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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.

 

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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.

 

 

 

 

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

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