Friday, December 30, 2011

New Year Coming

With the New Year just around the corner it is time for me to solidify what my New Year resolutions will be this year. I am a big fan of New Year resolutions because its a good way for me to get back on track doing things I really think I should be doing or doing things I want to be doing but never seem to get a chance to do. For example I really should be exercising but I struggle making it a habit and I really would like to try all those recipes that I have cut out of magazines but never have found the time to do it. 

This year I thought it would be great dear reader to put my resolutions down right here in front of you so I have some accountability. Not that anyone would really ask me how I am doing but I can organize my thoughts here. Here it goes. (Note that these are not necessary in order of importance).

  1. Make a green drink for breakfast every time I am home for breakfast. I have been drinking carrots and kale and cucumber and the such every morning now for about a month and really do have more energy. Got to keep it up.
  2. I tremble to write down this next one..........  Exercise. There I did it. My goal will be to go to the gym three times a week to stretch and work the elliptical. This is a major hurdle for me. I don't like going be myself. I don't like exercise clothes. I just don't like it. 
  3. Purpose to know Jesus more for who He is and not just get caught up in the disciplines that help to do that. 
  4. No Facebook. Time-waster.
  5. Pursue ways that I can be more creative.
I have heard that one should not make too many or else it becomes too hard at trying to keep them. So this year I am stopping at 5 resolutions.

My reader it would be so interesting to see what you are resolved to do.  Am I the only one who makes these things?

Tuesday, December 27, 2011

Where am I today?

Its December 27th and I made it through Christmas seemingly pretty well. This party girl was prudent and didn't stay late on Christmas Eve, paced herself on Christmas day and relaxed the day after. And I am feeling pretty good. 

I went to my Chiropractor today. Our visits are going very well. Several weeks ago he gave me nutrition to take because he believes that I probably have infection on the right side of my face due to all the dental work I have had done in the past. About a week ago I began to have a different taste in my mouth. Alright I will be honest, it tastes like nasal mucus in my mouth. There is drainage going on somewhere. As hard as I look I cannot figure out where. My gums look healthy to me. Maybe this is more than you really want to know :) .

He also has been targeting my trigger points with some kind of sound machine. He turns on the machine and runs a wand over my face along the jaw bone. Where the sound becomes a very high frequency he stops and turns on another part of the machine and leaves it on my face for about thirty seconds. It feels like pins and needles to me. Then after thirty seconds he moves on to the next spot.

I also have light therapy. This machine looks like a flashlight which again he runs all along the side of my face and behind my ear. This is suppose to help with inflammation.  

Of course I also get the regular chiropractic treatment of a spinal and cranial adjustment. 

Bottom line: I am feeling better. I have good parts of my day now that I do not have any pain. And it has been a long time since that has happened. 
So here I am on December 27th feeling good.
Praise God!

Thursday, December 22, 2011

pacing, pacing, pacing

I have got to pace myself. We all know that. If I do too much I am tired and hurting. Sometimes I can even break. Then its a long time till I am feeling better.


I feel fragile inside. I am going to break and I know it. It is just a question of how much until I do.

A fight goes on inside me. I want to conquer the world, at least my little part. But I know the consequences.

There are things that demand my attention that I just can't let go by. I feel guilty and imposing to ask others to help. I always feel imposing. I don't want them to have to do that which is mine to do. But I can't do it all. There is the constant decision making of, "Is this something that really needs to be done or can I let it go?" How do I know?

There are the fun things. Most of the time I go to places tired. Or come home tired. I look back on trips we have taken and thoughts run through my head. "I was really tired when we went there!" or "That one wasn't so bad."

Yesterday, I was talking to a lady who lives about two hours away about making Hungarian Christmas cookies. She had shared a recipe and I needed clarification. As the conversation developed we talked about getting together next year to make Linder cookies. I would like to do this. She lives about two hours away. All I could think is how I could never do it. I could drive down there. Or I could spend the afternoon learning how to make cookies. Or I could drive home. But I know I can only do one of the three.

