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.

 

 

 

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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.

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.

MG & Fitness 101: Spring Cleaning

Dear readers, fitness means different things to different people.

When I talk about fitness in my life, what I think about is being able to do things without to much effort.  Fitness for MG patients should be tailored to our circumstances and not what others think fitness should be.

To prove the point, open your tumbler account if you have one and type “fitness” into the search slot.  You’re going to get a big bunch of tumbler users that promote “what they think is healthy” (no gluten, GMO’s, etc. etc.) with a whole bunch of beautiful bodies doing these incredible workouts.

We don’t have to take all this information face value, we can make up our own routines.

Answering a comment in Facebook after writing about the weight issues I and probably many of you deal with every day, I replied to someone that, “I had just finished putting away my groceries in the pantry and it felt like a workout.” Which kind of made me rethink all the fitness issue.

For me just being able to manage the regular stuff people do each day is enough for a fitness routine.

When I began my blog, I researched different types of yoga’s and all that,  and pretty much had my heart set on trying them, but a voice in my head asked  me, “Are you nuts lady?”

So basically my yoga is still in its research phase and I’ve moved on to greener pastures.  I’ve chosen to concentrate on staying as active as possible just doing the regular stuff I do each day.

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Today I felt like a triathlon athlete just trying to finish deep cleaning my living room for Spring.  Even though we don’t have winter on this beautiful island in the Caribbean, I like to deep  clean at the beginning of each year.

It may sound silly to some of you, but each time I’m able to clean my house it’s like a new beginning.   It’s putting old stuff into perspective, it makes me feel plain happy.

Probably I’m just a weirdo for thinking that cleaning is more or less the same thing as cleansing your spirit, but hey it works for me. You never know it may work for some of you as well.

All of you know that we are not the most fast, or strong people on the face of this Earth, but we can work out just by doing this or that.  Many of my friends and family members take so much for granted. They are able to do anything they want where, when and how they want.  Our Myasthenia has taken that away from us.

Which makes me glad today I had the opportunity to do something by and for myself. I love to think of these moments and cherish them for when I can’t even shower by myself. Those memories help me cope with my “not so good” days.

So my dear MG pals, tomorrow I’m going to tackle our family room if I’m having a good day.

Please, don’t forget to find meaning and purpose in each day, and to reach out to others creating bonds of sister and brotherhoods.

See you on my path to wellness.

 

 

 

 

 

 

MG & Weight Loss: An ongoing issue

Dear readers as you know we deal with a lot of mobility issues. I’m not going to get into the reasons of why this happens because basically all of us know that when weakness strikes we need to get some rest and that can go on for days and even weeks.

Which takes us to our next point, weight gain.

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We struggle with our weight.  If we gain those extra dreaded pounds it’s going to be tough to move around and this makes us go in circles for what seems a very long time.

 

I had gotten to a decent point after May last year, and my weight was down to 148, which for me was great. Then, after my last flare and hospital stay in December it went all the way up to 175.

Gee, was I frustrated.

My family told me,

“Don’t STRESS yourself, things will work out.”

“You’ll see in no time you are going to loose that extra weight.”

I thought to myself,  “Yeap, those 28 extra pounds are going to just melt away as I do my high energy power exercises!!!!!”

If they wanted to make me feel better they did it, but the high only lasted a couple of minutes. Nobody was talking about how I was going to get there.

To make my loooooong story, very short.  I began my depending on how I wake up in the morning weight loss program.  I simply started to count my calories and since all of us know exercise is almost out of the question some days.  The days I get up feeling strong I exercise around the house doing household chores and eat very carefully.

Yesterday I weighed myself after a week, and discovered that I had only shed 2.2 pounds. I was disappointed because I thought that I had lost more.  Which lead me to a war with half of dozen cupcakes I had bought for “Ian” at the supermarket.

All of a sudden I craved sweets and totally forgot about the low-fat yogurt I was supposed to eat.

After an afternoon on an emotional merry go round ride I finally curled  up in bed and read that shedding 2.2 pounds was more than good in a week.

Which made me feel good about myself, which took me back to the cupcake I had eaten earlier.  The good news is that I had eaten only one out of six, the rest are still safe in my refrigerator.  Ian will probably have some this afternoon when he gets back from school and the rest will be given away.

My archenemy strawberry frosted vanilla cupcake had won the first battle, but I won the following when I chose not to eat the rest of them.

So, my dear friends reaching that point where wellness surrounds us is tough, but we need to remember that our bodies our weak, but our will is strong.  And that is precisely what keeps us moving forward.

Plan your life because it’s yours and only yours,  and find meaning and purpose in each day reaching out to others. When we give it a try, it’s pretty amazing.

I invite you to come along on my quest for wellness not only of my body, but most importantly of my soul