I Smile

Something I haven’t talked about is what’s life like these days.  I’m not talking about the medical stuff here, but life!  Day-to-day life which is what the blog is all about.  I’ve been so concentrated on the pain issue that I haven’t talked about anything else.

I dare anyone to blame me for this.

Here is a weird thing.  I decided to buy a 2017 Fiat 500.  Why?  I seldom drive anywhere.  I’m heavily medicated most of the time.  I can’t see worth anything especially at night.  I don’t have deep pockets of money to spend anywhere.  You can’t haul medical equipment in the car.  The trunk is too small.  You can’t even haul passengers in the car unless they are munchkins with teeny tiny legs.  I can’t lift my right leg to get into the car.  Surprisingly, the front seat of the Fiat is higher than your average car.  So what I have do is this.  I found a leg raiser thing-a-ma-jig at a medical supply store.  It looks like a loop on a long wired handle.  You place your foot in it and pull on it with your arms.  It raises your foot up, almost high enough to the level of the Fiat.  It works well enough.

My life is spent running from one Doctor’s office to another.  It’s the highlight of my life.  I get to get dressed in something better than I normally do.  I put on a wig since my hair is shot, and some makeup.  I look okay for the day.  Lastly, I put on my smile that everyone seems to love.  As long as I’m smiling, the world thinks everything is okay with me.

I have cleaners come in every two weeks.  Will hope to move them up to every week when things get better financially.  I’m in the market for a new wheelchair that medicare approves of.    I spend a lot of time researching this.  Have you seen what’s out there?  Unbelievable!!!  One costs as high as $14,000.  Which is, of course, the one I fell in love with.  Anyone care to make a donation?

My Take On This

 All is well with the world around me as long as when they see me, I am smiling.  There is no such thing as showing a face of pain.  If you do, they compare their pain to yours!  At first, early in the disease, I tried to educate people.  I no longer have the desire to do so on a daily basis.  Hence, the reason for the book.

I’ve reached a point in my Multiple Sclerosis where things are sliding downwards and fast.  I fought wheelchairs, but now I spend my nights prowling through websites and watching videos on all that is out there, dying to get my hands on one that works.  

I watch my life changing almost daily and dramatically.  There’s nothing I can do about it.  There is only one thing to do.

I smile.  It makes the people around me feel better and believe it or not, it eventually makes me feel better.



On Again, Off Again

May you find peace, love, strength, laughter, kindness, understanding and all other positive things one could wish for in the new year.

You may have noticed that I did not include health or wealth above.  I find that wealth is a matter of subjective ideology.  I do wish you wealth, but a special wealth that is individual and not necessarily monetary.

I also wish you health.  Once again, health is something we all strive for daily.  It deserves it’s own little paragraph because for us, it is so important.

I’ve been neglecting you and for that, I apologize.  No excuse is good enough.  I’m sort of an on again off again sort of person, but I hope that when I’m on again, I give you value, interest, and laughter as well as something to think about, particularly my input on our favorite subject, Multiple Sclerosis.  Actually, there is one wee little bit of an excuse.

I’ve been working on my book and I hope to have it done this month.  I was trying to have it finished in December, but that went nowhere.  Now I’m shooting for January.  I am going to publish part of it as an e-book and then I will publish it in hardcover.

So how the heck have you been?  Answer please in the comments below.  I would dearly love to hear how you are doing.

Me?  Thanks for asking.  I have a long list of problems that are plaguing me right now.  I am seriously into a relapse.  I think the cumulative effect of six surgeries this past year has grouped together and decided to attack me.  It was brutal enough recovering from each surgery but now it’s a gang war against me.  I hate gangs.  I’m not fond of groups either.

Ok, I just heard a loud gasp coming from somewhere.  Who was it?  Let’s not get in a tiff about it.

There are support groups for just about anything and everything out there.  I know that they don’t support me.  Probably because I’m not open to them in the first place.  I have just cause for feeling the way I do.

I grew up in an orphanage and when there was a major discord in my cottage of 38 girls, there would be a meeting set up to discuss the problem.  Or if things weren’t working out as well as the head nun wanted to run things, there would be a meeting as well.  There were a lot of meetings.

In those meetings and at a very young age of thirteen, I could make out that these meetings were just a way for the nun to talk to a group of us, time management, to get us to see things her way.  Here we were a group of ten or fifteen of us, considered older kids in the cottage, and we would sit around in a semicircle on the floor.  You would think that the gang of us against one nun, would once in a while sway things our way.  But no, the nun would stand above us girls on the floor and pace around us and intimidate us into promising this that and the other.

What about support groups today?  I lost a child to SIDS (Sudden Infant Death Syndrome, otherwise known as Crib Death, years ago.  I took the advice of my family doctor and went to a support group.  Once again, there we were in chairs while the psychologist tried to hold us together.  She/he would pry into our experiences and have us all crying.  What was the point of that?

I didn’t want to hear everyone’s story.  I didn’t want everyone to hear my story.  How could being in a group help one person let alone a group of us?  I left after three visits.  I tried again years later for Multiple Sclerosis.  It was the same thing all over again.  What was the point?  They certainly couldn’t heal us.  Sure, some people loved rehashing things over and over again.  They seemed to thrive on that.  In fact, they wallowed in it.  I, on the other hand, hated it.

I did not want to hear other’s stories.  I did not want to hear about another bizarre symptom that someone experienced.  I felt that if I listened to these stories enough times, I might start imagining that it was happening to me as well.  I also felt that if I heard another symptom of MS and could relate to that person or story, that I would land up running out of the room screaming.  No, I was better to wallow in it on my own because in wallowing, eventually I would get tired of it.  Once I grew tired of it, I would want to pull myself out of my pity party.  That is a positive way to get through it.  My inner core personality is a positive and reflective one.

The way I see things is that you have to help yourself.  Sure it’s good to find people like you with similar stories, but not to have a pity party.  A group would be better served by going out.  Go to a movie or go bowling.  Anything at all that would make us feel more whole and for a while, feel as though we weren’t alone.

I already knew that I was just a tiny blip in the scheme of things but in my world, I was a huge blip that mattered to me.  Luckily, I have the ability to stand outside of myself, take a look at me, and then go about getting the necessary things needed to hold me up.  Sometimes it worked and sometimes it didn’t, but for me; that was no one’s business but my own.


Sheesh, I sound so negative here.  I’m sorry if I do but I say it like it is.  I’m suffering right now and I’m afraid I will need another surgery, so I’m foaming at the mouth spitting at everyone.  Didn’t mean for you to get spittle all over you.

There is no positive thing I can say right now.  I look over the blog and I can sense a person who is hurting.  I don’t know what to say to her right now.  If you do, go ahead and support her.

P.S.  Don’t feel like proofing this right now.  Going to bed.  Please forgive any mistakes.