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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

 

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.

 

 

 

 

 

 

 

 

 

 

Hospitalization Stress

On day two in the hospital, I woke up feeling relieved that last night’s irresponsible nurse had said that she would not be here today.  Actually, she never returned.  Today’s nurse was wonderful.  She was efficient, kind, smart, and helpful.  Yet her hands were somewhat tied by mistakes that had been made he night before.  I was patient when my morning medicine was late.  I am aware that it can take some time to get things rolling along for a new patient.  When I finally put my call light on, my nurse looked baffled.  She stated that the night nurse had not put through my admitting orders.  This nurse did not know about my med order. In addition to my doctor’s orders,  I had arrived with a list of my meds, doses, and frequencies.

This day nurse worked hard to contact the pharmacy and to fix what the previous nurse had neglected.  However, this meant that I missed my 7pm, 8 am, & 12 pm doses of Mestinon.  This is an oral medication that has helped me for these past two years, as I cope with Myasthenia Gravis, an autoimmune disease that effects all my voluntary muscles.  On my own, I have managed not to miss any doses, prior to today.  This really good nurse got my Immunoglobulin transfusions flowing without further pain or bruises. The night nurse was also great.  She helped me feel safe and cared for while in the hospital, quite a contrast to the previous day.  I had no idea what was going to happen the next day.  My doctor was angry about my missed doses.  He talked with me about how he hated to raise his voice to staff, but it had been needed.  I appreciated his advocacy.

The events of the morning seemed routine on day three.  My oral meds were on time. Breakfast was tasty.  My  nurse was friendly.  Mid morning, I asked my nurse when she would be starting my IVIG.  She responded by saying that I could not have it until 10pm.  I explained that the only reason for this hospitalization was to receive these transfusions each day.  She shook computer print outs at me to prove she was right.  I explained the importance of my treatment.  I stated that her papers were mistaken.  Four times, she said, “Don’t cry”.  This baffled me because my emotions were nowhere near tears. I was assertive, as I asked for my treatment.  Without explanation, at 2 pm she started by transfusion, rather than holding it until 10pm, as she said that she would.

I was enjoying an afternoon visit with my son.  At 4:30pm, I put on my call light for my 4pm Mestinon.  C NA’s responded, but my nurse did not appear until 5:10pm.  She announced that she had to pass all her 5pm meds first.  She would then bring my pills.  My son said, “She will bring your 4pm medicine after she passes her 5pm meds to other patients”?   I continued to use my call light.  I told others what I needed.  One half hour later, she returned and announced that I could not have my 4pm dosage until 7pm. Again she waved her papers at me as proof that I could not have the medicine that my doctor ordered for me.  As I explained  the importance of my medicine,  she said “Don’t Cry”.  I explained that my voice is weak and raspy for the past two years because by breathing muscles are not strong enough to move my voice box, not because I am crying.  My son reminded the nurse that I had told her earlier that my impaired speech is a symptom, due to my disease, not due to crying.  My husband said to this nurse, “Look at her, do you see any tears?.  I asked my nurse to call the doctor.  She scolded me and said the doctor doesn’t make the decisions: the pharmacy and nurses do.  I felt that staff forgot that I was sick and weak.

At this point, we could hear my son speaking to my doctor’s answering service.  He asked to be called back because of the poor care I was receiving.  He asked the nurse if she would like her mother to be treated the way that I was being treated.  She looked sad and she said,”No”.  “Well, this is my Mother and I don’t like how you are treating her. Do you say ‘Don’t cry’ to all your patients just to placate and shut them up? She is not crying.”

The phone in my room rang.  It was my doctor,  He apologized to me for the mistakes of the pharmacy and nurse.  He stated that if there were any more late meds, I should call him directly  He then spoke firmly with the nurse.  Arrangements were  made for meds from home to be brought to me so that I would  self administer from this point on.

This nurse left and I never saw her again.  The night nurses for future shifts were good.  By this, I mean that they did their job and for that I was grateful.  I had the same day nurse for the remainder of my stay.  My IVIG transfusions were started promptly at 7 AM on days four, five, and six.  My medicines arrived on time.  I was discharged on the evening of day six.  I was grateful for the kind, accurate care that I received during my last few days. I felt exhausted and relieved to have survived the stress and mistakes of the hospital.

