Call Me A Jerk

Hello my dear friends,

Today and the previous two days my myoclonic jerks and/or dystonia have been acting up.  Just call me a jerk.

UnknownI’ve been so spasmodic that my husband’s face was creased with worry.  He demanded that I go back to bed.  It was a good thing to do.  I was slipping and sliding in my chair because I could not control the jerks that propelled me forward inch by inch towards the end of the chair, and eventually, I would be on the floor writhing in agony.

You see, I also have a form of Dystonia.  I forget which one my Neurologist told me, but he rattled it off on my last visit.  He said, “You know that you have?????? dystonia, don’t you?”  I was surprised.  He said, “not only do you have MS but you have a secondary disease of ??? dystonia.”  I stared at him looking dumb.  I replied finally, “Great, just great.”  I knew I had myoclonic jerks, but I didn’t know that I had a second disease.

All of what is happening to me these days is because of stress.  My quality of life is a daunting challenge and I have to fight every day for some form of normalcy.  I mean, my kind of normalcy, which we all know is also challenging.

The cause of all this stress is my upcoming surgery on Thursday.  My surgery is unrelated to Multiple Sclerosis or Dystonia.  This surgery will be attended by two Doctors and will take 3-5 hours.  I have good reason to be concerned which I won’t go into here.

slideshow_1259634_131408-clocksI have to focus on my 5-minutes at a time.  If I didn’t, I would be a mess right now.  However, the stress is still there even if you have a plastered smile on your face and I’m good at wearing a smile despite everything in my life.  Surprisingly, it works in that once you have a smile on your face, although it is “put on” in the morning, you find yourself living that smile.

My take on all this:

Stress is not always evident by your physical nature, however; it finds it way to the surface psychologically of physically in due course.  When it becomes evident to you and others by your body’s reactions to every day occurrences, then it’s time to figure out what may be causing that stress.  Once you know what it is then you can find a way to deal with it.  When you can’t find a way to deal with it, take your day in small increments and handle it that way.

I sit here hoping to hear your prayers on Thursday with a smile on my face taking my life 5 minutes at a time.  Sure, I’m still jerking around all over the place but that can’t be helped.  There is no way to take away the underlying fear of surgery.

I will happily jerk my way until Thursday at which point I will probably succumb to tears.  Meanwhile, I am as ever, a jerk.

Meet and Greet: 8/27/16

Meet and Greet: 8/27/16

DREAM BIG DREAM OFTEN

Dream-Big

It’s the Meet and Greet weekend!!

Ok so here are the rules:

  1. Leave a link to your page or post in the comments of this post.
  2. Reblog this post.  It helps you, it helps me, it helps everyone!
  3. Edit your reblog post and add tags.
  4. Feel free to leave your link multiple times!  It is okay to update your link for more exposure every day if you want.  It is up to you!

  5. Share this post on social media.  Many of my non-blogger friends love that I put the Meet n Greet on Facebook and Twitter because they find new blogs to follow.

Now that all the rules have been clearly explained get out there and Meet and Greet your tails off!

See ya on Monday!!

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Frazzled

health_drvisitI have been running around all week going to one Doctor then another.  I am having surgery on the 1st of September.  I have a huge incisional hernia that has been bothering me.  Isn’t Multiple Sclerosis enough?  My cup overfloweth!

As I think about you, wondering how you are, I sit here trying to communicate with you and longing to see you.  There is nothing and no one like someone else who has the same identifying disease, Multiple Sclerosis, who could understand the emotions that run through head and heart during times of stress.

Surprisingly for me, I am having a difficult time following my own philosophy of “Five Minutes”.  I will have this up soon for you to look at.  Those of you who are following me or give a “Like” on my blog will get a free copy.  I am failing miserably at this theory.  I have to read the E-book myself to boost myself up.

My husband is very worried as well.  I will have two surgeons at my side and will be under anesthesia for about 4 hours or more.

