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I Am Old

I am old.  “You’re not old” “You’re as young as you feel”  “Age is just a number”  When people use these phrases, I don’t think that they realize how ageist the remarks are.  The implication is that young is better than old.

When I say that I am old, I say it with pride.  My message is that I am an elder.  I have wisdom that cannot be obtained any way other than by getting old. When I look at the wisdom that I have now compared to ten years ago, I smile.  On each birthday, I find that I have more insight than I had on the previous birthday. This is one reason that I continue to look forward to aging.  I use the word “old” freely.  Old is not a dirty word. It is just as lovely a word as young.  A ninety nine year old woman told me about her experience with a young person who said, “You’re not old”.  The ninety nine year old laughed and said to me, “What do I have to do to qualify?”

A few days ago, I heard a younger person say, “You are eighty four years young” to a man.  When he did not laugh, she repeated it loudly several times.  This guy remained civil, but I could tell that the man receiving this statement felt like rolling his eyes.  I did roll my eyes.  This is a statement that has irked me since I was a little kid hearing TV show hosts saying it.  The statement was followed by canned laughter. Again, it was implied that young is a better word than old.

Now that I am old,  this may sound like a defense.  However, I have always felt this way.  As a child, I admired my beautiful grandparents.  I learned from them.  I pass that knowledge along whenever I can.

I remember an incident that happened when I was in my twenties.  My coworkers, who were in their thirties and forties, were whining about aging. They did not like wrinkles or gray hair.  I stated my opinions about aging being a positive experience.  I was looking forward to the gifts that would happen at each stage of life.  These women told me that I was wrong.  They shook their fingers at me. They said, “Just wait until it happens to you, you will see.”  Well, they were wrong.  My well earned wrinkles are here.  I do color my hair.  I don’t do this to hide the gray hair.  I do it because it is fun. I have colored my hair since I was fifteen and I created my green streak, long before primary colors in hair became a trend.

I have always found it difficult to say “thank you” when someone says that clothes or a hair style make me look younger.  If they said “pretty” or “nice”, I would respond with a “thank you”.  Younger is a description, not a compliment.  Our culture is brainwashed into believing that a youthful appearance should be the goal.  This is all about money.  “Buy this goop & rub it on you.  You will look young.  Young is better, so buy some more.”  Phooey! An old face is every bit as beautiful as a young face. Wrinkles tell stories.

There are many ageist posts on social media.  I often see the post of old folks dancing. They put stupid hats and goofy shoes on the dancers.  They dance awkwardly. Do the people who send or enjoy these posts know any old people?  There are similar posts about exercise.  My husband and I have a good time in most situations.  We chuckle because younger people squeal that we are so cute.  We have a convertible car.  A neighbor said, “You two are so cute in your car.”  Cute?  Would they say this to a young or middle aged couple?

We sometimes hear old people described as one type.  They are like that because they are old.  This statement is not true.  The grumpy old man was probably the grumpy young man and the obstinate teenager.  Sweet, grateful old people often behaved this way when they were younger.  It is true that crises and loss can change people, but personalities stay pretty much the same unless someone works on changing themselves.  Old folks are as diverse as any other age group.  They have varying beliefs and talents.

There is a difference between being sick and being old.  Many grow old without being sick.  On the flip side, young people sometimes become sick.  I have dealt with some serious illness that I did not want.  Younger people said , ” It is tough getting old” in response to my illness.  It has been important to me to clarify that they are seeing sickness, not age.  Another cliché that I often hear is, “Honey, don’t get old”.  Have they considered the alternative?

Long ago, I had a teacher who was preparing to retire.  It was important to her to mentor as well as teach her subject.  She stressed the importance of developing interests and talents that had nothing to do with a chosen career. She said that if people neglect this, they will be less likely to find a hobby when they retire.  I admired this white haired lady and I followed her advice.  For me, art has always been important.  It has been with me from childhood through retirement,  My career has been in healthcare.  I enjoyed diversions during my off time.  I definitely pass this advice on to anyone who cares to listen. Whatever your job is, do other things for fun that will carry you into retirement.

In several Native American nations, people are not considered adults until they are fifty one years old.  Until then, it is o.k. to fumble and make mistakes, as one finds their way around the medicine wheel.  In this belief system, people should not give advice until age fifty one.  At fifty one, we become wisdom keepers.  It is not only o.k. to give advice, it becomes a responsibility to pass along, to mentor.  You have no idea who may be helped by you.  My retiring college teacher from decades ago did not know that I would mentioning her forty six years later.

Readers: If you are young I hope you watch and listen to the elders in your life.  See how it fits and then move on to be exactly who you are.  If you are old, be grateful to be here.  With pride, see yourself as a wisdom keeper.  Share and mentor when you can.  I am old.

