Chronic Illness and Value

FullSizeRender (2)“If you have your health, you have everything. If you don’t have your health, you have nothing.”  These words are part of a current commercial for a weight loss program. I blurted back at the TV, “I’m not nothing.”   Then I began to remember all of the times that I have heard people talk about the importance of having health.  GET WELL SOON cards fill sections at the supermarket.  Several of the Christmas cards that I received this year, said “HAVE A HEALTHY NEW YEAR.”  Healthy was double underlined.  I know that the intention  was kindness.  I also know that I felt a sense of failure because I cannot follow this directive.

Humans (& other critters) have value when they are impaired.  My health is diminished in several areas.  Myasthenia Gravis causes my eyes to droop.  I have double/ triple vision that is corrected with a prism.  It is difficult to speak because the muscles that move my larynx are quite weak. The muscles throughout my body are weak.  I am fatigued.  On a daily basis, I access my abilities.  I choose one thing to accomplish and I do it. Today my thing is this blog.

Chronic illness means that the symptom are ongoing.  I realize that many people see sickness as something that should be healed or cured.  Folks want there to be a food, surgery,  or exercise that will fix illness.

Yes, a positive attitude is beneficial.  Being hopeful is helpful.  Accepting limits is equally helpful.  Rather than waiting for a time of regained health, it is important to live each sick day to the fullest.  Chronic illness can be a time of gratitude and insight.  It is not necessary to wait to “get well’ to have value.

Equality is seen as an important for gender and race. We  have advanced our efforts in handicap accessibilities.  Acceptance of chronic illness may be next.  This does not mean giving up hope.  It means people will no longer believe or say, “If you don’t have your health, you have nothing”.









Myasthenia Gravis & Social Media

FullSizeRender (2)Myasthenia Gravis has had an impact on the way  I interact.  One of my early symptoms was hoarseness.  I had been hoarse off and on for a month.  One day, I attempted to change my voice mail message and found that I could not speak.  This was almost two years ago.  Since that day, my voice has been a scratchy whisper.  I have learned that this is due to my chest wall muscles being too weak to move my voice box.

My facial expression also has various stages of drooping, especially around my eyes.  Sometimes both eyes are almost closed.  At other times, my eyes are unequally open.  There is a prism attached to my glasses .  This prism corrects my double/ triple vision that is caused by MG.  The prism also interferes with eye contact and thus, interaction.

It is difficult for phone contacts to understand me and speaking exhausts me. Prior to this illness, I was quite interactive.  In addition to every day conversations, I participated in public speaking and teaching. Yes, I was the person at the podium.  My voice projected and filled the room. I also led guided meditations and relaxation techniques. I was praised for my voice. Clients requested and received my meditation tapes.  Now, I cannot speak.

All of these symptoms lead to my incredible gratitude for social media.  When I imagine times before social media, I cringe.  Isolation would have made this illness so much worse.  My connection to humans remains alive.  I have relationships with people that probably would have faded away without Facebook. I have access to other people’s interests and information. It is  good for me to be open to the opinions of others. Facebook keeps me interactive about other people’s families, pets, politics and fashions. This is so similar to conversations around the water cooler with colleagues. Facebook fills this gap for me.  I am also able to share myself via photos and written words.

My Etsy Shop! I love my little Etsy shop. Early on, in this disease, I felt an extreme need to be feel as if I am still a contributor.  In addition to my career in healthcare, I am an artist.  I do not have the stamina to show and sell my work in real life situations, as I once did, but I do have Etsy.  Etsy is the perfect little gallery for me.  I can work on my shop, when I have the energy. I can give it a break when I feel ill.  On Etsy, I do not mention being a sick person. I talk about making art.  In the forums, I meet other awesome artists. We share ideas & laughs. We play games.  I enjoy interacting with like minded people who understand how much art can fill us up  I attribute much of my happiness to this site. (JeriAielloartstore on Etsy)

Pinterest  is amazing.  Who knew there could be so much to learn about so many things?  I am thrilled to know that there are so many things to learn about. I have pinned interests to my boards. I believe a remission is in my future. I am looking forward to tackling some of these Pinterest ideas.

Twitter! Yes, I tweet.  One of these social media sites leads to another.  I came to Twitter to market my Etsy shop. It is good for that, however it also opened other doors.  I find people from around the world who share interests in nutrition, animals, music, art and more.  These tweets come and go quickly. Viva diversity.

Instagram brings even more photos and comments..more people’s talents and ideas. I came here to share the items on my Etsy shop.  I find myself also sharing pets, plants, food and ideas.  Before these sites, my international contacts were minimal. Instagram and other sites open doors to other cultures and I am grateful for this.

Tumbler is such a lively site.  I feel as if the energy sometimes bounces out of Tumbler and into me.  Tumbler is a youthful site that makes me smile. I share my Etsy items here.  I enjoy reading what others have to say.

Google plus is my most recent addition.  I have not yet explored all that it has to offer.  I do see great talents.  I am looking forward to getting to know the contributors and to contributing what I can.

Now I find myself in the world of WordPress.  This is my Blog. Prior to my illness, my computer skills were minimal. I did not have an interest in social media.  My time went to other places.  I started from scratch when it came to learning about navigating social media. I am continuing to learn. I am so grateful to be able to learn.  One of my early symptoms had been a cognitive deficit due to low oxygen in my brain.  It was hard to learn and think.  I am so thankful to be past that stage.  I am able to participate in current social media.  I am looking forward to what comes next.





Within These Limits

I have spent my life believing that humans could be pretty much limitless if they tried.  This belief is being challenged to the core on a daily basis.  I had been someone who accumulated degrees while working full time.  I parented, volunteered, made art and gardened. Others described me as burning the candle on both ends.  I thrived on activity and multitasking.

Two years ago, I abruptly developed severe symptoms of Myasthenia Gravis (grave muscle disease).  It became extremely hard to breathe and speak.  I know now that I had been experiencing lessor symptoms for a few years prior to this.

Grieving the losses of this disease is hard.  I remember saying to my husband, “I’m not smart anymore” ( 1+1 just didn’t =2).  I also developed double/triple vision.

I scooted to the back corner of my Zumba class because I could not keep up anymore.  I had been one of those rare creatures who loved exercise.  One day I gardened for about fifteen minutes. I was so exhausted that I just cried because I could not continue.

Art making, as I knew it, has stopped.  My hands no longer move and hold things in the same ways.

Within the horrible limits of this disease, I am managing to continue living a creative life.  Each day, I pick one thing that I will do and on most days I am able to do it. Today’s  one thing is to write this.  I am learning how to cope with the losses listed above.  A friend said to me, “You sure know how to make lemonade.” She is so wrong.  This is not lemonade.  It is lemons.  I am thriving in the lemons.

Future writings will touch upon finding alternatives to the ways I have done some things. It has been hard to make changes, but when I am willing to try to do things differently or partially, I find I may not have to let it go completely.