Three years ago today

Three years ago today !

.... what a mess ! My life changed completely...

it had slowly changed by me giving up my love, my passion, by far my greatest project “art on silk” my own “handsOnSilk”.

.....my work was not coming out good enough... Feb 2014 I left the gallery with the hope I would come back. Some therapy, some hand surgery, something would help me get back ... what a mess... !

May 6 2015..... test after test... lab after lab... Hey ! Is not on your head ! Hey... you are not putting up a show.. “you have a Motor Neuron Desease” ALS

Three years have gone by... today I feel my slow progression is building up speed and is time for me to slow down 😢

Staying Strong

I don’t blame you for my disability.....

I might get angry I just don’t want to let go of my own independence.

I used to do things easier before I just can’t do them any more.

I know exactly what to expect... although pain was not part of it... now I know it is and I’m learning as I go.

I will try, it might take me a bit longer ... but I will do it when I feel a bit stronger.

I might be weak but I will not quit !

Afraid..... I am. I see a walker and I cry inside.

I don’t want to show my weakness... but I know is time to have the walker in my life.

El Amor...se va ?

Escucho una cancion con la que no estoy de acuerdo

se me acabo el amor de tanto darlo....

no... el amor no se acaba asi,,,nada mas lindo que dar.

el amor se acaba  cuando no se cuida. Se seca, se desgasta....

Fidelidad....Faithful

NANKURUNAISA

Es una palabra del antiguo Japón que significa “Vive hoy por el bien del mañana y no te olvides de sonreír” o su versión completa que es “nunca olvides quien eres y vive por hoy y por el mañana, que jamás se te olvide sonreír y por terrible que haya sido tu día recuerda que el próximo día el sol te recibirá con una gran sonrisa, tú has lo mismo”

"Con el tiempo se arregla todo"

Do not have a nice day... Have a day that matters

Make your days count, make your days meaningful.

Do not be a hysterical follower. Do not let people poison your mind and deceive you with media propaganda to create a violent monster out of you. 

Make sure you know the truth before you adventure into damaging others by your remarks. Don't be a gossiper. Do not live on what is trending but what is important.  

Every one is entitle to their on opinion to their own believes. 

Live and let live

 Gladys

Live and let live

Mind your own business

Gladys

ALS: Fast, Slow, or ?

ALS: Fast, Slow, or ?: ALS: Fast, Slow, or ?

I followed Patty... Loved her. She was my inspiration. She passed away...  resting in peace

Try Harder... You can do it..

There is no such a thing with ALS/MND. How more useless can someone feel !

There is not getting better, there is no: " if  you try you'll be able to do it. " 

How can I make people understand ALS is a relentless condition and research is slow. 

I am eager to hug and be hugged and feel the warmth of an embrace, because one day sooner or later and I know is coming,  I wont be able to. My arms wont respond. I can't try,  who am I kidding ? Should I just call it "quits" and just wait 'till the time comes ?... I can't show myself as tough any more.... or should I ? that would be deceiving !

Let it be

I spend great part of my time brainstorming. I ask myself "How am I doing?"  What's going to happen ? How is it going to be ?   How do I hold on tight not to let go ?   How do I make it last ?  How do I stop the inevitable?  I want to use my time, I want to grasp the last drop of energy and live it to its fullest.... 

I want to stay Happy until my last breath.. I've learned there are beautiful things in life.... and I also learned...  laughter, friends...true friends  which I so long wished for and have, are priceless.

A friend told me..."sign of long life"  Please let it be...

Tire, Slow, Burden....

From Mayo to Uhealth

I had the most wonderful experience at Mayo clinic in Jacksonville. Doctors are excellent, nurses kind, service amazing not a thing to complaint. Unfortunately it's too far for the boys to drive me back and forth to appointments so, having Uhealth Miami which is only an hour away, it was unanimously decided to transfer, and so..... I did

Today I feel good ! When I was first diagnosed with MND, just like I'm sure most of those who received the news, I said in disbelief "me ? out of so many ? and Life went on... This week I transfered from Mayo clinic in Jacksonville Fl to Uhealth Miami, just because is closer for my boys to drive me there, It went good and I was confirmed again,  I''m still in a slow progression after close to 7 years from my first symptoms. I'm still independent and again I say to myself "Me"! this time feeling lucky among a few. More time to fight, more time to enjoy life, more time to appreciate the good and learn from the bad.

Slow Progression.... what does it mean ?

Nothing is more painful than fading away day by day while you watch helplessly.
And then ...... doing all I can to stay positive enjoying happiness life has gracefully put at my hands for me to reach... and reaching I am ! It also helps me stay away from the fading away day by day which only I seem to understand.....  Yet can't ask those who are not in my shoes who I understand love me dearly, to understand.  Why can't things be easier ? or is it that I just need to say:

Sad feelings strike.....

Liz a beautiful Lady

Today I feel sad..... Recently I started to follow Liz's Blog. A blog full of encouragement of helpful tools to all of us facing this relentless disease which surprises us in different forms every so often. I felt I could identified my self with Liz, full of joy, looking at life the way I see it, finding the good in everything and trying to turn around those dark resentful negative feelings, people often bring afloat. Yes, life can be good even under a storm. I felt so excited about following her writings and have some way of comparison and the though of "I'm not alone" ....  I asked her husband Alan to allow me to  be part of their group MDN Together  and luckily I joined the group only to find Liz passed away last November and her husband keeps the group alive.  It's sad to hear she's not longer with us but I'm sure she is finally resting !  But then.... Uncertainty afloats.... My favorite collection of paintings back in my days as an artist and not even close to learning  MND/ALS existed   comes to mind.