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.
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.
Dear readers, many of us become lonely clowns trying to cheer everyone up, nonetheless feeling like empty shells with a smile stamped on our faces.
It’s a hard truth to face.
Probably the hardest thing to take in is people telling you how good you look when you’re not feeling well at all.
Recently my meds were changed and my body is yelling at full throttle that something is wrong. For more than ten years I’ve taken my medicines on a military schedule and now it’s going to be released little by little throughout different dosages and hours.
Tremors, feeling nauseous, and being able to hold a meal have been a challenge to take in. But, I’m giving it my best.
Just wondering sometimes why does it have to be trying to cheer up anyone other than myself. Surviving a difficult childhood left me with many scars, maybe the one that I resent the most is that I like to please those who surround me more than I need to. Early on I learned that pleasing my parents would keep me out of trouble, so I became a fixer upper. I’m not sure that’s even a term, but wanting to fix things for others is.
I need just to take a deep breath and give myself a break. It’s fine if I’m not feeling well, and I have all the right in this Universe to say it. I just have to make myself do it.
In the meanwhile I have my blog to turn to each time I need a shout out. The best thing probably is that no one in my family takes time to read it so I can write anything I want without feeling guilty about it.
Trying to reach a point in your life where wellness is for real is hard to achieve and I’m not sure we can get there. Nonetheless, we need something to look forward to while coping with this draining disease.
So, thanks for stopping by and let us aspire to keep moving forward however hard it can become to bare. See you around.
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.
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.
Dear readers, regardless to say and I’m sure all of you know that life brings hundreds of sounds that people, animals or things make into our lives. However, I’ve lived through days surrounded by these sounds and at the same time I’ve felt a compelling sense of loneliness.
We all face our share of loneliness.
The ironic part is that like robots we respond, interact and even manage to laugh about or with those who surround us. However, we feel lonely in a room full of people.
Since I have a big family, I have a busy phone and kitchen. My husband and myself satellite around our kitchen and phones. I listen to endless conversations and always try to be a good listener and to an extent try to fix things that I feel are wrong if I can. In other words, I try to make like comfortable for all of them. Fill in voids with my voice and cheer them with my laughter, comfort and hug them all as much as I can. Nevertheless, I’m trapped in a lonely world sometimes.
Living with MG is a lonely path.
It would be nice to listen to someone ask me not if I’m well or not, but to listen to,
“How are you feeling?” But for real. Actually an outlet to let go of all my steam, to bear my soul, or to spill it all out.
My loneliness is not but a stream of thoughts about my life and how it’s changed during the past ten years.
My loneliness is a fair cry of a bird that wants to spread her wings and fly to the vast horizons.
Don’t get me wrong I know that I’m loved and cherished, and always have been. That’s not something I’m enjoying now because I’m ill, but it’s been part of my life ever since he became part of it as well. However, that doesn’t take away how I feel.
I’ve come to terms with the fact that my loneliness is mine to face only.
So my dear friends, next time the sun comes up with its majestic sunrise and accompanying sounds I will move on trying to cope with my loneliness and making the best of it. Maybe next time around I’ll find an opportunity to talk to someone of things that are important at least to me.
Don’t forget to be kind to yourself and to others.
Thanks for stopping by to read about life with Myasthenia and making me company on my journey to wellness. See you around.
Dear readers, I like writing my blog mainly because I get to share my feelings with others, but most importantly with myself.
Well, probably your asking yourself, “Why?”, “Isn’t the point of having a blog, trying to get noticed out on the vast horizons of the world wide web?”.
Everyone seems to be craving getting their fifteen seconds of fame.
For me sharing my thoughts on life, wellness, and so much more people who have MG have to deal with is important, but finding my voice is as equal or even more important.
A voice that is often silenced the moment you say something that’s not in the manuscript. I don’t know if you get it or not, however for me it is a reality that hits home more often then I liked to admit.
The moment that I try to say something like,
“Life stinks.” (Believe me it truly does sometimes.). Someone in my family will jump to begin saying, “You have so much.”
These are the moments I miss my daughter the most. She always says,
“Mamita, it’s okay if you think life stinks, you have a right to feel anything you want. Things don’t have to be okay.”
That’s part of dealing with all of this.
Having such a debilitating disease takes away so much, it’s overwhelming. Specially when you see everyone moving forward and you’re just sitting there watching as a bystander.
You know, I have an older sibling who I admire very much. We overcame a difficult childhood as best as we could.
I have mixed feeling each time I have to face the fact that he was able to complete a thirty year career in the Army overcoming a lot of things that happened to him along the way, and now as frosting on the cake, he’s about to begin a new career facing his retirement. He has a motorcycle he rides during the weekends and he seems to be happy most of the time. In a nutshell, he’s free.
I miss my career so much it hurts sometimes. Today the feeling of despair just creeped up on me and for just a second I felt without a purpose in life.
I thought , “Is this what people who feel like dyeing experience?
My life seems to be lived through a loophole, seeing only what others want me to see and even more dangerous pretending that everything is fine.
Nonetheless, I snapped right out of it.
I still feel sad, but part of being well is our capacity to be sad. As the day came to an end, I got my gardening gloves and this and that as I listened to Barbara Streisand sing about love, sorrow, and life. They say pets sense when something is wrong, so needless to say, my dog sat near me as I tweaked a bush or two, and got a longer pat than usual.
So my friends it’s fine to yell once in a while, even if it is to yourself, that life does suck for some more than others sometimes and it’s perfectly normal to feel bad about it and yourself, even if we snap out of it in a second or two.
See you around and remember to be kind to yourself and to others.
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.
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.
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.
“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.
May the words of this prayer belong to all of us today.
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.
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.