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

In the Eyes of Reality

It’s funny how you can detach yourself from reality.

June is MG’s Awareness Month where the most important thing is to educate people about the disease and how it affects people who suffer from it.

I thought I was doing my fair share of work by posting on my wall different banners that talked about the disease.

For a moment I felt appalled, after I took time to read the one I was posting to my brother’s wall.

what would you do

 

I’m not even sure my brother is fully aware of what me having Myasthenia really means.  However, this banner didn’t leave anything to the imagination.

For a moment I felt overwhelmed.

It described who I was and where I’ve been in the past six years.  When my son asked what I was doing, I told him that I was posting banners on Facebook to create awareness.  His answer pretty much summarized my feelings.

-Mom, take it easy with the posting, that’s going to make you sad.  I feel sad when I read it, and it’s not me.

He was checking his FB account on his phone, so he knew what I was up to.

The point is that sometimes and just sometimes any chronic disease can overwhelm you.  I don’t know how people who advocate so strongly for a cause don’t become the cause after a while.

Or is it that they can detach themselves at one point, to be able to cope with the situation.

I’m not sure if my one and only brother wants to deal with this now, but I felt compelled to just let him know through a banner how I felt.  I wasn’t tagging him on my banners only my husband and kids so they could put them up on their walls. But suddenly I felt an urge to tag him with the above banner.  After a couple of minutes he “liked” it.  Are you suppose to like something like that?

My post read, I am MG.

What do you like, that I have MG or was your “like” to say here I am? Either way, I replied and asked him to post it on his wall if he “liked” it.

A lot of people don’t know I suffer from MG, they don’t even know what’s wrong with me.  All they know is that I’ve been sick for more time that they can remember.  Some time ago, a friend told me you look so much better than what you have.

While I was posting my banners, I placed a couple of them in my daughter’s inbox.  It’s time for her to post one too, she may not be telling the world,

-You know what, I love a person with MG.

Basically because even though she’s accepted it a long time ago, it fills her heart with sorrow.  Just as it does with my boys.

So you see “mis queridos amigos” we have to face our realities one way or another because if we don’t we’re missing on the important part which is moving on and that is one of the things that life is all about.

MG-together-stronger

Myasthenia Gravis

Can “will power” keep you healthy?

I decided to write a question instead of a title because it was too good to let it go.  At least for me!

The sweet nurse that got my record going in my new doctor’s office,  thought so.

If you read my blog you may or may not know that I live with Myasthenia Gravis.

If you want to hear a bit about my definition of what this is just click and you’ll get yourself a little story.  That is if you are interested, people who are, usually have a personal interest.  If not they just don’t care.  I’m not saying this in a mean way, but in a matter of fact way.

Nobody really wants to hear sob stories or anything related to medical issues unless you are suffering from some sort of ailment.

I would personally prefer the oblivion of a trashy Harlequin novel to tell you the truth.  So, who am I to blame anyone?

Now coming back to my title question and the dear nurse that helped me this afternoon.  She was quite comical in a sense, she made me feel good about myself even if she was drilling me with questions.

She said,  “You are my second patient with Myasthenia.”

I thought, Wow! On an island with more than four million people, I know there must be some out there. I know for sure relying on statistics that I can find at few as 199 or as many as 599 more than me living with MG in Puerto Rico.

In other words, the range is from 50 to 150 per million!

My obliged question is, “How old is he?

Well, 74, he has a bunch of health issues, but he doesn’t let them ruffle his hair. “

I thought well at that age few things ruffle your hair anyway.

She went on talking to me about coping and living with my illness, not that I need a crash course.  I’ve lived with it for more than eight years now, so I definitely got the memo.

Don’t let it depress you!”  she went on to state in her warm, kind voice.

Thank God I actually liked her, if not I would have been so pissed.  I hate it when people tell me how to take things when they don’t have an idea of what its like.

I’m not into depression.” I replied.  Could have added easily I blog instead. That sure keeps things at bay.

Here comes the title,

You know, if you really want it you can keep healthy using your mind.” She actually believed it, and went on…

“Don’t let things get to you.”

I just nodded and thought to myself, how in Earth can you will yourself healthy. Thoughts take a toll on us and worries basically kill what’s left.

BAM!  (Think about Batman’s comics when he was into a fight with the Joker or anyone that was a threat to Gotham City).  That sort of BAM!

via Google Images

People who suffer any kind of illness or ailment should be able to wear a super hero shield.  That would take away all the awkward moments they (including myself) have to live through.

It wasn’t fun to hear about a 74+ that needs to be fed with a straw.  I could only think about my mom who is 72 and is a firehouse and in full command of her life.  Being fed, walked or wheeled in, isn’t a nice pic into my future, I prefer not to know.

Even though I fully appreciate her wishes and coaching in all, it’s not fun to worry about Prednisone induced diabetes and its effect on my body, specially my kidneys.  My heart goes out to all of you out there who suffer from Diabetes.

Which ultimately led me to believing that even if we don’t like it,  we can’t protect ourselves one hundred percent, but I’m going to try the best I can.

My super hero invisible shield should do the work!  Even if it sounds silly or even stupid!  On the road ahead, I’ll at least try to empower myself as I protect my thoughts and heal myself in the process. Even if its only to feel for a second in time,  that I’m okay.

So the answer “queridos amigos”   to the opening question, is maybe yes or maybe no, it all depends on you and you only. Would you give it a try?

 

 

 

 

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