I hate anesthesia.  When they try to put me to sleep, I fight it, which is pointless.  I think it’s because I hate being completely out of control of my body.  Secondly, I’m afraid I won’t wake up from nothingness, not even dreams live in that anesthetic state.  Thirdly, it’s a bit insane to allow yourself to be taken under to nowhere so that people can look at you at your worst, then look and muddle their way inside of you  in places that you haven’t seen yourself.  In a way, physically at least, they know more about your body than you do.  It’s a very intimate knowledge.

On top of my sundae, there is always a cherry on top.  This cherry is finding out that I will need to have cataract surgery on both eyes.  One eye will be done in October and two weeks later, the second eye.  Isn’t this fun?

It would be great to hear from more of you to hold me up in spirit during these difficult days.

But wait!!!  Let’s do a—

My Spin On This

Okay.  Let’s do my thing here.  I will analyze myself.   What is your problem, Maggie.  Why are you ignoring your own rules?  Why are you in a panic over a surgery?  I know you had sepsis once but that’s old news.  You can’t compare one to another.  You can’t or shouldn’t project about what happened in the past to a situation that is going to happen in the future.  What happened to living right here and right now?  So give yourself a slap upside the head and be a good example for your family and friends.  Yeah, the people reading this are your friends too.  Why else would they spend their precious time reading all your stuff.  So forget about all of it.  Just concentrate on what you’re doing and do it well.  Okay?

Hmpf!!!!!!

 

A Freezing Day With Botox

15704I went in to see my neurologist about six months ago and I complained about my head dropping down and/or over to the right.  I was always looking down, in either case.  I would sometimes bump into things because I wasn’t looking forward.

It was decided that I should have botox injections and I believe I wrote about this earlier in the year about the horrible effects it had on me.  My chin was pinned to my chest.  It took three months of a gradual wear off before I could lift my head up again.

My neurologist was flabbergasted.  He said he gave me an extremely low dose of it.  Botox works on the muscles in the neck the same way as they work on the face.  That’s why oftentimes, people who get a lot of Botox injections for cosmetic reasons, have a tendency to have a frozen look about them.

My neurologist thought that I was super sensitive, as we both were aware of, due to years of experiences we had trying out different medications for relief of symptoms for me.  It became clear that I was extremely sensitive to certain types of drugs and to others, I was not sensitive at all.  In fact, the ones that I wasn’t sensitive to, we upped dosages many times and finally tried something else because of the drugs inability to offer relief, in my case.

It was an extremely difficult time for me not only physically but emotionally.  I was afraid to go out anywhere knowing that I must appear strange to people.  I already knew that people could tell that I had some sort of disability but this was like me screaming in their face, “Look at me!  I’m a sick gal!”

It was a relief to me when my neurologist decided that I should see a neurologist who specialized in giving these types of medications with specialized guided equipment.  This was an inconvenience due to the distance to travel but it was a relief knowing that I was in good hands, at least I hoped I was.  As it turned out, my hopes were realized.

The injections were given when the machine made these strange ticking sounds suggesting to the neurologist that it was the right location.  The dosage was also decreased as well.  However, it didn’t seem to me that the number of injections was less.  Unfortunately, this Doctor has moved away and I don’t know if anyone replaced her or not.  I just know that I don’t want to have to travel that far if I can help it.

Over time, the predictable happened.  I was back to square one with my head.  Correct that.  I am now back to square one where I look like I’m walking as though I should be carrying one of those metal finder machines panning for treasures.

My neurologist and I looked at each other this past week or so and realized that we were going to have to try again without the advanced technology.  When he and the nurse prepped my neck, they felt the muscle that they thought was the culprit.  It was, in their opinion, way too tight where the other ones were stretched out.  The neurologist assured me that we were going down even less in dosage and that hopefully, we would do okay.  HOPEFULLY?

Everything went well and I held my head as high as I could for the next several days in the hopes I could raise it even further in another few days.  Not.

