Oh The Humanity!!!

 This month has been filled with much craziness....

  People not getting a long , people just being human .

But there is a kindness by Gods grace which nearly every single day I am touched by, whether it be a card, an unexpected gift in the mail or carolers singing in my room !!

 I am filled with such joy and sort of in awe of this , there IS kindness in this world.....

......In all honesty I have not been doing the greatest seizures really confuse me , my PEG tube really has been a MESS,  and the details of that is rather yucky so I will say no more about it here.

New Years Eve I am supposed to get surgery , a VNS which is a brain pace maker of sorts to hopefully help with the seizures.  I am hopeful.

For those of you that don't know me on facebook my new chair came , a couple of things which my therapist did indeed  order did not show up with it....... so with a pillow and a chest strap the delivery man  had laying in his truck we are making it work and it already has helped me very much, the old chair gave me much pain.

So .....I did not finish all the books I wanted to this year there was no way I could, you need a clear mind for that and I did not write on here as much as I wanted, you need to think to do that too, I did very few drawings ,  but I am alive and happy I am.

It really is not about the goals I set for myself , life I believe is so much deeper than that!

Thank you my friends for all your kindness and prayers .....Peace to you all.

Best Day This Year....

 Today thanks to a lot of botox my left hand was opened!
I am so happy.

 The doctor first tried my left leg but the EMG sort of probe thing was not picking up what it was supposed to...I could not feel any of it, so he moved on to my left arm.

Botox is not really so easy as it sounds for my case...the doctor used electric jolts with a probe stuck in my arm to figure out where to give me the stuff.

Yes .....you can imagine what a bloody mess that made, of course he wore gloves but some blood had run down his arm.

But I was not going to cry .....my fingers came open and then I could close them and open then again!

I was so excited I held up my hand in the air and said " high five", the doctor was taken slightly off guard but a grin spread  across his face and he gave me five.

I could not stop smiling .

I felt as though I ought to be giving high fives to everyone on the planet despite the fact I am supposed to be careful about germs right now.

A small victory ....maybe to some but to me it is MASSIVE!

But by the time I came home I was exhausted and fell asleep.

When I woke up I was greeted by some flowers sent by friends and a big box from another really good friend.....it was a great stuffed Moomin !!! 

They did not know I was going to be going through all of those pokes today.

God knew it though.

So my arm......looks like someone used it for a pincushion but hey IT WORKS !!!!

Sure it is not so easy , it is stiff ,sore , and my skin feels too tight on my joints but my hand is worlds away from where it was.

I am so thankful.

 

And I Don't Know How To Respond To That

 My Dad took the day off of work.....because today I was to see a Neurosurgeon.

Daddy and Mommy both came they both had questions they both had to work together, we were at a hospital I don't like. ( THEY DO NOT LIKE IT EITHER!!!)

It holds many bad memories for me.

I actually felt a little sick.

The lady who brought us back to a exam room took a brief medical history of me looks at me and asked if I ever did walk ....

I say yes, It has been a year since I could but I did.

She looks at my Mom ....who confirms what I said.

Why would I lie???

Some of these people at this hospital think I cannot do things I do or that I did not do the things I one time did, that I never could draw that I color or because I was Home schooled they told me my mother probably knew I could not do real school.

Anyway a wave of emotion hit me when the surgeon looked at my parents and told them I could not have the surgery , I  don't WANT to be cut open.........I just wanted to have more hope.

The issue was with records from that hospital the fact that the surgeon only wants to work with the Neurology department from that hospital, the dude had the records!!!! we drove there for nothing...Daddy lost a days pay.

My parents were hit with more than just a wave of emotion from it all they are desperate to find someone to help me but .......it seems like things are not working out.

There is so much more than just seizures happening , doctors are afraid to touch me, I am not a quick fix.

With that demyeilnating polyneuropothy disease maybe a surgery right now would be bad.

I don't know.

God does.

The day was beautiful.

The sunset was amazing.

It is not all bad .....there is still good.

And I don't know how to respond to all of this.

Why I Took A Break From Blogging

.....Because this year has been one of the roughest ones I have ever known.
Because I ended up in the ICU nearly every month.

Because with each hospital stay I felt like a small piece of myself has slipped away never to return until I shed my earthly skin.

