Birds Just Don’t Fly

Dear readers, I began this blog about a year ago after a fellow blogger Cathy Chester, who is a ferocious advocate for MS, suggested it during a twitter conversation.

Creating awareness should be our number one priority and  also creating spaces where we can share what it is to live with MG with others who go through the same things on a daily basis.

Myasthenia isn’t called the snowflake  disease for nothing, we all are different, but at the same time  share common denominators. As so many other immune diseases.

We all aspire feeling well enough to complete tasks as simple as showering, walking, or eating. These simple day to day tasks are colossal for us sometimes and not only take away from our quality of life, but also from our very core.

We struggle each day with our feelings and emotions trying to find sense in our lives and figuring out how not to just give up.

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It took me some time, but I think that finally I’ve found a glimpse on  my way in this tumultuous road of wellness.  Some of us tend to think that wellness is the same thing as health, and it’s not.

I ask myself, how can a person who is not healthy achieve a state of wellness that can overcome anything she or he has to endure?

To be honest, I don’t know.  I’m trying to discover the answer to this question through my journal,  jotting down how I feel along my journeys.

Each afternoon a flock of white birds fly above my yard and they are perfectly synchronized nevertheless, their perfection wasn’t achieved without at least falling down a couple of times and finding their exact place in the flock.

So my friends, I’m not going to find my purpose or be well without a bit of pain each time I fall.  However, what brings me hope is believing that I will be able to fly at some point and find a perfect place for myself in this thing called life.

Thanks for stopping by and reading my blog and making me company in my journey through life.

See you around.

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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.

 

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.

MG & Parenting: Exhausting

Dear readers, those of you who are moms, dads, grandparents,  grandparents who are raising your children’s children, stepdads or stepmoms know that parenting is a rewarding, yet a difficult task.

If you ask me to close my eyes and think about a word that best describes being a mommy, I’ll easily answer it with “exhausting”.

I’ve seen both sides of the coin.

I became a first time Mami when I was 23 years old, and by  27 my family of five was complete. Even if I felt overwhelmed sometimes while  juggling a full time job, three small children, and a house I felt overall happy.    I was a healthy and fit young woman, so I tackled parenting like a train at full throttle.

Now on the other side, when Ian came into my life I was 45 and five years into the management of my Myasthenia.

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Ian and me this last Christmas getting ready for Santa’s visit.

I worried a lot during those first months.

When he was about two months old I would cradle him in his great- grandfather’s rocker and talk to him about so many things.  I would day dream about his future and just tell him all the things that would happen along the way.  Looking back, I should have talked to him about  how he would learn to cope each time I had to stay in the hospital and he couldn’t go with me.

Probably nothing would have prepared us for these moments.  Moments each parent who has a chronic illness is troubled to face, specially when your child cries in distress not understanding why he or she has to stay and you need to go.

Collecting sad moments along the way.

The saddest moment in my heart  was when after a hospital stay  he sat down on the kitchen floor and looked for his book, “Are you my mother” by Dr. Seuss and made up his own story about how his mom got lost and how he found her after she’d been in the hospital.

At his very young age he was trying to cope with the fact that I was gone for more than a week.

He’ll turn five this next month and I can say honestly that it doesn’t get better.   Friends and family all agree that I need to talk to him about what’s going to happen over the next few days when I need to go to the hospital,  but it doesn’t help at all.

This last December he was crying his heart out while we were trying to facetime, even while I tried to assure him that it was going to be okay trying not to fall apart in tears as well. 

While writing this post, my daughter sent me this great article, “49 Phrases to Calm an Anxious Child” written by Renee Jain featured in Psych Central.

Even though my beloved Ian has gone through things that only children with ill parents have to endure, he’s doing fine in so many other things.   But, that’s another story to tell. A good title would be, “MG & Elementary School: A Survival Guide”.

Plus, children have an amazing endurance for so many things.

I try to stay hopeful that things will move on for the better and that he can become a stronger person because of my illness. My best shot on that is trying to raise him with lots and lots of love and most of all kindness of the heart.  And if I’ve succeeded or not is somethings only time will tell my dear friends.

Please, don’t  forget to find meaning and purpose in each day, and to reach out to others. When we give it a try, it’s pretty amazing.

I invite you to come along on my journey to wellness of my body and soul healing so many things along the way.

 

 

 

MG & Disability: A road of potholes

Dear readers, in 2008 I filed for social security disability benefits.

In Puerto Rico SSI isn’t available, so you can only apply for SSDB.

A year after my diagnosis I was trying to do my best to continue my career as a Third grade teacher,  attaining  quality of life was difficult because handling three groups of 24 children was energy consuming and took a lot of effort.

I was afraid that in one of my  appointments to the neurologist, he was going to bring up the point that I needed to look into applying for disability benefits, and I was even more scared of losing my livelihood of many years.

 

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After talking to my family about it, we all agreed that even though sacrifices would have to be made and our family budget would be tailored down, if my life was going to improve everyone was on board.

I never imagined that the road I would travel was going to be bumpy and filled with a zillion potholes.

The economic hardship that would follow was beyond my dreams, but I’m sure this is nothing new to anyone reading this.

When money gets tight even the simplest things are hard to get by.

I began reading all the information that was on their web site and I found that MG was listed as an impairment.  So, in my naivety, I thought it shouldn’t be that hard.

Which took me to the following step, begin the process to apply for disability,  After the school year ended, I didn’t go back to work in August so I could begin the process in January, since there was a six month waiver or something like that.

I’m sure that whoever reads this post, will know that it isn’t  that easy.  It’s not staying put for six months with no income, it’s gonna take a bit more, if not waaaaay more.

I remember one particular moment where the attorney told me that he wanted to try to have the SSD judge to approve my case using my file as reference because if she or he saw me they would think I was “fine” based on the way I looked.

Frankly, I was speechless.

I thought of all the process as unfair.   I sure felt sick, the deal with MG is that sometimes it doesn’t reflect on the outside.

The thing is that it got worse, because when the neurologist who the  SSD hired for my evaluations said my impairments were not enough, it was confusing and painful.

At some point, I gave up and just waited for the process to finish.

To  my surprise, I got approved after a two year wait with a fully favorable hearing judgment. For most of the time, I thought that  I wasn’t going to get anywhere close to getting approved for a coverage I had already paid for while working.

I was disappointed and angry at the system.

Social Security Disability Benefits are not free monies, it’s an insurance we pay for while we are part of the working force of this county.  So, it should work  for us not against us.

So, my dear friends reaching to  the point where everything works for us is  a road full of bumps and potholes, but we’ll get there.  And that hope that everything will be okay is what makes us move 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