I am so frustrated and disappointed.  I just want to howl at the moon.

I noticed that my head felt heavier and heavier as the days progressed and then I realized, oh no—my head is freezing again.

I woke up this morning and sure enough, I could barely lift it again.  It will get worse before it gets better.

I am not going to put a “nicey nice” spin on this article.  I’m angry, frustrated and sad.  It’s pointless and serves no purpose whatsoever but it’s how I feel.

I spoke to my Doctor’s nurse this morning to report the situation to her and to cancel my appointment with him in a month because I just happen to be  going in for a major 2-Doctor surgical procedure at about the same time.  My cup runneth over!

I told the nurse the situation about the botox and she said, “But we lowered the dose!”  To that.  I replied that I knew that I was not a physician or a nurse, but it is apparent to me that it’s not the dosage but the locations they choose to give me these shots.  She felt bad and told me she would let the Doc know and we hung up.

images (1)Come on folks.  Don’t you agree?  I don’t know.

I’ll get back with you when I’m in a better mood.

Isn’t this a first?  Maybe not.  I wrote a bitchy blog.

 

You And I In Cyberspace

cyberPeople like you and I, who have an autoimmune disease such as Multiple Sclerosis, oftentimes had no outlet or venue to speak out the rambling mumbo jumbo of thoughts that tried to pass through our broken synaptic gaps.  In other words, we had no one to talk to because put simply, people get tired of hearing about our disease or any disease.  As a matter of fact, people (not all) prefer not to dwell on the not so pretty side of life.  Of course, there are those, more than I like, who do thrive on the negatives in life and are so into it, that when you try to talk about your problems, they will interrupt you to tell you about theirs.  Even in this situation, you are still left with no one to talk to.

With the advent of the Internet and blogging, a whole new world opened up to us.  Grant you, it is a rather shallow world because there still is no interaction, but that is almost preferable because you don’t have anyone interrupting you.  You also are not dealing with the sense that the other person you are speaking to is tired of the subject.  Instead, you have people reading your blog because they are interested in the subject.

You sit quietly at your desk or wherever, and throw out your thoughts to a captive audience who are sitting somewhere out there and are actively reading all about you.  They have stepped into your corner of the world and are now peaking inside the windows of your home.  You know they are out there but you don’t know when they will show up.  You can’t ready the house for company.  They have to accept you as you are.

Right now, I’m sitting in my nightgown.  Sure it’s almost noon here, but I have nowhere to go and no reason to get dressed.  Do I care?  Do you care?  No.  As long as I’m typing and you are reading, both parties are content.  Do I care what you are wearing or the environment in which you sit while you read?  No.  It works both ways.  You are looking for something to read and I am looking for an audience.

Am I?

cyberspace_feeling_by_ophelias_overdoseNo.  Now that I think about it, I am not looking for an audience.  So why do I blog?  I’m a writer.  I’m also a composer of music and musician.  Add to that, I’m an artist as well.  I don’t do any of these things for an audience first.  I do them because I am compelled to do them.  I was born to do these things.  Ultimately yes, it would be great to have an audience.   Your work cries for an audience, but it is the “work” that cries for an audience.  You can’t help what you do.  You just do it.  The work languishes on your computer or on a canvas sadly collecting dust, chomping at the bit to be displayed, heard or read.

All that I am and all that I do is of a solitary nature.  I did not choose this, it chose me.  Unfortunately, my personality is completely opposite of someone you would picture doing these things.  I am an extrovert.  I seek real people.  No offense to you and your warm bodies.  I do appreciate you more than you know.  However, wouldn’t it be nicer if you were sitting here with me and we having some coffee and chatting?

Nope, that wouldn’t work, would it?  We would be back to the beginning of this blog where one or the other of us would become unsettled in the conversation.

This disease or any disease of this nature is incredibly difficult to deal with in that the mind is willing and active but the body is not.  What does this have to do with the topic I’ve been discussing?  Nothing.  It’s just a thought I had.

