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.

 

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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 & 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 & Flare-Ups: Humbug

Dear readers, when flare-ups come around my life I feel like the MG Scrooge and I just want to say “Humbug”.

I’m not going to write about the specifics of our flare-ups because each one of us will have a different story to tell.  I’d like to humbly share my feelings about these awful flare-ups reaching out to others so we can make the best of it together.

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I hate to feel weak.

It makes me cranky, sad and defeated. The worse part is knowing that my body is doing this to me AGAIN. It feels like I’m punching myself in the face. Ouch!

I wanted to make this point because sometimes other people think it’s easy for me to remain positive and cheery all the time when the truth is I’m  not feeling like that at all.

However being the hopeless believer I am, after my initial “humbug” I come around and begin the healing process once more.  At this point I’m not that interested in healing my body, but healing my drenched spirit. Getting it together and moving forward once again.

Even though my family loves me tons and tries to do the best to support me, sometimes I need to attain comfort within me so I can deal with the issues each relapse brings. I can have them a million times and each one of them is going to be different except for the weakness which all of us know is the common denominator.

Reading and listening to music helps me tons. One of my favorite blogs to read ever is from Cathy Chester,  she battles multiple sclerosis and through her writings I feel better because I can relate to many things she brings to the table.

 

One of my favorite authors is Jane Austin, and in her book Emma, there’s a quote I absolutely love,

“It is well to have as many holds upon happiness as possible.”

For all of us happiness means different things, but one is common to all human race and it’s about finding solace and peace within our lives. Facing a chronic illness takes away so much, that it’s darn difficult not to become Scrooges.

I would always think about the negative whey before bringing any positives into context. Nowadays, I’m trying to retrain my brain, so positive thinking comes always first.

Many times I’ve smirked at myself, thinking, “Who am I kidding?”, but I always come back and try to just collect myself and keep on going.  It’s so easy to give up and so hard to keep my spirits up.

But, you know my dear friends, all of us are a work in progress.  For some it’s gonna be easy, for others not so.  However, let’s hang in there, because like Phil Collins sings, “It’s gonna be all right.”

 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 quest for wellness not only of my body, but most importantly of my soul

 

 

 

 

 

 

 

 

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