Tag Archives: MG

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.

 

 

 

 

 

 

 

 

 

 

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Unusual Hospital Admission (I hope so)

I am hoping this was an unusual hospital admission and not the norm.  I am trying to have some compassion for my admitting nurse’s behavior because I arrived at change of shift  time.  I know this can be difficult.  This nurse’s comments and dirty looks toward the previous shift nurse told me that she wanted the previous shift nurse to do the admission tasks.

My nurse was grumpy and did look at me.   With a scowl on her face, she stared at the computer screen and scrolled down.  She said, “Why are you here?  I responded, ”  I am here for five IVIG transfusions.  My diagnosis is Myasthenia Gravis.”    She continued to scroll and then said  that there is no such thing as IVIG; you mean IVP; you are a kidney transplant.”I am not here for a kidney transplant” was my quick response; “My diagnosis is Myasthenia Gravis”

My bed was also the scale.  It showed my weight as being 20 pounds less than my actual weight.  I made a joking comment about liking the lighter weight.  I emphasized that my doctor’s scale and my scale matched.  She said she needed the bed scale’s number (wrong weight) to calculate my IV.

As she continued to try to argue with me, I suggested that she search for IV immunoglobulin.  She found it and with a click, she moved on.  IVIG is one of the few treatments for Myasthenia Gravis.  It was becoming very clear to me that she did not know anything  about my disease or it’s treatment.  Sadly, it was more clear that she was not interested in learning about it.

Four times, she asked if I was diabetic.  Each time , I said “No”.  She seemed to be obsessed with her diabetes question.  She seemed to forget my answer each time.  Several times, I told her that I need oxygen  and that I  have used 2 liters of oxygen for the past two years.  I looked at her blank face and wondered if she noticed I was short of breath.  I also  did not receive my Mestinon, the oral medicine that I have taken for the past two years.

This admitting nurse attempted to start my IV four  times  My arm was quickly purple and swollen.  She said , “Look at how puffed up your arm is..that proves I am in your vein.”  Her logic was so bizarre.  She then said she would not try any more and that the IV would be started the next day.  She answered her phone and she argued with someone who was reprimanding her for not having given morning meds to a different patient.

Our relationship began when she brought me a pill at about 7:30pm.  She announced that the pill would relax me and make me sleepy.  I asked if she was still planning to do my admission procedure and start my IV.  She said “yes” and I said that I would decline her 7:30pm sleeping pill. Her admission interactions concluded about midnight.

I asked for some hot water to use for the herbal tea bag that I brought from home.  She told me that patients were not allowed to drink hot drinks, in effort to prevent burns. This was not true. Hot soups, tea, and coffee were brought regularly to patients by others.  Another nurse saw me running tap water, as I tried to make my tea.  She immediately brought me a cup of microwaved water while telling me I should have asked my nurse for hot water. Yikes????

Needless to say, I was sick and weak during this episode. I would like to say that things got better during the next six days.  It did not get better.  I will be telling stories of my experiences in upcoming blogs.

 

 

 

OPTIMISM OR DENIAL?

FullSizeRender (2)I have worn the rose colored glasses throughout my life. My childhood role in the family deemed the glasses as necessary.  I flashed that smile and said, “I can do this”.  Most of the time I could.  I grew into a multitasking adult who was always fine.  I pushed through tasks when I was tired or ill.  I did not accept limits.

For the past two years, I have been struggling with the chronic illness, Myasthenia Gravis.  My pattern was to use my optimistic coping skills to deal with my MG.  During the first year of this illness, I made the mistake of exerting myself whenever I felt the least amount of increased strength.  This did not work.  My illness and weakness increased with exercise.  My neurologist said, “Exertion will make you sicker and rest will make you stronger”.  During a ten day stay in ICU, I told my doctor that I was “O.K.”  He told me to stop lying to him because we both knew that I was not “O.K.”.  He pointed out that optimism is a good approach to many parts of life, but not this illness.  I learned so much during the conversation that pursued.

During this second year of this illness, I am learning how to be realistic without being pessimistic.  I have learned how to break my minimal activities into small parts.  I move slowly, for the first time in my life.  I have learned plan to rest completely the day before and after an appointment.  I say “no” sometimes.  I can ask for help.

