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.

Advertisements

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.

Life’s Manuscript

Dear readers, I like writing my blog mainly because I get to share my feelings with others, but most importantly with myself.

Well, probably your asking yourself, “Why?”, “Isn’t the point of having a blog, trying to get noticed out on the vast horizons of the world wide web?”.

Everyone seems to be craving getting their fifteen seconds of fame.

For me sharing my thoughts on life, wellness, and so much more people who have MG have to deal with is important, but finding my voice is as equal  or even more important.

file0001394368144.jpg

A voice that is often silenced the moment you say something that’s not in the manuscript. I don’t know if you get it or not, however for me it is a reality that hits home more often then I liked to admit.

The moment that I try to say something like,

“Life stinks.” (Believe me it truly does sometimes.).  Someone in my family will jump to begin saying, “You have so much.”

Do I???

These are the moments I miss my daughter the most.  She always says,

“Mamita, it’s okay if you think life stinks, you have a right to feel anything you want. Things don’t have to be okay.”

That’s part of dealing with all of this.

Having such a debilitating disease takes away so much, it’s overwhelming. Specially when you see everyone moving forward and you’re just sitting there watching as a bystander.

You know, I have an older sibling  who I admire very much.  We overcame a difficult childhood as best as we could.

I have mixed feeling each time I have to face the fact that he was able to complete a thirty year career in the Army overcoming a lot of things that happened to him along the way, and now as frosting on the cake, he’s about to begin a new career facing his retirement. He has a motorcycle he rides during the weekends and he seems to be happy most of the time.  In a nutshell, he’s free.

I miss my career so much it hurts sometimes.  Today the feeling of despair just creeped up on me and for just a second I felt without a purpose in life.

I thought , “Is this what people who feel like dyeing experience?

My life seems to be lived through a loophole, seeing only what others want me to see and even more dangerous pretending that everything is fine.

Nonetheless,  I snapped right out of it.

I still feel sad, but part of being well is our capacity to be sad.  As the day came to an end, I got my gardening gloves and this and that as I listened to Barbara Streisand sing about love, sorrow,  and life.  They say pets sense when something is wrong, so needless to say, my dog sat near me as I tweaked a bush or two, and got a longer pat than usual.

So my friends it’s fine to yell once in a while, even if it is to yourself, that life does suck for some more than others sometimes and it’s perfectly normal to feel bad about it and yourself, even if we snap out of it in a second or two.

See you around and remember to be kind to yourself and to others.

Back to Day One

Dear readers, trapped in the nuisance of dieting I’ve lost track of the days.

For starters, my husband got on the dieting train and he’s done much better than me.

I’ve mostly been haunted by PMS.  I’m still wondering why in the heck am I still getting periods at my age.  I will be more than happy when my period goes away forever.

Now getting back on track is going to take some willpower.

cheese

via morguefile

For me it’s all about the cheese.  I love to eat cheese!

As I write  this post some cheese and crackers are laughing at me.  Teasing me, luring me into just taking a bite.  They  know I’m not suppose to snack on them.  However, my grandma would always say, “El que rie ultimo, rie mejor” which means thee who laughs at the end, laughs with more joy.

So, if I were the cheese that’s in the refrigerator and the crackers in the pantry, I would be extremely quiet because I could use some carbohydrates right now.

Which leads us to the most important part of this all.

Tomorrow I’m at Day 1 all over again.

And this time I intend to go straight to Day 10 without hesitation. Why Day 10?  Well, because those first ten days are crucial to staying on track.  My husband already is feeling the benefits of dieting, his size 36 pants need a tighter belt for fitting.

Finally I just need to add one word to this, FOCUS.

It has to become my mantra for pulling this off.  Each time temptation comes around the corner, I need to repeat FOCUS.

FOCUS on feeling better,

FOCUS on walking better,

FOCUS on living better, and so much more.

And don’t forget to do something that makes someone’s day better;  make me company on my way to wellness; and, repeat my mantra FOCUS.

