MOVING SUCKS!

Okay. I said it. Moving just plain sucks. And if you've got an autoimmune disorder like Lupus, you're almost guaranteed a 'flare,' a painful return to a body that hurts all over (even the skin!) and fatigue that's unrelenting.

While moving from one residence to another does not make America's top ten list of stressors, I believe it should be number 11. The physical toll it has taken on me is immeasurable.

We've moved twice in the past year, plus moved my son into his own apartment in Manhattan - a feat that requires you actually DRIVE a truck in gridlock, dodge taxi cabs and traffic cops, and double park your way to hell, if the reactions of passing motorists, bicyclists, and pedestrians is any indication,

BUT IT'S ALL GOOD! The moves are positive steps in our lives and we are settling in. Twice, now, I've had to look at all my stuff and decide what I want to keep. I use the old trick of thinking if there was a massive fire and I lost every material thing I own, what would I miss the most? It works - sort of.  You still end up in your new place with a lot of junk and fill trash bag upon trash bag of unnecessary things.

We are a lucky nation in that we can possess as many worldly goods as we like or can afford. But as comedian George Carlin said in his famous narrative, "Stuff," we only buy or rent properties to store our stuff; otherwise we could just walk around as is. I wish I could fit all my stuff in one backpack but that would just hold my medications and supplements. Maybe that's all I need?

But, I am blessed. I am so grateful to be able to make this latest move - launching one son into his own apartment (a new stuff collector) and continue our family's trend towards downsizing. With two permanent places to hold our stuff (one in South Carolina and one in New York), I am doubly blessed. And the third location - my son's new apartment - is for his stuff only (even though we get to keep a little of it for storage).  So, damn you, flare. You ain't gonna stop me!

* * * 

Amid all this, many of you know I have launched my first book: DYING TO LIVE: Running backwards through cancer, Lupus, and chronic illness. I have had one book signing event and three more are planned. And I will be on Soul Sista Radio on Monday, July 1, 8pm EST with host Tracey Murphy (www.soulsistaradio.com). I have another radio gig on July 18th with Angela Schaefers of Your Story Matters. Details to follow. The book is selling well and will be available on Kindle very soon. Thank you!

Now, if I could just master this social media marketing stuff!

Illustration courtesy of The Washington Times Communities Section

Crash

The 2004 movie Crash is one of my favorite films. It's innovative take on race relations slamming head on was mind bending and also, to me, numbing.

While I am not going to discuss how diverse groups of people get along (or not) here, I am simply co-opting the word "Crash" to describe how I feel after semi-launching my book and working too many hours on projects on my endless 'to-do' list. Numb and in pain.

As someone with Lupus, fibromyalgia, and a host of life-long side effects from aggressive chemotherapy and other tests and treatments for cancer (in remission), my physical body still crashes every now and then; particularly if I do too much in a short period of time. *Sigh.*

It is not my nature to sit still. I love being busy. I just have to drag my body along sometimes and it's tiring and frustrating. Pity party ends at midnight tonight - no excuses. Promise!

A family member recently became close to complete paralysis due to a fall. He faces at least a year of dragging his body around until he reaches his 'new normal.' I deeply feel his pain as well as his resilience. He will get better because he wants to. It will take time and hard, tiring work.

Motivation is a funny thing. It propels us and, yet, sometimes eludes those of us with chronic illness, particularly of the auto-immune kind. We can never quite understand why our own bodies' chemistry turns against us. I am grateful that this is a prime area of medical study these days, according to my doctors who continue to surprise me with what they are learning and how they are changing treatments for a myriad of diseases.

So 'rah rah' for the immune system today! I will get a shower, eat healthy food and carry on with an important day where I must focus on my son. He is today's priority and the rest of the 'to-do' list will just have to wait.

EXTRA! EXTRA!

EXTRA! EXTRA! Read all about it. My book is now available at this link on Amazon:

DYING TO LIVE: Running backwards through cancer, Lupus and chronic illness

To further entice you to buy the book, here is the printed Foreword written by one of the doctors who saved my life. Thank you!!

Arthur Fass, M.D. M.D., FACC, FACP

Director of Medicine,

Phelps Memorial Hospital

Sleepy Hollow, New York 

FOREWORD

It was a cold, mid-winter Sunday night. The day had passed uneventfully and I was enjoying a quiet day, coasting to completion of my weekend “on-call”.  Little did I realize that the events which were about to unfold would be among the most dramatic and unforgettable of my medical career.

I received a call from an ICU nurse. Over the years I had developed an implicit trust and confidence in the clinical skills and judgment of the ICU nursing staff. Being on the front lines, they have an uncanny ability to distinguish between the routine and the truly emergent. Most calls from the ICU nurses are of a controlled, routine nature. This was not such a call. The voice I heard was anguished, insistent: “We need you right away.” 

A young woman (much younger than the usual ICU patient) was brought to the ICU in critical condition and was deteriorating rapidly. The gravity of the situation was clear: the patient was having difficulty breathing, there was severe swelling of her face and neck, and her vital signs were fading. Making matters worse was the alarming realization that we had no idea what was causing the crisis. She was recently diagnosed with both Lupus and Hodgkin’s Disease and a surgical biopsy had been completed. How these diseases had led to this precarious situation was not at all obvious.

This scenario is the start of a medical drama which plays out over the following weeks and years. For Amy Crohn it was the middle of an agonizing nightmare which would bring her to the brink and back, revealing an unbending will to survive. 

