3 Things YOU Need To Know About Trigeminal Neuralgia: My Husband's Story

A while back, whilst working in Oregon, my husband, in agonizing pain, took himself to the emergency room at the local hospital. 

He had just suffered a severe burn, about 5 x3 inches, on his stomach. (How that happened, is a story for another time.)

The attending doctor asked him to rate his pain. He rated it an 8/10 on the pain scale. 

She was very surprised as she said she would have  expected a 10/10 and tells male patients, that this type of second degree burn is the worst pain they will ever experience. 

She added, 

"But having seen from your medical history, that you've had trigeminal neuralgia, I now know you've experienced worse pain than any burn like this could give you." 

Her comment was shocking. Not just because she was one of the few ER doctors who has heard of trigeminal neuralgia, but also because she re iterated, what sadly, we know: there is no known pain worse than that associated with trigeminal neuralgia…... 

The Guide to Thriving Beyond the Crises in your Life: 4 Effective Steps

It's not just tea that revives you

As a spouse, parent and caregiver I have been on hyper-alert for 5 years.

Why?

It’s because my family is very good at having serious medical conditions with unpronounceable names.

My husband was first diagnosed with trigeminal neuralgia in 2008. And if trigeminal neuralgia wasn’t difficult enough to say and remember, in 2009, our oldest son Benjy won the prize. 

He was diagnosed with a heart condition called Wolff Parkinson White with supraventricular tachycardia. (Try saying that a few times, very quickly.) This condition is sometimes connected with sudden death. Benjy's version of this syndrome meant that he needed two heart surgeries, between January and April  2010. 

My husband had invasive brain surgery ( MVD) for his trigeminal neuralgia in 2011. You can see why I might live on high alert!

Living on hyper-alert puts you in survival mode. You are either waiting for a symptom to show itself, in the midst of an attack, or recovering from the fallout:

6 Ways to Build Certainty in an Uncertain World.

Last week I talked about how routine brings comfort. Routines are regular procedures we create to give us structure and rhythm in our day.

This week's post explores the value of certainty in our lives. Unlike routines it brings comfort by existing outside of our life structure.


Benjamin Franklin famously said, "Certainty? But in the world nothing can be said to be certain except death and taxes.”

 I like to think there is more certainty than that in the world.......

I Wouldn't Choose This Lens, But It Has Sharpened The Image. Here's Why.

We are vacationing in Israel. Today we visited Machane Yehudah, the food market in Jerusalem. If you've ever stepped inside you might be wondering why on earth we would venture there on the eve of Passover, when we didn't need to shop. 

But it was precisely the chaos of it that drew us into the fray...... 

7 Ways to Help a Child Deal with a Parent Being Seriously Sick

My 12 year old son Jacob, has been inspired to start his own blog. This is a post he wrote for it, without help of any kind. He wants adults to know how they can help children like him, who suddenly find themselves in a situation where someone they love very much is very sick and has to have major surgery. 

He also wants to bring comfort to other children by letting them know they are not alone in having these feelings. 

If you would like more information about Jacob's blog, please email me at gilly@bringingbooksofcomfort.org or leave a message for him below! -Gilly

About a year ago, my dad had something called Trigeminal Neuralgia. He had something going on with a nerve in his face, and had to have brain surgery. 

As an 11 year old child, I was scared. 

I couldn’t handle it on my own. I needed some things to help me feel better:

What a Crisis Can Teach Us About Celebrating.

About six years ago I was sitting at a red light muttering to myself.  

No, I did not need to be referred to an asylum. But I had been getting myself very worked up about an upcoming birthday party for my almost 6 year old. (Jacob)

The endless to do list was swirling in my head as I remonstrated with myself  about planning a party for 18 kindergarteners in my house in a particularly snowy December. As I pulled up to those traffic lights, I was stressing about the weather and the games, party gifts, food and home made birthday cake.

And while that nagging voice continued, I suddenly had an epiphany.........

Snow - How to Find a New Perspective on an Old Problem.

Snowy Elstree, UK by Sara E via FB

I want to introduce you to my friend Jo who lives in England. Jo's husband is in his 70s and has had trigeminal neuralgia* for 7 years.  Jo and I 'met' when she stumbled upon my blog. We have emailed back and forth and I have certainly gained strength, insight and tremendous support from my new pen pal and our growing virtual friendship. 

One of the things we have discussed a number of times,

Do You Ever Feel That Life's Unfair?

Eight years ago, my very close friend was diagnosed with stage IIIC breast cancer at the age of 39. Her 3 daughters were all under the age of 7 at the time. She went to a support group for breast cancer survivors. Expecting unqualified support and upbeat messages at the first meeting, she was very surprised by what the facilitator had to say. Her message that day, and I paraphrase, was this:-

A Patient's Top Ten Tips For Surviving A Long Hospital Stay

Many of you will remember that my husband Jonny was rushed to hospital this time last year. He had been suffering a resurgence of an extremely painful facial nerve condition called **trigeminal neuralgia that had spiraled out of control. His medications had stopped working.