 

 

 

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.

 

 

 

The Patient of 152B

Dear readers, it’s been a while since I’ve shared anything with you.

Sorry for that but, I’ve been feeling weak for some time and all of us know that when we’re weak, we’re weak.  Everything in our lives becomes a colossal task.NYUWork-009

via morguefile

Which by the way got me admitted on Monday for an IVGG treatment.

When I’m in the hospital I feel vulnerable, and a bit lost to tell you the truth.  It’s nice when I hear a resident call me by my name, instead of the patient in 152B.

Most of the nurses who work here don’t really know much of Myasthenia, never mind pronounce it.  Yesterday I had the opportunity of having a young nurse who actually came around and talked to me about MG.

As she was giving me meds and changing my infusion lines, she told me she had never had a patient with MG, and as soon as she got home she was planning on getting information about the disease.

I told her that she was more than welcome to ask me anything she wanted to know.

We had both a nice and educational back and forth for a while, it felt good that she was interested enough to ask.  Awareness is an important thing for MG, few people understand what this is all about.  I thought about the hashtag #HaveYouHeardofMG that has been going around lately as we spoke amicably.

I face so many unknowns after those two bracelets are fixed on my wrist.  One with my name and information and the other orange label that warns nurses and medical personnel that I am at risk of falling.

Thoughts of how things will turn out this time around feed my fears and jitters take residence in my tummy.  Never mind if the people who love me the most in this world try to reassure me it’s going to be okay, it’s never okay.  Although, I do appreciate their love, and the strength they give me along the way.

In a world where patients are treated with dignity and respect as human beings and not numbers or otherwise maybe these fears would be less, but sadly we don’t have this type of healthcare system.  The system that prevails is one where our family can’t leave us alone for a moment under the care of nurses and medical personnel due to crippling fear that we will be neglected and put at risk.

Testament of this would be my daughter running to fetch my tray because they forget to bring it in because I’m in preventive isolation and my food tray is the last to be delivered in the hall.

So, my dear friends today is not a good day for me, however I know and believe tomorrow will be better.  If I loose the ability to believe in this I have lost one of the most important battles we deal with every day and that is never to loose hope.

See you around the corner.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Stress & MG: Life in a bubble

Dear readers, all of us now that life is stressful.  So, how can we actually live without stress.  The answer for that question is quite simple, WE CAN’T.

All of us sick or healthy deal each day with different amounts of stress.  Staying on the positive side,  I would say that stress will not affect us as much if and only if, we learn to mange it in a healthy way.

 

Living in a bubblevia morguefile

Gees, that sounds beautiful, but really some situations are darn difficult to manage nevertheless the ways and manners we cope with them.  For example, my  23 year old son tells me at two in the morning, the following,

(while I was  busy dealing with last minute decorations for  my soon to be five year old’s theme  birthday party, which was the next day. )

“Mom, since I want you to be part of the process, I have something to tell you,  I’m planning to get married like probably in August.”

“What are your thoughts?”

First, let me put the situation in perspective for you, he has one semester to go to complete his masters in psychology, they started dating last year, he can’t support himself, but his girlfriend and him want to move in together during the Summer, but her parents are very Catholic and they feel the necessity of her getting married before living together.

Well, I responded,

“I think this whole idea is a bad one”…., and I went on to tell him why I thought this idea was bad in general.  But, this post isn’t about my son’s lousy choices, it’s about how my and your quality of life is disrupted by stress.

Whoever thinks we can go on with our lives and not  deal with stress is out of his or her mind.  How in the world can situations like these or any you guys might be going through not be stressful?

We are going to be stressed for Pete’s sake, if not we would be living in a bubble.  Remember that John Travolta movie, “Boy in a Bubble”?   My dear friends it’s nearly impossible for us to live this way.

