Dystonia Revisited

Once again I'm terribly troubled by this disease known as dystonia. It hurts so bad at times that it just shuts my entire body down. I went to Augusta, Ga. V.A. hospital last week to get the botox shots. They help but oh how they hurt. I guess I got about 20 shots in my neck, back and front and at the base of my skull. You talking about somthing that hurts badly, let a doctor stick a needle into what feel like pure bone, I know it's not that but it sure 'nugh feels like it.

It has my so sore that I can barely touch it but I just go along, because I know that once I stop and give in to it that, that's all she wrote, boy. I sure am not ready for that yet. Anyway, if I give in to this pain, I'll miss out on all the hugs that are given me at church, afterall, Eastside Baptist is sure 'nugh a hugging, and very loving church.

Also, this pain feels like it's pulling the muscles and it gets tighter and tighter. It feels as if my neck is shrinking, don't laugh, it really feels that way. I ask my husband several times if my neck is getting shorter. I don't know for sure if he's tell me the truth if by chance, it was getting shorter. I cannot move my neck at all, not from side to side or up and down. I just thank God that I'm able to hold it in a front facing position.

I really have to endure this pain and if not for the Lord Jesus, I don't know how it would be possible. I've tried all kinds of prescribed medicines of all strengths and nothing helps. The pain just stays, I do believe it likes me, ha ha. I've even taken Morphine in doses that would floor a normal person and Oxycontin, that also did absolutely nothing, nil, zero, zilch. It's really a "pain" to try and ignore all this pain but that's what I have to do or else it will destroy my life. I just refuse to let that happen to me afterall, the good Lord promised me at least 120 years of life and I intend to see most of them.

To compound this pain of dystonia there is this pain of arthrithis that's set up around the base of my skull. It's so bad combined with the dystonia that it wakes me up at night. It's hard to sleep anyway because I've got to lay mostly on my back because it hurts my neck to lay on either side. I was always a left side sleeper too, but when this disease got so bad, those nights were over.

Oh well, that's all I;ve got to say now so I believe I'll stop. May as well, I can't dance, private joke. But, I'm closing with this , I'll not give up or give in. My faith and my trust is in the Lord Jesus and HE will won't give me a battle that He won't go through it with me and He always provides a way out. Anyway, I've won, Jesus already defeated this dystonia and now I'm just biding my time. Praise the Lord. And devil, you had just better not stick your head out from under my foot, I would just have to stomp you good.

A Poem To Make You Think

This was written years ago and I just ran across today. Lots of people have tried to explain it, but none as yet, has succeeded

Old Young Men

Sandy Walker(1986)

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At square round tables;

Sit old young men,

Who come to my house for cards and gin;

At square round tables,

These old young men;

Tell of heartaches they hope to mend,.

Mending unable, they talk about kin.

At square round tables,

These old young men.

A Poem of Purpose

When The Roll Is Called
{Sandra Walker-10/26/2004}

What will happen when the end does come,
Will I be waiting and ready,
Or will I really run?

When the sky splits in the East;
And the Lord calls out real loud,
When the roll is called up yonder,
Will I be there?

Will all I did in secret be told from mountain top?
Will everyone be able to hear and will I beg Him
Please, please stop!

When all around the saints go by;
In robes of purest white,
Will I stand trembling on the edge,
Unable to control my fright?

When it's all over and Hell is full;
When Heaven's gates open wide,
When the names of all are over with,
Will my name be written on high?

With Hell's fury burning bright;
The saints going to the other shore,
Is my name listed down in Hell,
Or on Heaven's Roll forevermore?

Family

What happens to a family when the one that held it together passes away? It seems that it just falls apart. Where once there were many people gathered around a dining table, now there are only a few. Once there was a lot of laughter and ballgames on tv, birthday parties and big dinners. Now there are nothing of the sort. No one visits any more. No one calls or writes. Where once there was a family with six siblings, now everyone is a solitary being, living only for themselves and the family they've raised for themselves. They have no time to even think about the siblings they've left behind.

There was a time when Sunday was the happiest, liviest day of the week. It meant that all the kids would be coming to Mama's house.I can see Mama now, sitting in her rocker in front of the television waiting for the Atlanta Braves to begin their game of the week. A little after one, her kids begin to come through the front door. Usually, some are there early, say eleven o'clock and some will stay for as long as seven or eight at night. No one minds though because there is so much love in the family that everybody could stay together forever and not mind it at all.

