My First Meeting and a Bit About Coraggio!

This past weekend I had the opportunity to attend my first Myasthenia Gravis chapter meeting.  The NJ chapter holds about four to six meetings a year.  They meet about an hour from my house, and since I can't drive as far as I used to without my arms and neck tiring, my sister acted as driver.  We made a few references to "Driving Miss Daisy" and off we went!

I was very excited to finally meet other people who live with MG. MGer's  as my friend Kerri calls us.  I still don't know what most people prefer, I guess I'll learn as I go to more meetings!  The people were warm, friendly, and gracious.  Many shared their stories, they talked of daily struggles and ways to overcome obstacles they faced.  The chapter has a lending library, you take a book home and mail it back to the librarian when you're finished.  

A guest speaker was also on the agenda.  Her name was Lisa K. Gigliotti, J.D., an administrative law judge, a policy adviser for the Michigan State Senate and Governor, as well as an advocate for people with disabilities.  Ms. Gigliotti is also an author and motivational speaker. She too lives with Myasthenia Gravis and Rheumatoid Arthritis.

Her presentation was called "Coraggio, Lessons for Living From an Italian Grandmother". Lisa talks about how she overcame the disabling effects of Rheumatoid Arthritis and later Myasthenia Gravis. She shares stories about her family, and how she drew strength and coraggio (courage) from her grandmother after the death of her mother and aunt.  

I hope you get the chance to hear Lisa or read one of her books.

To visit Lisa's blog, or watch her video visit:

 withcourageican.com

Lisa, Thank you for showing us how to live with "CORAGGIO!"

The Yes We Can Van

I had the pleasure of meeting one of my newer Facebook friends yesterday.  Her name is Carole Brown, she's originally from the UK, buts now calls the USA home.

Carole is currently traveling across the United States in her "Yes We Can Van". It's a vintage 1970's VW camper van.  

 

The main purpose to raise awareness  about Myasthenia Gravis (MG). MG is a rare under diagnosed auto-immune neuro-muscular disease that causes severe muscle weakness, currently there is no cure.  Anyone can be affected by MG, it knows no age, race, or ethnicity. 

Carole's mom lived with MG, it has become her life's mission to tell others what MG is and how it affects people's lives. She is currently traveling along the southern states en route to California.  She plans to visit MG chapter meetings and visit with others whose lives have been affected by MG. 

If you would like to follow Carole and her "Yes We Can" camper van or learn more about Myasthenia Gravis simply 

 click on this link.

  Wishing you safe travels my friend!

 

My Little Baker...

Baking is one of my favorite things to do, especially when the weather starts to get cooler.  There's nothing like the sweet smell of something yummy baking.  It makes me feel all warm and happy inside. 

My youngest niece Haley also loves to bake.  Although sometimes our ideas of "baking"  aren't on the same page.  We love baking from scratch, she on the other hand thinks placing a Pillsbury break and bake cookie on a tray is "baking".  So this weekend we compromised, we baked from a cake mix.  We always keep a few mixes and frosting on hand to use in a pinch.

My little baker had decided she was going to bake cupcakes.  There were all kinds of noises coming from the kitchen. I could hear doors and drawers being opened and closed, and the sound of metal as it crashed on the kitchen floor!  I shook my head as I rose from my chair.  I bravely walked to the kitchen, as I approached Haley looked at me and announced "we don't have any cupcake mix, I'll have to make brownies instead!"  I explained that you use a cake mix to bake cupcakes, we didn't need a special mix.  The look of happiness returned!  On the kitchen table she had already gathered all of the things we would need.  There were eggs, oil, a mixing bowl and whisk, and all sorts of measuring cups just waiting to be used.  

Haley informed me she didn't really need me to help, I could sit and watch...with great trepidation I took a seat at the kitchen table.  With the skills of a master baker she carefully measured.  She mixed and mixed until the batter looked just right.  I poured the batter into a large measuring cup to make putting the batter into the cupcake pan easier.  Chef Haley slowly poured the batter into each cup, licking her fingers every chance she could.  With her approval I placed them in the oven. She set the timer and waited as patiently as an eight year old could. Their sweet aroma began to fill the kitchen. It would only be a matter of time before they would be ready.

We placed the cupcakes on the rack, while they cooled Chef Haley gathered some frosting and sprinkles to decorate with.  Each cupcake was carefully frosted and covered in Halloween sprinkles.  Cleanup came next!  After licking bowls and whisks Haley even did her own dishes...She was so proud of all her work, and so was I!!

YUMMY GOODNESS!

Six Years Ago...

Six years ago today I lost someone, 

I lost a friend, a confidant, a mentor, I lost the most important person in my life, I lost my mother.

She was kind and gentle, or a force to be reckoned with!

I learned many of life's lessons from her...how to treat and respect others, to be true to myself, have faith in God, no matter what hand I was dealt, and to be responsible for my own actions.  

When we shopped she always bought extra food for those in need.  The bag was always left on the back porch of the rectory without any fanfare.  There was never a need for recognition. She prayed for those who were in need of God's blessings. She always looked after our elderly neighbors. She visited them, brought them meals and treats.

