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