On the other hand, stress is one a key element in our setbacks and flares.  Nobody right in this moment have any doubt, that I’m dealing with a major flare in my condition.  While I sit in my desk writing , I’m waiting for my neuro’s call because all my symptoms are up and front.  The night of his announcement, I needed to go on Atrovent due to severe coughing that came while I was sleeping, my legs are weak, and my voice is no where to be found.

The big question lurking in my mind is, how can I deal with this shitty situation without getting sick?

Getting some counseling,

Talking to someone,  or

Letting it go.

Honestly I don’t know.

But hey, nobody said life was easy and we know this better that any healthy person. There will be moments in my life  filled with grief, anxiety and so much more, nevertheless even if I’m tired most of the time, I need to pull through because I’m  a strong person and I don’t want to live in a bubble and I know neither do you.

Thanks for joining me on my path to wellness, talk to you soon.

MG & Sex: Security or Mystery

Dear readers, having a chronic illness doesn’t mean we can’t spice up our relationships with some mystery now and then.

Security or surprise

Even though my husband offers me on a regular basis love, compassion, and most of all security, sometimes I like to run away from that same security.

I’m an incurable romantic spirit.

I absolutely love to read romance novels and one of the things the male protagonist always has is the  “mystery” factor.  I’m not gonna get a thrill if my  protagonist is reading the newspaper in the kitchen counter.

The thing is, sometimes I ask myself  “Am I entitled to have that mystery in my life even if I have MG?”.

Well, I’ve come to terms over the years with this interrogative and have  come to the conclusion that not only me, but all of us deserve to have everything that a relationship has to offer.

On my own, it’s hard to come up with great ideas so I often get inspired by this amazing relation therapist Esther Perel, who by the way is a Ted Speaker and after  reading and listening to her I come up with an idea or two.

Now here comes the best part, as a person who has MG I have to be extra creative.  Now this can go in two different directions. One, we come up with new ideas or the other way around,we come up with no ideas.

You see my dear friends, it’s not bad at all to want more than we have sometimes.

Sex for MG patients, is a bit like every other thing in our lives.  We have to wait sometimes till the good days come around. That can add to the surprise factor, because in the moment you least expect it, Wham, you get to have one of those days.

If I’m having an extra extra good day, we go out for a dinner date, if not we stay at home cuddling and just talking about things only related to US. We leave everybody and everything out of the equation even if its just for a little bit.

When I want to wear a nice piece of lingerie or something nice for a dinner date online shopping works fine for me.  My secret for perfect fitting is that I shop at the same stores I used to go to and I try to buy the same lines of clothing or lingerie so I know how the sizes run.

Believe me, it’s all worthwhile the effort when my husband gives me the “delightfully surprised look” and words fail to express how great I feel about that.

So you see, my dear friends we all need security, but we also can’t leave out some element of surprise.  Each one of us gets to chose what that element will be. Don’t miss out on anything just because we live with a chronic illness.

Please, don’t forget to find meaning and purpose in each day, and to reach out to others creating bonds of sister and brotherhoods.

See you on my path to wellness.

 

MG & Fitness 101: Spring Cleaning

Dear readers, fitness means different things to different people.

When I talk about fitness in my life, what I think about is being able to do things without to much effort.  Fitness for MG patients should be tailored to our circumstances and not what others think fitness should be.

To prove the point, open your tumbler account if you have one and type “fitness” into the search slot.  You’re going to get a big bunch of tumbler users that promote “what they think is healthy” (no gluten, GMO’s, etc. etc.) with a whole bunch of beautiful bodies doing these incredible workouts.

We don’t have to take all this information face value, we can make up our own routines.

Answering a comment in Facebook after writing about the weight issues I and probably many of you deal with every day, I replied to someone that, “I had just finished putting away my groceries in the pantry and it felt like a workout.” Which kind of made me rethink all the fitness issue.

For me just being able to manage the regular stuff people do each day is enough for a fitness routine.

When I began my blog, I researched different types of yoga’s and all that,  and pretty much had my heart set on trying them, but a voice in my head asked  me, “Are you nuts lady?”

