The Stories that Surround Us

Have you ever wondered in awe how all our lives are intertwined as if we belonged together.

All our stories run parallel in way or the other.  Yet, we fool ourselves in thinking that we are unique, drifting alone and forgotten in this marvelous Universe.

via morgueFile

Today as we went through the pre-registration for my father in law’s next stay in the hospital to continue with his salvage regimen of chemo-therapies, towards the end of the paperwork the clerk who was helping us shared  her own story.  After hesitating she told us that her dad also is going through  Non Hodgkin’s Lymphoma.

She kindly told  us all about him, and we felt humbled and blessed to the least.  She really didn’t have to share anything in fact. She shared their pain as a family and  how hard it was not only for the patient, but also for them.

She really didn’t have to tell us anything, we were just two strangers that were doing what needed to be done.

During all this process in occasions we feel alone and heartbroken that someone we love has to go through all the pain that cancer brings with it.

Sometime before my father’s last stay in the hospital, my husband told me quietly that,

“I haven’t let myself cry over Papi.”

I really didn’t have an answer to that, but the day I left both of his parents (which I love deeply as a daughter), I allowed myself to cry over him for the first time.  I’m not fond of doing such because I believe that it’s not over until it’s over.  Then, we’ll have time to grieve and move on eventually.

I felt very lonely in my car as I poured my heart out in pure grief.

My thoughts went back in time and saw a younger version of him handing my house keys to me.  He had literally bought us our home.  He didn’t give my husband the keys, he gave them to me.

It meant a lot  to me back then and it still does.

Yet my memories didn’t stop there, they went even further in time and recalled how he gave me money to go and buy all my school supplies for my freshman year.  I bought  a bunch of notebooks, pens, pencils, erasers, files, markers and two gigantic dictionaries (No internet back then).

Then they jumped to my wedding, went back to when he had gotten out of his way trying to find the perfect crib.  I wanted it white with a bunch of requirements he was more than happy to meet.  All these random memories had no chronological order, yet shared something similar, they were all full of love.

I remained a while just pouring my heart out and then moved on.  I needed to get home and leave them behind.

Through this difficult time we have all grown one way or the other.   However, I have come to learn that we are not alone.  All of us share similar stories and when the time is right and the occasion rises we share them and connect in ways that may even seem impossible.

We stop if we are in a hurry to listen, we appreciate and are thankful for kind and compassionate words of those who have endured our same path, and most of all we are humbled with the blessings we have each day.

So, my dear friend next time  you fall into the temptation of thinking you are alone in the vast world, think again and open your mind and life to the blessings of the stories that surround us.

Cancer · Uncategorized

The Mystery of Signs

“There are signs everywhere.”

Would you chose to believe or not this premise is a personal choice.

via google images

The truth is that this short sentence is repeated during the movie “Bruce Almighty” a couple of times.  The problem was that Bruce couldn’t see the signs or didn’t want to see them.  This happens to us often.

I have always chosen to believe in signs.  Call me naïve, innocent, or just plain stupid I really don’t mind at all.

Yesterday was one of those days I stumbled upon one.

I took my in-laws to the nearby hospital where my father in law was going to be admitted for a salvage treatment of five days, and since he was thirsty, he asked me to buy him a soda, while we waited for the escort to come pick him up.

I went to a close deli, but didn’t find the brand he usually likes and asked a woman there to help me.  She was very attentive, but told me that she was sorry because none were left in the coolers.  She offered on the other hand, to get me a can that wasn’t yet in the cooler and offered some ice.  I told her that it was okay, that I would only buy the bottle of water because I was in a hurry because I needed to get back to the hospital.

Since she had been really nice, I didn’t want to rude so I answered when she asked about my patient.  You know the normal questions, what’s wrong with him???  I answered that he had cancer and just wanted to pay and get going.

But, as it goes after I said cancer, here comes the obliged question, Where?