She worked as a nurse, sometimes caring for those forgotten by their families.  She cared for the elderly, mentally and physically disabled, and for prison inmates.  No matter what their affliction, they were cared for with kindness and compassion.  

Losing her has gotten easier over the years. But now and then a song will come on the radio, or I'll be cooking one of her favorites and I begin to cry. Sometimes out of sadness, other times, joy and happiness. I miss watching Jeopardy and crocheting with her, mother daughter vacations and lunches are now a pleasant memory.  She is always in my thoughts, I talk to her daily.  I find comfort in knowing she is resting in God's hands...

 

Harriet Grace

August 27, 1940-Ocotber 18, 2005 

 

 

Anxiously Awaiting Autumn

Autumn is my favorite time of year...I love the crisp chill in the evening air...the magnificent colors as the leaves change from brilliant green to warm browns, gold, oranges, & reds.

The animals are busy preparing themselves for the winter ahead...the geese fly overhead on their way to their winter homes...squirrels are scampering about hiding nuts...

Farm markets will soon open their corn mazes and have all kinds of family activities...Apples are ripe for the picking.

My cooking and baking will change from quick and easy to slow and comforting...Soups, stews, casseroles...Pumpkin Muffins...Apple Pie...Cranberry Nut Bread.

But what I love most of all are the changes my body  experiences...The MG monster LOVES the heat and humidity that summer brings...for me it also LOVES "old man winter"...The MG monster is also a COWARD...he hides in the fall...My muscle's grow stronger as the days grow shorter...my steps become more sure...I can walk greater distances...I'm more productive at home...my body doesn't require hours of sleep after doing even the simplest tasks...

  That's why autumn is my favorite season!!!

Life is a Struggle...

The last few weeks have been a struggle for me.

My youngest sister passed away at 39 years old.  Up until recently she lived with me, my other sister and their two daughters.  Sadly she died alone, in her small apartment away from family and friends.  As young children we shared many happy times.  But as we got older she became more distant.   Our relationship was strained, I never gave up hope we would repair the damage that tore our family apart.  Much to my regret it was not to be.

She left behind a beautiful, loving daughter.  She struggled with being a single parent.  My sister and I were there to help, but it's not always enough.  She survived kidney cancer, but struggled with substance abuse and mental health problems.  There were times I felt so lost and helpless, she wouldn't let me help her, no matter what I tried to do.  

My niece has been living with my sister and I for quite some time.  It broke my heart when I had to tell this sweet, loving angel that her mother passed away.  I know she is struggling too, she keeps telling me how mad she is that I ruined her most perfect day.  We decided to make a memory quilt together, we've started collecting fabric from some of her mom's clothes.  One of her shirts had a beautiful poem about butterflies on it, this will be the center block.  My niece is very excited about remembering her mom this way.  

Life is full of struggles and hardships.  Sometimes we overcome them, sometimes they get the best of us.  Right now my daily struggle with Myasthenia Gravis seems very small when I compare it to the struggle of an eight year old coping with the death of her mother...

My sister is resting in heaven now, there are no more struggles for her.

Rest in Peace Nickie

I'll Never Be Esther Williams Again...

The weather has been extremely hot and humid across most of the country the last few days.  New Jersey is no exception! So to escape the heat my sister and I have been taking her girls to our town pool.  It was remodeled a few years ago, it's a far cry better than it was when I was younger!  We always had a pool in our backyard, but as we got older and my parents health got worse we finally removed it.  I must admit, I miss it so much!

This will be my first official MG summer.  I got sick in June of last year, but didn't officially become a member of the "MG Club" until the fall.  I couldn't wait to get in the water and swim to my hearts content, water has always been so liberating for me. I love to swim laps to clear my head. There's is something so meditative about swimming, stroke after stroke you free your mind and relax your body.  It gives you time to reflect and ponder things.  

I went to the pool for the first time the other day.  I felt so free in the water, almost like there was no muscle weakness at all.  I floated along, looking at the clouds above my head as the cool water splashed around me.  I was the "OLD" me again, or so I thought! I decided to swim some laps, BIG mistake, I swam about 20 feet when I could feel my arms and legs weaken, my motions became slower, I could feel myself sinking under the water!  While I was in no danger of drowning I stopped trying to swim laps.  I didn't want to be the "fat lady" that the lifeguards had to save!  So I went back to floating and gentle paddling about.  I felt so cool and refreshed when I got out of the water.  My body was tired but nowadays that's the norm.  We went home, and as we went to prepare dinner I dumbstruck by how weak I felt. I could barely stand!  My sister finished fixing dinner, and I spent the rest of the evening in my recliner.  I dozed off, and eventually got up and went to bed to rest up from all my swimming fun!

I got up as usual to my morning medication alarm and took my first dose of Mestinon.  Jumping out of bed first thing in the morning is never easy for me anymore, I kind of ease into it gradually.  So as I put my feet on the floor to stand, I wasn't shocked when I had a morning case of spaghetti legs.  Going about my morning I was getting more fatigued by the moment, I hadn't felt so weak in quite a while.  I went back to bed to rest a little more.  I was still exhausted when I got back up.  It would take almost all day for me to feel up to par!