 

 

 

 

 

 

 

 

 

 

What’s Happening at JeriAielloartstore.etsy.com?


 

 




FullSizeRender (2)  In our region, we are told that if the month of March comes in like a lion, it will go out like a lamb.  This prophesy tells us that the opposite is also true. Today is March 2nd.  Yesterday, March arrived with cold, windy, rainy weather.  This leads me to believe that March will leave us on a warm, sunny day.

March is fun for me at my little art shop.  I enjoy making items with a theme. March has celebrations.  Folks certainly enjoy sporting green colors for Saint Patrick’s Day events.




IMG_8132 (2)  My Saint Pat’s jewelry features shamrocks amidst a variety of pretty green beads.  There is also an abundance of lovely green jewelry that that looks great year round.  My fun comes in the making of these creations. These are one of a kind originals.   My customers will not see themselves coming and going.  For each special occasion, I also make a little something special for myself.  I like to wear seasonal jewelry.  I often forget that I am wearing my art until I get a compliment from the people I encounter.  I guess I need to carry business cards when I go out, so that I can be a walking, talking ad.  My Saint Patrick’s items are always available, however I will stop  promoting these goodies after next week.  This will give the post office plenty of time to get purchases where they need to be.

The remainder of March will focus on Easter in my shop. IMG_8133 (2)The Easter jewelry is whimsical and cheerful.  The Easter animals are enjoyed by  critter lovers during all seasons.  I love return customers.  Repeat customers mean that I am doing a good job.  Last week, I sent this little Easter lamb set to a lovely return customer.  We have grown to know each other via Instagram. I am happy that this sweet set has found a home with her. She notified me that she loves it.  IMG_8134 (2) I offer more than jewelry during Easter season. There is a handmade dream catcher with Easter egg beads and a long Macaw feather.  I have a similar one hanging in my home. IMG_8135 (2)  I also offer my framed original abstract painting of the Easter Bunny.  Rabbit lovers admire this one, especially during spring.  The painting is another creation that is nice for all seasons.  I will stop promoting Easter as we begin the last week of March.

Moving from the Lion days of March to the Lamb days of March keeps me aware of how much our seasons bring us.  I feel grateful for these symbols of spring and I enjoy passing some of my joys along to others.

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Free Postage?

Can you imagine what would happen if  I went to the post office and said, “Will you please mail this for free”?  Yet those of us, who are artists on e-commerce websites are encouraged to do this to draw customers.  I can understand why  these sites encourage this. When makers offer free postage, it is assumed that they will increase the price of their item to make up the loss.  E-commerce sites get a tiny percentage for each sale.  Last year, one of the larger sites had over 1.7 million sellers.  That adds up.  The site will certainly make a profit from this.  The manipulation is wrong.  I feel like the  site is attempting to manipulate me.  I choose not to manipulate my customers.

This is a difficult situation.   My prices are already reasonable.  I hear this from my customers.  I charge for the cost of my supplies and I have a slight charge for my time.  I definitely make less than minimum wage.

My biggest selling items are jewelry.  I package with a gift box wrapped in  recyclable bubble wrap. This goes into a manila envelope.  For quite some, these packages cost $2.67 to mail.  I charged $3.00 postage for this size item.  This gave me thirty three cents for the box, envelope, bubble wrap, and my trip to the post office. I lost money on a regular basis.FullSizeRender (2)  Last year, The postal service increased to $3.00 for the same sized envelopes.  I raised my postage to $3.50. The fifty cents is a little more fair to me. The fifty cents goes toward the cost of my trip to the post office, and my packaging supplies.

2018 is here.  Again, postage went up to $3.50 for my packages.  I am increasing my shipping and handling charge to $4.00 to help cover my costs. Changing these prices on my site takes time. I will be gradually doing this as I add new things and as I renew seasonal items.FullSizeRender (2)

I am aware that people who are focused on profit and marketing will critique me negatively.  There are types who believe fooling others by saying, “free shipping” is a good business move.  I am proud to say I am not that type of person. I am not Amazon.  I am an old lady working from a tiny studio in my home. I love creating art.  I would be making things whether I sold my creations or not.  I will continue to respect my customers.  I will be honest.  I will continue to live by my life values.

 

 

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.

 

 

 

 


 

Being Slow in a Fast Moving World

Myasthenia Gravis (MG) has slowed me down. MG is an autoimmune neuromuscular disease that effects all of my muscles. The effected muscle groups fluctuate. The muscle weakness is made worse by use. Resting the muscles sometimes helps for a while.

I am moving into my fourth year of coping with this disease.  This is a chronic illness. There is no cure, but there are treatments.  I am grateful to say that I am benefiting from treatment.  During my first year with MG, I tugged an oxygen tank and needed a walker or wheel chair to get around.  I now usually need oxygen only during the night.  I swallow a handful of pills a few times per day (immunosuppressants & anticholinergics).  Every three weeks, I spend a day at the infusion center for IVIG treatment.