I am grateful for cyberspace and for all of you out there who wander into my space.  I am even more grateful for those of you who have chosen to check out my space every time I post.  This makes me feel warm and cozy.  I wish there were more of you.

Actually, this is a restart of my blog of nearly 10 years.  It’s a long story but the blog was lost and I didn’t have a backup of it.  It broke my heart and I cried for my best friend.  As usual, though, what did I do?  I started over.  Here we are, you and I, rebuilding my blog because you are an integral part of this blog.  You are also an integral part of my life and disease.

In the end, I prefer you out there and me in here.  It’s the safest and more satisfying place for both parties to be.  You can walk away from reading anytime you want to and I won’t get hurt because I won’t know that you got bored and left.  I can sit here in my nightgown not caring if you see me twitching and falling over to one side with my head dangling down to the right.  You can’t see me.

I just had my Botox injection and in a week or so, I won’t look so ridiculous.  I should take my meds now, the first avalanche of them and soon I will pass for halfway normal to get through my day.  That way I can put on my smile and most people will think, “I can’t believe she has MS!”

digital-game-cyberspace-25330609For this 5 minutes of my life, I’m content to sit here in Cyberspace with you at the center of my world.

Mr. Sandman

images (1)The sandman came today.  He knocked on my door last night and dummy me, I let him in.  Mr. Sandman did not take any hints from me letting him know he had overstayed his welcome.

I sleep maybe two hours at a time any given night.  Most of the time, I just get up and find something to do.  I require little sleep to function.  At least that’s what I believe.  My doctor’s don’t agree.

I’m wondering right now what Mr. Sandman does when I fall asleep.  Does he sit there watching me rest?  I had to question this today because when I woke up from my normal two hours of sleep, he was still here.  I thought I had made it clear to him that it was time to go home.  I went to the bathroom and came back to my office chair.

Oh, I forgot to tell you.  When Mr. Sandman came, I was in my office.  I fell asleep there while sitting in my chair.  When I got back to my chair intending to work (trading), Mr. Sandman was insistent on making his presence known and before I knew it, I fell asleep again until about 7:30 am.  I couldn’t believe it!

Mr. Sandman wasn’t around when I woke up the second time.  Good riddance.  He is not like my Man in The Moon.  I referenced him in an earlier blog.  The Man in the Moon can come over any time he wishes.  He is always welcome here.  Mr. Sandman is a different story.

I don’t know why I’m so averse to having him around.  Perhaps it’s because he steals the time away from me and The Man in the Moon.  Perhaps he is jealous?  I can tell you this much.  We don’t get along at all.  In fact, every time he appears, I tend to fall asleep.

Now here is what vexes me.  The Man in the Moon hung around with Mr. Shadow all day long.  You know Mr. Shadow who seems to follow me around unless he is standing in front of me from a different view, wanting to make his presence known.  I’m accustomed to Mr. Shadow.  Mr. Sandman doesn’t make himself known all the time.  His presence comes and goes into the night or sometimes during the day, however; I can always sense him around me.  He exhausts me with his persistence.

Getting back to reality, I slept most of the day in addition to what I slept last night.  I think it’s my body’s way of catching up for all the lost hours of sleep that I need.  Maybe it’s just the fatigue that we get with Multiple Sclerosis.

images (3)My Take On This:

There is no fighting this sleep.  It takes over completely.  It doesn’t matter if I’m cooking or washing the dishes.  I literally will fall asleep standing by the sink or by the stove standing up.  Dangerous?  Yes.  I should acquiesce to the state I’m in and do nothing, but I feel such a sense of responsibility to cook the bacon that is brought home by my husband who brings home the bacon.

This relentless need for sleep is different than the narcolepsy I experience.  I can’t control the narcolepsy either but it’s for a few seconds at a time.  This need for sleep happens for hours at a time when I nod off.  I never know how long it will last.  I do fight it but I always lose.

This is nothing to lose sleep over.