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”.

stairs

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!

 

 

 

 

 

Advertisements

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.

journey

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!

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.

SPACE 1

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!

 

 

 

 

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.

19055001_914484475360013_834169143207424960_o

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….

LICENCE

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.

3MegaCam

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.

sea shells 2

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.

myastheniafitness.jpg

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.

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.

P1340526

“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.