Sometimes Things Are Not Easy

  Sometimes things are rather difficult.

Had some really rough days....I was sick with something and then had a seizure like event that I was given rescue medicine for.

That really is hard on a body.

It is hard on a persons mind.

When I get sick everything seems so much harder.....like getting up in the wheelchair....like putting on pants.

Those things really should not be hard.

Chewing food should not be hard.

I THINK those things should not be hard.

But things are what they are.

I had a Neurology appointment a couple of days ago...my Mom has been filming my seizure things...we showed the doctor...he said they look like simple partial complex seizures.

Simple and Complex....at the same time?   I find that confusing.

He wants me on Keppra.

He wants me to see a ped. Neurologist  at Johns Hopkins.

He said my case is too big for him.

He said what I have is hard ,very very hard but I must do it...I must.

I think the Neurologist was from a different country...this was his way of telling me not to give up.

Before I went to the appointment I wrote a bunch of stuff  down that I wanted to tell the doctor about.. some things that have been going on with my body that I find really upsetting...things I do not wish to talk about, I ended the note with "Please Help Me. Sincerely, Jessica".

The Neurologists assistant read the note...he read it all then he looked me in the eyes and said o.k.

This made me feel better...more hopeful.

The note seem sad...sort of pitiful, but I had to tell them about that stuff.

When we were home my Dad called the Dystonia doctor  about my test results.

The two genes or mutations or whatever the things are that he tested for were negative...it does not mean much...there are 26 known genes that cause Dystonia and it is thought there many more not discovered. The Dystonia doctor had no plan for me.  

My Dad asked him about botoxing my hand...the left one is stuck shut.

That Dr. did not see how that would do me any good....he thinks I am too bent up already.

My Dad told him maybe it would help me push my wheelchair better.

I can think of a lot of things I could do better with more use of that hand...maybe I could even use the sewing machine again.

If  I get to try botox ...it will not be from that Dr.

Good....he is rather rude.

I don't have to see that guy again.

When I was in the waiting room at the Neurologists office I met a dude who told me a story about how when he was in his 20s he had to see a councilor but the councilor mad him angry so he yelled at the councilor and frightened him so the police came ....but everything turned out o.k. because the police man got him a new councilor...this may not sound funny at all but they way the story was told it was very funny.

In a way this story reminds me a bit of my own story...with the Dystonia doctor...at first he seemed decent but on the phone he was a very different man...refused to believe some of the side effects I had were from the drugs he prescribed even when there was a warning about it right on the bottle. He did not believe my Dad when he told him about my hallucinating.....I feel like he thought it was some sort of joke.

I did not have to yell at him....I am not sure I could, if I talk much my voice gets weak...but I called him a giant poopyhead in my mind ....I called him that a lot.

I don't think this is a good practice, calling people poopyheads...but I do sometimes, in my mind.

But just like the dudes story ...I don't have to see that guy again.

I am very glad the police are not in my story.



Things are not that easy.....things get really hard.

There is a reason for all of this... and I know God is bigger that all the white coated men.

Sometimes I feel like everything I must do is very hard...but that is exaggerating .

If there was no purpose...If all I had was life on earth and then nothing....If man ruled the earth...If no one heard my prayers....If there was no God.....That would truly make everything hard.

I would be a hopeless case.

We ALL would be a hopeless case because...we all are perishing.