Because my thoughts got scrambled with drugs and my own daydreams were not adventures but just watching light slowly move across the room until the sun set.

I thought bad things.....

.........I thought bad things about a doctor that told me something they did would not hurt at all that I would have a happy little sleep and I woke up in the worst pain I have ever felt ,I was given morphine  and some other drug that mixed with all the other durgs in me gave me a bad trip.

The bad thoughts led to a bad action in my own room at home...2 days ago because I still hurt I flipped the bird at my stomach tube that had a very bad spasm and called the man a bad name.... a name that means you haven't got a Daddy ......well it wasn't that mans fault if he never had a Daddy, I also called him a lair, a dirty snake, and a poopy head.

I never flipped the bird before ever .

No birds did any flips.

My stomach did not stop hurting.

My days have been rough and I don't want to say bad things or be bad....I ask God to make me behave like a Christian....

.....I do know though that you can get angry and not sin because Jesus did, but I am not Jesus and I am a sinner.

I don't want to write a blog full of curses and sin, nor do I wish to make things seem better than they are.

I don't want a pity party either......

But just so you know Gastroparesis and Dystonia and PEG tubes all in one really is awful ....many days everything comes out.....the tube, I smell it..... it grosses ME out it is from my own body.

Without it I would not get the medicine for the seizures or anything.

So....tomorrow I see a Neurosurgeon.

It is about getting a pacemaker type thing to control the seizures called VNS.

My parents and I already met with  a company rep about it.

You can pray for me if you want.....
....thanks for all the love and prayers and encouragement as always friends.

I will try to blog when I can.
 

I Don't Know What To Tell You

So much has happened this summer......mostly scary things like hospitals and tube feeding....and things that make me say OUCH like a nasty spinal tap. ( o.k. scream and cry to be honest )

There are awesome nurses and scary ones.

Isolation gowns make people look like puffy yellow ghosts.

There are good medicines and ones that will haunt you....

Frightening conversations about TPN,  for those of you who do not know this is nutrition by central line which I refused. ( too risky for infection in my opinion since I often get infections of various sorts, my blood counts are often low and I don't have any answers about that. )

My tube feeding sometimes works other days I fail ....I mean it all comes out.

My stomach does not always work.

Frustrating.

But I am here and yesterday was a great day and for the second or third time this year I went shopping.

Maybe I will go into more medical  details sometime but not right now....maybe never!

My home is sweeter than ever.

What Can I Do?

So I have had extreme difficulty with the g-tube , I had a lot of issues before it was in now it hurts worse.

If you have a stomach spasm when you have no tube it is bad enough but now when that happens I can barely stand it.

Also......my stomach prefers to not empty.....it gets so full that I am worried Mommy won't be able to get the drugs to go down.


People thought I was just odd that I never ever wanted lunch,that I did not WANT snacks ....breakfast normally would consist of an apple in the past and nothing until dinner. I just felt so full. Last year I noticed it got a lot worse ...I wretched a lot .

I would tell people my stomach was still full from everything I had eaten before ....and they told me it was impossible,  that I just did not want to eat.

well now I have at times ....explosive proof .

Tube feeding, painful and messy and gross.

Also I am nowhere near where they wanted me to be for calorie intake, less than a fifth usually.

Then there are times when I do a bit better , I think I never ever will fit as much stuff in there as they want .....but sometimes my stomach empties more often and have less pain and mess.

I don't see any easy answer for  this......Not sure how far I am willing to go.

Part of me wants the tube out...that would mean death, I think no matter where you moved the thing if you have as many spasms as me it is going to hurt.

I guess I will just have to deal with the pain, I hate pain meds with anti-seizure drugs.

I really do not like it at all, I mean sometimes, like at the hospital it is a welcome relief ...but not everyday....

I feel like my brain is slower than normal.....I am angry it has taken me a week to read ONE American Girl book.

I don't want it to go slower.....NO.

 I will be seeing the Neurologist this week to see about VNS.

I will also be measured this week hopefully ,to get a better wheelchair that supports me properly.

AND....Saturday HOPEFULLY I can keep away from seizures and be at the art show at the Moonshadow Cafe  ,  I will go home before I get too exhausted and Daddy will be in charge of the booth after that.

So right now thats how things are going.

