Tag Archives: chronic illness

Snowflakes, Catch Them When You Can ( Myasthenia Gravis & art)

Myasthenia Gravis is nicknamed the “snowflake disease” because snowflakes are different from one another.  MG patients are  also different from one another.  All muscle groups can be effected by this neuromuscular disease.  The disease can vary, like snowflakes, within the same person from day to day.  Sometimes changes happen from minute to minute for a snowflake patient.

I am sitting in a room with some of my watercolor paintings, framed and hanging on my wall.  These were painted prior to five years ago.  This is when I began noticing my symptoms of Myasthenia Gravis.  My double vision began to distort what I saw.  I could not grip the paint brush.   I dropped it.  This was a profound loss.  I did not understand what was happening to me.   With diagnosis, treatment, and a support group, I have learned how to manage my illness.  It is frustrating to find that I could do something an hour ago, but cannot do it now.   I am learning that I might be able to do it later, after the muscles have rested.

When I lost my ability to create with watercolors,  I explored different mediums.  I found that I also loved colored pencils.  I began catching new snow flakes.  More recently,  I discovered needle felting.  Creating with wool is new to me and I love it.  Because it involves repetitive motion, I need to limit my time with needle felting or my hand muscles weaken.  Art experiences, even when brief, light up my life.  My past watercolors were detailed.  When I lost my ability to see clearly or to control my paintbrush, I experimented with abstracts.  I surprised myself by selling the original and a print of this abstract at JeriAielloartstore.etsy.com. IMG_3551 (2)I do not know if I would have dabbled in abstracts if I were not pushed in this direction.

After having spent several years,  not being able to hold a paintbrush to try detailed watercolors, I find that I am currently able to do it.  When I found that I could do this, a part of me became afraid. What if I can’t continue to do this?  What if I experience this joy and loose it again?  I do not know.  I imagine that I will grieve the loss again.  For now I am grabbing onto my watercolor snowflake.FullSizeRender (2)This is a current detailed watercolor.

I have been a  slow learner, but my illness has taught me to live for the day. I am more present and am able to be in the moment.  When I say, “I can do this” or “I cannot do this”,  it is not a concrete statement. I change frequently.   I would like things to be predictable, but I am not able to predict.  All that any of us have with certainty is right now. My illness keeps me aware of this.

I continue to hear from other MG patients. These fellow snowflakes tell me that they are helped and encouraged by my experiences.  I know that not everyone reading this is an art enthusiast. I also know that  other MG snowflakes have experienced losses.  Perhaps this will be an inspiration to look for alternatives for other particular losses.  For today, I am a snowflake who can paint with watercolors.

 

 

 






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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.

 

 

 

 


 

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 one, a description)

This is the first article in a series that will provide information about Myasthenia Gravis.  My target audience is patients, nurses and allied health providers.  Anyone with an interest in learning more about the topic may find this helpful. I am a retired nurse and psychotherapist.  I am a patient with the diagnosis of Myasthenia Gravis. Throughout my treatment, I have met many medical personnel who have not seen MG before.  In my years working in healthcare and social services, I had not seen this disease.  I am hoping that this article will help providers treat MG patients. I  also intend to encourage patients to know their bodies and learn how to manage their own symptoms  This is an effort to advocate for MG patients and the people in their lives. This is my way of flipping a negative experience around .  Perhaps I can provide a service to someone who needs it. Here goes:

The name, Myasthenia Gravis, literally means “Grave Muscle Weakness”. Myasthenia Gravis is a chronic autoimmune neuromuscular disease. Immune systems normally protect our bodies. When someone has MG, the immune system mistakenly attacks the patient’s own body. Antibodies destroy receptors for acetylcholine at the neuromuscular junction.  This prevents muscle contraction.  Muscles do not receive the messages being sent.  When antibodies attack and destroy communication between nerves and muscles, weakness in the skeletal muscles occurs.

MG is a rare disease. Most of the written sources that I have researched report that twenty per every one hundred thousand  people acquire this disease. However, a provider recently told me that only three  per million people acquire MG, worldwide.  The nickname for this condition is “Snowflake Disease” because the symptoms vary from person to person.  A patient with this disease may vary from day to day, sometimes from hour to hour. Myasthenia gravis can effect any of the voluntary muscles. Individuals may have one or many symptoms. The muscle weakness can occur on both sides of the body. The symptoms may come and go. The following are some symptoms of MG:

The eyes may be effected.  Diplopia means double vision.  The patient sees two or three images rather than one.  Sometimes the images are overlapping and blurry.  Ptosis means that one or both eyelids are drooping.  Vision may become obstructed. Ocular symptoms are often the first signs of this disease.  15% of people with ocular MG have only ocular symptoms.  Most people move on to experience weakness in other muscles.

About 15% of MG patients report their early symptoms as being face and throat muscle difficulties.  Weak muscles in the mouth and throat can cause difficulties with speech, chewing, swallowing, and choking. Facial expression may be limited due to muscle weakness.  An MG patient may have difficulty holding their head up.

