Tag Archives: alternatives

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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NEW CANE (an aid for Ocular Myasthenia Gravis)

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.

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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.

 

 

Doing Art Differently with Myasthenia Gravis

IMG_0587 (2)My neurologist said,  “I wish that you could talk with all of my patients. Most of them give up and insist that they cannot do anything.”  He said this in response to my conversation about needing to be productive and contributing, in spite of physical limits. Well, I am not able to speak to his patients, but perhaps someone will read this.   My words of wisdom are: Find something that you love to do that has nothing to do with your career and do it.  It is important that this be something that you can carry with you into old age.  If you are not in the habit of having fun and caring for yourself, you will probably not begin to do so as an older adult.

My passion is art.  It has added balance and meaning to all stages of my life. My illness is Myasthenia Gravis. This literally  means grave muscle weakness.  MG is a chronic autoimmune neurological disease that is effecting many of my muscle groups.  My hands  and my eyes are effected.  My breathing, speech, and movement are impaired.

I recently spent ten days in ICU due to breathing impairment.  I received  IVIG treatments during this stay.  I brought beading supplies along.  My eyelids droop.  I have double/triple vision. I am able to create by touching and feeling the beads. A nurse exclaimed that she had been watching me through the ICU window.  She said,” You never looked at your beads while you made this necklace.”  I cannot do everything that I once did with art, but this is something  that I can do.  So I do!  This is the necklace that I worked on in ICU.  It carries a special meaning of gratitude for my life.FullSizeRender (2)For years, I used watercolors as my favorite medium.  I am not able to steady my hand and grip the brush to do what I like to do with watercolors. I can play with abstracts.  I have fallen in love with pencils. I make some exciting art with pencils.  I find that I can rest my arm on a surface and use pencils in a way that I cannot use other mediums. I go to a meditative state while rendering art.  I feel joy.  Sometimes I laugh when I think of what I might create in the future by combining my triple vision and fumbling hands.  The peppers are my beloved watercolor. Santa is rendered with colored pencil, my newer love.

It is not easy to just do art differently.  Sometimes general weakness prevents it.  I have had to give up some mediums completely because of my lung muscle weakness.  I cannot keep paint toxins in my environment.  I have experienced disappointment when dropping supplies prevents me from pursuing a project. When I cannot find alternatives, I grieve my losses. Even though it’s not easy, I can often find alternative ways to render art.

Another art adventure that has changed is the way that I display items.  I used to participate in art shows and local PowWows.  I do not have strength or stamina to do this anymore, but I found Etsy.  I can work on my shop in my jammies with my oxygen tank.  I can stop when fatigued.  Another part of me that I have lost due to lung weakness is my speech.  On Etsy,  I communicate online.  It is a place where I talk about art, not illness.  I love my little Etsy shop.  My shop helps fill my  need to be a productive contributor. (JeriAielloartstore on Etsy, that’s me.)