Yesterday was a scorcher, it was in the mid 90's with high humidity.  So off to the pool we went. Again I made an attempt at swimming some laps.  Sadly the outcome was the same.  I have a lot of limb girdle weakness, so climbing stairs and doing things that require a lot of shoulder movement are very difficult.  So I guess laps are out of the question!  I was resigned to floating and bobbing around, enjoying every minute of the cooling effects and my weary muscles.

Today I'm struggling with everything I need to do, my body is so tired and weak, I feel like a participated in a marathon! So here I am typing in my recliner reflecting on another change in my life.  Myasthenia Gravis and fun in the pool don't make the best of friends!  Just walking about in the pool against the weight of the water has left me almost immobile. Even my Mestinon is of little use today!

I'm trying not to let this upset me, but I'm finding it rather difficult.  My life doesn't depend on swimming laps in a town pool, but I was once again shocked back into my "NEW" reality.  I will "NEVER" be Esther Williams again!"

 

MG and Tootsie Rolls, An Adventure in Eating...

My house recently acquired a windfall of Tootsie Roll candies from the 4th of July parade.  As the floats and various groups pass by they throw candy and other goodies at the spectators.  My niece managed to collect almost a gallon freezer bag full of yummy goodness, including lots of original and flavored Tootsie Rolls and Tootsie Pops.  She is NOT a Tootsie Roll eater, and began sharing her bounty with the rest of the family.  I on the other hand LOVE Tootsie Rolls, so my share of the booty kept getting larger.

Since being diagnosed with MG I've learned through trial and error what I can and can't eat.  My neurologist warned me about hard dry things, chewy things, and even changing the way I eat or drink as the need arises.

I don't chew gum anymore, it makes my jaw so weak I can hardly keep my mouth closed.  I'm careful to make sure to chew well and take smaller bites.  I love caramel candy of all kinds, but avoid them as much as possible.  It's not very attractive looking when your totally enjoy that sinfully good chocolate covered caramel and drool is coming out the side of your mouth, so I save them for a special treat with others who don't mind if I drool!

I can't remember when I last ate a Tootsie Roll, so at my niece's urging we shared some candy together.  Well what a mistake that turned out to be! I chewed, and chewed, and chewed.  My jaw was becoming weaker and weaker with each chew.  It was worse than chewing bubblegum.  I never imagined I was going to have such trouble.  I was afraid I was going to choke on the darn thing!  It finally went down, I breathed a giant sigh of relief.  Then in a sweet gentle voice my niece said "here Rachel, I know you love Tootsie Rolls" as she passed me another.  I told her I had trouble chewing the first one and would save the others for another time.  And spoken with the wisdom of an 8 year old she said " I could call 911 and CPR you if you choke"  I couldn't help but smile and thank her, but saved the Tootsie Roll for another day when I felt like I needed some excitement.

So as a reminder,be careful what you eat.  But most importantly have someone around who can call 911 in case you are foolish enough to choke on a Tootsie Roll!

"The Greatest Little Town in the Land" Celebrates July 4th....

My little town LOVES to celebrate Independence Day!  It's an all day event that takes a full year of planning by a handful of dedicated volunteers.  They have contests to choose the Grand Marshall, and to decide the theme of the celebration.  This years theme was "MILLTOWN ROCKS THE FOURTH OF JULY!"  We play host to visitors from all over the county.

The day starts at 6:00am with a Fishing Rodeo for the kids.  Young anglers can be seen lining the Main St. bridge and a host of other prime fishing spots throughout town, all in the hopes of "Catching the Big One"  and going down in Borough history until the next year.

Next comes a 5K race and Fun Run.  Runners of all ages and abilities participate.  The race starts off with a bang, literally!  One of our residents has a cannon that is used to start the race.  You can hear it from several blocks away!  

One of my favorite parts of the day is the annual parade.  People start placing their chairs and blankets along Main St. from early morning.  It's funny when you look across the street or next to you, chances are the same people who are sitting near you sat there last year and the year before.  It's almost like folks inherit their own little space for the parade from their ancestors.  We've been sitting in the same spot for forty years!

Our parade honors veterans and active duty members of all branches of service.  My heart swells with pride when the flag is paraded past, some people salute, others remove their hats, and others cheer as "Old Glory" passes by!

Members of all the local organizations also march.  We have Boy Scouts, Girl Scouts, members of the First Aid Squad and Fire Departments, dancing schools, church groups, and a host of other groups.  But I must confess MY favorite part of the parade are the Bagpipes!  I know they are not for everyone, but for me it wouldn't be a parade without them!  I've ALWAYS had a secret desire to learn the pipes, maybe that will go on my "Bucket List"

 And you can't forget "The Mummer's" the crowds go wild as they do their strut.  The costumes are so wild and colorful, they never disappoint!

After the parade the crowds head to Borough Park for an afternoon of rides, and relay races.  There are awards for floats, marching bands, and various civic organizations.  All you can eat hot dogs and soda are served by the Fire Department.  And various bands play into the night.  Some folks return home to BBQ with family and friends, while others wait in anticipation of the fireworks spectacular to begin.