The internist couldn't find new meds to control the pain.

The neurologist was out of ideas for treating it. 

And  Carol the Physician's Assistant to one of the finest neurosurgeons in the world at Johns' Hopkins Trigeminal Neuralgia center was at her wits end. 

Waiting Versus Patience - Lessons From A Labyrinth

We often use the  words waiting and  being patient  interchangeably. We wait on the phone for a real live person and are thanked for our patience. We ask our children to wait for us to get off the phone and ask them to be patient. We wait at lights, at the doctor's office and in line at the bank and all these things certainly try our patience! 

This week I learned how different they can be as I had the opportunity to revisit a labyrinth. 

The Jigsaw Puzzle Of Life

There is nothing like sudden or unpredictable illness to throw you off kilter. In the tightly packed, fast paced lives we lead, there is little room for a throat infection, a virus, a broken limb or something more sinister. And yet when it happens, with no choice but to accommodate it, you make room for that illness in your lives and adapt.

A Year In Review - Check Your GPS!

Have you ever wondered if you have been running round in circles? Not really moving forward in your life metaphorically, spiritually, emotionally, professionally, academically, actually?

Back at the start of  December 2011, three weeks after Jonny's brain surgery I was  reflecting  on how small our world had shrunk since Jonny's illness had returned in August of that year.

No Job Description- Caregiving Part 1: Search and Rescue

Harry Potter World, August 2011

Almost one year ago exactly, Jonny began a new battle with Trigeminal Neuralgia*(TN). One year on and 2 surgeries later, Jonny's pain is very much  under control.  From this positive vantage point I have now begun to reflect back on how we coped during  those frightening unpredictable first days and weeks. In particular I have been ruminating on how I learned the ropes of my new  job as caregiver, a job that like Jonny’s illness was thrust unceremoniously and without notice on     me.

A Mile In My Shoes - update

About 5 weeks ago I wrote a post called How Do You Cope? This was part of a Coping Carnival initiated by a blogger Rebecca at her site Here Come The Girls. A few days ago she published a link to my post along with 5 other bloggers' links about how different people cope with the challenges in their lives.

These stories are stories of struggle, survival and joyful living in the face of great challenges.They are truly inspiring.

Beach Break -Tales and Tips

Jonny and I are at the beach. It is a cloudless day and we are sitting side by side in low slung beach chairs. We have some shade from an oversized umbrella and our feet are partially buried in the white, clean sand. The sun is bathing us in its warmth and we are watching the waves tumble onto the shore as the Sandpipers hop away from the foamy puddles just in time.

If you feel as though you have read this before, you would be right.

How Do You Cope?

    I am writing this blog  after four days without power in our home, as a result of the most incredible storm on Friday night. It crashed through the Washington DC area, devastating lives, damaging a lot of property and leaving millions of people without power in sweltering 100F weather. One of my friends from out of state texted me asking,

        How are you coping?

Pondering on the Porch

A porch with a view

I have spent a lot of time on our front porch since last August when Jonny's trigeminal neuralgia reared its head again. I planted out my garden to be an oasis, a place to contemplate, breath deeply and slowly,  a haven in which to recharge. (See Rabbit Wars)

Through all four seasons I sat out there drinking gallons of tea, often alone, sometimes making plans with Jonny, regularly chatting with friends. I listened, laughed and lamented about many things.  Often I watched our visitors come for a while and leave again and sometimes I  had a wistful fleeting wish to follow them........

Recovery Part 4-Take A Break

***This is the fourth post in a series about living with and recovering from serious illness. The three previous posts are Recovery-The New Normal, Recovery Part 2- Poem In Your Pocket and Recovery Part 3- What Does Recovery Look Like? ***

 

                              One of the many challenges of being a patient or a dedicated caregiver is that you can’t suddenly wake up one morning and decide you no longer want those roles. It is hard to ensure that the illness that has charged into your life does not define you.

Recovery Part 3 - What Does Recovery Look Like?

***This is the third post in a series about living with and recovering from serious illness. The first post Recovery-The New Normal appeared two weeks ago. The second post Recovery Part 2- Poem In Your Pocket appeared last week.***

 

I really thought I knew what recovery looked like. I started to write about Jonny's recovery from MVD brain surgery, the moment he emerged from the ICU back in early November 2011, until starting this blog in February. I measured it in terms of Celebrating the Small and Big Milestones. I described it as Navigating a Labyrinth, I talked about  Two Steps Forward One Step Back. ( Please see Brainstorming, for all these posts and an explanation of MVD.) I thought I had it down.

Recovery Part 2 –A Poem In Your Pocket

**This is the second post in a series about living with and recovering from serious illness. The first post Recovery-The New Normal appeared last week.**

Today is Poem in your Pocket day. As it is described on poet.org's website, the idea is simple: "select a poem you love during National Poetry Month then carry it with you to share with co-workers, family, and friends."   

So, I got to thinking about which poem I would choose.