With this help, I am getting around better.  I move around independently.  I can often socialize for about two hours.  At the two hour point, my double vision becomes extreme.  I drop things.  My voice weakens.  I become very embarrassed of these symptoms.  But, the important thing is that I feel pretty normal during those first two hours.  During those times, I feel like the woman that I used to be.  I was a multi tasking professional.  I met deadlines and productivity expectations.  I was active , fun, and helpful.  I mention this because I think many of us mistakenly believe that active people do not get sick.  We do.

Now meet the slow me.  I repeatedly find myself in this scenario.  I stand at the curb of a street or parking lot, waiting for a long break in traffic  A car will stop and motion for me to cross.  I shake my head “no”.  They stubbornly stay there and continue to tell me to cross. This type of person often has a big grin on their face.  To me, this grin says,  “Look at what a nice person I think I am”.  If I give in and begin my slow trudge across the street, the driver’s grin becomes a frown.  I cannot move fast.   The driver begins waving their hand quickly in the direction that they want me to move.  This could all have been avoided if I could have simply crossed the street during a traffic break.  I am learning to ignore these yahoos that insist I cross, in spite of the nasty face that they might make.

My MG is now an invisible disease. I am currently not using a walker or oxygen when I am out. This does not mean that I am healthy or that I feel good.  I am learning a lot about human nature.  Many people like being in a caretaker role. These same people are less kind to those that they see as having equal abilities.  I have heard other MG patients talk about how misunderstood they felt when people said that they look  good. People with invisible diseases are often met with disapproval for needing handicapped parking. We are seen as sleepy when our eye muscles droop. We are seen as soft spoken when our vocal cords weaken.

I have found that a good place to spread my recuperation wings is the grocery store. I go there at odd times to avoid crowds. The supermarket is an exercise opportunity. I reestablish my leg strength.  I can lean on the cart as I do my laps in the aisles.  Again , people were quite patient with me when they saw my oxygen tank or walker.  Without those devices, I have become simply annoying.  I am smiling on the inside because I am happy to not need assistance.  However I am aware of heavy sighs and eye rolls from others when I am slow.  Sometimes this hurts and causes me to feel inferior.  On other days, I let it roll off and I carry on.  Recently I had an encounter where a man put his hands at my waist and moved me to the side. This man’s lack of boundaries was so insulting.

I enter the store feeling okay. However this is a condition in which muscles are weakened rather than strengthened by use. After a few aisles of moving items from the shelf to cart, I begin dropping things. Repetitive motion is bad for this disease.  By the middle of the store, my double vision increases.  Stores use lighting for marketing.  This distorts my vision more.  Common items feel unusually heavy. IMG_7849 (2)When I can maneuver these items, I feel very proud. When I cannot, I have learned to ask for help. I am blessed with my helpful husband, family and friends.

As I wrap up my shopping trip, I choose the longest slowest line, so that I will not hold up the fast lane folks. I am pleased that we are living in the debit card era. This saves me from dealing with money with my weakened hand muscles.

I am aware of the sighs and the “get the lead out” mumblings when I am in the way of an impatient person.  I am more aware of how grateful I am to be out and about.  Thanks to treatment, I am doing so much more than I could do during the first years of my MG experience. I do not know how long this improvement will be here. This is known as the snowflake disease.  I know what it means to be thankful for one day at a time..one moment at a time.  I write these articles with other myasthenia gravis victims in mind. I like to share what I find helpful.  By sharing, we can be there for one another.

 

 

 

 

 

 

JeriAielloartstore

Here is a glimpse of the shipping and handling department at JeriAielloartstore.etsy.com.  (tee hee)  I get such a big kick out of seeing my little packages traveling all around the country.  Two items have left the country. One necklace has crossed the pond.  Whenever a customer lets me know that they loved my creation, I smile.  Return customers are validating.  My muscle disease, as well as the nature of art can be isolating.  My trips to the post office are a big deal.  I experience the postal staff as colleagues.

I have a map posted above my desk.  When I sell to a state, I color it.  Dots with numbers show multiple shoppers in a state.FullSizeRender More fun for me!

Yesterday I made a post to my wordpress blog.  I perhaps pushed a wrong button  because the post shows as a separate page called “Making Art”.  It appears that today’s writing is linked to my previous blogs, as intended.

I don’t expect to return to this blog until after the Labor Day weekend. Tomorrow,  I am going for my all day IVIG infusion. I usually am sick for two days following treatment.  It is worth it because I will be stronger for three weeks when it will be time for another infusion.  It is time to start thinking about what my recuperation movies will be for the weekend.

