Was It For Real?

 Yesterday I saw a new doctor....my plans were simply to beg him to botox my left hand so I could open it.

 In the waiting room the television was playing some health stuff over and over it came to some announcement about proper posture...I was sitting there trying to get my head to go up so I could see ....it went on about how important it was to have your back straight how important it was to have your head and neck at some neutral position...  I felt as though the television was mocking me but of course I knew that was silly, it can't see you or anything ...it is just a thing.

As soon as the paperwork was filled out my mom and I were brought back into a large bright white room with two big windows ...it was clean and bright.

The doctor man came in and took a thorough history ...and examined me.

We  told him about the things that we were told were psychological by some doctors....he said he thought it was crap...yep he said crap.

I asked him about my eyes...they get stuck dilated, no doctor has really given me any answers for it ...

He said the same thing that is happening to my legs is in my eyes too.

He told me how all my problems are related...how my gut problems are also connected.

He thinks I have an autoimmune problem that caused the seizures the dystonia ...everything.

He said I have neuropathy ...dystonia...epilepsy.....those things just don't all happen separately in a person that I have to have some underlying problem.

At the very least he will give me botox...he is going to do some nerve studies and another EEG and then if the results say what he thinks they will say he has a plan.

He did not say what this plan was, but he did say I can hope for things not to get any worse...some things may get better...but I do have damage that cannot be reversed.

This man really cared , he cared enough to look at the entire me ...not just my brain or my guts or my feet...the entire me.

He said one of the problems with doctors today is the treat separate symptoms instead of the entire patient.

This did not feel real...it felt like a dream ....there is actually something that can be done to help me.

After the appointment my Mom and I got lost finding our way out of the building I nearly convinced myself that it was a dream.

It wasn't though.

It was real.

They called today.

That is that ....what has been going on with me.

My Opinion Of Fracking....

        Dear Friends and Neighbors,

  I am writing to you because there is a matter of great concern that I feel I need to share with you.
  I have lived off the beaten path all my life, surrounded by woods and wildlife, peace and beauty. Our driveway is over a half-mile long and getting out during the winter time can be challenging at times, my parents used to cross county ski out to the road pulling my three siblings and I in a sled, later we got a snowmobile and now we are blessed to have a tractor with a snow blower.  During all seasons I have found the outdoors a great place to pray and meditate. My family and I have gardened on our land and we have foraged the wild edibles God put there already.
   As you can probably tell my faith is very important to me and while I take it very seriously I also know I fall WAY short of the glory of God. I also respect the fact that my convictions may very greatly from yours, I think it is very natural for people to have different opinions. I ask that maybe you will hear my opinion and if you feel the need you can share with me your opinion......
It is very fair for me to hear your opinion.
  The matter that I speak of is fracking....I believe God gave us things on this earth to use, but I also believe God also put us on the earth to care for it, not trash it, and there are some things about fracking that really concern me but before I go into that please let me share with you some things in the Bible as to why I believe we should care for the earth ,
again you may or may not have a different opinion.
   Right in the first chapter of Genesis when God made man , Genesis 1:26  Then God said " Let us make man in our own image, according to our likeness , let them have DOMINION over the fish of the sea, over the birds of the air , over the cattle, over ALL THE EARTH and over every creeping thing that creeps on the earth."
After this in Genesis 1:28 God blessed the man and woman, tells them to be fruitful and multiply to fill the earth , subdue it and to take dominion.
Then in Genesis 2:15 God puts Adam in the garden to tend it.
 These are some examples as to why I believe we are to care for the earth.
     Now on to some things that concern me....Fist of all if we frack we are going to have lots of noise, not just by the fracking but did you know it takes HUNDREDS of truckloads of liquids to the well? Then you have even more truckloads of liquid waste from the well...That is a lot of traffic and fuel being spent right there, also we are bound to need a great deal of road work because of the traffic, but it gets worse.....That liquid waste has about 600 chemicals including benzene, toluene, ethylbenzene and xylene. How are we to take care of these vile chemicals ??  Water treatment plants cannot deal with this...if we dump it in a hole or something what about the animals that get into the stuff? What about the insects....lots of animals end up eating bugs and I think the chemicals could make their way into the food chain. What about when the gas is flared ? What about all those toxic fumes?
   These things alone seem bad enough and if we mess up, if we wreck the water it will be much worse. It seems so very risky to me and not only risky , disruptive and messy.
   Maybe you disagree with me, maybe you think fracking is a way to take dominion over the earth. Did you know in Revelation 11:18 it speaks of Gods judgement , it says about destroying those who destroy the earth.

