Following The Rules

Through out my life in some occasions I haven't followed the rules.  Obviously everybody knows what happens when you don't follow the rules.  CONSEQUENCES!  Nevertheless, you don't care enough or you don't think it over to be able to stop yourself.

Where is this leading us to?

Lately I've not followed the rules of people who are labeled with a chronic illness.  You know the ones that tell you what and how to live your life.  Or the one that tells you to always take you meds, because if not something WILL happen.  It's hard having to take medications every six hours to be able to live a quasi normal life.

Normal would be just living like almost everyone that do whatever they need to do and that's it.  Not having to hear don't overdo it, be careful, don't do this or you can't do that.  When you turn forty and all of a sudden you lose the liberty of being you, it's not easy.  I've struggled with Myasthenia Gravis for the past seven years and it's felt like a lifetime.  The hardest blow of them all was when my neurologist told me that I needed to begin considering Social Security Disability Benefits.  I gave up one of the things I love the most, teaching.

via morgueFile

Well you want to know what I did?   I stopped taking my meds.  I began slowly just taking them three times a day, than twice a day, than once a day, and finally I would take them every other day.  I was feeling so great, that it seemed I no longer had Myasthenia.  I was in remission (or that's what I wanted to believe)!  At the beginning everything seemed fine, so YEAH I am in remission.  I began to make plans to go back to school to finish my masters, and then maybe if I was lucky could go a little further to getting my Ph. D in Literature.  Than I would go back to work, all of a sudden in my mind (at least) I was back in school.  Until three days ago, I began feeling (the familiar) strange.

My swallowing began getting worse, and I felt my chest was about to burst.  I knew to well what would be next, the hateful debilitating of my arms and legs.  It would be a matter of days before my symptoms would exacerbate. So, today I called my neurologist because I was in a pretty bad shape.  Making it short, I'm on my meds AGAIN, and to make things a little worse (CONSEQUENCES) I'm back at adrenocortical steroids.  Which make me gain weight and have a handful of consequences.

Tomorrow I have to get on a no salt and low-calorie diet to be able to stay in shape while the storm passes and I can get rid of the steroids once again.  Ahead of me are a couple of super difficult days, but what can I say?  These are the things that happen when we are stubborn enough not to follow the rules and try to believe in fairy tales.

Teachers of Tango

Corcovada, Anasco, PR

No matter what my or your circumstances are when the day unravels, nighttime is sure to come around!

If God forbid we haven't finished what we set our minds on doing during a specific time frame we dread the moment when we welcome the night.  Nevertheless, the day will come to an end and that's when this fantastic dance takes place.  Day and night meet at dawn mingling with each other, dancing a tango, embracing and separating, hugging and distancing themselves until they part and meet once more at sunrise.  Where once again they engage in this marvelous ritual.


Rejoice and learn from nature.  Once in a while it feels great just to be alive!

"Siempre llueve sobre lo mojado"

Sometimes my husband likes to say,  “siempre llueve sobre lo mojado.”  Which literally means it always rains over what is  already wet.  This is a way of saying that whatever is bad per se is always bound to turn worse.

When whatever is bad turns to awful, it's more than sure it will get on your nerves like it does on mine!

via morgueFile

We’ve lived through a couple of rain storms and have survived, but sometimes like my husband says you kind of get tired of always running into more trouble.  

One of the storms I just mentioned occurred shortly after coming back from New York (a couple of weeks after moving back into our home) the measles came to give us a visit.  My daughter was in Kinder and my two boys, who were than preschoolers, were at home with me. 

One day she came home from school with a single dot on her forehead, my mom assured me that she thought that Stephy had measles.  You know I had to rely on her expertise because I really didn’t know much about measles (until that moment, I would become an expert fairly soon).

To move fast forward quickly, all my three children got the measles.  One just a couple around their little bodies and others all over the place (Caladryl became a household name in my home!). Nevertheless, it really didn’t worry me because all of us get measles during our childhoods and it was a milestone my own children had to go through.  To my surprise, my mother in law commented "lightly" that my husband had never had measles.   Yikes!  This is when it began raining over the already wet ground.

I wasn't surprised at all when my husband got the measles as well. 