It is four days until Christmas. I want to everything to be right. Clean house. Nice meals. Sweet visits. ........ But I am already tired. My family will surround me with love. Over and over again they will offer to help and take over my duties. I will be grateful more then they will know. But inside I will be crying because my heart wants to be doing for them. They will want to save the day for me, whatever it takes. And they do, over and over.

....Maybe the best gift I can give them is to not break.

Saturday, December 17, 2011

And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.
Romans 8:28

What is good about this disease that I can call my own? Or better said how will God use it in my life for good? In the beginning I would not believe that God had a way to use something so horrible for good. It seemed so contrary to my way of thinking. I could not come to this pain and think how it would be used for good in my life. I could not see it. But as time goes by I can see how I have changed because of this trial that I have and am going through.

1. I have compassion for those who suffer. When someone shares their pain I have learned to care and not take it lightly. I have learned to imagine the best I can what they are going through and take them seriously.

2. I have learned to endure. Endurance is a good thing in and of itself.

3. I have experienced the unconditional love of a good man. Any man can stick with a woman when life is good and bright and cherry. But it takes real love to stand by someone when they are weak and in pain and constantly calling on you to be their strength and care for them. It takes love to stand by someone when day after day they are a problem and sometimes a problem that they can do nothing about. I see that kind of devotion in my husband.

4. I have felt a closeness to my Lord that I don't think I would have known had not I needed Him so much. He has been there in the darkest moments. And I have known His presence.

5. I have a first hand experience of what nerve pain is like. This gives me a clearer picture of His nail pierced hands and feet and the pain of the thorns being pressed down into His head. I have no control over what I feel but my Lord went through that pain willingly for me. I love Him all the more for this.

6. I am glad for heaven, because in heaven there is no pain.

7. I understand what it is to really fear something. I never know when the pain will strike or where I will be. And I understand what it means to take that fear and turn it into trust in God.

8. I have learned to pray for others.

9. I have learned humility.

10. I have experienced the love of others, over and over again.

11. I have learned not to fear the future. Only God knows what the future holds and the worst thing I can do is allow myself to imagine what it might be.

God truly uses all He puts into our life to bring good. Not always easy but always good.

Monday, December 12, 2011

Where Would I Be?

Yesterday I visited my son's church. It was the Christmas service and he was directing it and I wanted to be there. It was a wonderful service, very well done. It helped me to remember the Christmas story through the talent of others.
What touched me most was the man who came up to me during the greeting time and hugged me and shared how he prays for me all the time. A man I barely knew. A friend of my son's but someone I had met maybe once or twice before.
It is not uncommon to for me to see people who aren't in my day to day life but who know me who share how they pray for me.
That is what the Christian church is. Caring for all our brothers and sisters in Christ by taking them to the One who can do the most for them, our Lord Jesus.
I do not want to think what I would be like if people weren't praying for me. I could only imagine a horrible place. God is big and powerful and working in my life.
But this is also very humbling to me. I don't really feel like someone worth praying for and yet God burdens the hearts of others to do exactly that. In actuality, it isn't about me, its about God. They understand and know Him and because of that it only makes sense to take people like me to Him.
He says He hears every prayer. And answers them too.
So thank you to those who pray for me. Thank you for your faithfulness.

praying at all times in the Spirit, with all prayer and supplication. To that end keep alert with all perseverance, making supplication for all the saints,

Eph 6:18

Tuesday, December 6, 2011


So here is the neurologist story:

Last year I decided it was time to introduce a neurologist into my life. I could stand the pain no longer. I was in terrible pain. Following the rules of the "system" I went to my primary care (who knows me well) first and she referred me to my neurologist. He wasn't willing to see me for quite a number of weeks but my primary care doc. got on the phone to him and so the neurologist would see me in three weeks. Take what you can get.

My primary care doc. took the initiative to put me on carbamazapine for the pain. She could tell I needed help right away. My neurologist wanted me to come with cash in hand since I had no insurance. Not check or charge, cash only. My visit was short and sweet and included a lecture about not having health insurance.