 

The view from my backyard...

As the day draws to a close it's important to remember why we really celebrate.  It's not just a day for BBQ's, parades, relay races, and fishing derbies.  It's a day to remind us of the struggle for freedom from religious persecution, and freedom from oppression.  There are many who gave their lives to help form this country, and many who still fight today to aid others in enjoying the same freedoms we do.

GOD BLESS AMERICA

LAND OF THE FREE AND THE

HOME OF THE BRAVE 

The Trouble With Thistle...

I have to admit purple isn't exactly one of my favorite colors, but I can't resist the sight Thistle in full bloom. It's the national plant of Scotland.  Legend has it that men carried it with them when they went into battle to remind them of their country and family left behind.

It grows tall and stately, but it's stem is covered with huge thorns.  Butterflies and bees enjoy landing on the blossom to sip nectar.  I don't know anyone who grows them in a flowerbed purposefully.  They grow wild along the roads and highways.  They make for a beautiful sight!

One day last spring I noticed a Thistle plant was growing up through the hedges in the front of my house.  I couldn't have been happier.  So I decided to let it grow, I was very careful when I trimmed so I didn't disturb the plant.  I watched and waited as it grew taller and taller.  It was almost six feet tall and full of blooms ready to burst any day.  I couldn't wait, everyday I went out with my camera checking to see if the flowers had opened.  And then it happened, so many of the flowers opened I couldn't wait to return home from running errands to take the perfect picture.  While at the store the weather turned, a giant thunderstorm moved in, bringing severe gusting winds along with it.  It was still pouring when I arrived home.  I waited patiently for the storm to pass, it lasted several hours.  When the storm moved out I grabbed my camera and headed out to the porch to get the shot I waited so long for.  It was not to be, the blooms had been blown from there stems, the seeds being spread by the wind!

My front and back yards are now full of fledgling Thistle plants.  There's even one growing at the site of the first plant.  I will watch that one grow in hopes of capturing it in all it's splendor, maybe the weather will be on my side this year!

Sometimes I think living life with MG is like being a Thistle plant.  We try to grow tall and bloom for all to enjoy, but our thorns (Myasthenia Gravis) get in the way.  We are strong, yet vulnerable to the wind and rain.  We are planted firmly, our roots aren't easily destroyed.  We live with the hopes of blooming another year in spite of whatever adversity comes our way, that's life with Myasthenia Gravis...

June is Myasthenia Gravis

Awareness Month

to learn more visit:

http://myasthenia.org 

How I Met The Monster.....Conclusion

A year ago this week my life would change forever

Where we left off; As I said yesterday all my tests were coming back negative or with normal results. This only added to the stress and frustration I was feeling.  I was at my wits end.  I continued to pray, I prayed for the doctor's to discover what was wrong with me, I prayed for the strength to accept what would come my way, I prayed that my life would be spared.  But I never bargained with God, it's not my way.  I don't make promises for good things to come my way.  It's always been my belief that if I led a good life I would be given the strength to live with whatever came my way.

My doctors and neurologist were very busy reviewing all of the tests the had done and what they were considering next.  I knew God was looking over my shoulder, I was starting to feel better.  I was finally allowed out of bed after 4 days, but only to go to the toilet!   After three and a half days things began to turn the corner.  They thought they had found the problem.  A wave of relief came over me!  After reviewing all the labs and other test results the doctors discovered I had a seriously low Vitamin B12 level.  I was caught by surprise, who would have thought that a low B12 level could cause so many problems.  It turns out that Vit B12 is essential for your nerves and muscles to work properly!  I was started on a program to increase my B12 level, I would have to inject myself with the vitamin daily for several weeks, then weekly and then monthly, along with an oral supplement for the rest of my life.  This was a whole lot better than a neuro-muscular disease.  I offered a pray of thanks, again I had been blessed.  Some other labs drawn, it was determined that I had an absorption problem.  The doctor and neurologist said usually the neurological problems I was experiencing go away entirely.  Some would take longer than others, some might never go away, only time would tell.  It was agreed that I could go home after my B12 level increased.  I was discharged two days later, feeling like a new person.    I had to follow up with my doctor and neurologist in a few days. Any other testing could be done as an out-patient.

My first visit with my doctor went pretty well, but there was some concern that I still had so much weakness in my arms and legs.  I had to continue with the B12 regimen until I saw my neurologist a few days later.  The next day I had another episode of almost paralyzing weakness.  I was filled with fear all over again!  I found comfort in the fact that I was going to see the neurologist in the morning.  I had no idea what to expect form this visit.  We talked at length about the B12 issue and the problems that it could cause, and then he said it  "I want to test you for Myasthenia" my heart sank, I could feel the tears welling up in my eyes.  I thought I had escaped a terrible fate.  He was so kind and reassuring, he said "hopefully this is the last time we will ever have to talk about this."  He wanted me to have Acetylcholine antibody tests drawn ASAP, an EMG was scheduled at his office for the next week. We would talk about the results then.  I went to the lab on my way home.  When I had the strength I searched the internet for anything I could about Myasthenia Gravis.  I was now more afraid than before.  I had no idea how bad this disease could be.  When I look back now I think to myself, our family has never done anything small. Even with this I couldn't just have a droopy eyelid, no not me, I had to be almost paralyzed from weakness.