But, there always comes a time when all happiness ends, when something so great happens that everything falls apart. That's exactly what happened in October of 1996. The matriarch of our family had a stroke and went into a coma for about two weeks. All the siblings were there everyday keeping watch over the progress of their Mama. Finally Mama got better and came home. She had to be re-taught have to move, eat, and talk. She was bedridden but not unable to learn. There was talk that she'd never be anything but a vegetable but through a steady stream of talking and exercising her limbs, she began to talk and move her body. The movements came slowly but she did re-learn to talk and move her arms and legs.

Now, it's as though there is nothing between the siblings that were once so close and had such fun times. Now, no one visits or calls or anything else. The one that taught the movements to the Mama is treated as a total stranger with no connection with her siblings. How does this happen?

One has to take it upon themself to try and patch the gap that has developed over the years. It is a long, tedious journey trying to reach people you love but cannot converse with or see. You try everything you know and pray that they will come again into your life. A life that was once so full of laughter and joy and now is just a life of longing. Longing to see the faces of the ones that used to come sometimes 2-3 times a week and called often, who now are as silent as death itself.
It's a hard thing to do to try and talk with people that just really couldn't care less, but praise God, success comes!!!! It was time consuming thinking of ways to get some action going. Once started though, it began the snowball effect. Now there is a little communication between the one left behind and one of her siblings. She did get one email from another one but that was it. The one she's talking to now is very faithful at sending emails, at least 1 a day, some times more. She'll also send pictures of herself and her granddaughters to the sister that was forgotten. They talk about things from long ago and reminisce about all kinds of things. It's as though they've never been separated.
There is visits to another sister, she also was discarded by the siblings but for a different reason altogether. Funny thing though, this sister was forgiven quite a long while before the other, by one of the siblings at least. It's an odd feeling having a family but never seeing them, or visiting together or doing any of the things that families do.

But like I said earlier,the forgotten sister has one of her siblings emailing her, so, where there is a little headway made, there is room for a great deal more. Strong faith can move mountains and hope is never far behind. Those that wait patiently and keep on trusting the Lord Jesus will be rewarded. I think part of this sister's reward has been contained in an email from her sibling.

That sister has made this sister very, very happy. Thank you Lord Jesus!!..................

A Poem I Wrote

I'm going to post a poem I wrote and hope it will be understood by everyone. I really love writing poetry and short stories and thought I post one or two and see what happens.

Night of the Harvest
Sandra Walker {7/22/2004}

I saw the face of Jesus last night;
Oh, my goodness, He's a beautiful sight,
He was dressed in robe of white,
And it flowed so long,
Off to the side, angels sang a sweet song.

I knew not what the words they sang;
But, the tune was one that in me shall remain,
I knew it well, but could not recall,
But I've heard it once in my church's hall.

All at once Jesus stood up from His seat;
He looked me over from my head to my feet,
I thought I'd surely melt away,
His eyes were afire and seemed to blaze.

Jesus took my hand into His own;
He led to to The Great White Throne,
He looked afar and then I knew,
It was time for harvest,
All around us, angels flew.

He gently embraced me against His chest;
He said come in, you've done your best,
I've got to make ready for my other guests.
I'm glad.with Him I had this private time
He knew I'd be lost in that great coming line.

I looked down and saw angels harvest the land;
Jesus was smiling as He held to my hand,
The saved ones shall see this Jesus of mine,
Then, at once, my person had a radiant shine.

Again, I looked and aglow, I was;
My light did shine as bright as any light bulb,
Together, we watched as the souls came home,
Then again,we, with the angels sang that sweet song.

This came to me one afternoon about four o'clock and I wrote it in about ten minutes. I entered it into a contest at a Christian website but, alas, I didn't win first place. I had to write it though, it was burning inside and had to get out.

Feelings Gone Awry

How do you handle it when a person jumps you for something that absolutely is not your fault. I'm about to give a you a story that I'd like some comments on. Read it thoughtfully and carefully and give me your thought about what I'm about to tell you.

There's this couple I know, who went to pay property tax. It was also, almost time to renew her driver's license. She filled out all the forms and was called to the desk. Oh, I forgot to tell you that this woman has a slight disorder, but it's noticeble. Well, on the papers she filled out it asked if there was anything that'd keep her from operating a vehicle. The woman started at first to mark NO, but being a truthful woman she put yes. The lady behind the desk ask her what her trouble was, seeing that she was very nervous about standing before her desk. The first woman told her and added that she'd been driving for years without any mishaps. The desk lady asked her does she want to keep it yes and be truthful about it or does she want to say no. The first lady knew that her disorder could cause an accident decided she'd keep it yes so the desk lady gave her a stack of papers to be filled out by a doctor. If the doctor says she capable if drivng the first lady can come back and get her license.