 

COPING WITH MYASTHENIA GRAVIS (SECTION FIVE, TIPS TO HELP MAKE LIVING WITH MG EASIER)

 

 

The abbreviation for Myasthenia Gravis is MG. The nick name is snowflake disease because symptoms vary so much from person to person. Also, symptoms vary and change within the same person. Previous articles describe  symptoms, diagnosis, and treatments. Now  I will focus on getting by from day to day.  This chronic disease  changes everyday life.

KEEPING ITEMS IN REACH, CONSERVES ENERGY. The muscles that help me bend down and reach up do not work well. Some times it is more difficult to maneuver than others. It helps me to be prepared. Keeping dishes, food, and other kitchen items in easy reach helps.  Keeping things in the same place in the refrigerator and cabinets saves me when I am having a bad day.  At times , I cannot lift and use ordinary objects. Having the milk opened and poured into a smaller container is a great help.

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It helps to have heavy items opened and put into light containers

During the first year of my illness, I was unable to shop independently. I learned so much about accepting and asking for help. Tackling the grocery store has been a learning experience.  I find grocery carts to be  helpful.  I can lean on the carts to make the challenge easier. Carts help me with strength and balance.

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fridge bag for the store

It helps to have the groceries that need refrigeration put into the same bag.  Other stuff can wait in the car until  I have a helper. I am finally learning that being able to  tackle the store today does not mean I will be able to do it do it tomorrow.

SHOWERING DEPLETES ENERGY FOR ME. I am able to bathe and shower independently much of the time. Some folks may need medical equipment and a person to help with bathing. Sometimes I don’t have the strength to shower. At those times, I make do with a sitting sponge bath.  Showering requires planning for me.  Gone are the days of a quick shower before an event. I have learned to shower the night before an event. I find that if I put my effort into the shower before an occasion, I will not have strength  left for the occasion. The motion of raising my arms and moving my hands to wash my hair depletes my muscle strength. My arm, leg, and breathing muscles quickly become  weakened. Using a large towel to absorb the water saves the energy needed to pat yourself dry.

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Keeping a big towel near helps conserve energy

MY SPEECH IS IMPAIRED. Different degrees of speech loss are part of my illness. During the worst of times, nothing happens when I open my mouth to speak. At better times, my voice sounds deep and raspy as if I had a cold. Pushing this makes it worse. This is due to my breathing muscles not being strong enough to move my vocal chords. Resting these muscles is important.  My  speaking abilities are sporadic. My family and friends understand this loss. It is frustrating when others do not get it. I have had people ask me to speak up or repeat myself when I cannot  speak. Talking on the phone is no longer a communication tool for me.  I am so grateful to be living in the digital age.

RESTING MUSCLES IS NECCESSARY. I have been a slow learner when it comes to  learning about the importance of muscle rest.  When an MG patient over exerts their muscles, harmful antibodies get confused and rush to help.  This harms the MG patient.  They become sicker and weaker.  This statement is over simplification, but it helps me to remember to pace myself when I am feeling good. Prior to this illness, I was a multi tasker who pushed activities to the limit. Changing this behavior has been very difficult.  I ended up inpatient in the hospital four times last year because my breathing muscles were seriously impaired.  This is when this disease becomes life threatening.  It is easy to remember to stop activity when I feel sick.  It is hard for me to remember to stop when I feel good.  I miss exercise! At this point, my doctor says that I am too fragile for physical exercise.  MG is so different from other illnesses.  I suggest that each patient checks with their own doctor about the safety of exercise.

MY SELF ESTEEM WAS ATTACKED by this illness.  Prednisone and other steroids are usually  a first line of treatment to help with muscle strength. A side effect is a huge weight gain.  I quickly developed the stereotypical moon face as a side effect. To treat my double/triple vision, I was prescribed stick on prisms for my glasses.  I found myself obese with goofy glasses and a crackling voice.

One of my first MG symptoms was double vision. I was still working when I received my prisms. My prisms helped.  I was overjoyed to be able to see again. I was not diagnosed with MG yet.

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MG medicine causes weight gain
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My clothes don’t fit due to MG weight gain

 

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Stick on prisms for my glasses

I wore my stick on prisms for about two years because I mistakenly believed my double vision was temporary.  My vision changed frequently. Prisms can be ground into regular glasses, but I did not want the expense of new glasses every couple months  Last summer I finally had prisms ground into my glasses. I like my frames and my lenses appear normal.  This has been a great boost for my self esteem.

Someone suggested that I try a resale store to look for clothes after my giant weight gain.  This was a life saver for the budget because none of my clothes fit. I see the weight gain as temporary.  My steroid prescription is being reduced. I am down about twenty pounds now.  Since I cannot exercise to lose pounds, it is extra hard to manage weight loss..  I would suggest limiting sodium to others who are facing this problem.

