Myasthenia Gravis is nicknamed the “snowflake disease” because snowflakes are different from one another. MG patients are also different from one another. All muscle groups can be effected by this neuromuscular disease. The disease can vary, like snowflakes, within the same person from day to day. Sometimes changes happen from minute to minute for a snowflake patient.
I am sitting in a room with some of my watercolor paintings, framed and hanging on my wall. These were painted prior to five years ago. This is when I began noticing my symptoms of Myasthenia Gravis. My double vision began to distort what I saw. I could not grip the paint brush. I dropped it. This was a profound loss. I did not understand what was happening to me. With diagnosis, treatment, and a support group, I have learned how to manage my illness. It is frustrating to find that I could do something an hour ago, but cannot do it now. I am learning that I might be able to do it later, after the muscles have rested.
When I lost my ability to create with watercolors, I explored different mediums. I found that I also loved colored pencils. I began catching new snow flakes. More recently, I discovered needle felting. Creating with wool is new to me and I love it. Because it involves repetitive motion, I need to limit my time with needle felting or my hand muscles weaken. Art experiences, even when brief, light up my life. My past watercolors were detailed. When I lost my ability to see clearly or to control my paintbrush, I experimented with abstracts. I surprised myself by selling the original and a print of this abstract at JeriAielloartstore.etsy.com. I do not know if I would have dabbled in abstracts if I were not pushed in this direction.
After having spent several years, not being able to hold a paintbrush to try detailed watercolors, I find that I am currently able to do it. When I found that I could do this, a part of me became afraid. What if I can’t continue to do this? What if I experience this joy and loose it again? I do not know. I imagine that I will grieve the loss again. For now I am grabbing onto my watercolor snowflake.This is a current detailed watercolor.
I have been a slow learner, but my illness has taught me to live for the day. I am more present and am able to be in the moment. When I say, “I can do this” or “I cannot do this”, it is not a concrete statement. I change frequently. I would like things to be predictable, but I am not able to predict. All that any of us have with certainty is right now. My illness keeps me aware of this.
I continue to hear from other MG patients. These fellow snowflakes tell me that they are helped and encouraged by my experiences. I know that not everyone reading this is an art enthusiast. I also know that other MG snowflakes have experienced losses. Perhaps this will be an inspiration to look for alternatives for other particular losses. For today, I am a snowflake who can paint with watercolors.
I shopped online for a cane to help me deal with the double vision and altered depth perception that I experience as a symptom of Myasthenia Gravis (MG). I was thrilled to find a metallic purple one. PURPLE CANE, PURPLE CANE! When told my husband about my find, he said “Didn’t Prince use that for the title of a song?”. Now I cannot get the tune out of my head when I refer to the cane. But I will try, so that I can move on with this article.
Here is a reminder: The nickname for MG is Snowflake Disease. This is because symptoms vary from person to person. Symptoms can also change quickly within the same person. If you or the person that you care for has this disease, you may find yourself nodding with recognition of my experience. Perhaps your journey with MG is different than mine. My purpose in writing these articles is to help fellow snowflakes cope with challenges.
The above photo shows what I experience as I approach a single step or curb. I have been coping by tapping the back of my heel to the structure to determine where it is. One day I had the thought of how handy it would be to tap with a stick. Then I burst out laughing. They call that a cane! I was not inventing a new contraption. My neuro opthamologist absolutely agreed with the cane decision. He said, “The last thing you need is a fall”.
The medical term for double vision is diplopia. Diplopia and ptosis (drooping eyelids) are often the early signs of Myasthenia Gravis. This was my situation for two years before my other muscles were effected. I experience multiple vision. I see several images rather than simply double. Usually my multiple images are vertical (side by side). Sometimes they are horizontal (on top of each other). When this happens together my brain gets so jumbled. Our eyes are simply the camera lens. Vision happens in our brains. The jumbling causes anxiety. I have learned that daily meditation, mindfulness, and other relaxation habits can help ward off the anxiety caused by the visual disturbance. I need to do this on a regular basis, rather than wait for the anxiety to arrive.
My eye Doc is wise. He schedules his MG patients for late afternoons and early evenings. Double vision is worse after using one’s eyes for a while. MG vision problems are least apparent early in the day. May I suggest that patients find a neuro opthamologist if they have MG. This is a specialist with experience in treating this rare disease.
This impairment interferes with socialization. During a recent visit with friends, three people on a sofa suddenly became six people on a sofa. Rather than talking about my illness, I try to compensate. It becomes difficult to know where to look. I find myself feeling embarrassed and inferior. I am learning that when I do share my experience, I find that most people understand. Some do not, but that is about them and not about me.
