Sunday, February 25, 2018

What I Said when Given 5 Minutes to Speak on Rare Disease Day

Published on The Mighty!

I was given 5 minutes to speak on Rare Disease Day in Washington DC on February 28th. Having had a piece of art accepted into the Rare Disease Artist Exhibition, my award included a chance to express myself in person. But, living with a rare disease and in the midst of recovery from a recent flare that literally knocked me flat, I was unable to participate in person. Thankfully, they made an accommodation and allowed my dear friend Irene to speak on my behalf. This is what I wrote for her to share…these are my words…

I live with several rare conditions (dysautonomia, adrenal insufficiency, and an undiagnosed neuromuscular/autoimmune disease among other diagnoses) which makes me a zebra in a horse world. But I choose to take that a step further – in my case, with the number of rare diseases I have, I choose to think of myself as a Zebra Unicorn!

Why unicorn?

Simple – my chronic illnesses come with a gift. In the wake of a traumatic brain injury that changed my life almost exactly 7 years ago, I suddenly developed the ability to paint. It happened overnight. Thus, I am one of 70 officially tracked acquired savants in the world. With the insatiable desire to express myself through the language of color, I later learned that this was synesthesia.

While the brain injury came with certain gifts, it also came with a variety of chronic illnesses. As a former strategist in home health and hospice, disease management is near and dear to my heart. And yet the lack of training in rare diseases throughout the medical community, along with the assumptions that physicians make, is a significant – even life threatening – problem.

Imagine the terror of going to the ER for life saving treatment only to be counseled on opiate seeking behavior, then told there was nothing wrong with you. It happened to me. I arrived in the Emergency Room via Ambulance on Christmas Eve in 2016 with a second episode of acute abdominal pain over the course of 2 weeks. I had confirmed adrenal insufficiency. I was passing out from the pain. I told the ER doctor that this could be Adrenal Insufficiency. He not only insisted that it wasn’t, but refused to run my cortisol, refused my emergency injection, and instead ordered a CT with Dialadid for pain. I am lucky I didn’t die that night. This is life with rare disease.

Living with rare disease can mean going decades without knowing what is wrong. As we persist, we are told that we need psychiatric evaluations, or to increase our pain tolerance, or to simply move on with life because there is nothing more that can be done. But the truth is that we have reached the limits of that physician’s knowledge – or their curiosity – or even the knowledge of the medical community in general.

Why am I saying all of this? Two reasons.

First, those of us who have any kind of a rare condition face a brutal uphill battle in the medical world. When I asked others what I should communicate on Rare Disease Day, the most important thing that they communicated was a plea to believe us. Take our symptoms seriously, treat us with curiosity, keep searching for answers and best practices, don’t give up on us, and please avoid trying to fit us into diagnostic boxes that simply don’t suit the zebra unicorns of the rare disease world.

But there is a second reason…

The human spirit is resilient. And within the rare disease community there is a depth of courage and persistence that is remarkable. Out of great suffering comes perseverance and hope. And in my case, the gift of art is well worth the difficulty imposed by life with chronic illness.

So my hope on Rare Disease Day is this – To all of those in the medical community who are willing to listen, PLEASE embrace the issue of rare disease with the same courage and perseverance that we embrace our daily lives. And to the Zebra Unicorns out there…Keep walking! You are not alone.

"If They Could Only Talk (They Can)"
Mixed Media on Wood
Original Art by Heather Thompson, Blue Phoenix Art

Thursday, February 22, 2018

Warming Hands - Meet Brian

Today my boyfriend and I stopped by the grocery store and I saw a man quietly flying a sign saying "anything helps." I stopped to say hi and ask what he needed...I've learned never to make assumptions, yet I anticipated it would be a request for food or a sleeping bag. Instead he told me about his DREAM of hand warmers.

I quickly introduced myself. He told me his name was Brian. Then he went on to describe how he stayed warm last night in a tent in the woods next to the Issaquah Transit Center...He placed his remaining hand warmers inside his sleeping bag. And when he awoke to snow, he was grateful to have that tiny bit of warmth. But he was more hand warmers and night was approaching.
It's cold outside...lose your fingers and death cold...Fulfilling this need was simple and definitely a basic human need. We went to Target, got three bags of hand warmers, and brought them back to our new friend Brian.

My boyfriend added some extra warm gloves and a hat that he had in his truck...and you should have seen the reaction!  Pure gratitude...astonished...hopeful...amazed...all three of us :)
This Lent I've been contemplating HOPE.  I've also been considering the question posed by Claire of Assisi....can you look into the face of suffering and not walk away?  Today fulfilled both of those things...And it was so simple....just a quick "Hello!"