I had mentioned that I miss using nail polish. Those chemicals make my breathing worse. My friend sent stick on nails to me. Tada! This was a great self esteem boost.

This article addressed some of the concrete challenges that I have faced as a Myasthenia Gravis patient.  I have acquired these coping tips as I struggled with Mg obstacles. I am blessed to have an awesome husband who helps me every day. I have friends and family who help. I am learning how to ask for what I need.

The next chapter will deal with less tangible challenges. Grief, loss, fear and depression can be part of the illness. In my next article, I will pass along some ideas for dealing with funky feelings.

 

MG & ME (SECTION FOUR, MY PERSONAL EXPERIENCE WITH MYASTHENIA GRAVIS, THE SNOWFLAKE DISEASE)

The first three sections of this Myasthenia Gravis article were based on facts and researched medical information.  This section is about me and my reactions to the losses caused by this disease.  I have been coping with MG for the past three years; actually many symptoms were here for a year before I actually collapsed.  I had been dealing with my symptoms with denial and rose colored glasses.  I insisted that I wasn’t feeling “that bad”.  Most of us tend to deal with big obstacles by using whatever coping tools have worked in the past. I tried forging through with a positive attitude.  I later learned that I was making myself sicker by pushing it with activity.  If you are an MG patient or if you are reading this with a patient in mind, your snowflake experience may be very different than mine, that is why MG is nicknamed the snow flake disease.  We are similar, yet different.

My eye muscles were the first muscles that I noticed weakening.  My eye problems began about four years ago. At that time, my eye difficulties were fleeting.  They would come and go. Sometimes it was hard to open my eyes.  One or both lids would droop (ptosis). I saw my long time family doctor about this.  There was no conclusive diagnosis or treatment at the time.  Double, triple, and overlapping vision (diplopia) began about four years ago.  It was also off and on.  At church, I would see several priests, crosses and statues. I would see several of the same characters and objects in movies. This began to happen in traffic, so I went to see my ophthalmologist. He examined me and referred me to a neuro opthalmologist. I am fortunate to live near an urban area with large medical centers because this is a rare specialty.  During my first appointment, I was fitted with stick on prisms.  These pieces of plastic clung to my glasses and immediately corrected by double vision. I was so thrilled and grateful to be able to see. fullsizerender-2 I went to work the next day rejoicing about my improved vision.  The neuro ophthalmologist assessed that my eyes were out of sinc. The left eye moved much more slowly than my right eye.  I had difficulty following his fingers.  This doctor ordered an MRI of my brain and a variety of blood tests. He was concerned about Myasthenia Gravis or a brain tumor. Test results were not conclusive. I did not freak out about the possibility of a serious diagnosis.  I remained in la la land and was thrilled with the benefits of my prisms.  I continued to use my cling on prisms until a few months ago because my eyes have changed so frequently and so drastically during this past four years. I kept my stick ons because I did not want to need new glasses every few months. My stick ons look goofy, but I really did not care. The improved vision out weighed my appearance. I now have glasses with ground in prisms. These glasses do not look unusual. Sometimes the prisms work. Sometimes they don’t. At times, I need to keep my left eye closed or covered. That’s the nature or being a snowflake.

As my vision decreased, I was also losing my stamina. I remember a specific day in my garden.  I could not use the muscles in my hands and I was terribly exhausted after fifteen minutes of weeding.  I used to love to spend entire days gardening.  I cried that day and said I was out of shape.

I had been in the same Zumba class with the same teacher and classmates, twice per week, for a few years.  I was unable to keep up.  I found myself slipping closer to a back corner of the gym.  I am someone who loved exercise. I used the elliptical machine or rode my bike daily. I live near beautiful path that I walked several times per week. I participated in lots of 5K fund raising walk/runs. One by one, these activities became more difficult. I replaced some of these workouts with easy exercise videos. I did not know yet that I was harming myself with exercise.  We live in a society that promotes exercise for everything.  Exercise is good for most conditions.  It is often not good for Myasthenia Gravis.  Exercise that weakens muscles exacerbates MG.  Sometimes the harmful antibodies rush toward the exerted muscles and attack.  I did not know yet that  I had MG. I kept trying to push my limits.  I had never been good at accepting limits.

I was simultaneously having cognitive problems. I was saying that I just wasn’t smart any more.  I am someone who has always loved to read. I was dealing with a problem that was very different than my vision difficulty.  I could see individual words, but I could not make sense out of sentences and paragraphs. This was frightening. I later learned, from my neurologist,  that this was due to low oxygen in my brain. I was unaware that I was having breathing and lung problems caused by MG.

I continued to go to work. After work. I would then collapse on my couch with my head tilted up to breathe. Sitting on the couch felt like I was running.  At work , I was very short of breath after walking a short distance.  I was embarrassed and tried to find places to be alone to catch my breath. I continued to call myself “out of shape”.  I made an appointment with my long time doctor.

