HOPE

IMG_3943 (2)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.

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DOUBLE VISION LLLOOOOOOKKK!!! LLOOOKK! LLLOOOKKK!!! hEEELLLOOO! hhhEEELLLOOO!!

IMG_4007 (2)Entertaining myself with my double/triple vision is one of my perks.  Rooms fill quickly when I see three for one.  This includes people and objects.  Every evening, I view the same objects from the same distance to access my double vision. My doctor has directed me to do this. I do this with hope of seeing some improvement.  So far, there has been no improvement.  Sometimes when all of the objects overlap and multiply, I feel like I am privileged.  I have access to this wild and crazy animation that no one else can see.  If I hum the “Double Vision” song by Foreigner, my situation feels even funnier. Friends, don’t worry.  I have not gone totally cuckoo.  I simply need to use my sense of humor to get through some of my tough situations. Continue reading DOUBLE VISION LLLOOOOOOKKK!!! LLOOOKK! LLLOOOKKK!!! hEEELLLOOO! hhhEEELLLOOO!!

FAT

FullSizeRender (2)For my first six months of treatment for this horrific disease, Myasthenia Gravis, I strongly refused to take Prednisone.  I voiced my fear of weight gain and of developing a moon face.  A round face is a stereotypical side effect of prednisone.  At each neurology  appointment, I was advised to take this medicine.  I was educated about how it would help me.  I continued to refuse the medicine.  I agreed to all other treatments.

At the six month point, I needed to be hospitalized. I spent ten days in ICU.  My MG effects so many different muscles.  My eyes droop when fatigued.  Double vision is always present. My speech is raspy because my muscles are not able to operate my voice box.  My breathing is severely impaired do to weak chest muscles.  Because of these increasing symptoms, I finally decided to try the prednisone.

I started with low doses that were gradually increased.  I dieted and restricted my sodium.  I was so pleased.  I did not gain weight.  I actually lost a few pounds. This continued for six months. At the six month point, I needed another hospitalization.  My prednisone  was rapidly increased during a week of plasma exchange.  I immediately gained thirty pounds.  Each day I add a few more pounds.

In my illness, my immune system is producing antibodies that are harming me.  Prednisone suppresses the production of these antibodies.  This is why I have agreed to take the medicine.  I am currently going through a very slow dosage reduction. I understand that I will probably  always need some prednisone.

I have grown so fat. The fluid retention causes me to have a huge protruding belly.  My  swollen face is round and puffy .  I have fat pockets under my chin and around my neck.  Prednisone effects the appetite hormones.  I never feel full.

I am a person who loved to exercise daily prior to my symptoms.  I biked, walked, and used gym machines every day. I took zumba classes twice per week.  I have been directed to stop the exercise because this is an illness that is made worse by activity and made better by rest.  This is such a contradiction to my beliefs.  I had always been someone who pushed activity to the limit.  Losing the enjoyment of  exercise is another loss for me.  I am sure it is also contributing to this weight gain.

I am not sure what my future will be.  I recently attended an MG support group.  I sat with two obese men who reported that they have been off prednisone for a year.  They both said they are unable to lose the prednisone weight.  A woman  reported having lost her fifty pound gain during this past year since stopping her prednisone.  I also saw a social media post of a woman’s round, puffy face while using prednisone. She then showed her slimmer face, two months after stopping prednisone.  I am hopeful that I will be able to lose weight after reducing my dosage.  It is so different for everyone.

This weight gain has happened during the winter. I have been able to get by in sweats and jammies. It is now spring and I have outgrown all of my clothes. I recently bought a few extra large clothing  items.  I wanted to explain to people that this was not really me.  I believed that being overweight was always due to eating too much and exercising too little.  There have been some silly movies featuring people in fat suits.  This is how I feel about myself. I have never been the glamour girl type, but I have always cared about my appearance.FullSizeRender (10)

I am enduring an extremely slow reduction of medicine.  I am dieting.  My scale showed more weight gain today.  I refused Chinese carry out.  I watched my husband eat it.  I still gained.  Not fair!  I make spaghetti  out of zucchini.  I should lose.  Not fair!

Wouldn’t you think that I would be more upset by the life threatening symptoms that I have experienced?  It’s the weight gain that has me ranting.  My husband makes a statement that helps me keep this in perspective.  He tells me that he would rather have me be overweight and alive than slim in my casket.  He also frequently tells me that I am beautiful.  This helps so much while my self esteem is being chipped away by this disease.

 

 

 

 

 

 

 

 

 

 

Buddy, the Snowman! My Greeter and Patient Advocate

November was a difficult month.  I returned to the hospital for my plasmapheresis treatment.  This plasma exchange is a procedure in which my plasma is removed, cleaned and replaced. My illness is myasthenia gravis  My own plasma contains antibodies that are making me sick. A port was surgically inserted, so that I could receive the treatment for several days in a row.FullSizeRender (2)

I was discharged from the hospital, feeling weak and discouraged. When I arrived home, I found Buddy, the snowman, standing upon the patio table.  This was his first visit of the season.  He had a big smile and his arms were wide open to welcome me home.  He was donning a brand new hat and scarf.  He had a walking stick for his journey. Everything about him caused me to feel gratitude and joy.  The weather warmed and Buddy left.  He is a traveling man, but I knew he would return.IMG_2076 (2)

In early December, Buddy returned. His hands were on his hips and he did a little dance.  He wore the most flamboyant hat!  I could watch him through the window while he told me about his traveling escapades. IMG_2315 (2)Our weather has been mild this winter.  Buddy did not make it back until January.  He had his walking stick and he flashed that happy smile.  I noticed that he had eye brows this time.  He must have visited a spa. He collects new hats on his journeys and he is so excited to show them off to me. During January, I had been feeling extra sick.  My January visit from Buddy soothed me.FullSizeRender (2)

February, the month of love, arrived.  My husband, James, asked if I had looked out of the bedroom window. My surprise was another visit from Buddy. I was greeted by his loving snowman smile.  Buddy held a Valentine out to me.  He wore a beautiful new hat. I enjoy his fashion shows when he models his souvenir hats. FullSizeRender (2)

It is March.  Again, James asked if had looked out of the window.  Buddy has returned.  He has his walking stick and a cute new hat.  His facial expression is more serious than usual. Buddy and I know that when he leaves this time, he will probably stay away until next winter. He plans to be doing a lot of hat shopping and sight seeing.  We are wishing each other a great summer.  We will have lots of catching up to do next winter. FullSizeRender (2)

The story of Buddy is a love story.  It is the story of how loved I feel by my husband, James.  Not only  did he take the time to visit me in the hospital, he took the time to build me a snowman.  Not only has he taken over so many of the chores that I am not healthy enough to do, he has taken the time to build more snowmen.  All of the snowmen have stood on a table that I can easily see from the bedroom window.  On days when I couldn’t do much else, I could interact with Buddy.  Buddy and I love our James so much.

 

 

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.)