I can’t even remember what I said, I gestured something that looked like all around and was already paying and leaving.  When she told me, you know my sister had lymphatic cancer.  She went on to tell me how bad it got for her and that she was left in the bare bone, (Gee, here it comes I thought now she’s going to tell me that she passed away.) and then she told me she’s fine now.  She got a bone marrow transplant and was able to survive cancer.

You know, when she said lymphatic cancer, she stopped me on my track.  My father in law’s cancer is lymphatic.

I wanted to keep on listening to her story, but really had to leave.

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I stopped for a moment at the door, and thought about asking for her phone number,  but, didn’t do it.

The thing is that I felt better after our short and obliged conversation.  Something about all what she told me gave me hope.  I thought just for a split second, maybe that’s the way we need to go with all this.  Maybe we’re doing something wrong, and we just need to get on track.  My father in law’s new oncologist also mentioned the possibility of a transplant when another doctor had discarded it.

Could it be possible?

When I talk about signs, I’m not really talking about something specific, but an incident, a phrase, a person, a prayer, anything that helps me understand what’s happening and that may lead me towards the right path.

Probably some of you may think that signs are in the same league as destiny and simply chose to think that me make up our own destiny and that signs can lead us towards the wrong passage.

However since life is about our own choices, I chose to believe.  Anything and everything that points toward a glimpse of hope is worth while checking and I’ve heard about nobody that hasn’t felt uplifted and simply good after hope of a better outcome begins growing back into our hearts.  Feeling defeated is the first step towards just losing the war, we may lose a few battles along the way we just can’t let our lost battles win us over.

Christopher Reeve said it, “Once you choose hope anything is possible.”

Which are your signs?

Myasthenia Gravis

The Perspective of Tremors

Have you ever felt that you are trembling, but when you look at your hands they seem steady?

via Google Images

Back in 2008 when I began my romance with a medication called Mestinon I would feel I was literally trembling, but when I looked at my hands they were steady.  My head felt as if I was visibly trembling, but when I would ask my husband he would tell me that I looked fine.


What the hell is wrong with me?

After some time I brought myself to ask my neurologist about my tremors.  I told him that I felt I was shaking from inside out, but nobody seemed to notice it except me.  I was beginning to think it was all inside my head.

Believe me when I say I had to round-up some courage.  My relationship with my neurologist was in its early stage and he really didn’t know me, so I didn’t want to sound WACKO!

His reaction was simple and straightforward.

“It’s a side effect of your meds, no need to worry about Parkinson.”

via Google Images

The best part of his answer was that he voiced my fears without making me acknowledge them.

Today almost six years from that day, we have developed a doctor-patient relationship where I no longer fear to talk about what’s happening to me and he has always kept his same simple and direct style.

Probably, today I remember that day so clearly because these damn tremors are here and sometimes they hum in my head like a million bongos.  My meds are being adjusted once more, and when that happens my bongo buddies come rolling in like rock stars on  a concert.

Recently I’ve come across an ad about the face of Lupus and how patients sometimes put off telling their physicians how they feel, and to tell you the truth that’s darn sad.  We are so many that endure chronic illnesses in America and have to face the facts of coping with things, to on top of it all have to deal with all the mess about Obama Care.

Every one has an opinion about how it will be a life saver or a go to hell kind of thing, but each and every person I”ve heard is tied in one way or the other with politics.

And when you are suffering from a chronic illness the least you want to hear about is how politicians are literally tearing their heads off trying to win a battle of power.  Forget they are going to try to become advocates of some sort for our community.

via google Images

If all of us are capable of being empathic to one another on a compassionate and human way our problems in Congress would probably be over.  Congress doesn’t really care about the faces not only of Lupus, but of a huge range of people who as me suffer from chronic illnesses.

If they would live just for one day with my tremors or yours,  banging in their heads, they would be better rounded and best suited to govern a country that has enough hardship as it is.

If not ask anyone who has tried filing for a disability claim.