The first lady related this to her partner, who flew off the handle. The lady couldn't understand why he'd be so angry. He yelled some very crude and angry things at her, saying very hurtful things.
He acted as though the woman could have just stood there and told the desk lady that she'd not move until she got her license but when something is very seeable, why should anyone try to deny it, If it would cause an accident, why even want to drive. When they got home, the lady finally broke down and cried, not because of not getting the license but because of the reaction she received from her mate when she told him.

Now, I think the woman was right to tell the desk lady she had a disorder that may not be suitable for driving. I think the mate was way out of line, jumping on her and saying all those bad things to her. It's better to be truthful about things than lying about something that is obvious to everyone. I see no reason for the mate getting mad. He should have just said I'm sorry you didn't get your license renewed. People have got to try and be more understanding and sentative to people's feelings.

Living With Dystonia

Do you know anyone that has Dystonia? Have you ever heard of Dystonia? Take it from me that it's not a pretty sight and it is very, very hard to live with. It limits you at what you can do. It holds you back from going places, it's sort of like a jailer and you are it's prisoner.

Let me try and introduce you to Dystonia. First of all, the simple explanation is the involuntary moments of the muscles. That's way to simple though because it's a lot more than that, I just cannot express it. There are many different forms of this disease to which there is no cure. There is 'Spasmodic Torticollis' where it effects the neck. Your neck can be drawn or twisted to the left or to the right. Some have their necks pulled forward toward the chest and others are pulled backwards. As for myself, my torticollis used to be drawn toward my left shoulder, leaving my right shoulder about six inches lower than the left. I was a pretty sight. There is also, shaking associated with Dystonia. It depends on where your Dystonia is as to what part of you will shake. With me my head shakes a little.

It is also painful, you turn your neck to one side and leave it that way for a good length of time and see how it hurts. Now just imagine it being that way for, say, 22 years. The muscles in the neck will get knotted up so tight that it feels like it's drawing your neck farther than it really is. Sometimes you'll feel like the only thing left to do is scream out loud. That doesn't help though it only scares the people around you. Laying in a tub of hot water helps a little but not for long. Massages help a little not for any length of time. It's just a terrible feeling all the time. The pain is so intense at times that you think if I just step out in traffic this pain will be over.

There is also, what's known as Generalized Dystonia. That's where the entire body is under attack. The truck of the body will be turned sometimes. If you're standing up and look down at your feet, the body will be turned so that one of your arms seems to be hanging down the middle of your body. You can't stand perfectly straight. As you sit, looking down you'll see your chest shifted a bit so that one of your breast will be sitting over your belly button and the other almost under your armpit. It's a sight to behold. Dystonia can effect any and every part of a person and there not a certain type of person that can get it. Dystonia likes everybody.................................................

Dystonia is treated mostly with drugs, such as Baclofen or other kinds of muscle relaxers. It was a very long time before I found the miracle of Baclofen. I had been stricken with Dystonia when I was 18 years old. That a really bad age to have anything wrong with you, especially physically. For reasons unknown to me, people just don't want to be around you if you're physically unattractive. After all, who'd want to walk around with someone who was always looking towards the left, that's the way my neck was twisted.

The first time I'd ever heard of Baclofen was when I went into the Veteran's Hospital in Columbia, S. C. I was 47 years old. After years of doctors not knowing what my condition was or what to call it, the doctors at the VA took one look at me and knew what was wrong. I'd never heard of anything as Dystonia, but that night they gave me 2.5mg of Baclofen and a miracle occurred. When I woke up the next morning, to my surprise I could turn my head to the right for the first time since I was 18 years old. I was absolutely amazing to be able to look to the right without turning my entire self to the right. I still take Baclofen, 90mg a day/7 days a week. I think I'm actually afraid not to take it or even miss a dose. Afraid of my neck turning back to the left.

It takes a strong person to bear up under the weight of Dystonia. You don't only have to bear the pain 24-7, but there are other things you must bare. As for myself, I was teased, made terrible fun of, laughed at, run from, insulted and always left out of everything. I was very seldom invited to go anywhere with anyone, including family unless of course, it was my treat or they needed me along for some reason. I even had to walk behind people when I did get to go with anybody. I was even told by some to hold my head straight, which was an impossibility. I gained a lot of strength due to my affliction. I really learned alot from having this disease. I learned that I'll not make fun of anyone with any kind of disability. I'll not make fun or point and holler at people who look different from everybody else. I'll not make anyone feel small or useless. I'll never consider myself better than anyone else either. But, I will be the one that'll cheer you up, lift you up, build you up and help you up. Whenever you may need any of those things, anyone can always call on me.