I believe my new amazing purple cane will boost my confidence. When I loose my depth perception, I will tap my beautiful purple stick, rather than turning back in terror and feeling embarrassed.
I am so fortunate that my double vision begins at four feet and further. I am able to write, use digital devices, read, and make art. I have recently started to have some close up diplopia. Closing my eyes for a while helps. Closing one eye or wearing a patch always helps. My Doc feels confident that he will be able to treat this with added prisms in my glasses if it progresses.
In the mean time, I am joyfully and gratefully bopping around with my purple cane. By the way, yes, I do have that Prince song amidst my music.
Here is a glimpse of the shipping and handling department at JeriAielloartstore.etsy.com. (tee hee) I get such a big kick out of seeing my little packages traveling all around the country. Two items have left the country. One necklace has crossed the pond. Whenever a customer lets me know that they loved my creation, I smile. Return customers are validating. My muscle disease, as well as the nature of art can be isolating. My trips to the post office are a big deal. I experience the postal staff as colleagues.
I have a map posted above my desk. When I sell to a state, I color it. Dots with numbers show multiple shoppers in a state. More fun for me!
Yesterday I made a post to my wordpress blog. I perhaps pushed a wrong button because the post shows as a separate page called “Making Art”. It appears that today’s writing is linked to my previous blogs, as intended.
I don’t expect to return to this blog until after the Labor Day weekend. Tomorrow, I am going for my all day IVIG infusion. I usually am sick for two days following treatment. It is worth it because I will be stronger for three weeks when it will be time for another infusion. It is time to start thinking about what my recuperation movies will be for the weekend.
The abbreviation for Myasthenia Gravis is MG. The nick name is snowflake disease because symptoms vary so much from person to person. Also, symptoms vary and change within the same person. Previous articles describe symptoms, diagnosis, and treatments. Now I will focus on getting by from day to day. This chronic disease changes everyday life.
KEEPING ITEMS IN REACH, CONSERVES ENERGY. The muscles that help me bend down and reach up do not work well. Some times it is more difficult to maneuver than others. It helps me to be prepared. Keeping dishes, food, and other kitchen items in easy reach helps. Keeping things in the same place in the refrigerator and cabinets saves me when I am having a bad day. At times , I cannot lift and use ordinary objects. Having the milk opened and poured into a smaller container is a great help.
During the first year of my illness, I was unable to shop independently. I learned so much about accepting and asking for help. Tackling the grocery store has been a learning experience. I find grocery carts to be helpful. I can lean on the carts to make the challenge easier. Carts help me with strength and balance.
It helps to have the groceries that need refrigeration put into the same bag. Other stuff can wait in the car until I have a helper. I am finally learning that being able to tackle the store today does not mean I will be able to do it do it tomorrow.
SHOWERING DEPLETES ENERGY FOR ME. I am able to bathe and shower independently much of the time. Some folks may need medical equipment and a person to help with bathing. Sometimes I don’t have the strength to shower. At those times, I make do with a sitting sponge bath. Showering requires planning for me. Gone are the days of a quick shower before an event. I have learned to shower the night before an event. I find that if I put my effort into the shower before an occasion, I will not have strength left for the occasion. The motion of raising my arms and moving my hands to wash my hair depletes my muscle strength. My arm, leg, and breathing muscles quickly become weakened. Using a large towel to absorb the water saves the energy needed to pat yourself dry.
MY SPEECH IS IMPAIRED. Different degrees of speech loss are part of my illness. During the worst of times, nothing happens when I open my mouth to speak. At better times, my voice sounds deep and raspy as if I had a cold. Pushing this makes it worse. This is due to my breathing muscles not being strong enough to move my vocal chords. Resting these muscles is important. My speaking abilities are sporadic. My family and friends understand this loss. It is frustrating when others do not get it. I have had people ask me to speak up or repeat myself when I cannot speak. Talking on the phone is no longer a communication tool for me. I am so grateful to be living in the digital age.
RESTING MUSCLES IS NECCESSARY. I have been a slow learner when it comes to learning about the importance of muscle rest. When an MG patient over exerts their muscles, harmful antibodies get confused and rush to help. This harms the MG patient. They become sicker and weaker. This statement is over simplification, but it helps me to remember to pace myself when I am feeling good. Prior to this illness, I was a multi tasker who pushed activities to the limit. Changing this behavior has been very difficult. I ended up inpatient in the hospital four times last year because my breathing muscles were seriously impaired. This is when this disease becomes life threatening. It is easy to remember to stop activity when I feel sick. It is hard for me to remember to stop when I feel good. I miss exercise! At this point, my doctor says that I am too fragile for physical exercise. MG is so different from other illnesses. I suggest that each patient checks with their own doctor about the safety of exercise.