Fast forward to the present. I am on the highest level of carbamazapine and its not working effectively anymore. I call but have no luck getting an appointment with my neurologist until my 6 month follow up.

I will wait.

Last week I got a call from the receptionist of my neurologist. They were cancelling my 6 month follow up so my neurologist could go on vacation. (I understand everyone needs a break sometime.)
"Please call back on Monday to reschedule your visit" I call on Monday to reschedule and am told they have no idea when they can "fit" me in. They will call me back. I am still waiting for that call.

Now I have started to pray for this man because Scripture teaches we should pray for our enemies. I figure God knows this man needs prayer. And He knows I need a different neurologist.

Wednesday, November 30, 2011

Good News

Dear readers I have had very little pain today!!!!
God has shown His mercy!!!!

Tuesday, November 29, 2011

Call Me Crazy

Call me crazy but I started with a new chiropractor.

I like this one.

He does light therapy. He takes this wand that he holds in his hand and holds the light up against the side of my face all along the jaw line for 30 seconds at a time. It makes a difference. My pain isn't completely gone but I am eating again and talking again.
He also adjusts me the traditional way and today he did a new move that I never had done before. It is an osteopathic cranial stretch. His assistant holds down my left shoulder as he takes my neck and head and stretches it in the opposite direction for 30 to 60 seconds. Then they do the opposite side. While he was doing it all I could think about was the story I had heard when I was a young girl of the neighborhood chiropractor who broke a patient's neck. My chiropractor didn't break my neck of course. And actually I felt a great release of tension after he was done. I felt good in my head. Light and airy.

Thursday, November 17, 2011

Chiropractor Part Two

Chiropractor 4 - Young, compassionate and quite sure he could cure anything! Except me. And that frustrated him and I knew it. Time to move on.

By now my disease is often quite painful. Painful enough to bring about screams of fright running to Bob when the electric shocks came on. He would come and help me crawl into bed and hold me until the worse was over and I could fall asleep. That was a pattern. I knew I watched the clock. 10pm and it came. Every night.

Chiropractor 5 - I read in the book The Strike that an upper cervical chiropractor had great success with TN patients. There were only a few in the US. Ironically enough there was one 1/2 hour away. I called and set up an appointment. After my first appointment my pain decreased at least by 50%. My travel began, three times a week for years: 1/2 hour down, 45 minutes there and 1/2 hour home. I went a year without pain and many, many days with light pain. Then it happened. I went for an adjustment and instead of helping the adjustment set off the pain. I sat for several hours curled up in a ball in the chiropractor's office afraid to move. My pain was back and fierce! The next thing I know the man closes down his practice. And I am on my own again.

I felt betrayed. Left. I trusted. I was left. I would not go through this again.

Scripture states:
James 5:14 Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord.
Believing in God's Word I went to my pastor to ask if he would have the elders come together and pray for me. He was willing. One Sunday morning before the service started I met the elders and they prayed and anointed me with oil. My pain lessened but did not go away completely. I was willing to summit to this being God's will for me. Five months later reading about another church on the internet I saw they had a healing service. I felt like the Holy Spirit was leading me to attend. I did. The people prayed for me. My pain went away.

God blessed me with at least a year of no pain and a for a time after with mild pain.

But as it happens the pain comes back and grows and grows until it is unbearable. Now my pain was every day. Unable to cry for a tear running down my face would be excruciating. Horrible doesn't seem forceful enough to describe what was happening. There were the thin, string like electrical shocks that were set off by touch. They came in groups traveling from my mouth, up the side of my face to my temple. Then there were the continual electrical shocks, one right after another, nonstop, forever on and on. They were stronger. I couldn't determine what triggered them. "JUST MAKE THEM STOP!" Next came the king of it all, the lightening bolts. They were a hard, thick , strong, deep firing of my nerve. It was as if there was nothing but this nerve that wanted to say, "I am King! I will rule". They were the ones that left a bruised feeling in my face like someone beat me up. A reminder nastily left behind so I could not forget they had been there. Sometimes the pain would be in my mouth. Closing my lips, my tongue touching my gum line or swallowing would set it off. Some days I spent hours sitting, not moving waiting for it to stop. Some nights pain unbearable. I slept not moving. My whole body tense. When I slept there was no pain but when I would stir it would be there waiting for me. There were times when the intensity of the pain became so strong I could not contain myself. Bob would allow me to hit him as I cried and begged My God for His mercy. With the pain came fear of the pain. I spent my days and nights in fear that any moment it would come. I never knew when it would come or how long it would stay.

