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.

 

 

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.

Life’s Manuscript

Dear readers, I like writing my blog mainly because I get to share my feelings with others, but most importantly with myself.

Well, probably your asking yourself, “Why?”, “Isn’t the point of having a blog, trying to get noticed out on the vast horizons of the world wide web?”.

Everyone seems to be craving getting their fifteen seconds of fame.

For me sharing my thoughts on life, wellness, and so much more people who have MG have to deal with is important, but finding my voice is as equal  or even more important.

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A voice that is often silenced the moment you say something that’s not in the manuscript. I don’t know if you get it or not, however for me it is a reality that hits home more often then I liked to admit.

The moment that I try to say something like,

“Life stinks.” (Believe me it truly does sometimes.).  Someone in my family will jump to begin saying, “You have so much.”

Do I???

These are the moments I miss my daughter the most.  She always says,

“Mamita, it’s okay if you think life stinks, you have a right to feel anything you want. Things don’t have to be okay.”

That’s part of dealing with all of this.

Having such a debilitating disease takes away so much, it’s overwhelming. Specially when you see everyone moving forward and you’re just sitting there watching as a bystander.

You know, I have an older sibling  who I admire very much.  We overcame a difficult childhood as best as we could.

I have mixed feeling each time I have to face the fact that he was able to complete a thirty year career in the Army overcoming a lot of things that happened to him along the way, and now as frosting on the cake, he’s about to begin a new career facing his retirement. He has a motorcycle he rides during the weekends and he seems to be happy most of the time.  In a nutshell, he’s free.

I miss my career so much it hurts sometimes.  Today the feeling of despair just creeped up on me and for just a second I felt without a purpose in life.

I thought , “Is this what people who feel like dyeing experience?

My life seems to be lived through a loophole, seeing only what others want me to see and even more dangerous pretending that everything is fine.

Nonetheless,  I snapped right out of it.

I still feel sad, but part of being well is our capacity to be sad.  As the day came to an end, I got my gardening gloves and this and that as I listened to Barbara Streisand sing about love, sorrow,  and life.  They say pets sense when something is wrong, so needless to say, my dog sat near me as I tweaked a bush or two, and got a longer pat than usual.

So my friends it’s fine to yell once in a while, even if it is to yourself, that life does suck for some more than others sometimes and it’s perfectly normal to feel bad about it and yourself, even if we snap out of it in a second or two.

See you around and remember to be kind to yourself and to others.

MG Diet: Getting Back To Where I Was

Dear readers, it’s not about looking young (good luck with that), it’s about being able to walk. So, today is a great day to begin getting there. 

Day 1: so far, so good.

Not bad at all, Rosemary & Olive Oil Flatbread, veggies and some cilantro with a tiny stick of Sargento cheese.

Now desert as an issue if you live with a 5- year old. 

Let’s walk our way to wellness together.