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.

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.

 

The Sun Still Rises Every Morning And The Flowers Will Still Be Dancing

  I have had some not good days since I last wrote...some really bad seizures but then I had a couple of days with no seizures. ( That was amazing)

Got off of a drug I think made me hallucinate...Artaine , maybe it did help with the Dystonia  but I need to recognize my parents.....any doctor that would rather me be hallucinating is foolish, just plain foolish.

 I can not walk and have difficulty chewing but at least I know people.

I got see a lot of friends the weekend before last and was given ginormous amounts of love and even an accordion player came and played in my room.

With all that love and the sun rising every morning and my flowers lift their little flower faces doing their daily sun dance and rejoicing in their life and their Creator  ......I find my joy also.

At the end of their dance, when the sun sets the orchids nearly always face me and I feel like they are smiling.." That was simply wonderful"....they seem to say and I have to agree.

The night before Thanksgiving a very bad thing happened and it hurts very much...emotionally , something I feel like I should not go into detail about but it is something my family has had to deal with for years.

I do know that God is bigger than this....and I can cast my cares on Him in fact I have to because they are just too big for me right now, nothing is too big for God.

I am praying God will help me forgive...because I cannot.

I do not wish to become bitter , I do not want to be full of anger and hate.

I pray and pray...because I can do nothing else about this.

 Rejoicing, dancing orchids.

 More rose drawings

They face you when the sun sets.

Holes In The Day

 Since last Tuesday things have been pretty rough.
     Lots of seizure like events  (distonic storms?)


Imagine you are talking with someone and all of a sudden you went forward into the future , maybe they quit talking to you maybe they are not even sitting by you anymore.

Now imagine this happening fifty times.....a big chunk of you day just went bye-bye.

Most people don't black out but I do...I have been told maybe I pinch something off in my neck.

So...the Ldopa was increased so has the nausea.

I did not think I could stand it if I went backwards....but I am not God and for some reason it happened.

Yesterday I went to the lake with family and friends. I still enjoyed the day , I just wish it wasn't full of holes.

Trusting is God is what I must do ....and pray.
I can do no other.....
So help me God.

Life

 There are a good many things I cannot write about on this blog and it has made posting very hard.

I have had some very rough days and some better days.

I have had really happy times...my cousin's wedding and the family reunion, and some really sad things ( what I cannot share with the world)

I want to be brave.

I want to be strong.

I want to be patient.

I want to carry on.


But I feel like a wimp, the opposite of brave.

I feel so weak , I can't stand long.

I have to be patient, but the wait causes pain.

I must carry on, that is my only choice.

So I pray because I can't do anything else about it.

My hope is that love shall cover a multitude of sin.

But no matter what I know God knows better than me, and I would be a fool to think I know as much as God. 

Joy still comes. 
It was overflowing yesterday! I went to my Grandpa's house on the lake with friends and family and I ate some mudbugs. Lots of mudbugs!  And Mr. Smith played some music and I got to play the tambourine and my Dad's log drum thing. Also I got to ride with my sister Katie and Ethan which for me was the best.
 

A Missing Piece Of The Puzzle Of My Affliction Found???

 My Mom looked up some of my worsening symptoms that have happened since I got off the Valproic Acid.

Some things got A LOT worse ...to be completely honest things did not really get better .

One of the worse things was tongue spasms. It had gotten quite bad and it usually happened  many times in the day and lasted a half of an hour most times.

I pretty much have been eating one meal a day because of it.

I was hoping it would go away but it got worse so I came to the conclusion that I'd better tell my parents.

I have a habit of waiting as long as I can hide it, or until I know I can't stand it much longer.

Maybe not the best habit, but I don't want to be going to the doctor for everything.

Anyway have you ever heard of Dystonia ???

Well it can mimic seizures and the way my legs are it appears that I have it.

Anyway Mommy took me to the Dr. yesterday ...they said I would have to wait until Friday but someone canceled and I went.

He said by the way I walk and my tongue and how my neck goes when I have a seizure like event...it seemed like a very strong possibility. 

He prescribed me a drug called L dopa or something..and some muscle relaxing pills to take before I go to sleep or when needed.

Well guess what?? I took the L dopa stuff as soon as I came home and I only had 3 seizure things after I took it and zero tongue spasms!

Today my leg is not turning in so hard as normal and it was not hard at all to get in the brace.

The only thing about Dystonia I don't completely fit is that I lose consciousness when a seizure thing happens...But  I could very well be pinching something in my neck when it happens. My neck is a bit messed up and I have had a chiropractor work on it before. 

Mommy found out about Dystonia, on the internet.!!

the Dr. is trying to get me in NIH..it will be awhile until I get in there.

I am hoping this is it and a big chunk of the mystery has been solved.

I will see how I do today.

Peace And Hope

  You folks that read this blog that don't know me personally probably wonder what I have been up to....so I will inform you.

I was having grandmal like events every couple of days..was at the local hospital one time, and they wanted me to be at a bigger hospital with specialists  but I woke up and went home. Things however were still messy and my parents had to keep giving me diazapan ( I do not know if thats how you spell it).

