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!

 

 

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!

 

 

 

 

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.

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.

 

 

 

 

 

 

 

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.

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.

 

 

 

The Lonely Path of Depression

Dear readers,  most of us don’t want to talk about “depression” or whatever name you or me want to call it.  It’s a delicate matter, a Pandora box, the white elephant in the room or the conversation.  Even if these are our “ifs” we don’t want to deal with them, or if we do we usually procrastinate it for a bit more, or at least that’s what I do.

When my daughter came in May from McCormick Seminary in Chicago to take care of me in the hospital she brought the subject up… more or less like this,

Lonely Path

“Mom, you should consider therapy to manage stress…”

She brought it up with the word “stress” because she thought I would be more receptive.

To which I replied  with a startled  look….

“I’ve been managing quite well for the past ten years.” (Whoa…. where did that come from)

To which she replied with her usual “Uhummm”, (keep in mind that she’s going to be a minister), she uses that little sound to gain some time before recollecting her thoughts for a good comeback.

The thing is that we were back and forth for a while, but she suddenly dropped the topic.  Just to bring it back when I got discharged from the hospital.  And my dear friends, she took me where she wanted and I ended up making that phone call.  I do need therapy.

Admitting it to myself is the hard part.

 

Depression like any other mental health issue stands in a lonely place and going there and facing it isn’t easy.

Even if I do want to think I’m happy most of the time, the truth is I’m not always  happy about my life.

My Myasthenia took away one of the things I loved about my life, my teaching career.

When I graduated, I told my husband  before my first day as a teacher,

“Am I blessed or what??? I get to do what I love the most and I get paid for it. I could do this for free.”

Little did I know that my teaching career wouldn’t last ten years.

Each year when the school year is about to begin is when I feel uneasy and pretty much sad.  My heart just skips a beat and I would give anything in this world just to get ready to go to work.

My husband and my neurologist try to make me feel better, telling me this or that, but deep inside it hurts really bad.

Now after all these years, I’m going to give therapy a try.

And this my dear friends, is only one aspect of the emotional ups and downs I go through each day, each week, each month and each year.

I have to cope with so many things and I’m sure all of you have to as well.

Not dealing with our inner turmoil hurts more than it heals, even if I don’t deal with it or bury it so deep within my soul feeling for a nanosecond it’s not there.  I can’t wish it away, it’s going to stay there until I deal with it.   It’s like a cancer cells that repairs all that’s close to it, just to get stronger and destroy everything that’s in its path.

The good that come out of all this is that I can’t give up and neither can you.  We have to stand strong and just put one step in front of the other in this day to day battle,  never loosing hope and gripping hard to our faith.

Thanks for being part of my road to wellness, see you around the corner.

MG & Flare-Ups: Humbug

Dear readers, when flare-ups come around my life I feel like the MG Scrooge and I just want to say “Humbug”.

I’m not going to write about the specifics of our flare-ups because each one of us will have a different story to tell.  I’d like to humbly share my feelings about these awful flare-ups reaching out to others so we can make the best of it together.

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I hate to feel weak.

It makes me cranky, sad and defeated. The worse part is knowing that my body is doing this to me AGAIN. It feels like I’m punching myself in the face. Ouch!

I wanted to make this point because sometimes other people think it’s easy for me to remain positive and cheery all the time when the truth is I’m  not feeling like that at all.

However being the hopeless believer I am, after my initial “humbug” I come around and begin the healing process once more.  At this point I’m not that interested in healing my body, but healing my drenched spirit. Getting it together and moving forward once again.

Even though my family loves me tons and tries to do the best to support me, sometimes I need to attain comfort within me so I can deal with the issues each relapse brings. I can have them a million times and each one of them is going to be different except for the weakness which all of us know is the common denominator.

Reading and listening to music helps me tons. One of my favorite blogs to read ever is from Cathy Chester,  she battles multiple sclerosis and through her writings I feel better because I can relate to many things she brings to the table.

 

One of my favorite authors is Jane Austin, and in her book Emma, there’s a quote I absolutely love,

“It is well to have as many holds upon happiness as possible.”

For all of us happiness means different things, but one is common to all human race and it’s about finding solace and peace within our lives. Facing a chronic illness takes away so much, that it’s darn difficult not to become Scrooges.

I would always think about the negative whey before bringing any positives into context. Nowadays, I’m trying to retrain my brain, so positive thinking comes always first.

Many times I’ve smirked at myself, thinking, “Who am I kidding?”, but I always come back and try to just collect myself and keep on going.  It’s so easy to give up and so hard to keep my spirits up.

But, you know my dear friends, all of us are a work in progress.  For some it’s gonna be easy, for others not so.  However, let’s hang in there, because like Phil Collins sings, “It’s gonna be all right.”

 Don’t forget to find meaning and purpose in each day, and  to reach out to others. When we give it a try, it’s pretty amazing.

I invite you to come along on my quest for wellness not only of my body, but most importantly of my soul