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.

 

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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.

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.

 

 

 

 

 

 

 

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.

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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.

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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.

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 & Disability: A road of potholes

Dear readers, in 2008 I filed for social security disability benefits.

In Puerto Rico SSI isn’t available, so you can only apply for SSDB.

A year after my diagnosis I was trying to do my best to continue my career as a Third grade teacher,  attaining  quality of life was difficult because handling three groups of 24 children was energy consuming and took a lot of effort.

I was afraid that in one of my  appointments to the neurologist, he was going to bring up the point that I needed to look into applying for disability benefits, and I was even more scared of losing my livelihood of many years.

 

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After talking to my family about it, we all agreed that even though sacrifices would have to be made and our family budget would be tailored down, if my life was going to improve everyone was on board.

I never imagined that the road I would travel was going to be bumpy and filled with a zillion potholes.

The economic hardship that would follow was beyond my dreams, but I’m sure this is nothing new to anyone reading this.

When money gets tight even the simplest things are hard to get by.

I began reading all the information that was on their web site and I found that MG was listed as an impairment.  So, in my naivety, I thought it shouldn’t be that hard.

Which took me to the following step, begin the process to apply for disability,  After the school year ended, I didn’t go back to work in August so I could begin the process in January, since there was a six month waiver or something like that.

I’m sure that whoever reads this post, will know that it isn’t  that easy.  It’s not staying put for six months with no income, it’s gonna take a bit more, if not waaaaay more.

I remember one particular moment where the attorney told me that he wanted to try to have the SSD judge to approve my case using my file as reference because if she or he saw me they would think I was “fine” based on the way I looked.

Frankly, I was speechless.

I thought of all the process as unfair.   I sure felt sick, the deal with MG is that sometimes it doesn’t reflect on the outside.

The thing is that it got worse, because when the neurologist who the  SSD hired for my evaluations said my impairments were not enough, it was confusing and painful.

At some point, I gave up and just waited for the process to finish.

To  my surprise, I got approved after a two year wait with a fully favorable hearing judgment. For most of the time, I thought that  I wasn’t going to get anywhere close to getting approved for a coverage I had already paid for while working.

I was disappointed and angry at the system.

Social Security Disability Benefits are not free monies, it’s an insurance we pay for while we are part of the working force of this county.  So, it should work  for us not against us.

So, my dear friends reaching to  the point where everything works for us is  a road full of bumps and potholes, but we’ll get there.  And that hope that everything will be okay is what makes us move forward.

Plan your life because it’s yours and only yours,  and find meaning and purpose in each day reaching 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

 

 

 

 

 

 

 

 

 

 

 

 

MG & Sex : The Odd Couple

Dear readers, probably you’ve figured out what I’m going to be sharing with you.

Being honest and straightforward about it,  sex is a topic hard to breach because many of us (myself included) are hesitant to open ourselves to others because it makes us vulnerable.

Sex and Myasthenia are truly the odd couple.  One is vibrant and passionate and the other struggles with weakness and everything that comes with it.

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blurred silhouette hand.

I’ve been married for thirty years to the same guy.  I married the love of my life, my friend, and my high school sweetheart, however that doesn’t mean that we don’t face the same troubles all couples face when dealing with a chronic illness.

I’m not going to talk about the whats, whens, or hows of the sex situation, but about how I feel about having sex with a chronic illness.  Specially if you’re like me who turned forty  and began  feeling sick as a dog and bingo, a neurologist told me that I had MG.  The saddest part for me was that for most of my life I had been a healthy, vibrant and strong woman, so the last ten years have been a challenge.

Coming to terms with the new me wasn’t easy.

All of a sudden, the man I had chose to spend my days and nights became instead of my friend and lover, my caregiver.  He helped me with all the basics, and keeping our love life as it used to be was out of the question.

It was time to reinvent ourselves as individuals and also as a couple.

At the early onset he would worry to a point where it wasn’t even worth the effort, because his fear of  how I was going to do the next day was terrible.  He would remorse constantly over everything and  if for some reason I would become weak, he would blame our lovemaking for it. That became our passion killer at least for some time.

Things changed after overcoming a couple of scary situations I’ve lived through , and nowadays it’s all about the moment. I cherish the days I’m strong enough and we make the best of it. He no longer worries so much and appreciates each day as a gift.

But most importantly I never gave up on that side of our relationship because he was ready to shift his role and I knew that if we went there things would never be the same.

Dealing with a chronic illness is and has always been hard on me and I didn’t want to miss on the beauty of sharing those moments with him, plus I thought it wasn’t fair for neither of us.

What worked for us was just talking and keeping our thoughts and wants in the open.  There is no other way, I feel blessed that this amazing man is part of my life and hope that you too have a special person to share a moment that makes you feel strong and alive.

So, my dear friends reaching that point where wellness surrounds us is tough, but we need to remember that our bodies our weak, but our will is strong.  And that is precisely what keeps us moving forward. Why would we miss out on anything life has to offer?

Plan your life because it’s yours and only yours,  and find meaning and purpose in each day reaching 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