So basically my yoga is still in its research phase and I’ve moved on to greener pastures.  I’ve chosen to concentrate on staying as active as possible just doing the regular stuff I do each day.

_MG_9284 (1)

Today I felt like a triathlon athlete just trying to finish deep cleaning my living room for Spring.  Even though we don’t have winter on this beautiful island in the Caribbean, I like to deep  clean at the beginning of each year.

It may sound silly to some of you, but each time I’m able to clean my house it’s like a new beginning.   It’s putting old stuff into perspective, it makes me feel plain happy.

Probably I’m just a weirdo for thinking that cleaning is more or less the same thing as cleansing your spirit, but hey it works for me. You never know it may work for some of you as well.

All of you know that we are not the most fast, or strong people on the face of this Earth, but we can work out just by doing this or that.  Many of my friends and family members take so much for granted. They are able to do anything they want where, when and how they want.  Our Myasthenia has taken that away from us.

Which makes me glad today I had the opportunity to do something by and for myself. I love to think of these moments and cherish them for when I can’t even shower by myself. Those memories help me cope with my “not so good” days.

So my dear MG pals, tomorrow I’m going to tackle our family room if I’m having a good day.

Please, don’t forget to find meaning and purpose in each day, and to reach out to others creating bonds of sister and brotherhoods.

See you on my path to wellness.

 

 

 

 

 

 

MG & Parenting: Exhausting

Dear readers, those of you who are moms, dads, grandparents,  grandparents who are raising your children’s children, stepdads or stepmoms know that parenting is a rewarding, yet a difficult task.

If you ask me to close my eyes and think about a word that best describes being a mommy, I’ll easily answer it with “exhausting”.

I’ve seen both sides of the coin.

I became a first time Mami when I was 23 years old, and by  27 my family of five was complete. Even if I felt overwhelmed sometimes while  juggling a full time job, three small children, and a house I felt overall happy.    I was a healthy and fit young woman, so I tackled parenting like a train at full throttle.

Now on the other side, when Ian came into my life I was 45 and five years into the management of my Myasthenia.

1934072_10153834080592720_7642533087672593613_n
Ian and me this last Christmas getting ready for Santa’s visit.

I worried a lot during those first months.

When he was about two months old I would cradle him in his great- grandfather’s rocker and talk to him about so many things.  I would day dream about his future and just tell him all the things that would happen along the way.  Looking back, I should have talked to him about  how he would learn to cope each time I had to stay in the hospital and he couldn’t go with me.

Probably nothing would have prepared us for these moments.  Moments each parent who has a chronic illness is troubled to face, specially when your child cries in distress not understanding why he or she has to stay and you need to go.

Collecting sad moments along the way.

The saddest moment in my heart  was when after a hospital stay  he sat down on the kitchen floor and looked for his book, “Are you my mother” by Dr. Seuss and made up his own story about how his mom got lost and how he found her after she’d been in the hospital.

At his very young age he was trying to cope with the fact that I was gone for more than a week.

He’ll turn five this next month and I can say honestly that it doesn’t get better.   Friends and family all agree that I need to talk to him about what’s going to happen over the next few days when I need to go to the hospital,  but it doesn’t help at all.

This last December he was crying his heart out while we were trying to facetime, even while I tried to assure him that it was going to be okay trying not to fall apart in tears as well. 

While writing this post, my daughter sent me this great article, “49 Phrases to Calm an Anxious Child” written by Renee Jain featured in Psych Central.

Even though my beloved Ian has gone through things that only children with ill parents have to endure, he’s doing fine in so many other things.   But, that’s another story to tell. A good title would be, “MG & Elementary School: A Survival Guide”.

Plus, children have an amazing endurance for so many things.

I try to stay hopeful that things will move on for the better and that he can become a stronger person because of my illness. My best shot on that is trying to raise him with lots and lots of love and most of all kindness of the heart.  And if I’ve succeeded or not is somethings only time will tell my dear friends.

Please, 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 journey to wellness of my body and soul healing so many things along the way.