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.

 

Back to Day One

Dear readers, trapped in the nuisance of dieting I’ve lost track of the days.

For starters, my husband got on the dieting train and he’s done much better than me.

I’ve mostly been haunted by PMS.  I’m still wondering why in the heck am I still getting periods at my age.  I will be more than happy when my period goes away forever.

Now getting back on track is going to take some willpower.

cheese

via morguefile

For me it’s all about the cheese.  I love to eat cheese!

As I write  this post some cheese and crackers are laughing at me.  Teasing me, luring me into just taking a bite.  They  know I’m not suppose to snack on them.  However, my grandma would always say, “El que rie ultimo, rie mejor” which means thee who laughs at the end, laughs with more joy.

So, if I were the cheese that’s in the refrigerator and the crackers in the pantry, I would be extremely quiet because I could use some carbohydrates right now.

Which leads us to the most important part of this all.

Tomorrow I’m at Day 1 all over again.

And this time I intend to go straight to Day 10 without hesitation. Why Day 10?  Well, because those first ten days are crucial to staying on track.  My husband already is feeling the benefits of dieting, his size 36 pants need a tighter belt for fitting.

Finally I just need to add one word to this, FOCUS.

It has to become my mantra for pulling this off.  Each time temptation comes around the corner, I need to repeat FOCUS.

FOCUS on feeling better,

FOCUS on walking better,

FOCUS on living better, and so much more.

And don’t forget to do something that makes someone’s day better;  make me company on my way to wellness; and, repeat my mantra FOCUS.

 

 

 

Day 4: The Pasta Daze

Dear readers, these past few days have been challenging.

I’ve felt like a character of Poe’s  story “The Tell Tale Heart”, but instead of a heartbeat it’s more like a screaming cinnamon bagel that’s calling me.

I’m holding my own (if you don’t count my midnight bagel crime) or my cravings for some Pizza Hut pasta. Yogurts and salads will have to do.

  • Two things are keeping me motivated: one, my husband who is dieting with me, and; two, I don’t want mobility issues this coming Christmas.

So, I should place next to the pasta a picture of my walking cane, as a reminder to which way I want to go.

Remember, be kind to yourself and make me some company on my road to wellness.

Day 2: Dealing with an upset tummy 

Dear readers, all of us know how prednison can spike our craves to eat “anything” that has SUGAR. And not happy about that I have the situation that I developed Diabetes because of IT.

So, yesterday I felt the urge to dip in to some cake frusting in the fridge. Super bad idea!

Which lead me to one of the worst tummy aches I’ve ever had. 

But, I’m still hanging in there. 

Day 3 is all about getting some pampering. 

Hoping everyone is feeling good.

And, don’t forget to make me company on my trip to wellness.

MG Diet: Getting Back To Where I Was

Dear readers, it’s not about looking young (good luck with that), it’s about being able to walk. So, today is a great day to begin getting there. 

Day 1: so far, so good.

Not bad at all, Rosemary & Olive Oil Flatbread, veggies and some cilantro with a tiny stick of Sargento cheese.

Now desert as an issue if you live with a 5- year old. 

Let’s walk our way to wellness together. 

A Prayer For You

Dear readers,  I take my life one day at a time and I’m sure that all of you do the same thing.

Our routines and so much more have a direct impact on those who surround and love us deeply. They live through our ups and downs, sometimes voicing their feelings and other times just remaining silent.  It’s hard on us and at the same time for them as well.

Sometimes I forget that and today as I went through my daughter’s things because she  recently left to begin her new school year in New York I was remembered of that as I read   a prayer she wrote during the Summer.  One that I share with all of you today with much love.

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“I heard once that prayer is about redefining our desires.  It is about being open to ask for guidance and even though we do not control our journey that does not mean we are astray.

Today I pray open to hear, even when that fills me with fear.  

Dear Gracious God, I am not praying to give excuses or explain my silence.  Whom I am trying to fool? My silence is yet nothing more than silent panic. 

You know that.

I pray for longer walks, for less tiredness. 

I pray for more smiles and restfulness of spirit.

I pray that the spirit might comfort the body.

I pray for shorter naps and more energy.

I pray for coffee @3 pm between shared stories. 

I pray for our usual complicity to remain intact in times of sickness. 

I pray for our unspoken bond to grow stronger in the face of weakness.

I pray that we can share prayers.

I pray that her body can gain strength while her spirit stands strong. 

For now, I pray that she can rest knowing that we will do our best holding her so she does not fall.

Amen”

May the words of this prayer belong to all of us today.

 

 

 

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,

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“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.