Chiropractor 6 - Dr. _______ is a cranial specialist. By now I have become brave enough to ask questions like, "Do you know what TN is? and "Have you ever had success with TN patients?" His response was a definite, "Yes!" My first visit was an evaluation. He said nothing through the whole exam. At the end he just looked at me and said, "I make no promises." Dr. ___ had absolutely no bedside manner. I mean none. But he tried. He was the first chiropractor to put his fingers in my mouth and apply pressure. He mushed my head! :) . But I was in pain and it just got worse. After many weeks one day he said, I am not doing any good am I?" No. I was done. I was frail and I was broken. I needed help. I could take it no more. Traditional medicine was to become my ally. (2010)

Wednesday, November 16, 2011

Chiropractors Part One

If anyone has a history with chiropractors I sure do! It just seems like the right way to go. Got a problem with your eyes you go to an eye doctor. Ear infections bothering you, and your off to the ear, nose and throat doctor. And of coarse the dermatologist takes care of any skin issues. So I have a nerve issue. The chiropractor seems like the right kind of doctor to go to. I have been to quite a few these past twenty five years.

Chiropractor 1 - He lived in Pennsylvania. I was having trouble with bad headaches at the time. They were the kind of headache that go up your neck and cover the one side of your head. Well, this doctor was the kind of doctor that jerked everything back into place. My girlfriend who took me to him the first time while she was going, let me sit in and watch him work on her. Bad idea. I was sure he was going to wring her neck off. When it was my turn I prayed to Jesus hard. And it worked! No more pain! Years later when I told him I had TN he had no words of encouragement. The best he could do was suggest a healthy diet.

Chiropractor 2 - I went to him when doctor 1 was on vacation and I fell down the steps and jarred my neck. He was legally blind and very old. The first time I went there we took my blood pressure together. He listened and I read the machine when he said now. I am not kidding you. But he made me feel so good. He started at my feet and worked all the way up to the top of my head. And he would whisper sweet nothings into my ear as he worked. Like "Eat a banana for breakfast" or "Nutella". I stopped going to him when I realized that he fell asleep in between patients and his receptionist had to wake him up constantly. He was good though.

Chiropractor 3 - Another Pennsylvania man. I remember when I told him him I had TN. He bulleted
back to me, "No you don't! People kill themselves when they have that disease." So encouraging. He talked about shooting alcohol in my nerve. "No thank you sir, good bye!"

Friday, November 4, 2011

Therefore since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before Him endured the cross, despising the shame, and is seated at the right hand of the throne of God.
Hebrews 12:1-2

Thursday, November 3, 2011

I am a Social Creature

I can't eat or talk without pain! Yet I still try to do both. One is for survival but really both are for survival. I am a social creature and didn't realize how much until you told me I wouldn't be able to talk.

So I am practicing silence. It is interesting how others respond to my silence.

Car rides. Margaret and I do quite a number of car rides together. It is amazing how quiet it can get. Usually we are pretty verbal. Not lately. Though what has begun to happen is she anticipates what I am going to say or ask and responds.

People in public places. It is amazing how many people speak to me in public places. And how empty it feels when I answer back with only a smile. Do they notice? Or is it just me that notices.

At home. I can hear so much more now that I am silent. I never realized how loud the clock ticks. And how one can hear the washer in the basement. Or just notice the beauty of the silence.

I hate it when people say, "well I will leave you now so you don't have to talk" They think they are doing me a favor. I want to scream, "No, You don't understand. It isn't what I want. I want to talk. I want to communicate with you. It is important to me. But I can't."