This is why the homeless are my teachers. I learned alot today.

Tuesday, February 20, 2018

Will i Get back in the Saddle Soon?

Maybe, just maybe, I will get back on my BIG warhorse by mid-march. Humility is being willing to WORK for the things that matter most, yet allowing it to happen in God's time. And frankly, this climb back has been among the most difficult of my life...only second to the immediate aftermath of the TBI.

Getting back on my horse requires PATIENCE. Today I had another therapy ride on Stella (trainer's horse), and I have been SLOWLY building stamina with Harvey...walking, tacking and grooming...but I haven't ridden him since JULY.

See, when you are rehabbing a human the same way you rehab a horse, you take your freaking time...lest I drop back into a crash. Nope! Harvey got new shoes today. He gets his big steroid injection Friday. A little extra training time to integrate the steroid....And then it's game on.

Sunday, February 18, 2018

Daring to HOPE this Lent

I've been meditating on HOPE this Lent. Hope feels scary...especially as good things are coming together including new potential treatments for HEALING.  But then I read a Lenten meditation by Richard Rohr and it changed my entire outlook. Here it is....

"It seems that we need beginnings...Today you must pray for the desire to desire! Even if you do not feel it yet, ask for a new and even unknown desires...for you will eventually get what you really desire! I promise you. It is the Holy Spirit doing the desiring at your deepest level.

Therefore you will get nothing less than what you really desire, and almost surely much more.

Remember...YOU are the DESIRING of GOD.
God desires through you and longs for life and love through you and in you.

Make your deep and hidden desire conscious, deliberate, and wholehearted. Make your desires good and far-reaching.

You could not have such desires if God had not already desired them first in you and for you and as you.

Remember finally that like the ashes created from Palm Sunday, NEW BEGINNINGS invariably come from old false things that are allowed to die."

Richard Rohr

Thursday, February 15, 2018

Healing - Before and After Photo

I'm consistently amazed at the changes that are visible as I heal!  

Just look at these side by side pictures taken 8 months apart.  

I took the first photograph (on the left) to capture my progress as I was healing from repeated episodes of Adrenal Crisis over the prior winter.  I remember being hard on myself because I had gained a lot of weight due to the relatively high dose of corticosteroids that were keeping me from crashing. That said, I had resumed riding my horse and I genuinely thought that I was on the road to recovery when this photo was taken.  

But then I crashed again.  Acute flank pain suddenly appeared one day in August of 2017, and I didn't get relief for several months.  It stumped the doctors. I was repeatedly hospitalized and ultimately sent to the Mayo Clinic for in-depth assessment. I can't describe how terrible the pain was, other than to say that it felt like I had a machete in one side and a chainsaw on the other.  There were days when it was worse than childbirth, and my blood pressure showed it. I would try to tough it out, but then my BP would run into dangerous territory.  Honestly, I had never experienced anything like it. 

While at the Mayo Clinic I was given ultra-high dose solumedrol and FINALLY the pain was gone. To this day, no one knows why it worked, but I have assembled an amazing team of physicians that are working diligently to figure out the medical mystery. And just for this moment, I have no pain!  My inflammation is going down, my energy is improving, and I am building stamina back into my life.

Thus, I paused for a moment yesterday to reflect...and i can see the healing. Lighting and wrinkles aside (that doesn't matter to me), it's the look on my face that tells me how sick I was just before the crash...And I had no idea!

When I look at the scale, it's easy for me to see how much weight I have gained since all of this started (it's a lot).  But when I look at these pictures, I see something different - I see actual healing from the inside out.  All too often I find that it's easy to fall into the trap of wanting my outsides to look good so that I can feel like I am back to "normal" (whatever that means).  Increasingly, though, I am realizing that this healing journey happens from the inside out...and when it's shows.

Monday, February 12, 2018

Some Thoughts on Marketing

It's been 7 years since I have written about marketing. My TBI was March 6, 2011. Today I synthesized a very simple statement that is in line with the things I used to discuss in keynotes and with clients, but I suppose now I've DEEPENED my understanding of how it all works....

So the universal question is...How do I market my business effectively?

My answer is simple (but incredibly challenging in practice). Do good. Be kind. Practice the golden rule. Give more than you receive. Start with empathy. Do this AT ALL LEVELS. Be willing to make the hard decisions to let this be the core of your business. 

