I feel an urgency

I feel an urgency to get more posts done.  As I go through the numerous memories as I chose what to write about my heart goes out to all of you in the midst of severe pain; whether in your face, arm, or any body part, I can only hope my posts and resources will help you....today.

What About the Spouse Part 2 Who to Blame

The big day comes.  After months of preparation your heart is thumping in expectation of your amazing future with your soon to be spouse.  Walking down the isle is exhilarating as the music plays and smiles are coming from every direction as your friends and loved ones look on to support you in this big step.

The wedding takes place and all the hopes and dreams for your future seem so close.  The honeymoon, the first year of love and getting to know each other.

But, then at some point tragedy hits when pain starts to radiate across your loved one face.  Smiles turn to cries of pain.  Joy and hope seem to fade away slowly.  What happened to all the plans for the future?

This is not what you thought life would be like.  This is not the future you had planned.

So, now what.

The questions follow -

How did this happen?
When did this start?
Why?
Who did this to my loved one?
Will my spouse ever get better?

I think we all want to find someone to blame.  Was it a doctor?  Was it a car wreck?  Who did this to my beloved?

But, sometimes we can't find the answers.  Sometimes there is no one to blame.

What if we can find the person who caused it?  What would we do?  What would we say to them?

I knew who caused my husband's pain.  It was a doctor.  It was his fault.  He robbed years of our life together.  Because of his mistake my husband suffered for years with the most excruciating pain known to man.  I lost my husband.  He was swallowed by pain and there I was, alone.  I had no one to help me with the kids.  I had no one to comfort me.  I had no one to hold me.  I had no one to kiss me. My husband was alive, but not there.

Yes, I found someone to blame.  It was the doctor.

The anger welled up inside me.  Oh, how I wanted to go to that doctor and let him know what he had done.  But, I didn't.  Instead I did something even harder, I forgave him.

Forgive.

Forgive the doctor.

Forgive yourself.

Forgive your spouse.

Set yourself free from the anger caused by Pain.

It has stolen enough from you.

If you don't have anyone to blame.  You can't find the cause you still need to forgive.  Forgive. Let go of the anger.

The sadness and disappointment might stay.  The sorrow and loneliness may linger.  But the anger will go and you can be set free to love your spouse and help them.

Be free.

Hope for a better day.

My husband is much better now.  Years of pain and suffering are in the past.  He had five surgeries which I will explain them all in future posts.  But for now, I want to make sure you know there is hope. 

The side of Shae's head is mostly numb now.  He can feel the twitching of the pain in his jaw but no pain.  The side effects are numerous but still better than the pain.

Much better than the pain.

The middle years of suffering with Trigeminal Neuralgia

In previous posts I referenced what it was like during the early years of TN.  There was much uncertainty, fear, sadness, anger, frustration, prayer, and a general feeling of unfairness.

We didn't have a diagnosis so the continual trips to the doctor got exceptionally wearisome.

Then finally, a doctor was able to diagnose Shae with TN.

It had a name.  That may sound silly, but just to finally know what was wrong was such a relief.  Now, we could combat this nasty sickness, now that it had a name.

A wonderful VA dentist gave Shae a mandibular block to see if it would stop the pain.  Sure enough he had relief, even though it was short.  That helped the doctors to pin point to origin of the pain.  Obviously it was in the jaw, at the point of the wisdom tooth extraction.

Now, most TN is caused by a nerve rubbing an artery in the brain.  Shae did not have a typical case, but is there much that is truly typical in this world anymore?

I spent most of my free time learning everything I could about TN.  Who knew there were three branches of nerves in the side of the face?  Not me!

"Because of lack of knowledge My people perish."  God.

We sought knowledge about TN.  Now there is a website that can help you if you are in that knowledge seeking process right now.  http://www.fpa-support.org/

There are many procedures out there that can help TN sufferers.

Shae had:

• a glycerol injection
• radio frequency surgery
• balloon compression
• balloon compression
• brain surgery

Now, there are even more options for TN sufferers.  Be sure to research.  You must take care of you.  Doctors have hundreds of patients, you only have one...you.

We always got copies of all records every time we went to a doctor.  We kept them with us and brought them to the next doctor.

During these years of "research", Shae plugged on.  He learned what helped and what didn't. 

The wind would trigger pain.
Talking would trigger pain.
Eating would trigger pain.
Drinking would trigger pain.
Brushing teeth was brutal.

Pretty much anything triggered pain.

And so went the middle years......

What about the spouse? Part 1 Happiness Lost

I don't want to draw attention to myself.  I wasn't the one in pain.  Shae needed all the attention.  It was about him.  I don't need pity or want to seem selfish, yet I must bring up that the spouse of someone with a severe illness needs to be acknowledged.

It is hard to see a loved one in so much pain.  I watched him struggle day after day.  I remembered the hope I had for our life.  I had hope of happiness and good times; a young couple ready to take on all life brought to us.  Yet, the last thing we expected was Trigeminal Neuralgia.

In sickness and in health.

Could our marriage survive this?

Can you believe that my love for my hurting spouse actually grew ever day?  It did.  And, I hope to share with you, over the next months, exactly how we both over came the horrendous disorder.

Roller Coaster From Hell

You know the anticipation you feel as the roller coaster you reluctantly got on begins the ascent to what is about to be shear terror on the other side?

Tick, tick, tick, the track slowly pulls you to the peak.

Upon arrival it seems like the world has come to an end until it plunges you over the side into a chaotic rush of turns, thrusts, jolts, and lunges...

Until finally, it begins to slow down and then......stops.  Until the next time, you get on.

So is the life of a new Trigeminal Neuralgia sufferer.  Slowly the pain comes on.  A little twinge here, a little twinge there.  It might last five seconds and then be gone for ten minutes.

It progresses to 30 seconds long every 5 minutes until it reaches its peak, non-stop pain.  A horrible state a electricity type pain throbbing through every thought and movement.

Shae never new how long this roller coaster ride would last.

A few days

A few weeks

A few months

A few years

Only by God's grace could he have hope that it would end, and soon.

And then the slow decent and final stop where the pain would subside and go into a remission that might last weeks or maybe a few months.

Later in his TN disorder, the pain did not slow down, did not stop, but continued on for four years with very little relief.

Hope - he is well now.  For good.

Too much well meaning advice

"Have you looked into TMJ?"

"What about an Ear Nose and Throat doctor?"

"Try a splint."

"You really need to go to this incredible doctor that I've heard does amazing things for his patients."


When someone is ill, it seems everyone has an opinion or a solution to the problem.  Most people are well meaning in their advice, but often times that same advice is more harmful than helpful. 

If you have Trigeminal Neuralgia you know what I mean. 

We learned to thank everyone for their helpful advice and we would look into it and discuss it.  We truly meant it, too.  But, most of the advice we received we did not do.  It's not that we are closed minded or don't receive counsel, it is just that most people, unless you have had this condition or had a long term pain disorder just don't understand and really don't know what they are talking about.  I hope that doesn't sound rude, it is just the truth.

But, what if someone gave good advice?  What if that one person we come into contact with actually has something helpful to say?

I encourage you to listen to people as they try to help you, be polite, and then decide if their advice if for you or not.