I am a social being.

Saturday, October 29, 2011

Dear God, I need another miracle

I sit here thinking back to all the times you intervened and gave me a reprieve in my TN. There are many. 
Niagara Falls - It had been a long day and I was sure I wouldn't be able to eat dinner. We sent the kids into the restaurant and Bob prayed for me. Instantly the pain was gone. 
Healing Service - I knew You told me to go. We went. People prayed and for a year no pain.
Chiropractor - Night after night horrible pain. We went to a chiropractor. The next day the pain was minimal. 
Another prayer time at church and my prayer was lessened greatly.
You gave me a neurologist. 
Another year with out pain.
And You are always there in the midst of it. Holding me. Teaching me. Reminding me of the pain You went through for me. Often I wonder, is this what the thorns in your head felt like when they dug down deep. Or the nails in your hands and feet. I understand a little what You went through. Just a little. It makes me love You more.

Wednesday, October 26, 2011


Me and My Hero
I believe in having heroes, or should I say I have heroes. There are those heroes that one really doesn't know but has read about or seen their lives depicted in movies. Their lives emulate characteristics that one values. And then there are personal heroes. I think everyone should have at least one personal hero.
I have one. He always saves the day! He is one of those heroes that no matter the problem he has a solution. And when there isn't a solution he just holds me. He is one of those kind of heroes that makes me feel like I am the most important thing on earth. But he is not a hero that lets me just whimp out. He challenges me to do what I can. Yet at the same time he seems to know exactly when enough is enough!
He has his own sayings that come out time and time again. Like, "look I just happen to have some extra money set aside for that." or "I got an idea" or "just do the best you can do'.
He also knows what will make me laugh. Things just between us. They work every time though.
As I would say, "he can stay"

Wednesday, October 12, 2011


I have a friend that no matter how long it has been since we last talked, when I pick up the phone and call her it is liked we never stopped. She is one of the few friends I have who challenges me to keep the right perspective.
She also owns a Vitamix.
To those of you who aren't sure what a Vitamix is let me tell you. It is a super duper blender that can pulverize anything. Which right now is most needful. My TN has confiscated the inside of my mouth. Every nerve on my upper right gum line feels like it is on fire. Even chewing on my good side (which really isn't a good side because I am missing a tooth) causes the pain to escalate! For awhile I was trying to get by on protein drink and soft foods. But hunger reared its head way too often. I have a juicer but I knew that I needed the fiber to make me feel full. All I did was call her up, and its been awhile since I have called her, and she lends me her Vitamix. I feel loved.
Today I had
Creamed Chicken Barley Soup
(very creamed because of the barley)
Carrot Apple Celery Slurry
and a staple of
Greek Yogurt

I think I need to work with the blender more to get the right consistency of things. But I am encouraged! I bought some pineapple, lemons, apples, bananas, squash, beets, oranges and lots more carrots! Gonna try Borscht for the first time. YUM!

Tuesday, October 11, 2011

Unwanted Guest

I remember the day when I first became acquainted with my unwanted guest. I was in the shower and I needed to blow my nose. Easy enough, except after drying my hands to keep from destroying the tissue with water instead of a satisfying nose blow - PAIN. It lasted a second and in retrospect it wasn't all that bad, but "Hello Friend!" And my unwanted guest was here for a very long stay. My first season of pain lasted about nine months. The pain was tolerable and I was willing to wait for my body to heal itself from whatever this was going on. Nine years later the pain and duration have increased greatly. Now my guest is a seemingly permanent resident, not willing to leave. He wants to be in charge, dictating how I live my life. I fight him sometimes with more success than other times, but I am still fighting. So I am asking you dear reader to join me in this fight. Maybe you know me and maybe you don't. Maybe you have your own fight and its just good to know there is someone else fighting. Or maybe you do know me and would just like to have a better understanding of me, of what I am thinking, or of what this is all about. For me... sometimes I want to explode because this is so much a part of me and I need a way to get it out. So if writing here allows me an escape, then I am thankful.