I continue to wear the rose colored glasses quite a bit.  Things are not going as I had planned, but the glasses now help me see the way things are.  The glasses help me see that I do not have to be a productivity number.  The glasses help me not feel guilty when I can see that some friends want and expect me to be the way I once was.  The glasses help me choose people and experiences that fill me up rather than drain me.

I am learning how to be honest about my weakness and limits.  At the same time I feel happy most of the time.  With a few changes in technique,  I can make art.  I hear and enjoy music.  I meditate.  In spite of double vision, I read.  Digital devices  help me increase my font. Prisms change double and triple images to a single image.  I have a  big TV and I like movies.  It is difficult for me to speak and for others to understand me.  No, I don’t like my speech limits, but when I put the rose colored glasses on, I feel so grateful to be living in the world of social media.  I have decided to keep the rosy glasses nearby at all times.

 

FAT

FullSizeRender (2)For my first six months of treatment for this horrific disease, Myasthenia Gravis, I strongly refused to take Prednisone.  I voiced my fear of weight gain and of developing a moon face.  A round face is a stereotypical side effect of prednisone.  At each neurology  appointment, I was advised to take this medicine.  I was educated about how it would help me.  I continued to refuse the medicine.  I agreed to all other treatments.

At the six month point, I needed to be hospitalized. I spent ten days in ICU.  My MG effects so many different muscles.  My eyes droop when fatigued.  Double vision is always present. My speech is raspy because my muscles are not able to operate my voice box.  My breathing is severely impaired do to weak chest muscles.  Because of these increasing symptoms, I finally decided to try the prednisone.

I started with low doses that were gradually increased.  I dieted and restricted my sodium.  I was so pleased.  I did not gain weight.  I actually lost a few pounds. This continued for six months. At the six month point, I needed another hospitalization.  My prednisone  was rapidly increased during a week of plasma exchange.  I immediately gained thirty pounds.  Each day I add a few more pounds.

In my illness, my immune system is producing antibodies that are harming me.  Prednisone suppresses the production of these antibodies.  This is why I have agreed to take the medicine.  I am currently going through a very slow dosage reduction. I understand that I will probably  always need some prednisone.

I have grown so fat. The fluid retention causes me to have a huge protruding belly.  My  swollen face is round and puffy .  I have fat pockets under my chin and around my neck.  Prednisone effects the appetite hormones.  I never feel full.

I am a person who loved to exercise daily prior to my symptoms.  I biked, walked, and used gym machines every day. I took zumba classes twice per week.  I have been directed to stop the exercise because this is an illness that is made worse by activity and made better by rest.  This is such a contradiction to my beliefs.  I had always been someone who pushed activity to the limit.  Losing the enjoyment of  exercise is another loss for me.  I am sure it is also contributing to this weight gain.

I am not sure what my future will be.  I recently attended an MG support group.  I sat with two obese men who reported that they have been off prednisone for a year.  They both said they are unable to lose the prednisone weight.  A woman  reported having lost her fifty pound gain during this past year since stopping her prednisone.  I also saw a social media post of a woman’s round, puffy face while using prednisone. She then showed her slimmer face, two months after stopping prednisone.  I am hopeful that I will be able to lose weight after reducing my dosage.  It is so different for everyone.

This weight gain has happened during the winter. I have been able to get by in sweats and jammies. It is now spring and I have outgrown all of my clothes. I recently bought a few extra large clothing  items.  I wanted to explain to people that this was not really me.  I believed that being overweight was always due to eating too much and exercising too little.  There have been some silly movies featuring people in fat suits.  This is how I feel about myself. I have never been the glamour girl type, but I have always cared about my appearance.FullSizeRender (10)

I am enduring an extremely slow reduction of medicine.  I am dieting.  My scale showed more weight gain today.  I refused Chinese carry out.  I watched my husband eat it.  I still gained.  Not fair!  I make spaghetti  out of zucchini.  I should lose.  Not fair!

Wouldn’t you think that I would be more upset by the life threatening symptoms that I have experienced?  It’s the weight gain that has me ranting.  My husband makes a statement that helps me keep this in perspective.  He tells me that he would rather have me be overweight and alive than slim in my casket.  He also frequently tells me that I am beautiful.  This helps so much while my self esteem is being chipped away by this disease.