Myasthenia Gravis

Dealing with MG and extreme hot weather: NOT EASY!!!!!!

First of all I’ll like to explain what MG stands for.  It’s a short version for Myasthenia Gravis, which I like by the way more than the complete medical term.  MG is short and has a fun twist to it, it’s like having a bit of fun with the mystery of people finding out what it means.

A lot of people are familiar with MS (which stands by the way for Multiple Sclerosis). When I want to get through to people who ask me I simply say that MG is MS’s cousin.  Sorry my MS buddies (specially Cathy Chestner) for that little detour trying to explain what MG really is.

We’ve had pretty hot temperatures for the last couple of days, and for people with Myasthenia Gravis extreme hot or cold puts a lot of stress on our medical conditions.

via MOrgueFile

Today with a soaring 103 (93 and heat index going towards the 103 degrees) my muscles began to protest and scream,

What the hell is going on?????

I feel we went to the beach.. but missed on the spectacular views or sunset!!!!!

photo credit Melissa Segarra
photo credit Melissa Segarra

As the day went on I felt my fingers, arms and legs stiffen with the familiar feel of it’s a matter of time before the limping began.

I’ve been so tired that my fingers have been acting as if they had no life in them.  I’ve almost thrown every thing on the floor except the baby (thank God).  Today  I left the comfort of my home to go over to my mom’s even more hotter house so she can help me out with the baby.  NOT FUNNY!

Even now twenty some years after, I have to pass through the excruciating pain of having her tell her how I need to feed my baby boy,  Again NOT FUNNY!

The only thing that kept me going was the fact that by five I’d be home.  Gee, what a relief when my boys were on their way and I didn’t need to say any longer.

Hopefully tomorrow the day will be less hot.

Life

The Joy of Moving On

Today as I waited for Ian to come out of Sunday School, I talked a while with an outstanding woman who became a widow nine months ago.  Precisely a day like today nine months ago her beloved husband of forty plus years passed away as he enjoyed his Sunday nap.

She told me,

-“Today is one of the those days that I feel I can hold on to my blanket forever.”  With tears in her eyes.

I hugged her without really knowing why because I wasn’t thinking about her husband’s sudden death and I know her on a very superficial level.  Maybe it was because I was the only one there and she needed to get it off her chest,  I really don’t know, but  she continued to say,

-“It’s been precisely nine months since he left.”

I hugged her even more, and replied quietly, “we need to move on you know”.  These were the best words I could find out of the blue, even though it made me feel uncomfortable.

Yet after she nodded and went inside the church, I recollected that they were true.  We do need to move on when facing harsh situations in life.

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She’s living through a situation that will  probably take all her  energy, making  sense and adjusting to a completely new life. She will have to go through the agonies and joys of constructing a new life for herself.    She’s not really alone when she states that she wanted to hold her blanket forever.  Some of us have had to do exactly the same thing.

Some days all of us have felt we can also cling on to our blankets for a lifetime.

It’s been a while since I’ve blogged because I haven’t been feeling myself lately.  I haven’t been well, and even if this is nothing new to me because this is part of having a chronic illness it still hurts the same.  You just have to cling on to the days where you feel you are healthy and hold your part while you’re not feeling so great.

Precisely those are the days where I want to hold on my blanket forever, waiting while the storm passes.

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For each one of us our storms are different.

For me maybe it’s my illness, for others it could be  financial, family or work related issues.   Nevertheless, we also need to apply the same premise, “we need to move on”.

We should learn from nature, to every stormy night a beautiful sunrise will come up no matter what.  All we need to do is uncover our heads and watch its spectacular display and apply it to our own life.

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My dear friend, today will be over and tomorrow will come with its amazing  beauty and you will rise and move on. Maybe with the tingle of pain, but nobody said that life was easy, right?

Myasthenia Gravis

How lucky can I get?

According to the Office of Women’s Health of the US Department of Health and Human Services  the estimates of the number of people affected by Myasthenia Gravis  (MG) vary ranging from 5 to 14 people per every 100,000.  In other words in a population of one million you can find as few as 50 to as much as 140 people affected by MG.

I’m one of them!

Do you think I’m lucky enough maybe to play lotto and win the jackpot?

via Google Images

You never know, that’s why I’ve decided to play a lottery ticket once in a while, if I was lucky enough to be affected by MG, what are the odds I could also win the lotto?

Ever since I was told I had MG other than reading the booklet my neurologist handed to me I haven’t done much of research.  I haven’t even bothered to buy a book (one that would teach me how to deal with the situation), which is my solution for almost everything.

