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. (
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....
Photo credit: Mr. PilgrimageGal