The Brazilian Connection

Dear readers, as an MG patient you just accept and learn to deal with flares.  I’m not saying they are easy, but it’s just something we do.  We know the ropes of Myashtenia. However,  sometimes we have to go through “what the ?????” moments.  Feel free to fill in the interrogative signs with whatever you want.

As Ian would say, “what the fart”  is going on????

You are probably asking yourself, “Ahhh so, what is that thing of the Brazilian connection all about Missy,  get to the point”.

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Well my dear friends to get there, I’m going to have to go back a little in time.

On Friday I visited my neumologist because I got banged with the elephant on my chest syndrome we all know to well.  I was going through the tests for pulmonary weakness, when the technician decided to share some interesting facts about Myasthenia.

This is how it went down,

“Oh, so since when do you know you have Myasthenia?”

(Me barely breathing during my tests)

“2008”

“Hum, did you visit Brazil or any other exotic destination?”

I felt like having a Sponge Bob moment, like when his eyeballs just fall off his face.

Me gasping, “MG is autoimmune.”

“No, no… I studied this disease in school ( I would like to know which, to write a really bad review) it has to do with a virus.  Guillain-Barre, Myasthenia,  and  ALS,  ALL  are the same thing. Most of the people who get them have been down to Brazil.”

In a “AS A MATTER OF A FACT” tone of voice.

At this point, I thanked God and the Universe that my husband was outside of the office waiting for the tests to be finished,  and not inside with me because he would have had a fit.  When I told my children they were extremely aggravated and angry about the incident.

I only ask myself, how much do we really need to be put up with?

If people don’t know, I don’t care a snicker, but when my healthcare providers don’t know,  it’s just plain terrible.  My neumologist is a caring and kind human being, but he should LOOK into what his respiratory technicians are putting his patients through.

She needs to go back to school and learn her business because she doesn’t deal with peanuts, but people.

The horrific thing is that, the Brazilian connection wasn’t even the worst thing.  While performing my routine tests, she paid her bills by phone, searched it continuously and even took a bathroom break.  I think I heard her fart in the doorway.

So, my dear friends there you have it.  Flares aren’t the worst things that happen to us, the very worst are flares and incompetency, insensibility and ignorance all mixed up together.

Thanks for stopping by and remember to be kind to yourself and others.  Keep me company of this treacherous rode towards wellness of the body and soul.

 

 

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You Can Do This or That

Dear readers,  as a MG patient I get a lot of “you  can’t do this” or “you can’t do that” sort of speech more often than I should.  However, once in a while my ears turn deaf to all those assumptions.

Against to what other people may think they know about me and my MG, I decided to plan a holiday in New York and visit my daughter in school, where I would do this and that.

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I had a schedule with my six year old and was not going to deviate from it.

Consequently my journey began.

I  walked blocks and blocks on Amsterdam to buy Hungarian pastries and find about how they’re done and what’s in them.  I returned to the shop twice and saw everything in between.

I walked the Central Park Zoo and made sure he saw everything there was to see.  Actually I compromised for my family’s mental stability, my goal was Bronx Zoo.  Didn’t get around this time, but sure am next time.

I hopped on the Metro to the Museum and sat on a bench with my friend Teddy Roosevelt chatting about why was he interested in Puerto Rico after winning the Hispanic War back at the end of the 19th century, and had a wonderful time with Ian digging some artifacts out of the sand.

Even though I am a very resilient person, I could have not done it without a little bit of help of a high dose a prednisone my neuro let me have while I was in NYC.   Now it’s time to get back to my day to day life and my prednisone needs to come down. I know I’ll miss having that little extra pump for my day, but vacations are the small pockets in life where you get to live with a little bit of fantasy going on and sometimes we just need to have that in our lives if even for a small amount of time.

Meanwhile my friends,  let go even if for a little bit, be kind to yourself and others and make me company on my many journeys  to wellness.  Thanks for stopping by.