It is two weeks since my treatment.  I have been feeling quite sick. This is a common side effect of the IVIG transfusions. The benefits will be here soon and I will feel this experience was worth it.

All of these experiences have been reported to proper authorities.  I hope education will be provided to the staff who need it and that praise will be given to those who fixed mistakes.  I have been able to forgive and move on .  This does not mean that the mistreatment was O.K.  It does not mean that I was not angry and scared.   It means that I can let go of it in the healing environment that I have created at home.

There will be future articles about this hospital stay.  They will about less extreme situations. Actually,  one of the scenarios is quite funny.  I also plan to write about what I’ve learned and how I hope to use it to help others.

 

 

 

 

Introversion and Chronic Illness

IMG_0587 (2)The traits of introversion are an asset when someone is burdened with a chronic illness.  It has been two years since my diagnosis of Myasthenia Gravis.  All of my muscles are weakened.  My arms, hands and legs have lost strength.  I have double/triple vision.  It is difficult to speak because my chest muscles are not strong enough to move my vocal chords. Over exerting makes all of this worse.  Rest has been emphasized as a key part of treatment.  When this began, I was still working.  I expected the illness to be followed by recovery.  I grieved my busy life.

Prior to this illness, I developed the ability to go inside myself for answers.  I love to read.  I love to make art.  I find myself in the zone, when creating.  Seclusion doesn’t scare me; it delights me.  Silence fills me up.

I know people who need commotion and drama to fill themselves up.  They need outside structure and conversation.  A person with those needs would have a much more difficult time coping with the isolation  of chronic illness.

I am not accepting my situation.  I do miss my activities.  However, I believe that I am having an easier time because I can find joy in solitude.

 

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.

 

AGING WISDOM

FullSizeRender (2)There is a wisdom that can be obtained by aging that cannot be found any other way.  When I speak of aging, I use the word “old” quite freely. OLD is just as beautiful a word as YOUNG. An old face is just as beautiful as a young face.  Facial lines tell awesome stories of the journey.  Why would someone want these lines erased?

When was in my twenties, I facilitated a support group for older women.  I held these values about aging being a positive experience.  Several of my colleagues were pushing forty.  They had negative attitudes about getting old.  They said to me, “Just wait til it happens to you..you will see.”  They were so wrong.  Decades later, I continue to celebrate aging.  I encourage everyone, young and old, to celebrate aging.

As my career evolved, I presented many  workshops about aging.  Agism is a growing topic.  Why? It sells products.  Agist ads tout that if someone wears goop on their face, they will look young.  People are told that they should inject their skin to remove their beautiful story lines.  The anti aging products and procedures are  expensive. Ongoing  brainwashing by the media has caused people to want these creams and needles.

As an old person, I see it as my responsibility to model and point out the joys of getting older.  I frequently tell young adults not to buy the propaganda they hear about aging.  I hope they will spread this information.  The wisdom that can be achieved by aging cannot be achieved in another way.  We cannot google it.  When I think of the insight and wisdom that I have acquired each decade, I can only imagine the insights that await.  I find it energizing to know that there is so much left for me to learn.

Did you know that in some Native American nations, a person is not considered an adult until age 51?  It is considered normal to be indecisive as the individual travels around the medicine wheel.  People under age 51 are described as not knowing enough to give advice.  After 51, we become wisdom keepers.  As wisdom keepers, it becomes our responsibility to pass along what we know.

 

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HOPE

IMG_3943 (2)Hope in itself is healing.  I left my Doctor’s appointment with a smile on my face.  I almost had a spring to my step. My doctor’s parting words to me were “I will help you.”

These past two years I have learned about acceptance.  I have found ways to live within limits.  I have given up many activities.  I have practiced doing things differently.  Muscles throughout my body are weakened by Myasthenia Gravis.  Hopelessness moved in right next to acceptance.

Today I am beginning a new medication regime. My physician’s hope is contagious.  I am hopeful.

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!!

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.