Now was I to become one of the many who struggled for years to get a diagnosis or would I be spared the same fate.  Only time would tell.  Off we went to for my next appointment, and guess what my antibody tests were NEGATIVE!!  Dr. B. did my EMG, that was normal other than finding out I had Carpal Tunnel Syndrome.  No surprise there, I spent much of my day on a computer at work and am an avid crocheter.  Both are notorious for causing repetitive motion injuries.  The next step would be to have the MuSk antibody test done.  Because of the expense and nature of the test I would need prior authorization.  It would take about four to six weeks for their decision.  In the mean time we would see how much the B12 regimen helped the weakness.      Then the letter arrived from my insurance company, as Gomer Pyle says "Surprise, Surprise, Surprise!"  The insurance company didn't grant approval for the test, they didn't feel there was strong enough clinical evidence!!  I was stunned to say the least, I couldn't call my neuro fast enough, he was floored.  By now I was hysterical, he tried to reassure me, then the final blow came.  He said with or without the test I would recommend the same thing. I want to start you on Mestinon.  All I could think about were the horrible side effects I'd read about.  I didn't want to pee myself or drool all over or whatever else could happen.  I was not taking any medicine until I knew for sure that I had Myasthenia.  So then off I went to Philadelphia for a Single Fiber EMG, and yes that was negative as well!  I thought I was on the road to nowhere, everything was normal or negative, I was so discouraged at this point.  God bless my neurologist he has the patience of a saint, he is such a kind soul.  I know God was looking after me when that angel of a doctor came to my hospital room that first day.  I was now a member of the sero-negative Myasthenia Gravis fraternity.  A group I really didn't want to join, but here I am.  I began Mestinon at 30 mg 3x daily.  No side effects, thank you God!  It helped some, but not enough,  the dose was increased to 60mg 4x daily.  It helps so much, I don't want to think about what my life would be like without it!  My only regret is that I didn't take the Mestinon when the doctor first suggested it.  As I've come to learn, there is no sure thing with MG ALL your tests can be negative and you can STILL have MG.  I am so blessed that I didn't have to wait years for a diagnosis.  My neurologist has treated many sero-negative patients in his career.  Thank you God for sending an angel my way!

June is Myasthenia Gravis Awareness Month
to learn more visit:
http://myasthenia.org

How I Met The Monster.....Episode Four

A year ago this week my life would change forever

The hospital adventure;  Well as I mentioned previously, I went to the hospital by ambulance. And yes the neighbor's were all on their porches to watch my departure!!  After all, who doesn't like to watch a neighbor on a stretcher.  

Our town is rather small, it's "One Square Mile of Happiness", well that's the motto anyway!  We have a volunteer Fire Department and First Aid Squad, they are a very dedicated group of people.  They are there for the whole community day or night.  There is never a charge for their services!  

My sister place a call to the First Aid Squad, filling them in on all the details.  She helped me to the living room, the doorway to my bedroom is very tricky to get in with a stretcher.  We didn't want anyone to get stuck!  Again we gave a rundown of the events of the last few days.  I'm so glad my sister was there through the whole thing, I don't think I had the strength to keep telling my saga.  For safety's sake I was strapped into a transport chair and brought down the front steps.  I was then helped onto the stretcher and placed into the ambulance.  The crew for my trip was a family of longtime members.  Mom, Dad, daughter, and her younger brother who is in training.  That's not unusual in Mayberry (our unofficial town nickname!).  We went to grammar school and high school with Mom & Dad, and their daughter was my brother's ex-girlfriend, like I said Mayberry!  It's funny, the first thing I did was apologize for not sending my 2010 donation in yet, they laughed and said they would give me a ride anyway!  


This time I went right into the ER, that's the beauty of coming by ambulance!  My doctor had already ordered labs, so they were done ASAP.  A history was taken by a nurse practitioner, one of the first things she asked was about a history of MS in my family.  To my knowledge there was none, but we have lots of other crazy things!  If you name a cancer there is probably someone in my family that's had it!  It was now time to wait for a room.  The place was pretty busy, but I only waited about an hour or so.  The time passed quickly, my body was still going crazy.  Weakness, muscle spasms, electric shocks, all taking their turns.  Then the sweats returned!  I hadn't had them in a few days , but they were back with a vengeance. All I could do at that point was keep ice cold cloths on my head and neck until my room was ready.


Shortly thereafter my doctor arrived, we talked about what was going on.  He was so reassuring.  The weakness was so bad at this point I couldn't care less what anyone needed to do to figure this whole mess out.  He schedules a repeat CT Scan, an MRI, and an EEG to go along with all the labs that had been done.  He had already contacted the neurology group that his office works with, and he reached out to an infectious disease specialist as a standby.  