See you around fellow snowflakes.

 

Revoked

Dear readers, Prince Hamlet’s immortal “to be or not to be: that is the question” echoed through me ears as I heard the DMV’s employee’s  voice, as I asked about my handicap parking permit….

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DMV lady:  Your neuro needs to fill in some additional information..

Me:  Okay, he can do that, but what’s the point of the questions anyway??

DMV lady:  Well, it does have a point you see, with this additional information we determine if you can continue to drive or not.  If the determination is against you, than your licence is going to be revoked, good news though is that you’ll get your handicap parking permit.

Me: Whaaaaaat!!!!  Are you serious?  I don’t drive great distances, but I do go up and about my neighborhood.

DMV lady: You’ll have to decide, which is more important BEFORE submitting the additional info.

I walked towards my husband, with a “you have to be kidding me” face.  When I told him we were both surprised to an extent that we were speechless for a while.  I’m still trying to figure out what happened there.

However, the truth is that I need my driving’s licence much more than I do my parking permit. So, there you guys my decision is “not to be” and my question is answered.

Next time I’m aggravated about my parking permit, I’ll just be thankful I have my driver’s licence at least for the time being.

Life is life and some things are just out of our hands.   We need to face them and move forward, if we dwell too much around them they’ll just weigh us down.

Thanks for stopping by and most importantly  spread awareness during this month  about Myasthenia Gravis and the day to day struggles we face each and every day.

See you around fellow snowflakes.

Me Time With MG

This morning my daughter told me, “I need some “me time” so I’m taking a walk in the park, got some coffee and than I can face the anxieties my life has.”

Myasthenia Gravis makes us refocus on things in a different way.  Our “Me Time” has to evolve into something  we can do.   The important thing is never giving up trying to reshape our life.

Let’s say I can’t jog in the morning, but maybe I can walk.

Let’s say today I can’t walk without help, than I’ll sit in a nice comfortable chair to appreciate the little things in life and the wonderful sounds we can hear in a park.

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Let’s say that today I can’t sit straight for long periods of time, than let me sit up on my bed and listen to my favorite tunes or read a magazine or book.

Myasthenia brings good and bad days and we can’t just wish the bad ones away.

I believe we can do most of the things we love in life, just with a little twist to them.

Negativism  brings nothing good, it’s much better to stay on the positive side of things.

Like Mother Teresa once said, “Be happy in the moment, that’s enough.  Each moment is all we need, not more.”

So my dear friends, rekindle your love for “me time” we still have the abilities inside of us to live our lives the best we can. The only difference is that we have to reshape things to fit our realities.  It’s not hard after a while, you just need to believe in yourself.

Thanks for keeping me company in this path we call Myasthenia Gravis.  It’s not about the journey, but about all we can learn each step of the way.

 

 

 

 

 

 

 

The Fixer Upper

Dear readers, many of us become lonely clowns trying to cheer everyone up, nonetheless feeling like empty shells with a smile stamped on our faces.

It’s a hard truth to face.

Probably the hardest thing to take in is people telling you how good you look when you’re not feeling well at all.

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Recently my meds were changed and my body is yelling at full throttle that something is wrong.  For more than ten years I’ve taken my medicines on a military schedule and now it’s going to be released little by little throughout different dosages and hours.

Tremors, feeling nauseous,  and being able to hold a meal have been a challenge to take in. But, I’m giving it my best.

Just wondering sometimes why does it have to be trying to cheer up anyone other than myself.  Surviving a difficult childhood left me with many scars, maybe the one that I resent the most is that I like to please those who surround me more than I need to. Early on I learned that pleasing my parents would keep me out of trouble, so I became a fixer upper. I’m not sure that’s even a term, but wanting to fix things for others is.

I need just to take a deep breath and give myself a break. It’s fine if I’m not feeling well, and I have all the right in this Universe to say it. I just have to make myself do it.