As an example....I know of an organization I know that says "extraordinary caring" in giant banners across every building....yet the patient experience is often one of "efficiency first."  This WILL NOT work.

So if you feel mystified by marketing and growth strategy remember that the basics...the roots...are what make marketing effective.

Saturday, February 10, 2018

New Art! "WOMAN. Embodied. Free."

New Art!

I am a WOMAN.
I am not defined by...
The span of my hips
The width of my waist
The size of my ass
The girth of my belly.


I am a WOMAN.
Born into the fullness of life.
Ever expanding and contracting
From my innermost depths
To my outermost layers
Fluid surrender.

I am a WOMAN.
Darkness AND light
Fractal Earth, Galaxies Universe
Magnificently manifested
Energetic multidimensionality
In human form.

I am a WOMAN.

Original art and poetry
by Heather Thompson Blue Phoenix Art
48 x 48

PM for purchase information

Friday, February 9, 2018

My Hopes and Fears for Setting Goals While Living With Chronic Illness

Published in The Mighty

I just set three big goals. Some of my loved ones might say, “Good job!” Others might caution me, “Slow down.” Yet here I am, with hope and fear in my heart, as I dare to speak my intentions.

You might be wondering why I am nervous… after all, goals are supposed to be helpful, right? For some this might be true, but for others (like me) it can be a little more complicated.

Let me begin with a bit of context.

I live with several chronic illnesses including adrenal insufficiency, migraines and pituitary dysfunction (among other issues) after a traumatic brain injury that changed my life in 2011. I am a single parent to an amazing kiddo, and she is my absolute priority. Every day is a marathon, but we do it… quite well actually! See, I’ve had to climb back from crashes or flares so many times since the TBI seven years ago that you would think I’d be an old hat at this. Honestly, I thought I was… until last summer… and this has been one heck of a crash.

Sudden acute flank pain hit me so hard at the beginning of August 2017 that they thought I was passing a kidney stone. This pain arrived with a bang, and was unrelenting. Fast forward to October, and the pain was still there. It wasn’t until I received a massive infusion of ultra high dose prednisone that it finally went away… only to come back in December… with another round of prednisone… and a bunch of mystified doctors. We are still trying to diagnose the problem.

In the midst of the diagnostic process (which continues to this day), I have been slowly improving. An amazing medical team has been working to help me walk out of this, even in the midst of the unknown, focusing on what we know we can treat and continuing to gently pursue the cause of the acute pain. It’s been a very intentional walk out of a very difficult space. No one can fully appreciate what it means to have this kind of a flare, until you experience it yourself.

At this moment, I am pain-free! I don’t know how long it will last, nor can I be certain that I won’t “overdo it” at some point… but this is where I have fundamentally changed my outlook. I am no longer afraid of flares/crashes, because I am finally learning to trust myself!

I cannot predict the future, and I can’t live in fear of what might happen. Living with chronic illness means taking each moment as it comes, while engaging in deep listening to my body and trusting that I will take any necessary actions to practice good self-care. Oh my, this has been years in the making!

So that brings me back to the goals that I discussed at the beginning. They are scary and bold and wonderful… and again… I feel both hope and fear as I state them out loud.

1. Get back on my horse Harvey. I haven’t ridden him since July. Recently, I got on my trainer’s horse in preparation for Harvey… but I have a great deal of ground work to do in order to safely get back on my big boy.

2. Visit my dad. He has created a beautiful space where hummingbirds come right up to his balcony. My daughter and I hope to venture to his sunny home very soon… I even made plans to do it!

3. Big goal: Take my daughter back to Hawaii. We have booked and cancelled this trip many times over the last few years. But yesterday, I booked the tickets, and dared to set forth the intention. All of my doctors know this is my goal.

While I trust myself to handle whatever comes my way, I was aware as I pushed the “purchase tickets” button that I am scared of my body letting me down, or that I might over-exert myself before I am ready. But then I came up with a plan. I bought insurance that will allow me to get a full refund if I cancel – this allows me to listen to my body up until the day of the trip. And if I am not quite ready, then I will simply push it out a few months.

In my former life, before the brain injury, I used goals to force myself into action. Frankly, I abused myself with goals (including developing an eating disorder). No more. Goals are no longer a tool for restriction and measurement; rather, they are now a means by which I express my deepest heartfelt desires… and then I let go of the outcome. This is the paradox that must be held gently and lovingly, even though it is incredibly difficult!

I am constantly reminded by my friends to “lift up my legs and float.” So be it!