Mind Over Body: My Choice!

Dear readers, all of us know by experience that living with a disability usually doesn’t produce joy or any sort of happiness. However, if we are to strive within our Myasthenia or any other form of chronic illness we would need to shift the gears of our thoughts.

What  does that mean?

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photo image via morguefile

Well  I’ll just talk  about my experience, not in an ego centered way, but just telling you how I shifted my gears.  You know not all that works for one person makes a perfect fit for others and I’m not really into that either.  Some people think that their own choices are the miraculous solution for others and that’s not how it  works.

I’m  more about sharing what has worked for me and try to inspire others to look for their own thing. An autoimmune disease affects each person in different ways and forms. My personal objective is to share and create a space where you can try it out or just work something out that fits your needs.

Coming back to the topic at hand, after the necessary disclosure, when I first began dealing with the ups and downs of   living with Myasthenia to be honest  to the truth I only found disappointment, sadness,  isolation and a bit of anger all mixed in one big bottle.  For a while, I couldn’t even bring myself to talk about it.

My teaching career was over, I barely could take care of myself and  to top it all only my family and  close friends knew and understood my disease. To the rest of the world I looked perfectly normal.

It took me some time in a hospital bed to rethink all my situation.

I came to a crossroad where I would follow  the  path already  set in place or take another yet to be created.  One  where I would find joy in simple things in life.  Prior to that I really didn’t dig the whole gratitude thing, I would ask myself and what is it that I need to be grateful for?

However, there was a trick  to all this,  to be able to begin walking down the path of joy and gratitude, I would need to open up my heart and cultivate acceptance.   I would have to let go of patterns of negative thoughts that were ingrained in my spirit.  This written down sounds so spiritual and easy, but believe me it’s not. It’s actually excruciating and it takes a very long time.  It’s been more than thirteen years that I’ve been trying to achieve this each and every day since.

Once  in a while my bitterness shows up and I have to work myself through it. But, I say  to myself, “Hey, give me some slack,  I’m only human!” I don’t fight it off, I just receive  the emotion and make it part of who I am, the only thing different  is that I  keep on going and rediscover a place within me where I can find some peace and quiet to re- calibrate and move on.

Those who support you also make a huge difference in the outcome. Basically because when I’m not able to find that space within me they guide me to where it is. Reminding me all I have to be grateful for.

Positive and loving emotions do much more for me than negative and pessimistic ones.

Good vibes lift you up, while negative ones pull you down. Like everybody knows this, but it  easier said than felt.

Give it a try!!!!!  Your immune system  and soul will thank  you for it. Remember our bodies are just a small fraction of who we really are. Our mind can always control our body.  Our mind can’t take away our MG, but it can make our life so much better when we cultivate good things through it.  I hope you can take up my invite and begin some sort of healing process.

See you around and thanks for stopping by and remember be kind and compassionate to yourself.  Hasta pronto!

 

 

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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.

 

 

Prognosis: Hope

Dear snowflakes, as the days spent in the hospital fade away and I get on with getting a little bit better each day I wonder about how I feel about the guarded prognosis I got when I was discharged from the hospital.

Guarded in medical terms roughly means that, it is usually more ill than a serious prognosis, but not as ill as critical. The doctor is not exactly sure of what the patient’s probability for recovery might be, but they still believe that the patient has a (slight) chance of recovery.

For those of us who live with MG that “slight chance” can be filled with what ifs.

I need to hold on the that slight chance of recovery.

Recovery to a place where I was before, a healthy place. A place where I can go on with my life without worrying to much about the tight schedule I have for my meds, or about taking frequent breaks just to do some housework, or trying to not stress out too much, or keeping cool in this hell of a summer.

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via morguefile

Breaking those new frontiers of wellness can be achieved if I hold on to hope.

Hope is the motor that moves me forward. It heals my spirit and calms my body.

Hope gives that “slight chance of recovery” a whole new light.

Hope is the foundation for our doctors, nurses and caregivers.  Hope is what keeps everybody believing things will get better.

Like my neurologist told me today, “if you’re not worse, than you’re better.”

His affirmation comes from two different places, like if it’s not right than it’s left.  I don’t know if I was supposed to feel good about it, but at least I didn’t feel bad either. It felt like a pat on the shoulder with a push hiding somewhere.

My experience with Gamma is that is usually makes me sicker to than get me better. Crazy dichotomy, but it’s the reality of my realm.

Facing the possibility of a new treatment ahead of me in a couple of weeks, if this one doesn’t kick off is not something I want to think about to much. Specially with Solaris being something relatively new. With all the side effects that it surely will tag along is a challenge that lays ahead.

Nonetheless, I will continue to hang on to my hope.  Not only to hang on to it by myself, but to be grateful for it each day.  And as the day rises and all the sounds of the new day begin announcing happily that we get to live one more day on this blue ball in the Universe I’ll write in my prayer book in contemplation asking my dear Lord to fulfill my heart and heal my body with an everlasting and eternal stream of hope.

Thanks for sharing with me a little bit of your time, be kind to yourself and remember we all heal in different ways we just need to figure out which one works for each one of us.

See you on my road to recovery.

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.

A Prayer For You

Dear readers,  I take my life one day at a time and I’m sure that all of you do the same thing.

Our routines and so much more have a direct impact on those who surround and love us deeply. They live through our ups and downs, sometimes voicing their feelings and other times just remaining silent.  It’s hard on us and at the same time for them as well.

Sometimes I forget that and today as I went through my daughter’s things because she  recently left to begin her new school year in New York I was remembered of that as I read   a prayer she wrote during the Summer.  One that I share with all of you today with much love.

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“I heard once that prayer is about redefining our desires.  It is about being open to ask for guidance and even though we do not control our journey that does not mean we are astray.

Today I pray open to hear, even when that fills me with fear.  

Dear Gracious God, I am not praying to give excuses or explain my silence.  Whom I am trying to fool? My silence is yet nothing more than silent panic. 

You know that.

I pray for longer walks, for less tiredness. 

I pray for more smiles and restfulness of spirit.

I pray that the spirit might comfort the body.

I pray for shorter naps and more energy.

I pray for coffee @3 pm between shared stories. 

I pray for our usual complicity to remain intact in times of sickness. 

I pray for our unspoken bond to grow stronger in the face of weakness.

I pray that we can share prayers.

I pray that her body can gain strength while her spirit stands strong. 

For now, I pray that she can rest knowing that we will do our best holding her so she does not fall.

Amen”

May the words of this prayer belong to all of us today.