The Meaning behind the new blog title.....

I AM A JERK..........Now I know what you are thinking: no you aren't, don't say that about yourself, why do you think that.  Well it's not what I think, it's what I do.  I jerk.  I jerk when I relax, I jerk when I watch TV,  I jerk when I am in bed, I have even been known to jerk while in restaurants and throw my food across the table.  I AM A JERK.  

Believe me this is not something I strive to be, it is just something that happened.  One day, well actually one night, I started to jerk.  Nothing bad, a little twitch in my arm now and then.  Nothing I couldn't deal with.  Then it began to progress.  A larger twitch, more twitching each night then one night the twitches became full out jerks! You know the type you get when you first fall asleep and startle and wake yourself up?  That's what I was doing but I wasn't falling asleep, I was fully awake.  Over time the jerks went from every so often at night to several times a week, eventually they progressed to every night, then from every night into day time also and then to where I am now.  Any time I relax I jerk.  

                                            Here let me give you a little idea of my jerking.

 

So jerking has kind of become second nature in this house.  Wil has learned to live with it, even sleep through it.  He has become quite the jokester about it and now refers to me as his "Jerk".  So I figured if this is a blog about my life with autonomic dysfunction well I might as well call it as I see it.  I am a jerk!  Wil's jerk to be exact and that is just fine with me.  Well maybe not having to deal with the actual jerking part but being called a jerk is okay. 

So why do I jerk?  Well it is called myoclonus and I am just lucky enough to have it as part of my autonomic nervous system disorder.  Can they fix it?  No.  Can they treat it?  Maybe.  Do I want to take the kind of medications it takes to treat it?  Probably not.  The lead medications used to treat myoclonus are Clonazepam which causes loss of coordination and fatigue and has to be given at a fairly high doseage or the other choice is barbiturates which can treat it, but once again, you probably don't want to deal with the numerous side effects associated with these meds.  Basically my choices are I can live with the jerking or take medications for it that cause fatigue, dizziness, loss of coordination, and would cause a tranquilizing effect to where I would live my life in more of a fog than I already do.  Well the last time I checked I am already suffering from dizziness, lack of coordination, and chronic fatigue from the Dysautonomia so taking medications that would just add to these symptoms seems a little crazy to me. If there is one thing I have found over the last few years of living with trials of different medications it is that sometimes the cure is worse than the cause so I think for now I will just continue to be a jerk. 

So there you have it.  My story on why I am and will continue to be a jerk.  I guess the bright side is I actually have an excuse for being one!

If you would like more information on Dysautonomia or Myoclonus you can check out the following sites:

Dysautonomia:  http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm

Myoclonus:  http://www.ninds.nih.gov/disorders/myoclonus/detail_myoclonus.htm

HELLO......Is there anybody out there????

Yep, that's me.  I love to blog.  I love to write.  I love to share stories with people.  Unfortunately I can't seem to find anyone to follow this blog.  This is something I am not use to.  I have had several blogs with hundreds of followers but I am just not sure what to tag this blog under.  It's about love, about a family, about illness, about surviving, about dreams and making them come true.  It is about a lifetime of things, good things, bad things, happy things, sad things.  It's about life and feelings.  It's just a story like so many other stories out there but it is mine and I would love to share it with you...whoever you are.  But I need to know that you are there.  Is there anybody out there?  I would love to get past that first hurdle of my first comment on this blog.   So if you are reading this please let me know.  Ask me a question, anything you would like to know.  Ask about Wil, about our family, about myself, about our crazy obsession with Porsche's, ask about our two crazy Great Danes.  Here's a little info on myself and our family that maybe will strike up a conversation, or another topic you would like to see me blog about.  So here goes the top things that maybe you can relate to about me.

 1.) I am a redhead...in fact my son is also, my daughter is, my daughter-in-law is and all three of my granddaughters are.  So basically Wil and I are single-handedly repopulating the world with redheads.  Oh and out of all of us none of us have the exact same tone of red in our hair.  Amazing!

  

2.) I am a grandmother!!!! My life's greatest accomplishment!

  

3.) I am Italian.  My family came from Tuscany, Lucca to be exact.  I am the forth generation to live in the United States since my family immigrated.

  

4.) I met Wil when I was 15.  I married him when I was 17 (No I wasn't pregnant!! Just very much in love.) I have been married to him for 31 years next week!

  

5.) I have two Great Danes and am absolutely addicted to them!  I will never have any other type of dog!

6.) I love speed, fast cars and racing.  Before I became ill my favorite way to reduce stress was to drive....fast!!!! 

 

7.) I love to write...hence this blog.   I am working on several books, who knows maybe some day I will be famous!!! LOL

  

8.) My daughter has Asperger's Syndrome.  This is our greatest challenge next to my illness.

  

9.) I am disabled with an Autonomic Nervous System disorder that is slowly shutting down a lot of my major body functions.  My prognosis is guarded, no one knows how much worse this may become.

 

10.) I have the most awesome husband in the world who is my rock, my strength, my life and has now had to become my caretaker and to whom this blog is dedicated.

11.)  If I had one dream come true it would be to be able to repay Wil for his strength, love and being my rock during these difficult times. 

 

12.) I am the type of person who always puts others before myself.  Some people may see this as a weakness.  I see it as my strength! 

13.)  I am completely confused as to whether or not there is a higher power out there.  Thought I had this figured out but then Wil lost his faith and now I struggle daily with mine.

14.)  I am 48 years old, I have always lived in Northern California, I would love to live somewhere else someday but not sure where or if that will ever happen.  

 15.) If I was healthy again the first thing I would do is to take my three granddaughters to the ocean and walk on the beach for hours with them.

So there it is.  A little about me.  I hope you find something there that interests you because I will probably at one time or another talk about each one of these subjects on this blog.  I hope you will join me and please if you enjoy my blog let me know and share me with your friends.  It really would mean a lot to me!