My parents were afraid my brain might be getting fried.
I slept most of the time.

On the 28th, ( my birthday ) it was decided that things had gone on long enough ...a plan was formed.

My parents had been trying to get me into Hopkins since October so we decided to get a hotel nearby and when the nasty thing happened , call the ambulance and then I would get help.

Well, as expected that night I had a bad one and rubbed the skin off part of my hand and arm on the sheet of the bed because I was shaking so much. The hotel detective came ,the ambulance came, they wrapped me up and strapped me down and took me to the University hospital ....which turned out to be a good hospital to be at.

The event stopped on its own and I had another one in the ER , but it did not appear to be a seizure. I was hooked up to eeg had an i.v. stayed in the ER all night and a pretty big chunk of the next day and then was taken to the brain floor.

When I got there the roommate was in a great deal of distress and was talking and not making sense and crying and she was batting at the curtain between us ...The nurses did not want her in there with me, and wanted to move her but it turns out we got a long just fine. After awhile my parents and I noticed that she was repeating things we were saying and then we heard her say " Help me God ...PLEASE...please....please...please" So we decided to pray and she prayed with us . She did get a little more calmer but she got even better when her Momma came.  As the day went on we talked and became friends . I did eventually get worse though because I was taken off my medicine to see what would happen .

I can't remember much conversation that evening ...I probably did not say much. I had well over a hundred events and they were only four min. apart...all night and did not sleep I was out of it...and going through withdraw.

In the meantime while all of that was going on my parents would take turns watching me and one would go to the hotel to rest. So many people were praying for me ...even the hotel doorman. Also before I had left that day I received a package full of love from my dear friends at the Mendota parish in Virginia ...a very nice card and letter and two wonderful cds were inside that helped me so much.
Actually even before that it seemed like I was getting a letter almost every day from friends when I had a bad day ...one contained some lovely tea. And today when I came home I had even more letters!!!! I just felt so much love.

Back to the hospital story....I got a new roommate and we were friends too, however I did not get to speak to her as much but I do not think we will ever forget each other.

Anyway yesterday evening I was discharged. I have been diagnosed as having non-epileptic seizures and have a plan to see a different doc in Feb.  It is absolutely what I thought  they would say.....Do I believe all my issues are psychogenic in nature? ..No, I have some weird test results and stuff I want to keep somewhat private.

One of the very most important things in life I believe is forgiving others, yourself, asking God for forgiveness  and of course love.  In my head and heart I feel no bitterness or unforgivness about anything (that I know of)...That is how I have tried to live. I have peace and hope ...but no more or less than before the hospital stay,I had some docs say non- epileptic before.

I still cannot walk properly, and can fall and get hurt , I still have lots of events. I feel WORSE being off the medicine right now. But hopefully I will get less shaky soon.

Anyway back to the story , when the eeg was removed the lady was kind enough to clean up my hair and she even French braided it.....at the hotel that evening we ate supper there and a lady who worked there came up to me and told me her story about how she was paralyzed at 15 and was told she would never walk again , she though she would never be able to have kids ....but now she walks and has a daughter .  NEVER GIVE UP.

The hotel bought  us dessert and made mine special because of  my diet.

I am glad to be home ...and I have peace .

Amazing Wonderful News!!!!

As some of you know my family has been renting a hyperbaric chamber for me to use. Anyway I have rather liked it after my wonderful skilled Mommy figured out how to slowly up the pressure for me so it would not hurt my ears so much. Well , I have been doing it every day like I was told to and MY SEIZURES HAVE BEEN A LITTLE SHORTER!!!! :) I still have been having the same amount but I am so glad something positive has happened , maybe they will get shorter and shorter and then go away and never ever come again . I am excited....... Hope!!!

Death and Resurrection, My Hope and Also About My Sadness

 Today, I found out a friend of mine had died. He said he would get better because he wanted to dance at my wedding ...someday. Well when you think about it as Christians we are the church and the church is the bride of Christ, we will probably be dancing at THE wedding . Resurrection...something to long for, something I dream about. I want to loose the leg brace and the helmet, I want to be able to walk properly and not have seizures. I don't know if we even will have to walk then, but I am sure I would not need a brace anymore .
 The thing about all of this is if I had not been sick I would of never met this friend. Everything has a reason...EVERYTHING.

Also today I found out Daddy's truck is done for, and Cleveland Clinic wants lots of money, I thought that it was taken care of.

Today at I.V. I did get to see Ralphie !! He made me smile and made time go faster.

I also felt well enough to go shopping for a bit , almost an hour and got a new dress and a pair of pants since my favorite ones are falling apart. I have had both favorite pairs for five years and one pair cost five dollars and the other three , so I guess that I go my dollars worth.
 Anyway today was hard. I cried before I left for I.V. and I cried when I came home because my Dad was so sad and I had to tell him about the death. And I want to cry now because I keep messing up my typing. Life goes one.....and I MUST trust in God because I could not deal with days like this without Him. That is that.