Medical State of the Union and Sheer Will...

Looking for balance, finding peace...and walking with the Beauty.

It seems only appropriate that with January done, I spend a little time talking about my health. It was the primary reason I started writing this blog, my chance to explain and define for everyone where my life had taken me! So I call this post my

Medical State of the Union

.  It's something about being from DC, every January means the State of the Union address. My friend, Andy a couple of years ago told me I needed to "speak my truth" about my health. My first reporting was the hardest most gut wrenching post I have ever written. (

The Real Scoop...


Two years later, I'm blessed and amazed to see how far I have come, to realize that my life is so much better. I'm happy to report; this State of the Union, won't be hard. Not that my life is perfect, but my health is far better, my life happier, lighter and full of more joy.

Officially, I have called Santa Barbara home for just three months; while I'm still unearthing boxes, we have certainly started to feel like we are "settled".  The holidays were filled with tons of entertaining, Jeff's entire family is here in California, so we hosted the West Coast family for several dinners and celebrations.  My mom visited during this time from DC and it was wonderful to have my slice of home here a midst the celebrations and chaos.  As we settle into the "Winter" filled with sunshine and 75 degree days; my life has quieted enough to really offer some news on where my health finds me.

First and foremost, I'm better than I was a year ago. That is for sure. My doctors at NIH are always asking me to describe, "how much better?" I find that impossible to really quantify. What I feel comfortable saying is that moving West has been the best thing for my health.  Simply... it's warmer. Do I still have cold events? YES. Still almost everyday? YES. But my drug regime coupled with the constantly warmer temps have changed the quality of my life. The warmer weather has kept me from having the issues with anaphylaxis that haunted me for years. I didn't really realize till I arrived that I have forever been cold, in my bones, possibly in my soul.  I find myself sitting outside as often as possible for the Vitamin D and just the ability to feel the warmth. While it may be hard to describe to people who don't suffer from this disease, but imagine if you just walked around taking a cold shower all the time... It's that chill, where you can't get warm that has been my struggle. Since arriving, my cold attacks aren't nearly as severe. Small attacks that would have had me coughing and wheezing now seem to have the effect of a bee sting: itching, hiving and uncomfortable but without the follow on nausea, aches, coughing and inability to get out of bed the day after.

I still have had several nasty attacks, just not with the frequency or intensity of the East Coast versions.

Which gets me back to where I should have started. No, I'm not in remission. No, I'm not even close. I have a serious, currently better managed; at time life threatening disease. This is mine and I can't change it. But what I have done is not let it define the outcome of my life.

Sheer will should be my new mantra.

Many people have contacted me to ask, "How do you do it?"  My simple answer is: I don't have a choice.  Or after more thought, I think it is more than that. Basically, I don't like the other options. And I doubt you do either.

We manage our health, with our choices. I think every week, what is the most important thing I'm doing, where do I need to be?  Can I call in, can I miss this, can someone else drive me if I need meds?

We tell our Beauties everyday, "You can't do it all." AND if we are being honest, if we don't do as we say, what message does that send to our children?  Why are we killing ourselves for activities, organizations and events that are not critical or crucial to our happiness?

Or as my dear friend Mick (OK we have never met) reminds me: "You can't always get what you want... But if you try sometime, you find. 

You get what you need."

So that is my message to all of us: my fellow chronic disease warriors, my loves with mental health struggles, medical issues, my other dear ones battling other challenges that we just flipping didn't see coming.

You have to own this struggle, whatever yours is, be it this disease, this challenge in your life, you don't have to like it... HELL NO; but you need to own it and not give it the power to own you. Manage it, keep an eye on it, treat it, but don't let it overtake you or define you.

And for the record, SHEER WILL will only take you so far as the men in my life are apt to remind me.

I thought when I moved, the two most influential men in my life would be separated. My husband and my doctor. But, they still manage to conspire even in their separation.

My dearest Doctor, aka Harvard, always shakes his head when I tell him I struggle with balance... "You think!?"  After all these years, he can tell if I'm behaving by my voice on the phone, or when he would see me in person, just one look at me, drop his head and say, "Please take it easy."

Harvard reminds me in a text message just this week, "Jeff, Ian and Norah need you healthy not sick."

Fair point. Well said Harvard.

Jeffrey is a little more direct and always challenges me when he sees me burning the candle at both ends. He reminds me, "You know where this is going, you can either slow down; climb in bed with the remote and take it easy;  OR you can keep this up and your body will decide for you. And we both know when your body decides, you like that even less."

Or even this morning,  I didn't wake and Jeffrey didn't wake me,  I woke with a start hearing the Beauties heading out the front door for school. What Mom oversleeps when her Beauties are headed to school? This one does apparently, when she is exhausted! I jumped out of bed, raced for the door, standing like a sleepy toddler with my bad breath and bed head, all that I was missing was a stuffed animal under my arm... while the Beauties each gave me a quick hug and all suggested I return to bed! Which I did for another three hours!

Balance... I'm working on it...

These two men are so flipping smart it's IRRITATING. That they are correct, yet again...

(This post is going to be printed and laminated and held over my head for a lifetime!) These two men in my life...

So there you have it, the State of the Union is super strong! Balance aside, more great days than lousy! I'm happy, healthy and eager to report on my good news! As you review your State of the Union, please keep in mind that you are the center of you family's world. And while we may have different struggles, I hope you see the take a ways are the same.