Knock Knock... Protective Services

I am here to help you he said....and he was.

Last Friday I was in the hospital again and things did not go the best....Social Services was called
......Well anyway , 

things are o.k. .....the fellow showed up during my morning routine today and when my Mom was done feeding me he sat in my room and talked to me,

To make sure I was o.k.

He was very very kind and I have no fear.

He wants to help my family and me as  much as he can.

Thanks again for praying for me everyone :)


Sometimes I am unable to speak for myself and even though one of my parents has a paper that says they are to speak for me, some one a long the way disagreed .....stuff happens.

Anyway ....I am o.k.

And yesterday I was able to draw a picture for nurse Lola who does my IVIG.....her request a dragonfly on a daisy. ( but she might read this so I am not going to put it on here)

I feel like seizures are beating me up.

Because......that is what they do! 

So I  still feel beat....tired and worn.

But I have peace.

Oh Rileys...Oh They Have Come Again!

The Riley reunion has been going on and it has been good to see everyone!

I really miss the ones that did not come though.

Particularly Ashley.....I love you !

And someday I would like to meet you Tom.

This year I can't do as much as I want, but I will do as much as I can.

Anyway.......

When I came home I found out I had an appointment with a surgeon to see about an issue I have with my tube....the doctor was not comfortable working on it yesterday.

That will be tomorrow, I am glad though because it is driving me crazy and it should not be a big deal to fix.
It NEEDS to be fixed.
stupid granulated tissue junk. ( If you wanted to know).

I am thankful I have a family that cares so much about me :)

p.s. I borrowed the title from a song O'Reilly  OHHH  O'Reilly  but since I changed it, copyrights should not matter.

Adaptation

 Both Physical Therapy and Occupational Therapy are amazed with me.....how I figured things out on my own .

I am determined for as long as I can to use my right side, the good side to the best  I possibly can.

I WANT to get myself dressed ....If it takes me some time ..oh well, I am going to do it until I cannot.

I WANT to wash myself....yes I am exhausted after getting myself  into the shower and washing my hair one handed.

This actually is exercise ya know.

O.k. so some days I can't get pants on my twisted up leg...I go with a dress or skirt, thats my style anyway.

Button up shirts are mostly used as jackets now.

Drawers are really hard to open and close , I keep most of my everyday clothes in a plastic box.

Who cares if it looks weird?

So when I could no longer sit on a shower chair because I cannot sit unassisted I invented my own with pool noodles....it is not exactly a chair but a sort of body support thing , it allows me to wash my hair.

I drew up a plan and mommy helped me make it.


Lots of people get injured and sick and maybe you can't figure out something ...sometimes your Mom will need to put on your shoes for you.  ( or some body out there )

But its o.k.

It is also important to know what you cannot do ....to the person who thought I could tube feed myself all with one hand, I would like to see them try that!!!

I adapt as much as I can but I also am extremely aware of what I need help with.

On to other things ....
....IVIG  was so much easier!!!

O.k. I still feel a bit off  however I think all tube feeding greatly increased my hydration and made everything much better.

Now on to something else.....o.k. so I have had this heart/ oxygen monitor thing ever since I  came back from the hospital .....both things drop ridiculously low at night .

The neurologist thinks maybe seizures??? 

I guess I have a lot to tell the doctor when I see him next time.

Personally I believe it has something to do with my nerves...on days when my pupils stay dilated longer the worse this seems to be.

Who knows????

But hey I am alive today and rejoicing that I am alive.

Life will change for many of us...but it just means it is different not necessarily less good, however yes a great deal of emotions will be there but we have to adjust.....unless you choose not too of course, and that is up to you.  I don't believe bitterness really cured anyone, or anger either.....thats all I have to say about that right now.

Daddy I Want Too But I Don't Know If I Can....

Last Sunday Daddy took me to church at the local Lutheran church, they are wheelchair accessible neither Daddy or I thought I should be carried with my raw sore tube,  so this worked out well and we followed our neighbor and he sat with us.

I have not been to church in a looooong time.

Anyway....it came time for communion.

Daddy asked me if  I wanted to do it and of course I did but I was not sure if I actually could.

Last time I did the bread just sort of had to set in my mouth till it went down ...and the wine ...I coughed.

