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!

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!

 

 

 

 

 

The Breath of Life

Dear readers, I began to toy with the idea of practicing yoga a couple of years ago. I’m ashamed to admit that it took me two years to begin breathing life into myself through this ancient practice because I was always making excuses.

Until I began  restorative yoga.

My three  go to positions  are soft fish (opens chest muscles and relaxes the upper back), supported frog (fosters a sense of safety and ease), and legs on a chair (helps venous drainage, improves circulation, and soothes cramped and swollen feet). The best part of them all is that they quiet and calm my mind. I’m forever grateful for finding an article Lori J Batcheller wrote and which I stumbled upon while waiting in my neurologist’s office, that featured these three positions.

I’m just going to say that “it’s addictive”!

I get up at five in the morning, when the house is quite and at peace and practice mindful and restorative yoga while listening to my favorite meditations on Spotify.

I tune my lungs and just let life flow inside me. Life can’t get better than this.

I’ve come to understand that there is no thing as big changes in our lifestyles if small and attainable intentions are not set in place.

Thanks for stopping by, and remember accept and love yourself just as you are. Hasta pronto!

The Power Within

Dear readers, finding strength to keep our commitments is no easy task.  We plan, prepare and do our best to follow through and reach the goals we have set for ourselves. Many times failing along the way, and letting discouragement hit us fast and furiously.

One of the worst things we experience is discouragement, it just doesn’t let us move forward. It’s like a pond of moving sand that sucks us in with no way out. The thing is that we have the power within ourselves to change all of this.

We can reverse discouragement to encouragement just by changing our inner dialogues and setting an intention.  Remaining encouraged when dealing with body image issues related to weight gain is tricky.

Weight gain is troublesome for everyone who relies heavily on steroids,  myself being one of them.   Discouragement is a central part of how I feel when I fail to follow through on my well meant  plan of not eating at night.  Night munchies are difficult to control and if you add the element of the appetite you work up not only because usually steroids do that to you, but also because it causes yet another problematic situation, insomnia. So here we have yet another pill with multiple side effects.  All those calories consumed during the night don’t help at all if I’m trying to manage my weight.

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This been said, let’s talk about my journeys.

I’ve come up with an alternative plan on how to minimize the effects of mindless nocturnal munchies.  For three days in a row I begin something I call “My Three Day Journey”, during these three days I practice intermittent fasting, mindful eating and write my intention for the day in the morning and a highlight of that same day when it’s over practicing gratitude.   I use my bullet journal for this, so I can go back and read highlights from prior days that inspire me.

Very early  in the morning I set an intention of not eating nothing past 6:00 or 7:00 pm, only tea.  My mind is already telling my body that we will not be eating pass that hour, so I try to eat a light dinner prior to that hour and take 100 steps afterwards to boost my digestion.  These steps usually are around my house and not in a hurry, I walk in a mindful centered way.  If you are using a walking cane it’s fine, you just go little by little.  These  little things add up and make a huge difference on the outcome of how you feel later on throughout the days to come.

With the passing of each day you’ll begin to feel encouraged about your progress.  To feel better about yourself upon the completion of your journey.

After each  journey I’ve taken,  I become a little bit more aware each time about the importance of taking good care of my body even it it’s a little impaired.  Affirming my acceptance of loving myself just as I am makes it less a battlefront and more an exercise of compassion towards myself.  The beauty of my journeys is that I decide when I want to begin another one.

It’s great to wake up in the morning and not feel guilty about all the wrong things I ate the prior night, and to regain control of my weight.  These small changes have added up to significant weight loss during a span of time for me, and by changing them on a conscious level the pounds remain off.

Hope this helped or inspired someone trying to conquer MG or any other illness little by little.  Happy travels to anyone who decides to take on his or her own three day journey.  The important thing is to customize your journey, you are your best advocate and don’t forget to talk to your doctor about any small or big steps you plan to take.

See you around the corner.  Hasta pronto!

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.

Maleta and Go

Dear readers, thanks for stopping by and reading my blog.

I was thinking about something to share with you and I came up with my recent appointment with my neuro.   Navigating through the rapids of our neuro’s isn’t easy.  Just a couple of days ago I visited my doctor ‘s office for a check up, and since I’m not doing well I figured,  hmmm “He’s sending me to the hospital to get some Gamma and get me back on track.”, like usual.

Well, it didn’t happen.

I had all my stuff packed and ready for my seven day stay at the “Resort and Spa” a/k/a Bellavista Hospital , as we Puerto Ricans say I was all set for “Maleta and go”, which means I was up and ready to face whatever it is I needed to do.

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Nevertheless, he wasn’t going down that path, not at least  this time around.

He decided to  travel towards the Mestinon Extended Lane,  leaving my Prednisone dose a bit towards the high end.  Oh, and let me not forget that we talked about getting my thymus tissue removed.

The point I’m trying to make (and probably one you’ll share with me) is that getting on and off this roller coaster called Myasthenia is a hell of a thing.  There are so many twists and turns that it’s almost impossible  to land in one piece without experiencing the scare of your life.

I don’t know how long I can stay away from my next Gamma, but as of right now I’m grateful I’m home and not admitted in isolation in a nearby clinic.

The dice are rolled each time we come across a crisis and there is not much we can do about it.  However, the important thing for me is being able to calmly (I usually do the opposite) explore all my choices because at the end of the day  those are the choices that count.

Ultimately,  we are the ones who decide if we are “maleta and go” ready or if we need a bit more time to adjust and move forward with whatever it is we need to do. Nobody can take that away from us.

And remember to always be kind to yourself and move forward even if we can only take baby steps and I’m not talking in figurative language.

Take care.

 

Day 4: The Pasta Daze

Dear readers, these past few days have been challenging.

I’ve felt like a character of Poe’s  story “The Tell Tale Heart”, but instead of a heartbeat it’s more like a screaming cinnamon bagel that’s calling me.

I’m holding my own (if you don’t count my midnight bagel crime) or my cravings for some Pizza Hut pasta. Yogurts and salads will have to do.

  • Two things are keeping me motivated: one, my husband who is dieting with me, and; two, I don’t want mobility issues this coming Christmas.

So, I should place next to the pasta a picture of my walking cane, as a reminder to which way I want to go.

Remember, be kind to yourself and make me some company on my road to wellness.

Day 2: Dealing with an upset tummy 

Dear readers, all of us know how prednison can spike our craves to eat “anything” that has SUGAR. And not happy about that I have the situation that I developed Diabetes because of IT.

So, yesterday I felt the urge to dip in to some cake frusting in the fridge. Super bad idea!

Which lead me to one of the worst tummy aches I’ve ever had. 

But, I’m still hanging in there. 

Day 3 is all about getting some pampering. 

Hoping everyone is feeling good.

And, don’t forget to make me company on my trip to wellness.

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. 

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.