MY SELF ESTEEM WAS ATTACKED by this illness. Prednisone and other steroids are usually a first line of treatment to help with muscle strength. A side effect is a huge weight gain. I quickly developed the stereotypical moon face as a side effect. To treat my double/triple vision, I was prescribed stick on prisms for my glasses. I found myself obese with goofy glasses and a crackling voice.
One of my first MG symptoms was double vision. I was still working when I received my prisms. My prisms helped. I was overjoyed to be able to see again. I was not diagnosed with MG yet.
I wore my stick on prisms for about two years because I mistakenly believed my double vision was temporary. My vision changed frequently. Prisms can be ground into regular glasses, but I did not want the expense of new glasses every couple months Last summer I finally had prisms ground into my glasses. I like my frames and my lenses appear normal. This has been a great boost for my self esteem.
Someone suggested that I try a resale store to look for clothes after my giant weight gain. This was a life saver for the budget because none of my clothes fit. I see the weight gain as temporary. My steroid prescription is being reduced. I am down about twenty pounds now. Since I cannot exercise to lose pounds, it is extra hard to manage weight loss.. I would suggest limiting sodium to others who are facing this problem.
I had mentioned that I miss using nail polish. Those chemicals make my breathing worse. My friend sent stick on nails to me. Tada! This was a great self esteem boost.
This article addressed some of the concrete challenges that I have faced as a Myasthenia Gravis patient. I have acquired these coping tips as I struggled with Mg obstacles. I am blessed to have an awesome husband who helps me every day. I have friends and family who help. I am learning how to ask for what I need.
The next chapter will deal with less tangible challenges. Grief, loss, fear and depression can be part of the illness. In my next article, I will pass along some ideas for dealing with funky feelings.
I have worn the rose colored glasses throughout my life. My childhood role in the family deemed the glasses as necessary. I flashed that smile and said, “I can do this”. Most of the time I could. I grew into a multitasking adult who was always fine. I pushed through tasks when I was tired or ill. I did not accept limits.
For the past two years, I have been struggling with the chronic illness, Myasthenia Gravis. My pattern was to use my optimistic coping skills to deal with my MG. During the first year of this illness, I made the mistake of exerting myself whenever I felt the least amount of increased strength. This did not work. My illness and weakness increased with exercise. My neurologist said, “Exertion will make you sicker and rest will make you stronger”. During a ten day stay in ICU, I told my doctor that I was “O.K.” He told me to stop lying to him because we both knew that I was not “O.K.”. He pointed out that optimism is a good approach to many parts of life, but not this illness. I learned so much during the conversation that pursued.
During this second year of this illness, I am learning how to be realistic without being pessimistic. I have learned how to break my minimal activities into small parts. I move slowly, for the first time in my life. I have learned plan to rest completely the day before and after an appointment. I say “no” sometimes. I can ask for help.
I continue to wear the rose colored glasses quite a bit. Things are not going as I had planned, but the glasses now help me see the way things are. The glasses help me see that I do not have to be a productivity number. The glasses help me not feel guilty when I can see that some friends want and expect me to be the way I once was. The glasses help me choose people and experiences that fill me up rather than drain me.
I am learning how to be honest about my weakness and limits. At the same time I feel happy most of the time. With a few changes in technique, I can make art. I hear and enjoy music. I meditate. In spite of double vision, I read. Digital devices help me increase my font. Prisms change double and triple images to a single image. I have a big TV and I like movies. It is difficult for me to speak and for others to understand me. No, I don’t like my speech limits, but when I put the rose colored glasses on, I feel so grateful to be living in the world of social media. I have decided to keep the rosy glasses nearby at all times.
Hope in itself is healing. I left my Doctor’s appointment with a smile on my face. I almost had a spring to my step. My doctor’s parting words to me were “I will help you.”
These past two years I have learned about acceptance. I have found ways to live within limits. I have given up many activities. I have practiced doing things differently. Muscles throughout my body are weakened by Myasthenia Gravis. Hopelessness moved in right next to acceptance.
Today I am beginning a new medication regime. My physician’s hope is contagious. I am hopeful.