Here we had to deal with a completely different situation. I phoned his doctor right away and he briefed me on the things I needed to be aware of (which I barely remember), and what to do if they happened.  The worst cases scenario was that we would need to request some special medication from The Red Cross (which I’m not sure if it was a medication or some plasma).  Blame my long-term memory loss to menopause!  Don't ask me for details because I'm afraid I can’t give them to you. The thing is that we were in a bad situation that was heading to get much worse in a couple of days. 

So, what did happen after all? 

Well, to our surprise (since all of you know our great record on scoring bad things) nothing happened.  Measles came and went and he survived them.  Our dear Lord decided to stop the rain and sent us instead a beautiful rainbow.  

via morgueFile

I opened my front door, waved the measles goodbye and told them to take the rain with them, and welcomed in a nice bright rainbow and pretty much enjoyed the break life gave us even if was only for a brief moment. 

Lo que sera, sera (What Will Be, Will Be)

My first visit to this tropical island  in the Caribbean Sea was around 1975.  I always remember the drive from the San Juan airport because of the distance we covered.   It took him about four hours to get us to where he lived.  It seemed we were never going to get to my grandfather's house, we could have been asking over and over, "Are we there yet?", but we didn't because that would have been seen as disrespectful. I've always thought that the moment I set eyes on these amazing mountains I fell spell bound in love for the rest of my life. I knew I would never leave if it would have been up to me.  The narrow and steep roads it took to get here were more than worth it! 

my mountain

Sometimes life becomes a little like this.  The road gets rough, but when you finally arrive where you want to be it's worthwhile.   The challenge of dealing with the  pot holes, narrow and steep roads you've  endured become milestones in your journey fulfilling your purpose in life.

It's very easy to stop and make a u-turn and simply give up!  No matter what you want, this premise will remain the same along the way.  You will endure less pain, but also less satisfaction if you stop trying.  It can be that you need to get a medical treatment  or any other thing, that seem will never happen, so instead of pushing harder you simply say, -"Okay, this is it, or as we like to say "lo que sera, sera.",.   Which means,  what will be, will be.  I am a strong believer that accepting fate is being a coward! I know from experience that life can and always will be able to overwhelm you,  and some days we are going to get up in the morning only to be punched in the face (from debt collectors to just bad news), but that doesn't mean we can give up.  We just need to push forward harder, and if we can't do it on our own, than we need to get help. There's nothing much more to it.

a view from my backyard...

 
 How many times in life do we confront situations like this!

Taking the rough road has its price because everything in life comes with one, but I've always thought that sometimes you just need to risk it.  Stay strong while the going gets tough!  It's not going to be easy, and that's when you need friends, family, and anybody who can contribute with a positive thought or a good wish.

These people will become your collaborators, they will fuel up your motor, and pave your road making the ride much smoother.  These are the people who will hold you while the winds are blowing hard and strong.  They will lift your shoulders and push you forward, so when you finally get there (where ever it may be) you can raise your arm and touch the sky and feel that you've arrived to your destination (like I did)!  What about you, where's your destination? 



  

Overcoming Our Point Zero

This post is dedicated to my husband's donor, 

who gave him the best gift ever

the gift of a new beginning. 

The day we are born is our starting point in life, it's our point zero.  Maybe that's why people usually make such a fuss over their birthdays.  They plan and plan just to decide the best way to celebrate another year of life.  Some of us are such huge fans of our birthdays that we go to extreme measures of extravagance to please ourselves in each and every possible way.  Please, emphasize on the word, ourselves.  But,  do we really think about our lives and what we've made out of them?  I would really like to think that birthdays are more about reflecting on who we are, who we've become, and who we want to be, and less about shopping  for the perfect gift. It's the one day of the year that we need to get over ourselves and take a hard look at our lives. Easier said than done, but in the long run, any effort towards self-improvement is beneficial not only for ourselves, but also for those who surround us.

free clip art: http://amorelegnami.it/images/photos/index.php?p=16

After talking about the general concept of birthdays and all the nonsense that usually accompanies it, what I really wanted to share tonight in my blog, was the fact that my husband not only has one birthday, but two.

He doesn't really fuss about one of them, but makes a great deal about the other.   He was born on a February 28th, (the whole purpose of this one is just seeing plus one on his number line), but reborn again on a June 5th, 1995 when he had the blessing of receiving a new liver.