I really haven’t even explained it to my parents, all they know is that I have a disability, but they’re not much into the details.  Not because they don’t care, but because they care too much.  As long as I “look” fine, they are happy.  The days I don’t “look” fine I simply don’t go over to spare them the anguish of having to deal with my illness.

I’ve let things play out.

I’m more than sure that my children have done their fair share of reading, which has made them understand how this “thing” works and offer me the help I’ve needed in the years that have passed ever since.

How do you deal with facing life with a chronic illness?

The answer is simple, living every day as best you can.  Knowing that “it can only get better.”

Information is power and certainly helps deal with unknown aspects of any illness, but it’s also like when you read a given side effect of a prescription.  Once you know the side effects, your mind can play tricks on you and may feel the symptoms, even if you don’t have them.

I’m not willing to take that risk.

via Google Images

On another side, some people affected by these type of events in their lives become crusaders of the cause and everything they do is related to their new reality.  Even though I admire them for that, I just can’t make myself do it.  It’s not fair! Why do I have to embrace a reality I don’t like?  I will never become a MG advocate, I resist doing anything about it except accepting it in my life.

My acceptance begins and finishes with the fact that my kitchen clock rules my life. Every six hours I have to make sure I don’t forget to take my prescription of Mestinon 180 XL.  God bless the scientists who developed this drug, without it I would be as sick as a dog 24/7.

Other than that, what can I say?

Some of us are just darn lucky!

Myasthenia Gravis

Are you brave enough to put yourself out there?

A lot of people who have chronic diseases blog about their experiences as a way to help themselves and others along the way.  One I particularly admire is Cathy Chester.  I admire her because she tackles things heads on, looking for solutions and not excuses.  She recently participated in a blogging event that had challenging physical demands (for people who suffer from a chronic disease)  and found ways to adjust her needs to the schedules and activities around her.  She put herself out there and for that, thumbs up Cathy!

Writing about my own struggles with Myasthenia Gravis wasn’t even an option when I began blogging.  I hate talking about it, so writing about it was out of the question.

Probably it’s because I lost one of the things I most valued to Myasthenia.   I lost my career!  Not only because I couldn’t get the job done, but because I loved teaching so much I could have done it for free.

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Each year when August comes around I feel overwhelmed with the worst feeling ever, longing.  I long to go to work and do what I know how to do best.  Surround myself with all the familiarities of the school.  I miss seeing a fresh new group of young faces that I will get to know well during the next ten months.  I long the noises students make when they enter and leave my classroom.  I long the smell of the markers I used on my board.  I long the papers, the copies, the notebooks, the grading, and basically I long for all that being a teacher is.

A chronic illness affects every aspect of your life and the feeling isn’t pretty.  I will always remember the first time I even heard about it “chronic illness”, I thought “Wow, I’m really screwed.”  To my relief I later read that chronic means that you’re going to have it as long as you live.  So, instead of thinking I’ll die soon, I  changed it to I’ll die a little each day as long as I live.

My first diagnose was MS and since I didn’t have an idea what it was, it really didn’t affect me to much when the neurologist that was taking care of me back then said it, she didn’t get much of a reaction.  She went on explaining what the condition was and how it would affect me.  I remember thinking about how my life had changed in a short period and basically I was in denial.

After some more tests, MS wasn’t my diagnose anymore and I changed neurologists and my internist referred me to the Muscular Dystrophy Clinic in a nearby Medical Center.  The first time around, as my husband and me got off the elevator and stepped inside the clinic,  I turned around and darted back to where the elevators were, I couldn’t bear the sight of all the patients that were there.

He dragged me back literally and made me face my reality.

I was diagnosed a couple of weeks later with Myasthenia Gravis, and my life changed dramatically.  I became dependent of my family for support and to help me get through the day in things that I used to do without help or thought.  Things we take for granted, like taking a shower, walking short or long distances, standing up, singing, laughing, etc.  It even took away the pleasure of food for a while, as I struggled not only with chewing, but with being able to swallow my food.

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What I hate the most of having this is the fact that I worry my family.  Each time I have to go and rest  because I’m not feeling well I get to see the worry in their eyes and that breaks my heart.  My teenage children grew up faster than their peers because they faced life with a sick mom.   Still today during the mornings, when their in college or in work, I receive several messages always asking the same thing, “Are you okay?”.

Thank God food has stopped being an issue, because our meals were stressed as their eyes were always on me while we ate.  They felt nervous I would choke on my food.  Our family meals were interrupted more than once as I had difficulties eating.  That was a literally a nightmare.

They always need reassurance, that I’m fine.

Some years have passed and I’ve learned to deal with the ups and downs of suffering from a chronic illness.  It doesn’t mean I want or accept it in my life, because some days like today I resent the hell out of it.

Yet, it all comes down to living the best you can my dear friends.