My doctor’s appointment was scheduled.  I was at work when I picked up the phone and found that I could not speak.  My voice was a raspy whisper. I shrugged it off as laryngitis and decided that I was catching a cold.  Three years later, my voice is still a raspy whisper. When I kept my doctor’s appointment, I was sent for a chest x ray, chest ct scan, and a pulmonary function test. These tests showed severe lung impairment. I was also tested for the need for oxygen.  My saturation levels are very low.  I was prescribed oxygen.  I have an oxygen concentrator in my home and tanks  for when I go out.  This was three years ago.  I was recently retested and I am directed to continue my oxygen.fullsizerender-2

I began pulmonary rehab, which consisted of exercise machines.  I did quite well, but my oxygen levels dropped in response to activity.  My fellow rehabbers oxygen saturation went up, as it was supposed to. I was also prescribed additional pulmonary meds and treatments. Pills, nebulizers, and inhalers were part of my daily routine during that first year.  One by one, these lung treatments were eliminated as it became clear that my lung weakness was due to chest muscle weakness , rather than lung disease.

I continued to weaken.  A walker and wheelchair were needed. Needless to say, I could no longer work. At this point, I returned for an appointment with the neuro ophthalmologist. When he saw my breathing difficulty combined with double vision, he said that another assessment for Myasthenia Gravis was needed. I saw a neurologist who gave me a thorough neurological physical exam.  I felt that someone finally got it.  He connected all of these seemingly unrelated symptoms and said , “I think you have Myasthenia  Gravis”.  He directed me to stop the pulmonary rehab because the exercise was making me sicker. My breathing  difficulty was due to MG breathing muscle problems rather than lung disease. Of course, he needed more evidence than his exam. Brain and spinal MRI’s were completed, as well as more blood work. All of those tests were uncomfortable. The test that gave the absolute diagnosis of Myasthenia Gravis was the single fiber EMG.  It was a very painful and lengthy test.

I was sent to an ENT because of my difficulty speaking.  I saw him several times for testing. My vocal chords were fine. This confirmed that my difficulty speaking was caused by my breathing muscles being too weak to move my vocal chords.

Now that I had an absolute diagnosis, treatment began.  I was started on Mestinon, a common pill for this disease.  Over the months, my dosage increased. I felt an improvement of energy and strength. I now take a large dosage of Mestinon, four times per day.  A tolerance for Mestinon is diagnostic in itself.  If someone does not have MG, they will feel ill in response to the medicine. I soon felt almost normal for about one month. This crashed. All my muscles weakened. I could not grasp things. My legs lost their strength.  My breathing and vision worsened.  This lead to a ten day stay in ICU in the hospital.  I was told that I may need a respirator.  I was treated with with IVIg infusions.  By the 5th day, I was feeling stronger. On the tenth day, I was able to come home.fullsizerender-2

Until this point, I had strongly refused Prednisone, a steroid that is often used to treat MG. I did not want the side effects.  My stint in ICU had been so frightening that I followed my doctor’s advice and began prednisone. I started with small doses that were gradually increased.  One of my side effect fears happened: weight gain and fluid retention. I gained sixty pounds and developed the stereotypical moon face that happens with steroids. I needed the strength provided , in spite of these side effects.  For that last several months, my prednisone is being gradually reduced.  I now take no prednisone every other day.  The opposite day is a low dose.  I am eager to be free of steroids, but grateful for the strength this medicine has given me when I was unable to do things on my own.

Five months after my ICU hospitalization, I was sent to an MG specialist for a consultation.  He hospitalized me right away. This was a five day stay. This time my treatment was Plasmapheresis. An indwelling catheter was surgically placed in my clavical area. In this plasma exchange, my blood was removed, my harmful plasma was removed and replaced with artificial plasma.  This is an over simplified description, but it is basically what happened.  I was then started on a medicine called Imuran. I had a terrible reaction to Imuran that lasted for a week. This medicine was stopped.  I did not feel much benefit from Plasmapheresis.  I try to think that I would have been sicker without it. FullSizeRender (2)

Two more hospitalizations were needed for IVIg and IV steroids.  I am now on a new regime.  I am excited and hopeful.  Every three weeks, I go to an out patient infusion center for one day. It is a comfy room with a lounge chair and TV.  I have been there three times. The day of and the day after, I have felt ill. This has been due to my body being swarmed by the immune globulin of a thousand different donors. This has been followed by feeling pretty good for two weeks.  My voice has even been stronger.  At the end of the second week, I have started to fizzle out. By the time I have shown up for the next infusion, I have been weak and raspy. However each infusion has really helped.  If I continue to weaken at the two week point, My doctor will change my interval  to 2 1/2 weeks.  However, he says that each infusion will last a little longer.  The plan is for out patient IVIg to be ongoing.

