Category Archives: invisible disease

Snowflakes, Catch Them When You Can ( Myasthenia Gravis & art)

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. IMG_3551 (2)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.FullSizeRender (2)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.

 

 

 






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Being Slow in a Fast Moving World

Myasthenia Gravis (MG) has slowed me down. MG is an autoimmune neuromuscular disease that effects all of my muscles. The effected muscle groups fluctuate. The muscle weakness is made worse by use. Resting the muscles sometimes helps for a while.

I am moving into my fourth year of coping with this disease.  This is a chronic illness. There is no cure, but there are treatments.  I am grateful to say that I am benefiting from treatment.  During my first year with MG, I tugged an oxygen tank and needed a walker or wheel chair to get around.  I now usually need oxygen only during the night.  I swallow a handful of pills a few times per day (immunosuppressants & anticholinergics).  Every three weeks, I spend a day at the infusion center for IVIG treatment.

With this help, I am getting around better.  I move around independently.  I can often socialize for about two hours.  At the two hour point, my double vision becomes extreme.  I drop things.  My voice weakens.  I become very embarrassed of these symptoms.  But, the important thing is that I feel pretty normal during those first two hours.  During those times, I feel like the woman that I used to be.  I was a multi tasking professional.  I met deadlines and productivity expectations.  I was active , fun, and helpful.  I mention this because I think many of us mistakenly believe that active people do not get sick.  We do.

Now meet the slow me.  I repeatedly find myself in this scenario.  I stand at the curb of a street or parking lot, waiting for a long break in traffic  A car will stop and motion for me to cross.  I shake my head “no”.  They stubbornly stay there and continue to tell me to cross. This type of person often has a big grin on their face.  To me, this grin says,  “Look at what a nice person I think I am”.  If I give in and begin my slow trudge across the street, the driver’s grin becomes a frown.  I cannot move fast.   The driver begins waving their hand quickly in the direction that they want me to move.  This could all have been avoided if I could have simply crossed the street during a traffic break.  I am learning to ignore these yahoos that insist I cross, in spite of the nasty face that they might make.

My MG is now an invisible disease. I am currently not using a walker or oxygen when I am out. This does not mean that I am healthy or that I feel good.  I am learning a lot about human nature.  Many people like being in a caretaker role. These same people are less kind to those that they see as having equal abilities.  I have heard other MG patients talk about how misunderstood they felt when people said that they look  good. People with invisible diseases are often met with disapproval for needing handicapped parking. We are seen as sleepy when our eye muscles droop. We are seen as soft spoken when our vocal cords weaken.

I have found that a good place to spread my recuperation wings is the grocery store. I go there at odd times to avoid crowds. The supermarket is an exercise opportunity. I reestablish my leg strength.  I can lean on the cart as I do my laps in the aisles.  Again , people were quite patient with me when they saw my oxygen tank or walker.  Without those devices, I have become simply annoying.  I am smiling on the inside because I am happy to not need assistance.  However I am aware of heavy sighs and eye rolls from others when I am slow.  Sometimes this hurts and causes me to feel inferior.  On other days, I let it roll off and I carry on.  Recently I had an encounter where a man put his hands at my waist and moved me to the side. This man’s lack of boundaries was so insulting.

I enter the store feeling okay. However this is a condition in which muscles are weakened rather than strengthened by use. After a few aisles of moving items from the shelf to cart, I begin dropping things. Repetitive motion is bad for this disease.  By the middle of the store, my double vision increases.  Stores use lighting for marketing.  This distorts my vision more.  Common items feel unusually heavy. IMG_7849 (2)When I can maneuver these items, I feel very proud. When I cannot, I have learned to ask for help. I am blessed with my helpful husband, family and friends.

As I wrap up my shopping trip, I choose the longest slowest line, so that I will not hold up the fast lane folks. I am pleased that we are living in the debit card era. This saves me from dealing with money with my weakened hand muscles.

I am aware of the sighs and the “get the lead out” mumblings when I am in the way of an impatient person.  I am more aware of how grateful I am to be out and about.  Thanks to treatment, I am doing so much more than I could do during the first years of my MG experience. I do not know how long this improvement will be here. This is known as the snowflake disease.  I know what it means to be thankful for one day at a time..one moment at a time.  I write these articles with other myasthenia gravis victims in mind. I like to share what I find helpful.  By sharing, we can be there for one another.