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