My purpose in writing these articles has been to help anyone effected by Myasthenia Gravis.  This chapter has told the events of my journey with MG.  My next chapter will cover emotions.  I will share tips for making tasks easier. I will talk about mistakes that I have made and the lessons learned. Gratitude and hope  are also a part of this journey.  I’ll see you in Chapter Five.

 

 

 

 

Myasthenia Gravis, The Snowflake Disease(section three, diagnosis and treatment for Generalized Myasthenia Gravis)

Section two in my articles about Myasthenia Gravis focused on Ocular MG.  This section is about generalized Myasthenia Gravis.  However, the majority of patients with generalized MG also have ocular MG. I am hoping to help my fellow snowflakes and those who care about them.  My articles are also geared toward nurses and allied health care workers.  Unless a healthcare provider works in this specialty, they may only see this disease once or perhaps not at all.

Autoimmune MG is an acquired disorder.  Acetylcholine receptor antibodies attack the neuromuscular junction causing muscle weakness throughout the body.  The severity of the disease and the muscles effected vary from person to person and from day to day.  This is why the nickname for this illness is the Snowflake Disease. All voluntary muscle groups can be effected.  We do not know what causes MG.

With MG, muscle weakness worsens with activity and improves with rest.  When someone presents with the symptoms of MG, the doctor will probably order an anti acetylcholine receptor antibody blood test.  This test will show antibodies that attack acetylcholine receptor sites.

Another test is the Tensilon test.  This is given intravenously.. During he test, acetylcholine acts on the receptors.  If an individual has Myasthenia Gravis, they will show improved muscle strength in response to this test. A positive test leads to a diagnosis of MG

Through a repetitive nerve stimulation test, a neurologist can diagnosis MG by looking at patterns.  Another test, the single fiber EMG, is helpful for patients who have had negative results with other tests.

A CT scan of the thymus will probably be administered. 15% of people with Myasthenia Gravis have a thymoma, a tumor of the thymus gland.

I also discussed the above tests in Section Two when I focused on Occular MG.  The doctor will probably order consultations with a variety of specialists. A Neurologist will hopefully be leading the treatment team.  He will begin with a physical exam.  This exam will vary depending on which muscles are fatigued. The eyes will be observed.  The ability to open and close eyes will be tested.  Hand grips and the ability to raise arms will be measured.  Leg strength will be tested.  Shallowness of breath and speech difficulty will be observed.

A Pulmonologist will probably be needed for those times when the breathing  muscles are weakened. A Neuro opthamologist will be very helpful for eye and vision issues.  Neuro opthamology is a unique specialty that may not be available to all patients. An ENT may needed to assess speech problems.  Social services may be needed to assess what tasks a person needs help with.  Physical and Pulmonary therapy must be chosen with extreme care.  These specialists must be aware of what Myasthenia Gravis is.  If an MG patient is pushed to increase activity and exercise, they will usually get worse.  This is the opposite of what most other conditions need.  A psychotherapist who is familiar with chronic illness issues may be needed.  The inactivity and isolation caused by this disease can easily lead to depression.  There may also be consultations and diagnostic tests ordered to rule out other diseases.  This will vary from person to person.

Once the diagnosis has been completed, treatment begins.  Self care will be the first line of defense.  A healthy diet, high in potassium, will help decrease weakness.  Lots of rest is needed.  Over exertion causes weakness to increase. Weather effects MG.  Hot weather and cold weather make symptoms worse. A medical alert bracelet or an information card can be very helpful.

For those 15% of MG patients with a thymoma, a thymectomy (surgical removal of the thymus) may be chosen.

Most people will be started out with an Anticholinesterase drug.  Pyridostigmine bromide (Mestinon) is one of the drugs in this group.  This is not a cure for Myasthenia Gravis.  It can provide a short term boost in strength and energy. Tolerance for Mestinon is diagnostic in itself.  If someone does not have MG, they will have abdominal illness in response to taking Mestinon.  Dosages and frequency vary from person to person. Dosages will probably change for the same patient from time to time.

Many long term treatments may be tried in an attempt to get a remission. Immunosuppressive drugs are often used to treat Myasthenia Gravis.  Some of these drugs are Imuran, Cellcept, Cytoxin, Cyclosporine, and Prednisone.  These medicines are each unique.  The doctor will decide which medication is best for particular patients.

A temporary treatment is Plasmapheresis (Plasma Exchange).  In this procedure, both “good and bad” antibodies are removed. The cells are returned in artificial plasma. This is usually done once per day for five days in a row.  The patient usually feels better a few days after treatment. The benefit lasts for a few weeks.  This is very helpful for emergencies.  It is not recommended as repeated long term treatment.