In the meanwhile I have my blog to turn to each time I need a shout out.  The best thing probably is that no one in my family takes time to read it so I can write anything I want without feeling guilty about it.

Trying to reach a point in your life where wellness is for real is hard to achieve and I’m not sure  we can get there.  Nonetheless,  we need something to look forward to while coping with this draining disease.

So, thanks for stopping by and let us aspire to keep moving forward however hard it can become to bare.  See you around.

Birds Just Don’t Fly

Dear readers, I began this blog about a year ago after a fellow blogger Cathy Chester, who is a ferocious advocate for MS, suggested it during a twitter conversation.

Creating awareness should be our number one priority and  also creating spaces where we can share what it is to live with MG with others who go through the same things on a daily basis.

Myasthenia isn’t called the snowflake  disease for nothing, we all are different, but at the same time  share common denominators. As so many other immune diseases.

We all aspire feeling well enough to complete tasks as simple as showering, walking, or eating. These simple day to day tasks are colossal for us sometimes and not only take away from our quality of life, but also from our very core.

We struggle each day with our feelings and emotions trying to find sense in our lives and figuring out how not to just give up.

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It took me some time, but I think that finally I’ve found a glimpse on  my way in this tumultuous road of wellness.  Some of us tend to think that wellness is the same thing as health, and it’s not.

I ask myself, how can a person who is not healthy achieve a state of wellness that can overcome anything she or he has to endure?

To be honest, I don’t know.  I’m trying to discover the answer to this question through my journal,  jotting down how I feel along my journeys.

Each afternoon a flock of white birds fly above my yard and they are perfectly synchronized nevertheless, their perfection wasn’t achieved without at least falling down a couple of times and finding their exact place in the flock.

So my friends, I’m not going to find my purpose or be well without a bit of pain each time I fall.  However, what brings me hope is believing that I will be able to fly at some point and find a perfect place for myself in this thing called life.

Thanks for stopping by and reading my blog and making me company in my journey through life.

See you around.

Facing Our Share of Loneliness

Dear readers,  regardless to say and I’m sure all of you know that life brings hundreds of sounds that people, animals or things make into our lives.  However,  I’ve lived  through days surrounded by these sounds and at the same time I’ve felt a compelling sense of loneliness.

We all face our share of loneliness.

The ironic part is that like robots  we respond, interact and even manage to laugh  about or with those who surround us. However, we feel lonely in a room full of people.

Since I have a big family, I have a busy phone and kitchen. My husband and myself satellite around our kitchen and phones. I listen to endless conversations and always try to be a good listener and to an extent try to fix things that I feel are wrong if I can. In other words, I try to make like comfortable for all of them. Fill in voids with my voice and cheer them with my laughter, comfort and hug them all as much as I can. Nevertheless, I’m trapped in a lonely world sometimes.

Lonely Path

Living with MG is a lonely path.

It would be nice to listen to someone ask me not if I’m well or not, but to listen to,

“How are you feeling?” But for real.  Actually an outlet to let go of all my steam,  to bear my soul, or to spill it all out.

My loneliness is not but a stream of thoughts about my life and how it’s changed during the past ten years.

My loneliness is a fair cry of a bird that wants to spread her wings and fly to the vast horizons.

Don’t get me wrong I know that I’m loved and cherished, and  always have been.  That’s not something I’m enjoying now because I’m ill, but it’s been part of my life ever since he became part of it as well. However, that doesn’t take away how I feel.

I’ve come to terms with the fact that my loneliness is mine to face only.

So my dear friends, next time the sun comes up with its majestic sunrise and accompanying sounds I will move on trying to cope with my loneliness and making the best of it.  Maybe next time around  I’ll find an opportunity to talk to someone of things that are important at least to me.

Don’t forget to be kind to yourself and to others.

Thanks for stopping by to read about life with Myasthenia and making me company on my journey to wellness.  See you around.