   Now , I love peace and quiet , I love our well water but I also understand some folks are having hard times....that they need some money and may think that fracking is their chance to get some money....But this money comes at a great cost , things are not so simple.  If our water is wrecked we could buy water to drink but what about water to wash our bodies and dishes in ?  What about watering livestock ? If we wreck our water things will be really bad.

I hope you hear my concern, that is what I am asking.

                                        Sincerely, Jessica Riley    

So I Have Not Said Anything For Awhile....

.....Some days are harder than others but I am doing o.k.

I have been reading and trying to catch up on my letter writing .

I rarely catch up anymore...But I really do appreciate the mail I have received.
 
Thank you.

:)

 I just have not been as speedy.

This is Too Big For Me...

   Yesterday was a good day...I had a Neurology appointment which seemed to go fine. My prescriptions were re-filled and the doctor thought I was on the right path with the plans we had to go to a movement disorder clinic at Johns Hopkins.  That was that ....I did not give it a second thought.
  My Daddy took me around to some stores I got some new books ...met some kind people.
We went home...I ate dinner. I read some, watched some television and went to bed.
  Today when I got up....Mommy had something to tell me...the doctor from Johns Hopkins wanted me to see the guy I had been seeing...the guy who thinks I am too bent up for him to work on my hand, the guy who said "find someone else."....THE POOPYHEAD guy!

 I did not cry but I was sad.

I was hoping to find a compassionate doctor who would hear my voice...one who would try to understand me.

How can there be so much kindness and so much hate...or careless people at the same time?

This feeling is overwhelming.

This feels too big for me.


It is too big for me....but not too big for God.

God has given me so much love...God gave me parents that love me...God has used strangers to show His love for me.

God is bigger than man even if the man has a white coat and fancy papers on his wall.

Mommy found a man in Morgantown who does botox  and treats Dystonia.
Mommy called them...they called back....they gave me an appointment.

There are many things I can do with 2 hands that I cannot manage with 1.

 Getting dressed would be so much easier....and a lot of other things.

I know I am really bent up...even if my leg would be straight I think my back and neck would pull me over.

Basically I guess I am asking for a hand.

The use of my hand.

Maybe I will not get what I want...

But I will get what I need.

God will take care of me.

That is what has been happening.

A lot of people have been asking me  "Whats up?"

Now you know. 

It Happens To Many Of Us...

  Many people in their lifetime are going face a disability.... Maybe a bad accident , maybe you will get old and your body will wear out.

  Have you noticed how many people in nursing homes use wheelchairs or walkers?

 Some people will be active and fit until they die...but it seems to me quite often people get old or injured...

 Why then do I attract so much attention when I go out.....because I am not a old lady?

Some attention I like ...some I don't .

To the people who give me the kind I do not like....I have a message for them, " It could happen to you"

When I was young I knew some kids who said very mean things about a lady that had seizures....It really upset  me ...I told them it could happen to them.  They were like " Yeah Right" and made faces at me .

 It happened to me...not them.

 You never know, It could happen to you.

You will still be a person....you will still have likes and dislikes , thoughts and feelings.

When you see a person who is in a wheelchair or uses a walker or whatever they are doing differently than you ....you should say hello ....maybe you won't understand the person too well when they say hi to you....maybe this will make you really uncomfortable. 

The fact that humans have frail and mortal bodies is an uncomfortable subject.

 You should just try to put yourself in that persons shoes....treat them as you would want to be treated if it was you.

That is what I have to say about that.

Love and Kindness Has Been Overflowing...

  I am very overwhelmed by all the kindness I have been shown the last few days and my birthday.

From the kind words to heart-felt messages on Facebook....cards , letters and amazing surprises I received in the mail.

One of the things I found was a handmade blanket with I love you embroidered in the corner , it came from a friend of  mine...I met her and her husband at a hotel in Florida about six years ago, they are from Montana. We have written ever since.

I wrapped it around me and it was like a hug.

I also received a gift from someone I have never met....I do not think they knew it was my birthday, It was something I wanted very much ...I had only just discovered them on the internet, I was and still am overwhelmed.

It was a doll , I shall treasure her forever.

And there were more surprises.

I received ...so much kindness.

I appreciate it all and thank all of you.

There has just been so much love surrounding me, I actually am not sure how to respond...
If I could I would compose a great symphony or some sort of marvelous dance.

God is love and He has showed me great love through my friends.

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.