IVIG is another temporary treatment. Gamma globulin is administered via an IV, over a period of sveral hours  This therapy may occur in a hospital, an infusion center, or a patient’s home.  IVIG is thought to suppress the immune system and increase muscle strength.

The above are common tests and treatments for people with Myasthenia Gravis.  My purpose in writing this series is to help. Perhaps on patient, caregiver, student, or healthcare worker will be helped by my information.  These first three sections have been objective and factual.  Section Four will be subjective. I will be writing about my personal  journey as a Myasthenia Gravis patient.

Sources: The Myasthenia Gravis Foundation of America, Myasthenia Gravis Foundation of California, Eye Wiki American Academy of Ophthamology,  Conquer MG of Il, Fellow Snowflakes, My treatment team members

 

 

Myasthenia Gravis, The Snowflake Disease(section two, diagnosis and treatment for Ocular Myasthenia Gravis)

This article is second in my series about Myasthenia Gravis. I am targeting  patients and their caregivers, nurses, and allied health professionals. I hope this helps anyone with an interest in the topic. I am an RN and psychotherapist, as well as an MG patient.  I had planned to follow up on section one much more promptly, however I was hospitalized again with an exacerbation (flare up of breathing weakness) due to this disease.  This section will focus on diagnostic tests and treatments.  If you are a patient, your doctor will prescribe what is needed for you.  MG’s nickname is the snowflake disease because symptoms vary so much from person to person.  Also, a patient’s  symptoms can change quickly.  If I have had these diagnostic tests or treatments, I will share a personal experience comment.  Please remember that we patients are as diverse as snowflakes and our experiences vary.

Over two-thirds of Myasthenia Gravis patients experience ocular symptoms before they experience other MG symptoms.  Half the people with ocular symptoms will develop generalized muscle weakness in the first two years of their ocular symptoms. (This is true for me.  I had eye symptoms for one year prior to developing generalized MG). Fifteen per cent of people have only ocular problems.  If someone has only ocular MG for four years, they will probably not develop generalized MG.  Eye muscles are usually involved in Myasthenia Gravis, however a few patients do not have ocular symptoms.

These are tests that are often given to an individual with ocular MG symptoms. The anti-acetylcholine receptor antibody is a blood test that is usually given for both ocular and generalized MG. Your doctor will determine the need for some or all of these other lab tests: Anti-striated muscle antibody, Anti-Musk antibody, Anti-lipoprotein 4 antibody and Antistriational antibody (These lab tests are similar to other blood draws.  I did not find them difficult, but these tests would be traumatic for people who do not do well with needle sticks.)

These vision symptom may appear in other diseases, therefore tests to rule out other diagnoses may be administered. A brain MRI is helpful. (This is a noisy test and the MRI equipment is very close to the face.  Meditation gets me through this.) Claustrophobic patients may need an open MRI. Sometimes the doctor will prescribe an anti anxiety medicine to be taken prior to the test.

Patients with ocular Myasthenia Gravis e an abnormal single-fiber EMG.  In this test, a recording needle electrode is inserted into the neuromuscular junction.  This test is different than a regular EMG. This test should be administered by a doctor with extensive experience.(This test was very painful for me when done on my eye area nerves and muscles. In retrospect, it was worth it because it was conclusive in diagnosing my MG.)

Of course, the skills of the ophthalmologist  are very important in diagnosing and treating ocular MG.  A neuro ophthalmologist should be involved.  There are not many of these specialists.  (I live near a large city and I am fortunate to have this kind of specialist on my team.)

A variety of interventions can help the patient with ocular MG.  A patch on one eye helps  a person with double vision.  Prisms that cling to regular glasses are an inexpensive way to treat double vision.  Prisms can also be ground into glasses.  (Both types of prisms have helped me.) Eyelid crutches are sometimes attached to glasses to help lift drooping eyelids. A special tape can also be used to lift drooping eyelids. Dark glasses can be helpful.  As the day progresses, symptoms usually worsen. Rest may help eye symptoms.

MY REGULAR GLASSES AND SUNGLASSES WITH STICK ON PRISMSfullsizerender-2

Medicines that may be prescribed are drugs that alter the immune system such as prednisone (I have needed prednisone in varying doses.), Imuran (I had a severe negative reaction that lasted for about one week. but this drug does help many MG patients.), Cyclosporine and Cell Cept.  These drugs are quite a mouth full, but after a while they become common language for MG patients.  Mestinon is a different drug classification.  It improves neuromuscular transmission.  It helps relieve drooping eyelids. (I have been helped by varying doses of Mestinon throughout my illness.)

My next chapter in this MG series will address diagnostic tests  and treatments  for generalized Myasthenia Gravis.

Sources: The Myasthenia Gravis Foundation of America, University of Cincinnati Net Wellness, Medscape News and Perspective, Conquer MG of Il, My awesome treatment team, and Fellow Snowflakes