At the Lutheran church you go in the front and they give it to you there...at our chruch it is passed out at your seat.

I told Daddy I was afraid I would cough up communion.

Daddy came up with a plan...If they give you too much bread I will eat the rest, If you can't get down all the wine I will take the rest. Daddy said it would be o.k. and God would understand.

Daddy had to take some of the bread ....but ever so slowly with many many swallows down went the wine.

I was praying and praying.

Thanks be to God.

And it was fine.

To some people it probably seemed odd Daddy had to take some of my bread....to others they probably wonder why it took me so long to swallow the wine, but that does not really matter , not really.

God understands.....and that is that.

A Panda Named Spud

 I was given a stuffed panda which I named Spud when I was in the hospital.

I nearly squeezed his guts out after surgery because of pain.....yesterday I realized his arm was hanging by a thread.

Poor Spud ...he smells of some strange chemical like surgery smell... ether ???

He helped me out a great deal and nearly lost his arm in the process.

Daddy said whoa he looks rough! 

Poor Spud....but he is mended now.

Yesterday I had a doctors appointment , I will resume IVIG Monday.... The doctor remains cautiously optimistic.

There was also the discussion of brain surgery and VNS.

I said VNS would be o.k. but NO to removing part of my brain .

But....he upped the onfi and we will see how  I do until next month.

So that is that.

We will see how things go.

And Yet Another New Normal

 So on June 1st I had really bad seizures ...ended up needing bagged but started breathing on my own.

The local hospitals ICU was full so they sent me to another hospital.

My memories are a bit hazy....there are a few things I do remember though, but I think I will write about that another time.

I had multiple seizures.

I ended up with a feeding tube which with all honesty I knew I would probably end up getting, since October I started having a really hard time chewing and swallowing followed but I thought I was managing everything.

I would squish all my food with a fork until it was mush and mix oil in it which is always one the table because my family eats lots of salad.

I could not eat salads for months and months.

I only ate mushy or mushable stuff.

I recently found myself coughing and gagging when I tried to drink.

I was not managing that....I just thought I was.

I failed the swallowing test.

I thought I would actually.

I CAN swallow 1/4 a teaspoon of honey consistency of stuff but it takes me so long and so much work that I burn more calories than I take in.  You can't sustain yourself that way.


So now I have a PEG tube.....and it was about the worse surgery pain I ever had.

Speech therapy came today and said I will probably need the tube feeding for the rest of my life....but the lady that did the swallowing test told me that also.

I do not like the PEG tube....it still hurts actually.

I am thankful for it....and that I am back on my drugs that don't come in i.v. form...I went without them for a week.

I am thankful I am home.

I am also upset with the fact that every time now that I have really bad seizures I seem to lose something....or something in my body won't work right anymore.

I have not really talked about that because I just don't want too.

I don't want people to know.

Probably way too much info anyway.

I am thankful for the many visits I received, I am thankful for all the love and prayers.

I am still here and adjusting.

More About IVIG

The actual infusion is not bad....it does not burn or anything.

I am very small so I am about half of the usual adult dose.

It does make you feel pretty rough though....fevers and general stomach sickness.

Hopefully I am over the worse and the good is yet to come.

Hope Hope Hope Hope

Been falling asleep a lot ....could be the seizure drugs though or just a combination of it all.

Sleep is good though.

I had a really weird dream.  I was on a sailboat and I was a pirate princess and Kelsey was on the boat too.  We were both pirates but we were not stealing stuff we had a note from Daddy written on yellow legal paper that said something like this:

  Dear Jessie and Kelsey,

Please come get me I am at the green circle island ( See map...there was a map stuck to it with a paper clip it was a green circle drawn in crayon with a red arrow pointing to it with a stick man that had "Daddy" written on it ) ,  I am trying to catch you a monkey.

                                                                            love, Daddy  XO

The only problem was there were 40 green circle islands and we never found him or our monkey :(

Bummer.

Anyway this dream made me laugh it is super goofy but I needed it ....:)

Wednesday I Start IVIG

  IVIG is a load of antibodies from over a thousand different healthy donors ....OVER a THOUSAND.

 So literally when I say a thousand thank yous...It will mean a thousand thank yous.

Wednesday ....All of that will be inside of me.

Whoa Dude.

seriously.

