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.

 

 

 

 

 

 

 

Maleta and Go

Dear readers, thanks for stopping by and reading my blog.

I was thinking about something to share with you and I came up with my recent appointment with my neuro.   Navigating through the rapids of our neuro’s isn’t easy.  Just a couple of days ago I visited my doctor ‘s office for a check up, and since I’m not doing well I figured,  hmmm “He’s sending me to the hospital to get some Gamma and get me back on track.”, like usual.

Well, it didn’t happen.

I had all my stuff packed and ready for my seven day stay at the “Resort and Spa” a/k/a Bellavista Hospital , as we Puerto Ricans say I was all set for “Maleta and go”, which means I was up and ready to face whatever it is I needed to do.

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Nevertheless, he wasn’t going down that path, not at least  this time around.

He decided to  travel towards the Mestinon Extended Lane,  leaving my Prednisone dose a bit towards the high end.  Oh, and let me not forget that we talked about getting my thymus tissue removed.

The point I’m trying to make (and probably one you’ll share with me) is that getting on and off this roller coaster called Myasthenia is a hell of a thing.  There are so many twists and turns that it’s almost impossible  to land in one piece without experiencing the scare of your life.

I don’t know how long I can stay away from my next Gamma, but as of right now I’m grateful I’m home and not admitted in isolation in a nearby clinic.

The dice are rolled each time we come across a crisis and there is not much we can do about it.  However, the important thing for me is being able to calmly (I usually do the opposite) explore all my choices because at the end of the day  those are the choices that count.

Ultimately,  we are the ones who decide if we are “maleta and go” ready or if we need a bit more time to adjust and move forward with whatever it is we need to do. Nobody can take that away from us.

And remember to always be kind to yourself and move forward even if we can only take baby steps and I’m not talking in figurative language.

Take care.

 

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.