Through all of this mess my vital signs were pretty good.  My blood pressure stayed pretty stable, it only rose when I was extremely weak.  Even my pulse oximeter stayed in the mid to high 90's!  I was placed on strict bed rest.  This included NO bathroom use!  I am so not a bedpan person, it's not pleasant for the patient or the nurse.  I had trouble sitting, turning, moving, and doing the simplest things for myself.  When it came time to eat the nurse's wanted to help me .  This nurse was NOT going to let anyone feed her!  I was so stubborn, I had them turn my tray side ways on the bedside table, I raised my head as high as the bed would allow and try to push the tray under my chin.  I was barely able to hold a spoon or remove the paper from my straw.  But I was going to do it my way!  


Some of the lab results were coming back, so far all was negative.  At this point a stroke was ruled out.  They also ruled out things like West Nile Virus and Lyme Disease.  The EEG was negative, no seizure activity.  The repeat CT Scan and MRI's were also negative.  There were no  tumors or lesions on the brain, so that kind of threw an MS diagnosis out the window.  The symptoms were wrong for Guillian Barre, that usually causes paralysis from the feet up, in some cases it causes paralysis of the breathing muscles requiring respiratory support.  My weakness was more generalized, mostly from my neck to my knees.  I myself had never even thought of Myasthenia Gravis, as far as I know it was that disease that made your eyelids droop.  As far as I could tell mine weren't droopy!  No one else mentioned MG yet either!  

With every negative test came joy, but also fear of what they might find.  We were having some problems at home, I even thought maybe I had lost my mind and was causing my own illness!  I couldn't hold back the tears, I was hysterical.  I was sure I was having a breakdown!  I expressed my fears to my doctor, he said to me that I wasn't crazy, he was sure there was something physically wrong, it was NOT in my head... Tomorrow, the stunning conclusion...

June is Myasthenia Gravis Awareness Month:

to learn more visit:  http://myasthenia.org 

How I Met The Monster.....Episode Three

A year ago this week my life would change forever

Where we left off;  I might not have mentioned it, but I've been a nurse for over twenty years.  Like many in the health care profession we self diagnose and don't always seek medical attention as quickly as others might.  That was the case for me.  I see a doctor regularly for Diabetes, but try not to make a habit of going to the doctor for much else.  I've always been this way...When you work with them every day, you don't want to see one on a day off!!

The medication didn't help with my symptoms, I didn't think I had Vertigo, period!! I remained in bed for the better part of the next day.  Only getting up to take care of personal needs, I still needed help, the walls and chairs were my best friends.  I even had to stop along the way to rest, and the bathroom was only two rooms away.  That evening things got worse.  I began experiencing painful muscle spasms and a feeling best described as small electric shocks throughout my body.  My legs would become rigid, like I was having giant charlie horses, my neck would become stiff and turn in strange directions, I felt like Linda Blair in "The Exorcist"!  My body was swinging back and forth between painful spasms and extreme weakness.  I also began to experience this strange heaviness in my chest.  I didn't really feel short of breath, but couldn't really take a deep breath.  It was like my diaphragm wasn't working properly. 

I hated to admit it, but I needed to go to the emergency room, I didn't think I was dying, but I knew in my heart of hearts something was horribly wrong with me!!  My sister wanted to call the First Aid Squad, but stubborn me wasn't going to make a spectacle of herself and go by ambulance anywhere!  I live in a small town, "Where Everybody Knows Your Name" as they sang in the "Cheers" theme song, the last thing this idiot wanted was for all her neighbors to stand on their front porches and watch her be carried out of her house on a stretcher!!  So off to the ER we went.  It was still early afternoon so I didn't think we would wait that long. WRONG!!!  My problem wasn't as severe as others, no chest pain or heart attack, so I had to wait.  And wait I did, I saw a triage nurse rather quickly, but waited several hours before being taken into the ER itself.  It wasn't until I began sliding out of the wheelchair I was sitting in that I was finally taken in!  Again I explained my saga of the last few days.  The doctor ordered all the usual labs, they even checked for drugs and things just in case I was some sort of fiend looking for a fix or something!!

I went for chest x-rays, and a CT scan.  They were normal, but my symptoms persisted.  They were less severe than they were earlier, but I had been sleeping on a stretcher for several hours at this point.  They doctor came to the conclusion that there was SOMETHING neurological going on, but because all my test were normal I should see a neurologist and return to my primary care physician ASAP!!  I was given my discharge papers and sent on my way.  It was almost two in the morning now...All I wanted to do was go home and go back to bed.  But I didn't get much rest.  My mind began racing with thoughts of what might be wrong.  The nurse in me took over, the "alphabet" neurological conditions started to pop into my head.  MS, ALS, MD, I even considered Guillian Barre Syndrome at one point but the symptoms didn't fit!

It's now Friday morning, all I could do was stay in bed and deal with whatever my body threw at itself!  We made an appointment to see my doctor first thing Monday morning.  There was no way I was going to try to make it to the doctor today!  I spent all of Friday and Saturday in bed, the spams were becoming more frequent.  The pain was awful, but I thought I could stick it out until Monday.  Come Sunday morning the pain was so bad, my muscles were twitching, and the electric shock like feelings wouldn't stop.  I could barely move, I couldn't lift my head, my arms and legs felt like they had concrete blocks tied to them.  I felt like a quadriplegic, I couldn't hold anything in my hands.  My voice was weak, I was so afraid, I cried like I had never cried before.  My sister called my doctor, he wanted us to get to the hospital ASAP.  He called ahead and told them to expect me, he did admission orders over the phone.  I was on my way back to the hospital once again.  This time we went by ambulance!!  
Tune in tomorrow for Episode Four... 

