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!"