Tag Archives: ptosis

February, Season of Love

IMG_7824 (2)February causes me to think of spring and relaxation. I know many do not feel the same. I am aware of complaints about a long winter. Some report having an after Christmas let down. Yes, it is true that February sometimes brings heavy snowfall to my Chicagoland area. Our weather is plummeting toward  zero as I write this.  In spite of it all, I like February. For most of us, the Christmas trees are down and decorations are put away. The people who find Christmas stressful can put it behind them until next year.

A big holiday arrives tomorrow. Punxsutawney Phil, the groundhog, will step out to look for his shadow. If he does not see his shadow, we will have an early spring. What a lovely holiday.  I have never met anyone who feels pressured by Groundhog day shopping, office parties, or big holiday dinners.  We simply enjoy the antics of our friendly groundhog.  Of course, I did see an online post today that stated Groundhog day is not based on science.  Some yahoo believed he needed to point this out to the rest of us.

Another sign of spring/summer for me is the return of Dairy Queen. Our local Dairy Queen closes up for a few months every winter.  They always reopen in February. This is a promise of summer that makes me smile.                                                    FullSizeRender (2)

Valentine’s Day will be here in two weeks.  Again, we have a low pressure holiday that folks can participate in or not.  For me, Valentines become my featured items at JeriAielloartstore.etsy.com.  I created my new Valentines during December.  I began to feature them, the day after Christmas.  IMG_7874 (2) I have a lot of fun making seasonal art. Customers let me know that they like my Valentine earrings, necklaces and bracelets. A nice feature about heart shaped jewelry is that it looks great all year round. This is different than Halloween and Christmas styles that may be limited to that season only.

I also make heart shaped dream catchers. These make unique Valentines.    IMG_0029 (2)SAMSUNG CAMERA PICTURESLast year, A customer wrote me a letter about her  terminal illness.  She expressed gratitude and said the dream catcher was the perfect gift for her to give to her love on their last Valentine’s Day. I am touched and honored to have been a small part of their experience.  This was a profoundly meaningful interaction.  Working from a small at home studio leads to different kinds of customer relations. I have formed a nice friendship with a return customer from California.  As time passes, we find that we have much in common. When folks buy gifts, they sometimes write to let me know the recipient liked the present.

During this upcoming week, I will focus on Valentine products at JeriAielloartstore.etsy.com. I also offer a small selection at Artyah.com.  People with paypal can buy directly from me.  A small online business is perfect for me as I cope with Myasthenia Gravis. Sometimes I can work hard on my little shop.  Sometimes I cannot because of symptoms of this illness. Making art gives me a sense of purpose.  Being online keeps me connected when my illness isolates me.  I am moving on through February, the season of love.

 

 

 

 


 

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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.