June is Myasthenia Gravis

Awareness Month

to learn more, visit:

http:///myasthenia.org  

How I Met The Monster.....Episode Two

A year ago this week my life would change forever

Back to the story;  The night passed without incident, although I slept like I hadn't had any sleep for weeks.  I woke feeling refreshed in an odd sort of way.  I still had a tired run down feeling.  I was sure I had some kind of virus or something.  It was time to get on with my morning routine, so into the bathroom I went.  Passing my sister along the way she asked "what's wrong with your leg?" , "nothing, why?" I replied. She went on to tell me I was limping, I remember saying that I thought my legs were still a bit tired from yesterday!

Things seemed normal at first while washing up, but as I continued along my arms became weaker and weaker. I could hardly keep them up, again I felt like I was going to fall over!  I had never remembered feeling so weak in my entire life.  Even after having surgery to have my gallbladder removed I had more strength.  So with a great deal of effort and using the walls and furniture for support I returned to bed.  My sister was very concerned, she knew something wasn't right and wanted me to go to the emergency room.  But no, not this nurse!  I was sure whatever this was would pass on it's own.  I'm not really a go to the ER kind of person.  Having been  in the medical profession my whole life, THAT was the last place I wanted to go!

I really didn't feel any better. I reassured my sister that it was just a passing thing.  The truth was I was trying to convince myself of the same.  As the day passed my day was filled with doing as little as possible, and becoming so weak afterward I required a nap.  I continued to feel better when I woke up but that didn't last.  Again I was so weak I could barely lift my head, arms, or even turn myself in bed.  I was so scared by now, words couldn't describe the fear I was experiencing.  It was now well after midnight, I promised my sister I would let her take me to see my doctor in the morning.  I've always had a strong faith, but that night I never prayed harder.  Please GOD, if it's your will help me make it through the night!!


Morning came, the birds were chirping outside my window as they always do.  Their song was never more beautiful.  I was hardly able to sit up, things did not get better after resting as they had before.  I called to my sister in my strongest voice, which was now only a soft whisper.  She could barely hear me. She had already called the doctor's office.  I could come in as soon as I was ready.  My doctor was in their other office that morning, so I was scheduled to see the nurse practitioner.  My sister helped me wash up and dress, I was so weak I couldn't do anything without help.  With her arm for support she walked me to my SUV, she lifted my legs into it, I simply didn't have the strength.  Tears ran down my face, I tried not to let her see me cry.  She helped me out of the truck, we made our way to the building.  I had to sit and wait for the elevator, I could barely stand without help by this point.  


The nurse practitioner began her assessment.  I gave her a recap of the events leading up to my visit.  The funny thing was that I had just been to see my doctor two weeks before.  I have Type 2 Diabetes and see hm regularly.  All was well at that visit, my labs were great, my blood sugar was in great control.  I was feeling better than I had in a long time.  I was walking up to two miles daily, and losing weight at a nice healthy rate.  She thought I might have been experiencing Vertigo, so she prescribed medication to help with the symptoms.  She advised me to go to the ER if things didn't improve or got worse.  I really didn't think Vertigo was my problem, but I was too weak to question things.  We stopped at the pharmacy on the way home.  I took the first dose of meds and went to bed.   Tune in tomorrow for Episode Three...

June is Myasthenia Gravis
Awareness Month
to learn more visit:
http://myasthenia.org

How I Met The Monster.....Episode One

A year ago this week my life would change forever...

I remember the details like it was yesterday.  The day started out like any other.  I got up early as I usually did, fixed myself a cup of coffee, got freshened up and dressed.  I had a few things I needed to get done before it got hot. It was a bit warmer this week, but spring in NJ is sometimes like that, comfortable one day, hot and humid the next.  The house was super quiet that morning, my sister was in Delaware with my niece for some medical appointments. I had the house all to myself!! I love when that happens, sometimes silence is a blessing.

It was mid morning, I ran a few errands and made a quick trip to the market to get what I needed to finish dinner.  One of the things on my to-do list was to replace the oil in the deep fryer and give it a thorough cleaning.  I so hate to clean the fryer, I usually try to pawn this task off on my sister.  The house was still nice and cool so there was no need to turn the air conditioner on.  I remember working up such a sweat while cleaning the stupid fryer that I said out loud to myself,I am never cleaning this thing again.  I was dripping sweat from every part of my being, it was horrible, I even had sweat running off the tip of my nose.  I had never had that happen before.  I was soaked to the skin.  I knew I needed to take a shower to cool down, but felt like I was going to collapse, so I went and rested on my bed before I got in the shower.  Well much to my surprise I woke up an hour later.  I felt much better and went and took my shower, this horrible weakness overcame me again, I was afraid I was going to fall out of the shower!  So back to bed I went.  I was becoming a bit concerned, but figured it was the heat or my blood sugar.  I did a glucose check, that was fine so while I was at it I also checked my blood pressure, that was a little elevated, but it was nothing to fret about.  By now I felt so weak I could hardly keep my eyes open, I was asleep in a matter of minutes.  