You must be strong spiritually also, because if you aren't when the insults come you'll turn on the person or let the insults turn in on yourself. That will result in self-pity and that's one thing I do not have. Some people with a disability will sit back and just not try to help themselves. They'll let other people do everything or they'll try to see just how much they can get people to do for them, while they just sit by and let the world pass them by. They wallow in their self-pity, but, praise the Lord, that's not me. I get out when the weather permits and help the people that need my help. I try and tell other people that the only way to live with the pain is to work it. Working on your pain will increase it at first but the more you do, the better you'll feel. The pain won't be gone but you'll just not pay any notice to it or as much.

Sometimes, chiropractic can help Dystonians. I went to a wonderful chiropractor for a couple of years and he really made my body look better. Most people with Dystonia are afraid of chiropractors and won't let them touch them. If they only knew!!!! There has been the discovery that Botox is good for us Dystonians. Now that is a slow and painful process. I believe the first time I had the shots the doctors gave me about 28 shots in my neck, shoulders and back. It feels like when they find the knotted muscles that the doctor will twist the needle around in your flesh to release the toxin into all facets of the muscles. It hurts so badly. I know I've fainted 2 or 3 times after they're through with all the injections. I honestly don't know why all those people who pay high prices for the Botox shots have them done just for vanities sake because it hurts like crazy.

I've had to have a neck operation[in 2002] because of my torticollis. The disc in my neck and back are crumbling and making what pain I have, even more intense. They had to cut a wedge out of 2 of my spinal disc at the base of my skull. It really helped but when I came home to recuperate, I rolled off the couch and knocked my esophagus out of line, making everything entering my mouth come right back out---my nose. Again fright entered my life and I'd hold my head as straight as I could to keep my throat straight[I thought]helping my esophagus to heal. Well, I held it so long in one place that arthritis set up around the base of my skull and down my neck. Now again, I'm at the mercy of a neck that will not turn, but at least now my neck isn't turned to either side, it's frozen in the forwarding looking position. I cannot even tilt my head to look up at the stars without throwing my back out. I cannot drink from a glass very well. I drink everything threw a straw. But, I'm still not saying all this for anyone to feel sorry for me. I want to let everyone know exactly how it feels to be chosen to have Dystonia, a mysterious disease that has no cure and no one is sure where it comes from or why. There are an awfully lot of us Dystonians around. Some are still trying to hide the fact that they have it and are embarrassed by it, but it's a fact of life. No use to feel shame and hide. As for myself, I just won't let this disease get the best of me. I'm a fighter, always have been, a survivor. This Dystonia ain't gonna get me down, not as long as Jesus Christ is my source.

Touched By God's Hand

The poem below was written quite a while ago. Again, it was entered into a contest. Again my poem did not win, but, praise God, I'm getting plenty practice at writing my poetry.

Touched By God's Hand

{Sandra Walker-3/29/2004}

I was touched by God's loving hand;

It showed me the view of His beautiful land,

I know I'm forgiven, His love is mine,

I've been touched by His hand Devine.

It's so easy to receive God's love;

Keep your eyes on things above,

You, too, can see this beautiful land,

Just surrender your life, become a new man,

If you're feeling ill, sick within;

Call on the Lord, He's your best Friend,

Your sinful life will be no more,

When you step upon Jordon's golden shore.

Just one touch, you'll be renewed;

His precious blood makes you brand new,

So let Him touch you, don't delay,

Your old self is gone, you're a new man today.

Your sins will be forgotten,

As only God can,

When once you're touched by God's

Mighty Hand.

Promises

How much does keeping promises mean to you? Do they mean just a little, a lot, or are promises just a bunch of empty words? If you promise something and then don't keep it, how do you feel? Or does it not bother you at all. These are views that need to be explored.

