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.
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.
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.
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.
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. 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.
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.
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.
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.
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.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.)
“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 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 productive..to 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.
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.