The heat of the afternoon sun shining through my bedroom window woke me.  I felt rested and refreshed, or so I thought.  I got a few things ready for dinner and had to stop again, every time I tried to do something I was becoming more and more drained.  I really didn't want to go back to bed for a third time so I decided to take a short break and watch some TV in the living room.  Well just as I had earlier, I fell asleep again.  This time I was awakened by the sounds of my sister coming through the front door upon her return from her trip.  The first thing she said to me was " you look like shit, are you feeling okay?"  I remember saying to her a haven't felt good all day, I was fighting a headache.  When I heard my voice it startled me a bit, I sounded funny to myself, almost like I had a mouth full of marbles.  Again my sister asked, "are you SURE you're alright?"  I repeated "I'm fine, just a little tired" with my mouth full of marbles!!  "I think I just need to go lay down again, I repeated", but something was different this time.  I was trying to raise my head and gesture with my hands and arms as us Italians try to do when we talk, well to my shock I could barely lift my head or arms!  I mumbled to my sister "I weally need to go back to bed"!  I was unable to get out of the chair, she helped me up and walked me to my bedroom for what would be my third trip.  I knew something was horribly wrong, but I was scared, stubborn, and determined that whatever it was would pass after I got more rest.  I couldn't have been more wrong....   Tune in tomorrow for Episode Two... 

June is Myasthenia Gravis Awareness Month
to learn more visit: http://myasthenia.org

A Very Special Performance

Yesterday I had the pleasure of attending a music presentation at my niece Theresa's school. She is a student at a school for children with special needs.  This year's theme was Americana, the student's presented songs and dances representing different regions of our country.

This is not an easy task for any school, let alone a school for special students. Some have Autism, some developmentally delayed, some require the help of respirators, while others use wheelchairs. This was by far the BEST school program I've ever had the pleasure of attending. It wasn't because the presentations were Broadway or television quality. It was because of all the hard work and devotion the staff put into helping make every student a star in his or her own way.

The smiles on the faces of the students, staff, and families of these remarkable children was a sight to behold. They may never walk without assistance, talk, or run and play like others, but the pride that swelled from those students made you forget for a moment how difficult their lives are.

 Thank you Theresa! 

I'm so very proud of you, my special angel...

 

Day Lilies

The first Day Lily has opened in my yard! It made me think about how much I have in common with them.

Each flower blooms for only one day, it's orange blossom swaying in the gentle breeze on a warm spring day. Life with MG is sort of like that. There are days when I feel like the beautiful Day Lily gracing my flowerbeds, standing tall and proud.  Then they are days when as my blossom fades I need to rest and gather strength to bloom another day!   


Today I stood tall and proud, tonight I will rest to BLOOM again tomorrow!!

What Might Have Been...

Yesterday would have been my parents 54th wedding anniversary.  I often think about what might have been if they were both still living today.  I think about them at the oddest times. Sometimes it's something I've seen on television, a song I've heard on the radio, or the smell of something cooking or baking that sends a rush of memories my way.  They can be sad or happy but I embrace them just the same. 

When they were younger there were times when their relationship wasn't the best. But in time and with determination and hard work they grew into a very loving couple. They were friends and companions during sickness and health right to the very end.  

As I look back on my childhood, I know I was blessed with two of the best parents in the world. We were raised to be independent and respectful of ourselves and others. We were nurtured and loved.

Both my parents spent a large portion of their lives living with the daily burdens of chronic illness. It was never "why me" but what can I do to enjoy my life and family to the fullest.  So as I learn to adjust to a life with Myasthenia Gravis, I think of my parents daily struggles. I try not to live the "why me" life. I want to live the fullest life possible with Myasthenia Gravis coming along on my journey...

Happy Mother's Day !!

I have so many wonderful memories of my mom. She was a firm but fair person. She respected our desire to be individuals. We got along so well, we crocheted and crafted together. I learned care and compassion for others from her. Like so many mothers she did without so we always had what we needed. We never knew hunger, we never wanted for affection. I was truly blessed to have her for my mother and best friend!!

She always asked for the same thing from us each Mother's Day. That was to be good, sometimes that was easier said than done.  We felt we needed to give her more than being good. We gave her flowers and planted gardens, we drew pictures, wrote poems, and even placed each other in trash bags with giant bows on them to give ourselves as gifts! But one of her favorite things was this poem, it's kind of silly but it speaks volumes about mother's.

So this poem is for you Mom...

M is for the many things she gave me.. 

O is for the other things she gave me..

T is for the thousand's of things she gave me.. 

H is for the hundred's of things she gave me..

E is for everything she gave me..

R is for the rest of the things she gave me..

Put them all together they spell MOTHER, the one who gave the world to me!!

Happy Mother's Day in heaven!