Every year when this day comes around, he celebrates his second new beginning, or better said,  his second point zero!  Not many people have the opportunity of a second chance not in, but at  life itself.  All the rest of us have just one shot at it.  We are born, live the best we can and one day pass away.  Some don't even make it through childhood, others make it up to a late onset in life, how short or long a life you get to live is and always will be a mystery.  Coming back to Carlos after being diagnosed with end stage liver disease apparently his number line would only reach 27, but miracles do happen and after a few bumps in the road, he was ready to receive his second chance that special day. This year, he reached number 47 on the number line we call life. 

With every sunrise we experience a new beginning.

He doesn't relinquish too much on himself, but in what he is and has been to others.  We have no words or actions to show how grateful we are to his donor's family for giving him the best present ever, his new life.  Not only does he celebrate his own, but also rejoices in the fact that his donor gave him the best present ever, the gift of life.  As I waited that night, I had the opportunity to talk to the husband of the woman who received his pancreas and kidneys and they sure were grateful as well.  Not to mention that I saw his heart and lungs ushered quickly to a waiting helicopter that would take them to Georgia, and last but not least his precious liver that was generously given to my beloved husband.  

When you face this kind of experience you really have no other option that to set  high standards for yourself. That can become a hard pill to swallow, yet he embraced it with fierceness.  Only striving to want to know that he has made a difference for others through his passage in life, that with each sunrise he continues to be worthy, and that when his parting day finally arrives,  he can gaze into the eyes of his children and be able to see that he HAS BEEN WORTHY.


Eighteen years have passed in a wink of an eye, and it seems like yesterday that I waited for precisely around eighteen hours to receive the great news that he had made it through surgery and was recovering in the ICU of Jackson Memorial Hospital in Florida.  Yet, I can say that I have had the blessing of witnessing how a young man became an outstanding human being who at least in my eyes has become worthy of the incredibly valuable gift  that a complete stranger bestowed on him so many years ago.     

 

The Locked Door

"Tomorrow is a mystery!"  Oh Noooooooooo, here comes this wacky lady with another one of those worn out cliches.  Hold it,  don't kick, sorry I meant click yourself out of my blog. Just stop to think about it, this is not a cliche.  It should become a universal truth to guide us through the choices we make in our lives.

Usually we like open doors, we see what's beyond them and we have no troubles passing through.  On the other hand,  when we have to deal with  a locked door we  become aggravated if we don't have a key. That's how our future is, it's locked and the worse part is that you don't have the key to unlock it until it becomes your present.

Even if tomorrow is our worse mystery, we're always making plans to do this or do that, never stopping to consider that we may not even see that day come by.  You know,  I learned this lesson the hard way.  I thought, well my life is planned (my husband and me thought that just by saying it out loud are plans were going to fall through)   and all of a sudden when my door was unlocked - - -BAM-  - - it didn't turn out as I planned. I would have liked to scream out of frustration, but I did what I always do, move on.

Now this can be a tiny bit hard to deal with.  Some of us say, "You need to plan your future now, the time is right.", others may say "You never know what can happen tomorrow." meaning don't do anything about IT.  But, where can we find the perfect balance?

I have come to learn that we can find the perfect balance today, but don't forget to bring your yesterday into the picture.  All of our experiences form us, and make us what we are.  So, YES yesterday is important, but today is the time to make a difference in your tomorrow.  Live your today wisely,  responsibly,  go a little bit crazy once in a while, because if you don't you're just a living corpse, and most of all treasure all that is important to your heart (this means take care of your spirituality).

Don't take me wrong, material things are also important.  Who ever said that material things weren't is lying and probably just wants to rip you off.  We need things to be able to survive and give us comfort as well, just don't get to greedy and keep close to your heart those who don't have as much as we do.

Last, but not least I want to mention a  blog written by Feminista Jones, I recently read, where she talks about the insights her mom gave her on life and relationships.  One of the most interesting parts were these words,  "Don't look into the future because it's already written...we just have to play it out as it comes."   A very wise lady if you ask me, let's take her little piece of advice and our locked door isn't going to aggravate us as much anymore.  Life is what it is, you just have to figure out how you play along with it.