MG & Sex: Security or Mystery

Dear readers, having a chronic illness doesn’t mean we can’t spice up our relationships with some mystery now and then.

Security or surprise

Even though my husband offers me on a regular basis love, compassion, and most of all security, sometimes I like to run away from that same security.

I’m an incurable romantic spirit.

I absolutely love to read romance novels and one of the things the male protagonist always has is the  “mystery” factor.  I’m not gonna get a thrill if my  protagonist is reading the newspaper in the kitchen counter.

The thing is, sometimes I ask myself  “Am I entitled to have that mystery in my life even if I have MG?”.

Well, I’ve come to terms over the years with this interrogative and have  come to the conclusion that not only me, but all of us deserve to have everything that a relationship has to offer.

On my own, it’s hard to come up with great ideas so I often get inspired by this amazing relation therapist Esther Perel, who by the way is a Ted Speaker and after  reading and listening to her I come up with an idea or two.

Now here comes the best part, as a person who has MG I have to be extra creative.  Now this can go in two different directions. One, we come up with new ideas or the other way around,we come up with no ideas.

You see my dear friends, it’s not bad at all to want more than we have sometimes.

Sex for MG patients, is a bit like every other thing in our lives.  We have to wait sometimes till the good days come around. That can add to the surprise factor, because in the moment you least expect it, Wham, you get to have one of those days.

If I’m having an extra extra good day, we go out for a dinner date, if not we stay at home cuddling and just talking about things only related to US. We leave everybody and everything out of the equation even if its just for a little bit.

When I want to wear a nice piece of lingerie or something nice for a dinner date online shopping works fine for me.  My secret for perfect fitting is that I shop at the same stores I used to go to and I try to buy the same lines of clothing or lingerie so I know how the sizes run.

Believe me, it’s all worthwhile the effort when my husband gives me the “delightfully surprised look” and words fail to express how great I feel about that.

So you see, my dear friends we all need security, but we also can’t leave out some element of surprise.  Each one of us gets to chose what that element will be. Don’t miss out on anything just because we live with a chronic illness.

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 & 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






It’s Easier Said Than Done

Sorry, but it’s taken me a bit more effort than I thought it would.

For starters, if I’m writing about staying fit despite my Myasthenia than I better be able to do the work.

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via morguefile

I’m working on an article about yoga, not only to let others know, but to put in the work and do what needs to be done.  It’s not that we are always  going to ask others to cut some slack on us  because we live with a chronic illness.

We need to put in our best effort if we are trying something new, like in this instance yoga, to know if we can benefit from it on  a short and/or  long term.  I think changes are meant to be done on a long term  because that way we don’t get discouraged if we don’t see immediate results.

For starters, my first “AH!!!!” came rushing into the picture  when I read that Pranayama (breath control)  yoga was good for us.  My first thought was,

“I have trouble breathing sometimes as it is, I don’t need to add stress in that department.”

Which made me  scratch it off  my short list without even giving  it a second glance.

But, since it continues to show up each time I look into Kundalini yoga,  I am going to give it a shot.

Nevertheless my writing about all these  hard to pronounce yoga types, I haven’t finished getting all my information together.  Not for the sake of writing an article, but to put into practice the concept and actually giving it a chance and letting my readers know how it went for me.  So, others can try to it to.

For now what I’m working on is my posture, staying as straight as possible and giving my diaphragm a much needed break.

You can say it’s a getting ready thing.

So my readers, don’t forget that each day we get to live is one that we own.  Never let others push your voice down (even if they love you tons), because in the long shot we are the ones that really know ourselves.

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.