Weakness in hands, arms and shoulders can make it difficult for a patient to lift their arms, wash their hair, shower, and brush their teeth.  Arm and hand weakness can make it hard to lift items from cabinet and refrigerator shelves.  Jars will become more difficult to open.  Gripping items with fingers may be challenging.

Leg muscle weakness may make it difficult to stand  after being in a sitting position.  Walking may become difficult.  Balance may be effected and may cause a wobbling gait.

When the diaphragm muscles are weak, breathing is difficult.  The voice may become weak and raspy when these breathing muscles are not strong enough to move the larynx. .

Extreme fatigue often occurs. Activity worsens MG weakness.  Rest improves symptoms.  Remissions are possible. Exacerbations (flare ups) may occur.  Myasthenia Gravis is not life shortening in the way that some illnesses predict that a person will live for a certain amount of time. Most MG patients will experience a normal life span.  However, MG may be life threatening  when the respiratory muscles are weakened.

Section One has been a description of Myasthenia Gravis.  Future articles will describe diagnostic tests. Common treatments and medicines that may be prescribed by the Doctor will be listed. Myasthenia Gravis psycho socials needs will be addressed.  My final section will be the story of my personal journey with this disease.

 

Sources: Genetics Home Reference @ U.S. National Library of Medicine,  Myasthenia Gravis Foundation of America,  Conquer MG (Myasthenia Gravis Association of Il),  John Hopkins Medical Health Library, and The National Institute of Neurological Disorders and Stroke

Snowflake Art is provided by James Aiello, painter

 

 

 

 

 

 

 

 

 

 

 

 

 

Do Yellow Footies Really Prevent Falls? Really?–Days four and five in the hospital

By day four of my hospitalization, things were going smoothly.  Competent nurses were helping me.  I was receiving the medications and IVIG transfusions needed to treat my disease, Myasthenia Gravis.  I was looking forward to going home soon, following my last transfusion.

The evening nurse, who identified herself as the charge nurse, disconnected my finished transfusion.  I reached for my blue slippers. I brought these slippers from home and I have been wearing them daily when up.  I wanted to walk to the bathroom now that I was free from my IV pole for a while.

The nurse said that my slippers should be yellow.  I gave her a befuddled look.  She repeated that it was important for me to wear yellow slippers.  I responded with a weak giggle.  I mistakenly assumed that she was making a joke that I didn’t understand.  After I giggled, she said, “Didn’t THEY bring you a pair of yellow footies?”.  I shook my head in a “no” motion.  She elaborated that I was on fall precautions.  She explained that I was to wear yellow footies at all times, so all hospital staff would keep an eye on me to keep me from falling.  She left the room, saying that she would get me some yellow footies right away because THEY did not give me yellow footies.

I kept my giggles to myself as I read the board on my wall.  It said, “Up At Lib”.  I recalled other staff showing me how to unplug my IV when I wanted to get up.  When this nurse returned, I offered no resistance to accepting a new pair of yellow footies.  However she did not bring the yellow slippers.  She said that she told THEM that I was steady and alert, but that THEY insisted I be on ‘fall precautions’ because of my diagnosis and “many factors”.  I don’t know what the many factors were.  Several hours later, the nurse returned to my room.  She looked at my feet and said, “THEY didn’t bring your yellow footies yet ?”  She seemed quite annoyed with THEM.  I simply said, “No”.  Footies were never mentioned again and I did not receive any.

Day five arrived.  My care was excellent.  At 11pm I slumbered into sleep, knowing that I would be going home the next evening. Each night in the hospital, I had turned out my lights and closed my door because of the bright lights and noise in the hall.  I followed my routine on my last night here.  At midnight, someone opened my door widely and turned my lights on.  Of course, this woke me up.  I decided this person had forgotten their blood pressure cuff, or meds.  I waited for about an hour, unable to sleep because of the light and noise.  I decided to get up, turn off my lights, and close my door again.  As I put my feet over the side of the bed, piercing loud alarms began to ring repetitively .  I walked to the hall and asked the CNA why my room was making noises in the middle of the night.  The CNA said that the nursing supervisor had come through, opened my door, put my lights on, and activated a bed alarm because she wanted me to be on Fall Precautions.  As the CNA said, “nursing supervisor”, she seemed quite intimidated.  I stressed that I had been up without precautions all week.

I called for my nurse, who shook his head and said, “The supervisor did this”?  He turned off alarms and he apologized for the supervisor’s disruption.  I was so grateful for his common sense.  I again read the board on my wall that said,”Up At Lib”.  Following this commotion, it took quite a while to return to sleep.

The next day I was exhausted.  My doctor said he would be talking to the supervisor about  her behavior. This was not helpful to me, but perhaps a future patient will be spared sleep deprivation.  My discharge day had arrived.  I would be going home in the evening after my last transfusion was completed.  On this last day, yellow footies were not mentioned by anyone.