The Patient of 152B

Dear readers, it’s been a while since I’ve shared anything with you.

Sorry for that but, I’ve been feeling weak for some time and all of us know that when we’re weak, we’re weak.  Everything in our lives becomes a colossal task.NYUWork-009

via morguefile

Which by the way got me admitted on Monday for an IVGG treatment.

When I’m in the hospital I feel vulnerable, and a bit lost to tell you the truth.  It’s nice when I hear a resident call me by my name, instead of the patient in 152B.

Most of the nurses who work here don’t really know much of Myasthenia, never mind pronounce it.  Yesterday I had the opportunity of having a young nurse who actually came around and talked to me about MG.

As she was giving me meds and changing my infusion lines, she told me she had never had a patient with MG, and as soon as she got home she was planning on getting information about the disease.

I told her that she was more than welcome to ask me anything she wanted to know.

We had both a nice and educational back and forth for a while, it felt good that she was interested enough to ask.  Awareness is an important thing for MG, few people understand what this is all about.  I thought about the hashtag #HaveYouHeardofMG that has been going around lately as we spoke amicably.

I face so many unknowns after those two bracelets are fixed on my wrist.  One with my name and information and the other orange label that warns nurses and medical personnel that I am at risk of falling.

Thoughts of how things will turn out this time around feed my fears and jitters take residence in my tummy.  Never mind if the people who love me the most in this world try to reassure me it’s going to be okay, it’s never okay.  Although, I do appreciate their love, and the strength they give me along the way.

In a world where patients are treated with dignity and respect as human beings and not numbers or otherwise maybe these fears would be less, but sadly we don’t have this type of healthcare system.  The system that prevails is one where our family can’t leave us alone for a moment under the care of nurses and medical personnel due to crippling fear that we will be neglected and put at risk.

Testament of this would be my daughter running to fetch my tray because they forget to bring it in because I’m in preventive isolation and my food tray is the last to be delivered in the hall.

So, my dear friends today is not a good day for me, however I know and believe tomorrow will be better.  If I loose the ability to believe in this I have lost one of the most important battles we deal with every day and that is never to loose hope.

See you around the corner.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Stress & MG: Life in a bubble

Dear readers, all of us now that life is stressful.  So, how can we actually live without stress.  The answer for that question is quite simple, WE CAN’T.

All of us sick or healthy deal each day with different amounts of stress.  Staying on the positive side,  I would say that stress will not affect us as much if and only if, we learn to mange it in a healthy way.

 

Living in a bubblevia morguefile

Gees, that sounds beautiful, but really some situations are darn difficult to manage nevertheless the ways and manners we cope with them.  For example, my  23 year old son tells me at two in the morning, the following,

(while I was  busy dealing with last minute decorations for  my soon to be five year old’s theme  birthday party, which was the next day. )

“Mom, since I want you to be part of the process, I have something to tell you,  I’m planning to get married like probably in August.”

“What are your thoughts?”

First, let me put the situation in perspective for you, he has one semester to go to complete his masters in psychology, they started dating last year, he can’t support himself, but his girlfriend and him want to move in together during the Summer, but her parents are very Catholic and they feel the necessity of her getting married before living together.

Well, I responded,

“I think this whole idea is a bad one”…., and I went on to tell him why I thought this idea was bad in general.  But, this post isn’t about my son’s lousy choices, it’s about how my and your quality of life is disrupted by stress.

Whoever thinks we can go on with our lives and not  deal with stress is out of his or her mind.  How in the world can situations like these or any you guys might be going through not be stressful?

We are going to be stressed for Pete’s sake, if not we would be living in a bubble.  Remember that John Travolta movie, “Boy in a Bubble”?   My dear friends it’s nearly impossible for us to live this way.

On the other hand, stress is one a key element in our setbacks and flares.  Nobody right in this moment have any doubt, that I’m dealing with a major flare in my condition.  While I sit in my desk writing , I’m waiting for my neuro’s call because all my symptoms are up and front.  The night of his announcement, I needed to go on Atrovent due to severe coughing that came while I was sleeping, my legs are weak, and my voice is no where to be found.

The big question lurking in my mind is, how can I deal with this shitty situation without getting sick?

Getting some counseling,

Talking to someone,  or

Letting it go.

Honestly I don’t know.

But hey, nobody said life was easy and we know this better that any healthy person. There will be moments in my life  filled with grief, anxiety and so much more, nevertheless even if I’m tired most of the time, I need to pull through because I’m  a strong person and I don’t want to live in a bubble and I know neither do you.

Thanks for joining me on my path to wellness, talk to you soon.