All of us face different tremors, it’s just about perspective.   I can successfully point mine towards my medicines, but what about you?  What causes your tremors?

Myasthenia Gravis

Dealing with MG and extreme hot weather: NOT EASY!!!!!!

First of all I’ll like to explain what MG stands for.  It’s a short version for Myasthenia Gravis, which I like by the way more than the complete medical term.  MG is short and has a fun twist to it, it’s like having a bit of fun with the mystery of people finding out what it means.

A lot of people are familiar with MS (which stands by the way for Multiple Sclerosis). When I want to get through to people who ask me I simply say that MG is MS’s cousin.  Sorry my MS buddies (specially Cathy Chestner) for that little detour trying to explain what MG really is.

We’ve had pretty hot temperatures for the last couple of days, and for people with Myasthenia Gravis extreme hot or cold puts a lot of stress on our medical conditions.

via MOrgueFile

Today with a soaring 103 (93 and heat index going towards the 103 degrees) my muscles began to protest and scream,

What the hell is going on?????

I feel we went to the beach.. but missed on the spectacular views or sunset!!!!!

photo credit Melissa Segarra
photo credit Melissa Segarra

As the day went on I felt my fingers, arms and legs stiffen with the familiar feel of it’s a matter of time before the limping began.

I’ve been so tired that my fingers have been acting as if they had no life in them.  I’ve almost thrown every thing on the floor except the baby (thank God).  Today  I left the comfort of my home to go over to my mom’s even more hotter house so she can help me out with the baby.  NOT FUNNY!

Even now twenty some years after, I have to pass through the excruciating pain of having her tell her how I need to feed my baby boy,  Again NOT FUNNY!

The only thing that kept me going was the fact that by five I’d be home.  Gee, what a relief when my boys were on their way and I didn’t need to say any longer.

Hopefully tomorrow the day will be less hot.


The Joy of Moving On

Today as I waited for Ian to come out of Sunday School, I talked a while with an outstanding woman who became a widow nine months ago.  Precisely a day like today nine months ago her beloved husband of forty plus years passed away as he enjoyed his Sunday nap.

She told me,

-“Today is one of the those days that I feel I can hold on to my blanket forever.”  With tears in her eyes.

I hugged her without really knowing why because I wasn’t thinking about her husband’s sudden death and I know her on a very superficial level.  Maybe it was because I was the only one there and she needed to get it off her chest,  I really don’t know, but  she continued to say,

-“It’s been precisely nine months since he left.”

I hugged her even more, and replied quietly, “we need to move on you know”.  These were the best words I could find out of the blue, even though it made me feel uncomfortable.

Yet after she nodded and went inside the church, I recollected that they were true.  We do need to move on when facing harsh situations in life.

via morgueFile

She’s living through a situation that will  probably take all her  energy, making  sense and adjusting to a completely new life. She will have to go through the agonies and joys of constructing a new life for herself.    She’s not really alone when she states that she wanted to hold her blanket forever.  Some of us have had to do exactly the same thing.

Some days all of us have felt we can also cling on to our blankets for a lifetime.

It’s been a while since I’ve blogged because I haven’t been feeling myself lately.  I haven’t been well, and even if this is nothing new to me because this is part of having a chronic illness it still hurts the same.  You just have to cling on to the days where you feel you are healthy and hold your part while you’re not feeling so great.

Precisely those are the days where I want to hold on my blanket forever, waiting while the storm passes.

via morgueFile

For each one of us our storms are different.

For me maybe it’s my illness, for others it could be  financial, family or work related issues.   Nevertheless, we also need to apply the same premise, “we need to move on”.

We should learn from nature, to every stormy night a beautiful sunrise will come up no matter what.  All we need to do is uncover our heads and watch its spectacular display and apply it to our own life.

via morgueFile

My dear friend, today will be over and tomorrow will come with its amazing  beauty and you will rise and move on. Maybe with the tingle of pain, but nobody said that life was easy, right?