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”.


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!







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….


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.

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.


MG Disability.jpg


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