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!

 

 

 

 

 

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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!

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.

Message Stones

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.

MG Survival Guide

Dear readers,  summer in New York came and went, school began and I got caught in my day to day life routine until September 20th.

September 20th was the day that a category five hurricane hit Puerto Rico, becoming one of the deadliest storms in modern history.

All of you know as a fact that stress is an overall factor that causes exacerbation of our symptoms.

I asked myself,  how do I remain calm in the midst of a category 5 hurricane?

After watching the last forecast report at five where the meteorologist stated that it wasn’t about securing your home anymore, it was about saving  lives.

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WOW!!!!

Still I was able to remain calm, trying my best not to stress myself because I knew I was going to feel sick.  The dull feeling that creeps up on me each time my weakness decides to show up was calling  in absent.

As Maria crossed our Island  I prayed.  Reaching out to my faith helped me overcome the moment.  All I wanted was it to be over, little did I know that it would remain with its furious winds and waterfall for more than twenty-five hours.  When at last it subdued on the night between the 21st and 22nd I was grateful.

If your waiting for things I did or bought in preparation, sorry to disappoint you but this post isn’t about this.  My survival guide is quite simple, just have enough medications, have a way to contact your neurologist and remain as calm as you can because you definitely want to remain as far away of hospitals as you can.

Because when facing devastation caused by any natural disaster you do what you can with the resources you are left with.  You can’t control anything that is happening around you, but you can control what you are feeling on the inside.

All I did was make sure I was giving myself the inner talk I needed to be able to survive the weeks and months to come.

Thanks for stopping by and keeping me company during this rough road towards wellness and healing.

 

 

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.

 

 

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.