Don’t Swat The Fly


I hope you are doing as well as you can be in this imperfect world of ours.

I’ve been in and out of here due to medical issues.  I’ve had six surgeries this year.  Ugh.  I have one more I need to schedule.  I’m hoping that this will be put off until next year although with the symptoms I am having that makes it apparent that I have a problem, I don’t think so.

It seems to me as I head off to another birthday which gets me nearer to becoming a pile of ashes in an urn, that my body is racing to get there.  My brain/intellect screams NO!  I’m not ready.  At this point, my body seems to be winning.  You all know me and know that I will not go until I say it’s time to go.

I don’t fear dying.  I’m rather looking forward to it so that I can find out once and for all, “Is there life after death?”  It would be great if I could figure out a way to let you all know that there is or isn’t.  I could be an irritating fly that is demanding your attention.  How I communicate with you would be a conundrum though.  Maybe I could fly on the letters of a typing keyboard?

Nah, that wouldn’t work.  You would be so busy trying to swat me that you wouldn’t know that there was a pattern to my stopping and going.   What if you swatted me before I could show you my pattern?  Then there would be a new begging question, “Is there life after death of a fly?”

Please be patient with me.  I am going to stop for now.  I will soon have enough strength to give you a decent article in here.


After The Storm

large Adrift sitting in a small boat in the middle of a calm ocean, I languidly lean over the side of the boat and place one of my hands in the water.  I see something swim by larger than a breadbox and I rapidly draw my hand back.  What was I thinking if I was thinking at all?  My hand and fingers could look like tasty bait for a hungry fish.

This scenario, of course, is all in my mind.  It’s my way of taking myself outdoors.  Reading and writing were my way of escaping the traumatic daily life of my young days in Chicago and I’m drawn to it once again.  There was music as well.

I speak of escape because as a shut-in, I have no other avenue of getting out of the house unless someone takes me.  Multiple Sclerosis is an anchor in many ways keeping me going around in circles and seldom allowing me to go in a straight line to places unknown for fun and adventure.

Picture yourself in the middle of the ocean again, with the sun shining down upon you, the backdrop of the city just beyond the horizon.  At first, you love being on that boat gently rocking and listening to the gentle slap of waves against each other or on the side of the boat.  When it’s time to go, you find that there is a heavy anchor that has kept you in place.  You didn’t notice it because the movement of the boat and the water gave the illusion that you were moving, as indeed you were but you were not travelling.

You notice storm clouds rapidly approaching you and the wind turns from a warm caressing touch to a cool blowing slap as your hair dances in many directions each tangle having no supervision as to which way to head.  It gets darker and rain starts pouring down.  You huddle in the boat trying to make yourself as small a target as possible when you see lightning strikes across the sky that pushed the sun out of the way behind the dark clouds.

You hang on to the sides of the boat as it bobs up and down careening wildly almost dumping you over every few seconds.  If it weren’t for the fear of falling overboard, it might have been fun.  What is the point of this story?

images-4For several weeks I have been on that boat in a storm.  Life is difficult enough for people without the anchor of Multiple Sclerosis weighing them down, but when you have MS, sometimes what seems like a warm and sunny day out actually is a blip in time that precedes the storm that is about to hit.

In the past three years, I’ve had about five or six major surgeries.  Two of them have been this year.  These surgeries have nothing to do with MS but they have a major impact on what MS does to you as a direct consequence of physical stressors in your life.

You go about your life doing the best that you can, just like everyone else despite having a disease and then out of the clear blue, a storm hits.  You can try running for cover but that only keeps you from getting wet.  It doesn’t stop the storm.  You have to wait for the storm to stop.  The storm is not waiting for you to stop hiding.

All these things that happen to all of us, whether we are prepared for it or not, have merit in the lessons they teach us.  They don’t necessarily teach us how to be better prepared for the next storm because you never know under what circumstance the sunny day turns into menacing one.

I believe that the most valuable lesson I take away from weeks like I’ve just experienced is that there is no point in panicking.  There is no point in throwing a pity party that no one will attend, or if someone does show up they won’t hang around for long.  There is also no point in longing for the hour before when you were languidly basking in the sun just as there isn’t any point in trying to look ahead to figure out when the storm will end.  I mean who can figure that out precisely?

You and I both know that there will be good days and bad days.  There will be days when you feel like a prisoner in your own home and days when you’re so happy to be out that if you could hop and skip like the little girl you once were, you would. There will be days when you’re feeling strong and days when you’re weak as a kitten.  There will be days when you feel like you’re moving ahead and building a life for yourself despite all the blips in your life and days when you feel like you’re just going around in circles.

Right now I’m fighting a heaviness inside of me.  It’s a difficult battle that hits me unexpectedly at different points in my day.  I recognize it for what it is and it’s called depression.  Thankfully, I have been on medication for this battle for many years.  I’m not ashamed to admit that I have it.  It’s common to all people with long-term illnesses.  I just chalk it up to yet another symptom to contend with.

In addition, I’ve had another surgery to fix a surgery from my recent past.  I walked around with a bag hanging out of my stomach for two weeks which was removed. Then I experienced pain in my abdomen and could not figure it out.  I struggled with this pain for two weeks before I finally saw my surgeon.  He figured out that I had fluid built up and sent me directly from his office down to get scheduled for a procedure where a bag was placed again to drain all the fluid out of me again.  A short office visit to remove staples turned into an all day affair of yet another surgical procedure.

When you're having an ideal day, week, month keep in mind that the 
unexpected storm is just around the next corner.

No you don't live your life in fear of it, just aware of it.  You
don't fear it because when you're in a storm, you know that 
eventually it will die down and the sun will come out again.  

In regards to being housebound?  There is very little that can be done
about it.  There are always cabs, and other services available but if you're
anything like me, I personally don't like to travel with a crowd of people
where I am dependent on them getting to the bus on time or where I have to
get to the bus on time for them.  I like independence.

If you want to you can, if you don't want to, you won't.  Solve your 
problems, I mean.  It's a matter of attitude and how you want to live your

I'm determined to live mine looking forward to the sun that will come out
after the storm.

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


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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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?



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.