EMG Results And A Diagnosis

  So today I had an EMG done.....was not painful at all they did not use needles some sort of conductor thing and metal probe things. ( Well not painful for me.)

 So my left side is pretty bad , the nerve conductors are like blocked or something.

I sort of figured that.

Anyway I now am diagnosed with CIDP  Chronic Inflammatory Demyelinating Polyneuropathy.

It is an autoimmune disorder, my body has decided to attack itself ...to attack the myelin sheathes around my nerve fibers.

The destruction or demyelination of the nerve leads to an impaired ability of the nerves to communicate and function.

That is all I am going to say about that right now.  It is bad.

Also the EEG I recently had showed a seizure from the left temporal lobe.

The Dystonia is due to the CIPD.

Now I am hopefully going to be getting IVIG...to stop the progression.

We don't know how much or if it is actually going to make me better but if it keeps me the same that is better than worse...I have nothing to loose.


Thanks for your thoughts and prayers.

When I Really Feel Down...

 It seems like something amazing happens that cheers me up....
Recently things have been rather rough and on a very hard day I got this in the mail..

 It was a good reminder , something I needed to hear that day and also it was a wonderful reminder of how much this friend cares for me and prays for me.

I have been having a rough time getting myself  to get my work done....you may be wondering what work?

My Art for The People project, some of you know about it and some of you do not.
I make lots of  half page size drawings and give them to people ...mostly I hope it cheers them up.

When you go to see doctors as much as I do you will see sad people....not just at the doctors you see them everywhere.

Sometimes I am one of those people...but I don't want to be... I want to make a difference in the world I want to cheer them up like others have cheered me up.

I let my stack of drawings get rather low .

I feel like I was not doing my job.

So...maybe I can't make 15 a day ...some days I can't make any ...but some days I could of made 2 but I didn't .

I intend to do better...one could make a difference and if I am supposed to do it I better do it.

I pray for the people that get my drawings.  If it cheers some one up then I think I have done my job.

Jobs don't always make you money....sometimes you are just supposed to do something because God wants you to, and if you do it I believe you will have peace in you soul.

And Now Onfi....

 So now I started a drug called onfi.
I have hope that this will help. ( Cannot tell yet)

Since the last really bad seizure I have not been myself some things really are just difficult.

The past 2 days I had some sort of stomach bug...feeling much better today!

Yesterday evening a movie made me have a seizure but it stopped after 5min .

I am o.k. The thing flashed a lot. A good nights sleep helped.

Thursday was a very long day for me  had an eeg.

People were incredibly kind and friendly at the doctors office and both myself and my Mommy feel as though this place is overflowing with hope.

No one gave me any mean looks.

People were not fearful of me.

The letters, prayers, kind words,  and friendship I have received in the past month or so has meant so much to me.

Peace and love to all of you my friends.

Why Are You Crying In Your Drawing?

  I drew this last week....I was asked if God heals my heart and soul than why was I crying in the drawing?

I was crying because of my physical body...how it is.

Bodies fail you...they do things you cannot control, or maybe you want your body to do something and it won't.

Death comes.

I am thankful in what comes after.

I am thankful that one day I will have a new body.

Some of you are going to not like this post very much...your going to think I am giving up hope that I would be healed. A small group of you may even say amongst yourselves that I do not believe enough to be healed....some of you may even say this to my face.
 It has happened before....You can say what you want to.

I was in the ICU last weekend, not Easter weekend the one before...Bad seizure.

I later was asked what I would like for a funeral....

My Body was and probably still is somewhat... having a hard go of it.

I don't know when I am going to die but it happens to everyone.

I don't know why God let Adan and Eve choose to sin....But I sure glad He made a way to save me from it.

God sent his Son to die for us.....but he did not stay dead !

Sweet Hope.

 

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.

A Very Sad Dog

 Zoe dog left....we are pretty sure she is dead, she was not well and she never leaves.

Shasta dog has been crying the last two mornings .

I never saw a dog grieve like that before.

It is a very very sad sound.

Zoe was not always nice to Shasta...but they would be friends most of the time much like human siblings I guess.

Shasta lost her sister dog.

Zoe was my friend she knew some of my secrets.

Bob Jones never could of heard the sound of a grieving dog .

I doubt he ever had a dog.