? Me. It is a waste of my precious daily energy or sleep quota to rehash resentments or dwell on hurts. If I catch myself having a negative thought about someone I try to pivot and immediately send them a love thought. And the negative self-thoughts that creep in? I need to send myself a love thought, too.
2 People Who Inspire Me
1. Ancestors–They might have had no money, no education, no health care, or all belongings and loved ones lost in wars, but with faith and love they were courageously determined to not just survive, but to live with celebrations, laughter, love, and meaning.
2. Caregivers–often the patient receives the well-wishes while the caregiver carries the heavy desire for a loved one to be well. Supporting the well-being of another is one of life’s greatest honors. Caregivers take many forms. For example, Esther Land did not know another person with myasthenia gravis when she was diagnosed 50 years ago and her determination to not have anyone else experience that has led to a thriving Myasthenia Gravis Foundation of Michigan (MG-MI) and her providing support for hundreds of people.
1 Thing I Want People to Know
With courage it is possible to live a positive, fulfilling life no matter what physical or emotional challenges enter your path.
To learn more about Lisa Gigliotti; author, speaker, disability advocate, (and much more), you can visit her website here.
To read all of our previous zebra spotlights, please click here.