Our Enabled Spirits

Dear readers, I experienced the blessing of walking through the New York Botanical Gardens a few days ago. Now, don’t get the wrong impression about the walking part, I utilized the tram and walked just a bit. Yet, I walked in spirit through it all.

I am so grateful my spirit is enabled within my disabled body.

I truly believe all living species have a collective memory and we all breath the same air, and being in the midst of such beautiful surroundings I felt as if I could brush the sky with the tips of my fingers as the century old trees that live there and me became one.

When I was catching my breath sitting on a bench in the Rock Garden, I couldn’t stop thinking about Heaven.

People depending on their experiences have different perceptions on what they think Heaven may or may not look like. Since, I’m a generational gardener, for me it’s all in the soil. So, for a brief moment I had my little piece of Heaven.

With a grateful heart I closed my eyes and made a silent prayer for myself, asking God to give me guidance so I can be my best version, never taking advantage of anything or anyone to someday live in my eternal garden in peace with the life I lived in this wonderful world.

Thanks for stopping by, be gentle with yourself and others. Gentle goes a very long way.

Hasta pronto!

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The Big, The Little & All In Between

Dear readers, as I pushed through the doors leading to the chapel at Union Theological Seminary to get some ice cream after my daughter’s graduation and I saw for the very first time a flight of stairs that could have been as high as Mount Everest, the words that came through my mouth were, “Jesus Christ”.

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You know life is like that sometimes, you just don’t expect situations that startle and alter your course and yet there they are.  Mostly we go on to voice just any words that comes to mind and face two alternatives, or either we back away or we tackle them full throttle.

Well I decided to tackle Mount Everest full throttle.  So off I went, step by step using the side bar as my assistant, I was almost half through when one of my daughter’s friends, Shawn, came to my rescue.   He offered me his hand and I gracefully took it and we went on, he gently said, “ice cream awaits”.

No explanations were asked or given as to why I  couldn’t  manage a three short flight of stairs.  When we reached our destination a thank you and hug were given and exchanged and we made the line together to get our much desired ice cream cone.

Having this disability has taught me many valuable life lessons, specially that I can’t back away from events in my life that may be seen as problems.  It’s easy and cowardice to do nothing at all to conquer a barrier.

In the minute I began my climb I took control of my life, yet I did need help, but that’s fine.  It’s all part of living with MG, I usually am going to need help.  The thing is that I accept that help gracefully and with gratitude.  Sometimes that help comes from a total stranger, a friend or a family member and each and every time it does, I’m just grateful.  I’ve learned not to resent that helping hand, but to embrace it.

I utilize this same approach for the big, little and all in between situations that suffice in my life.

I’ve come to terms with the phrase, “I used to do”, and have replaced it with,  “I do with the help of”.  The most important for me now a days is feeling I have control of my life and living the best I can utilizing the resources I have at hand.  Sometimes it means letting go and relinquishing the past.  It’s best to focus on the now and let the tomorrow take care of itself.

We are still in control of who we are and how we choose to live our lives.

See you around the corner and remember to be kind to yourself and to those who surround you every day.

Hasta pronto!

 

 

 

 

 

MG, Mind & Body

Dear readers, all of us know the ups and downs that go on when you live with a chronic illness like Myasthenia Gravis.  Our disability comes and goes like waves that hit the beach any given day.  Some days rough,  and others, subtle and gentle.

What makes it even more difficult is that we have what is known as an invisible disease. I am sure that most of us at one point or the other have heard, “you look really great”, even when we are trying to make a point of how bad we are feeling because  we are going through a flare.

So I  set myself on a mission!

I re-embarked myself on a journey of wellness.

Not an easy one by no matters because I find myself constantly battling with toxicity in every corner of my world.  I would like to stress out the word re-embark because when I began this blog it was precisely about experiencing wellness and becoming fit not necessarily in a body building way, but in a mind-body way.

What probably went wrong was that I didn’t have the tools to reach within myself to achieve my pursuit of wellness and healing.

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Precisely this blog was about recording my experiences and trying to inspire others along the way.  Not only do I want to experience wellness and healing on a personal level,  but I want others as well to be able to achieve the same thing.

It’s been a while since I’ve began to make small changes in my life that have had amazing results.  To an extent, that I was able to detour a Gamma treatment for now.  I don’t know if I’ll have to go through one later on during the year, but for the present moment I’m just grateful I didn’t go to the hospital in the present moment.

I’ve come to learn and still am, by the way,  is that we are more than our bodies.  We can already have a disseminated illness, to a sense irreversible, however we can still control many of the things that go on with us.  WE CAN NOT BE WELL IF WE DO NOT GO THROUGH A PROCESS OF HEALING not only our bodies, but our souls or minds.

This initial post is about just coming upon the realization that we have the power within ourselves to reach in and move forward.  MG is not stronger than our body-mind connections.

I will forever be grateful for stumbling on Fear from Thich Nhat Hanh and the groundbreaking work of Dr. Deepak Chopra.

Connect with you soon.  Hasta pronto!

 

 

 

 

We Will Overcome

Dear readers, when Hurricane Maria hammered Puerto Rico, things looked dim and my thoughts constantly drifted back and forth.

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One of the experiences that took a toll on my mental health was when I stood in line with my husband outside a supermarket, we frequently go to, and waited for instructions on how we were going to purchase some groceries we needed at home.  Part of the process was to write it down on a piece of paper, and then when my turn came I was to tell her how many of each, and she would tell us if the item we wanted was available.  That shook me to my core! Groceries that I had always purchased became a commodity, worry stormed me as I thought about my six-year-old at home.

Was food scarce? Was this going to be how things were going to be from now on? I felt so overwhelmed that I thought I was going to be sick.

News about the ports on the island, the gasoline shortage, the destruction of our communication infrastructure, and electrical grid stormed us day and night. At some point, I didn’t know if my husband’s portable radio was a blessing or a curse.

Nothing that was happening prevented the Sun to come down and then come shining once again after the night. The planet continued its spin and acceptance of the events came with it.

I even came used to  the constant sound of  of the Army combat helicopters blades as they flew all day  through our mountainside working on a nearby dam. My husband served in the Army Reserve so for him it wasn’t a thing, however for me it was.  I could only think about people who live in a combat zone, even if in our case they were here for a humanitarian reason.

The important thing was that we were fine, maybe without the commodities we usually enjoyed, but we had enough.  Our house was still standing and we learned to use the resources we had at hand, and when things eventually returned to normalcy I’ve made sure to practice gratitude each day of my life, even if life does bring me storms.

Living with Myasthenia Gravis is one of those storms, and even if it’s  tidal waves come storming into my everyday life without mercy every now and then, leaving me frightened about my future, I  face it with courage, looking at it straight in the eye and saying to myself, “I will overcome this.”

And I do my dear friend, and you will too.  Never loosing sight of the important things in life because that’s whats going to pull us through all our storms.

Thanks for stopping by and keeping me company on this treacherous road to wellness and remember always be kind to yourself and others.

 

 

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.