Health

The Miracle of Medications

I was invited to talk about the medications I use by the American Recall Center for which I am more than grateful.

Advocating for discussion on any medical issue is something I always like to engage in. Life is about compromise, giving and taking.  As a golden rule I always try to give more than I take.  In other words,  balance is  the key for everything and anything in our lives.

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As a person who suffers from Myasthenia Gravis there are a few (irony)  medications I use on a daily basis.  Since I’m aware that MG is not that common I waived on talking about the main drug that helps us function on normal levels each day (Mestinon is my miracle) and decided to talk about prednisone. Which is a medication that is more commonly used to treat many diseases and health issues.

I take it to treat a long-lasting disease, it helps Mestinon work more efficiently, although it helps I’m aware that it will not cure me. I’ve been on it for more than five years.  I’ve taken it as high as 80 and as low as 2.5 mgs. per day.

Prednisone is meant to be used in very small dosages (causes less harm) and not on a continuous way.  Some people refer to it as a miracle drug because it makes you feel well, strong even healthy.   Hold your horses, people!!!  Even though this is  true, prednisone affects your kidney, retinas, skin, you even get to experience acne (not on your face, but on your scalp) all over again.  You feel you are in puberty, but in a very wrong way.  Which gears us to be very careful when the medication is prescribed.

These are just a few side-effects, if you want to know more you can click on the link and you’ll find plenty of information on it.  I’m not going to get to technical about it because I want to focus more on how you feel when your taking this medication.

For starters, you may experience weight gain during the time you are on it.  This is the part that troubles me the most.  Tsk, tsk, don’t get all rounded up because I’m vane.  It’s not about looking pretty, or even fit, it’s a bit more than that.  It’s hard to gain thirty plus pounds after six or seven months of high doses of prednisone.  Specially when your cloths don’t fit any more.  For Myasthenics, mobility is always an issue and if your big, getting able to do the most basic tasks is almost impossible.

Another big issue for me is the insomnia I experiment because of the dosages. Not being able to sleep at night is BAD, real BAD.  When daylight comes around and the Sun begins showing it’s spectacular rays (about at six in the morning) instead of feeling grateful your witnessing such a majestic view, your exhausted.  Meaning that basically there is not much you can be grateful for during the day.  Your middle name is Grumpy, mine becomes Grumpy Mama.

To make all of you happy campers, by not writing too much, I’ll move on fast forward to what I really want to share about this medication.

As a patient you need to work with your doctor.  I’ve had the same neurologist since being diagnosed in 2007. I trust him to take care of me and he trusts me to follow instructions.  Be sure you are not a number on a record, but someone he knows.  Believe me, It’s easier to discuss things that bother us.

Take it easy on the sodium and all types of foods that are high on preservatives. A friend once suggested that I try a clean diet.  I thought,

“Here it comes, a vegan nut.”

Since my grown up children insisted, I tried it just to keep them quiet.  Surprise, surprise, it actually helped bundles.  If you’re interested google it and you’ll find tons of information.

Try to exercise, even if you feel tired.  For starters, choose a nice place and listen to your favorite music that helps me a lot.  I listen to Disney movie tracks because they always have inspirational themes.

Don’t surrender your life to your illness or your medications.  Remember they are meant to help us, not destroy our lives.  If you are not sure about a medication just insist on discussing it with your physician.  It’s your life we are talking about not theirs. This is why trust is so important.

Take your medication as they are prescribed, don’t mess around with the instructions.  This will only make you feel worse.  As a prednisone long term user l’m aware of the dangers of not taking my medications, if it needs dose adjusting, the only person who can do that is my doctor or yours.

Last, but not least “mis queridos amigos” remember that we only get to live on this beautiful blue planet just once, make the best of it.  Make your own choices and most of all try to find joy in your life.

See you around the corner, and remember to never stop believing in yourself and in the goodness of life because each day the medications we take (if we know how to use them) become our very own miracles.

“Hasta la vista.”

Myasthenia Gravis

The Spooks of Relapses

People who suffer from chronic diseases often have to deal with the mishaps of relapses.

I always remember when my neurologist told me eight years ago, “you have a chronic disease”.  Wow!!! I thought that it meant that something terrible was going on with me.  For a moment I saw the ripper coming to close for my commodity.  When I got home and read the booklets he gave me I learned that what it meant was that I would have to deal with my illness for the rest of my life.  whoosh, what a relief! So, I kissed the ripper goodbye and tended to putting my life in order.

It wasn’t easy, but I did it.  The only thing I couldn’t and still can’t control are when, where and why I always face relapses.  Relapses are when my disease enters an acute phase. You can say that it peeps around the corner reminding you that you still have it even though most of the time you feel pretty good.

In occasions they can come around without notice and other times they can appear with certain things like a severe cold or a stressful situation.  It all depends.

None the less, when they do arrive they are like unwanted solicitors or an annoying visitor.

The thing with relapses is that they remind you that you’re not okay.  You live with a disease even though sometimes it seems you’re fine.  I always think of my relapses as reminders of not taking anything for granted.

For example, most people take their legs for granted.  They enjoy walking, running, going up and down stairs, and so many other things. When everything is under control I also enjoy the freedom of my legs.  However,  Myasthenia can debilitate legs,  arms, lungs, voice, etc.  Which means that my dear legs go on strike when relapses come to haunt me.

Its as if you are going to fall in any minute.  Scaaaaaary!

Now however, dealing with mom is another thing.  She thinks my relapses are my responsibility.  “You don’t take care of yourself!”.  Wow, does that piss me off.  What she doesn’t understand (or wants to, in fact) is that relapses can occur without notice.  It doesn’t matter how much or less you do take care of yourself.  Anything can trigger it and basically you can’t do anything about it.

I’m not such a huge fan of sharing my experiences with my community (MG online communities) because reading about people’s experiences give me the creeps.  I’ve always had a hard time writing or reading about Myasthenia because acceptance has always been an issue for me.

I tend to push my condition to the back of my mind and never let it play a major role in my life.  However, when relapses come around the corner I just can’t avoid letting it take over who I am, if only for a couple of days (hopefully) till things get back to normal.  What I hate the most is the fuss of staying in bed.  I have to be on Atrovent, for my lungs, every three to four hours and my meds go up and steroids are to be taken.

If I’ve learned something (and believe me I have) out of having a chronic disease,  is that each day is God’s gift and as such, I embrace it full of joy.  Looking at it from this point of view, maybe relapses are reminders of how blessed I am to have a loving family that cares and nurtures me back to health.

So, my dear friends we need to deal with every aspect of our lives because nothing we can do will change that.  The good and the not so good!  Things are what they are and all we can do is wait until everything settles back eventually to normal.  Being normal whatever it is that normal means to each one of you.

 

 

 

 

 

 

 

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!