Some people break promises as easy as I'd break a toothpick. It's just that easy for them. They'll promise you anything but when the time comes to fulfill that promise, they casually forget or have something else to do. What really gets me is when the promise to you is broken because they got a better offer to do something with someone else. It doesn't matter to them how it makes you feel, just as long as they get to do whatever it is that has come about. There'll be all kinds of arguments, bad words, and stomping around when they're confronted with the fact that they have broken the promise that you had waited so patiently on. People like that don't like to be reminded of their shortcomings. I think the reason they fuss and cuss is because they know they've done wrong[of course they know], and they are trying with everything they have in themselves to turn the entire situation around so ALL the blame falls onto you. You, the one the promise was made too, is now the one the blame is placed on that's causing all the discontent between the two of you. There's a lot of growing up and maturing needed on the part of the promise maker and there a huge difference between being grown and being mature.

Why don't people try and understand that everything is not always about them. They blame you for their failings, always passing the buck. I always thought we were here to make other people happy instead of doing as we please. I guess everyone has a different objective in this life. But when promises are broken, it's not only their word that been broken but it's the other person's heart, their feelings are squashed making them feel like they are really of no use to that person at all. They become the lowest man on the totem pole.

What makes people act this way? Why would anyone want to break a promise unless of course it was a matter of life and death. WHY???? That sure is a big word that is hardly ever explained to the fullest.

My Most Unforgettable Character

I have a person in my life who is my inspiration. If not for this person, I may never have had the nerve to even try and start my own blog. This person is very dear to me and I've never really met him. I know that he's a good man and that he's married and he's a grandfather. I know that he has a heart as big as all outdoors and he always has time to answer my emails, counsel me, cheer me up and help me in my studies.

I think once I saw a picture of him at his site. He is a very nice, sweet, gentle looking man All I know is I just couldn't make it through the day without unwilling him with some sort of question. He has never said he doesn't have the time or if his time is short he will say, I'll get back to you as soon as I return. I thank God that I met this man in cyberspace way back in the year 1998[I believe], it may have been later than that, but I feel as if I've known him and his wife all my life. I guess I could say that they are my best friends even though we've never met. I know that they are there for me with a good word and a good thought. He's the best!!!!

So I'll end this with the same thing I always end my emails to him with. As always, thanks Jer, you'll always be number 1 in my book. Maybe, the rest of the world might know him as Jerry Boyer of www-talks.com and Jerry's Haven 'n Tell, but to me he will always be my Jer!

Thanks so much for all you've done for me, Jer. I will NEVER forget you.

Important Things in Life

What do you think is the most important thing in your life? Some people I know are going to say thing such as my family, my car, my boyfriend, my dog and things like that but, that's not the way it should be.
The most important thing in anyone's life should be their relationship with the Lord Jesus Christ. Notice I didn't say your religion should be first, I said your relationship, a personal relationship, with Jesus should be the most cherished thing you have in your life.
I believe there's a huge difference in_religion_and_a personal relationship with Christ. Religion is usually characterized first by being a Baptist, Methodist, Presbyterian, Church of God, Catholicism, to name a few. Religion believes in going to church but most of the time no one goes. Religion believes in tithing but very seldom gives anything. Religion believes that it's ok to do little things like tell "little white lies" because all they need do is ask forgiveness. Well, all I can say is, you can keep your religion, I don't want it!!!
I want a personal relationship with my God who through His mercy for me and you sent His son into this world to be sacrificed for us, once and for all. This kind of relationship gives me the feelings of peace even when everything around me is falling apart.It helps me to things that without it I couldn't do at all. I am honored to give my tithes without flinching because it's taking away from the amount I've got. All I know is that when you give with the right attitude that you'll get back more in return than you can ever imagine. This relationship helps me to NOT do anything wrong because I absolutely don't want to dishonor my Heavenly Father by doing anything wrong. With this kind of relationship when Satan tells me in my mind that I'm no good, I speak back to hime by quoting the Word and telling him that I am a child of God. That makes me an heir of His and co-heirs with Christ.
Then Satan comes back with "You can't do this or that" but again I speak to him that I am more than a conquerer through Christ Jesus who strengthens me. Satan eventually gets tired of testing so he'll leave me alone for a while, but he always comes back. He wants to try and win all the souls he can.
What is really weird to me is that there are actually some people who'd rather listen to Satan than follow the guidence of The Holy Ghost. These are the ones that get what they possess through unlawful means, not caring about the consequences. Unlawful meaning sometimes aginst the laws of man but most of the time against the laws of God. Now you might say, we don't live under the Law but under Grace. That's true alright but we still have to honor rules such as The Ten Commandments and The Golden Rule. Some though will just not obey either of these.
Some people would just as soon get rid of their neighbor than to love them. Then there are those who do not like a person because of their color, race, creed or sexual orientation. This is just not the way that life is supposed to be.