We are all works in progress; we all have struggles; and many of us are working on finding just the right balance. The journey continues....



The PilgrimageGal

Photo credit: Mr. PilgrimageGal

The Many Faces of Pain...

Ecstasy of Saint Teresa,

1647–1652 Cornaro Chapel, Santa Maria della Vittoria, Rome

photo credit:





We all face pain in our life, the stub toe on the way to work, the toothache that won’t quiet and the countless skinned knee from childhood play.

But some pain is not so fleeting… For some it’s the emotional pain that just can’t be righted, that dark hole that can’t be scaled, still for others it’s the relationship that can’t be fixed and the hearts that will be broken in its wake. 

Or the loss of love, be it the pain of a child, whose dreams weren't realized; or your life long coffee and dance partner, your bed now cold, never to feel their warmth again. 

This is  the real pain that so many face daily… We pass them at the store, getting coffee or at the bank. For years, we sit with them in church or beside them at a football games, never comprehended their pain… So many of us are unable to reach out, make connections, we pass the same faces every day and touch so few… 

Or we suffer and feel no peace…

I feel pain today and it shows… 

It was supposed to be a special day off with the kids, we had shamrock chocolates to make and leprechaun cookies with special “irish” sugar, but it won’t be… I had to call my Irish Soul-Sister 


 The girl next door, at 8am and say I need you for five. I need her help putting a pain patch on my back. My ISS was there before the phone touched the cradle.

My ISS, well she can’t hide it from me, her face showed the worry of  watching my face illuminated in pain. We have been through it all in the last years… We know the shorthand of each another. It’s the voice, the way she runs her hands to her hair, when she can no longer take another thing, everyone else misses it, but I know it. We feel each other’s weak spots. One look and we can guess the struggle. We know the places to guard and never surrender. We know each other’s hidden stories. Women have this for one another. Maybe it’s the centuries of our men off at war, while the women raise, run, and protect civilization…We just love… And that is why pain will not overrun us.

This body, my body, is weak and broken. It hurts just to breath, much less move, it hurts to talk, to raise my voice to its normal sparkle… I’m so hoarse, from inflammation, from pain… I’m on my couch, with the sunshine warm on my face, and the sun also warms my soul and reminds me that we must continue, there is no retreat...

My Beauties can see it today, too.  They sense it and see me struggle. My beautiful children watch with eagle eyes, while I put a Mom smile on  just for them.  When you see the worry look on adults, you can rationalize, educate and teach… 

Not so with your Beauties…. They see a broken parent, and it is scary, and I know, because I lived it…  I watched my father die, I watched my mother fight a brain tumor, and lots of other scary things… Through it all,  I always, always understood when it was really bad... Children are far more intuitive than we give them credit.  

My sweet dear Irish Prince, he starts to act-out and gets a little or a lot fresh. He panics. He has such anxiety.  He then over compensates and wants to tuck me-in, kiss and bless my forehead, and I get a well-powered remote. “Rest mom, watch TV, it will be fine”,  it’s his own home-spun mantra, I can hear him self-sooth, “Rest mom,  watch a little TV,  drink a diet coke, you’re going to be fine, watch TV, and nap”. 

My Princess, she wants to fix, dust, vacuum, and do the laundry… My girl is 7, far too young to take-on the household, but she just wants to keep busy, very, very busy. I can’t think of a woman alive who has not perfected this skill… Stay busy and I won’t notice that the entire world just blew-up. My sweet little girl... she holds it together, until God bless her she can't. Then she is in a puddle on the floor crying... and I scoop her up, and snuggle her in my bed... 

One of my favorite Mystics and Doctors of the Church (what I wouldn't give to have a glass of scotch and talk to her  about the conclave.) is Saint Teresa of Avila. She said and I’m paraphrasing a bit, “pain isn't permanent”. But, she also said to God, “if this is how you treat your friends; it’s no wonder you have so few”.

Seriously, she is going to be a drinking buddy when I get to heaven. St. Teresa, she always gives me hope, I know she has had some good chats with God.

Whenever I’m really sick, or things have gotten a wee bit tricky, inevitably someone pulls out the Hallmark Card God line, “God never gives you more than you can handle.” 

But, sometimes, I’m not so sure…

I'm  overwhelmingly blessed,  I have faith, a husband, family (biological) and the friends who are even greater family and a support system that won't quit... He hasn't given me too much... 

But for some it is too much. For some beautiful souls, well it takes them. Their hearts were too big for their bodies, the pain was too great.  We all know these souls, we have watched them suffer for years of depression, or substance abuse or whatever prevented them from being present with us… to live this life… it overwhelmed them, like a wave coming ashore.

And yet some of us; we don’t go under. Don’t get pulled under by the wave. Why? I think, some of us are able to protect our big hearts outside of our bodies… We are able to open our arms and risk the pain. We are able to see, touch, embrace the gifts we are given.  The Gift of each other… Its more than community, it's our relationships within that community.

That is the gift. We can chose to embrace it, let the ones who love us in… really in… 

Or we can choose to attempt the fight.  Chose to fight, all alone and be in isolation. 

We have the choice…

It is not easy, it is uncomfortable, it is at times very painful… And that is what makes the journey one of hopefulness, of courage, of strength… 

Have we touched, moved and given, who we really are?… These are the ideas, the stories that live long after we do… The life we lead, the people we love… The souls we touch… 

That is the real truth of why pain isn't permanent… But love… Yes, love.

Love is everlasting…