In reliving Amy’s journey we witness all facets of the American health care system. We encounter a medical system capable of life-saving interventions, but which can also at times be impersonal and forbidding. We meet the most caring and dedicated health care professionals, and we also encounter those who are indifferent and detached. This is a compelling story told by a patient sometimes so sick and weak that her observations are reduced to dream-like impressions. 

Through Amy’s story we experience all facets of human emotion, the highs and lows of devastating medical illness are interwoven with memories of a troubled childhood, her joy of marriage and parenthood, ultimately the triumph of hope and determination.

Years after that dreadful mid-winter night when our paths first crossed, Amy appeared at my office for a visit. Before me stood a young woman appearing slightly frail and tentative, but her knowing smile reflected the amazing strength of the human spirit. 

I Need Who?

My son introduced me to the fabulous entrepreneur and best-selling author Guy Kawasaki by sharing the business guru's latest book, Enchantment: The Art of Changing Hearts, Minds, and Actions. A book geared towards self-starters for sure, it is his 10th work in which he inspires, goads, challenges and encourages us to be our best selves in business.

I've been reading it carefully - with an eye toward personal growth as well as how to successfully market my book - DYING TO LIVE: Running backwards through cancer, Lupus and chronic illness that is finally being published next week. (Watch for the official announcement!) There are a number of pieces to the marketing puzzle - not the least of which is social media marketing - as well as assembling a team to support me through it all. This, I feel, is exactly like I've had to do with doctors and specialists for the myriad of physical and mental events I endure living with chronic illness.

But I was absolutely struck on page 109 of Enchantment where author Kawasaki writes about assembling your team. He doesn't use words like chief executive officer, or accountant, or lawyer, or software developer, he uses completely unique terms that I am quoting and paraphrasing here:

Advocate - Takes the side of your customers, believers and followers; the champion inside the organization.
Skeptic - Provides a doubting attitude to both positive and negative news; challenges ideas to make them better.
Visionary - Has a clear idea of how your product and the marketplace will evolve; anticipates the needs of your believers.
Adult - Makes things happen in an efficient, cost-effective and legal manner; checks the rear, side, above and below views.
Evangelist - Sells the dream of how your cause can make people's lives better; uses emotion, intellect and persuasion.
Rainmaker - Closes deals.

Some of these roles can be filled by the same person. I need these people.  

I read this page over and over and over again. It makes so much sense but we get so caught up in the traditional organizational chart that we don't select people by their quality or ability to accomplish the above. Maybe the most seasoned business owners and entrepreneurs do, but Mr. Kawasaki is certainly brilliant in his assessment and I hope he doesn't mind the plug.

As my book gets purchased and passed around (crossing my fingers for luck) and I (with careful planning and hope) move onto speaking engagements, a radio show, book signings and whatever else comes my way, I know that I need a top-notch team.

I already have some team members, I think, but I need others. Could you be one of them? I'll gladly accept nominations.

Blessings,
Amy Susan Crohn
ascrohn@gmail.com

Childish

There is a child in all of us. No kidding! (Pun intended.) Some days, like today, when there are 10 inches of snow on the ground, I can't decide whether I should go jump and roll around in the snow with my dog or cozy up inside and tend to my wounded self (the parts of me that are really in physical pain).

Unfortunately, the decision is made for me because of my aching body from a Lupus flare and fibromyalgia and just plain fatigue. The cold, wet snow would be torturous. *Sigh* I want one of the three housekeepers we had as a child to come read me stories and make me Campbells chicken noodle soup with Saltine crackers and rub my back. I want to watch I Love Lucy re-runs. I want to suck my thumb.

Instead, we do like Erma Bombeck once said: Good mothers (who do not act like kids) wake up bruised and battered and bone-tired, but still get up and do what has to be done for the children. Yeah, we do. I do. My own mother couldn't. Oh well...

But I'm coming upon a milestone myself. My oldest son is moving out soon. He's more than ready and, honestly, I thought I was, too. He returned from his first business trip yesterday and was quite the professional describing what had transpired during the two days he spent at a company-sponsored conference in faraway Florida. I know he is well-respected and liked among his peers and his bosses are incredibly pleased with him, too.  He is kind to those he works among and he is continually complimented for how he conducts himself. This makes me very proud.

Last evening, however, after a tantrum of sorts thrown by both of us, we came to a realization that I'm starting to suffer from 'empty nest' syndrome and he is reverting to babyish actions to make sure Mommy will always be around for him even when he's moved to the big, bad city. Of course I will. And of course we will move through this transition like we've gone through so many others; hopefully not kicking and screaming like children the whole time.

*Sigh.* So maybe that's why I feel crummy today and want some hand-holding; some extra hugs. Maybe that's why I love hanging around with one of my best friend's two-year-old daughters. Maybe that's why I am irritated and uncomfortable. I can't have it both ways. My son taught me that.

* * *

Once again, thank you to everyone for all your support. I am happy to say that my memoir will soon be available on Amazon and I will be most thrilled to make the announcement later this year. In it you will learn why I relied on housekeepers more than my mother; why I believe with all my heart that childhood maltreatment is linked to adult physical illness; and why this little girl grew up as a spectator and continues to 'report' on the goings on around her. 

Feisty

With every attempt at publishing a book comes marketing. While my blog has held a spot for an excerpt for two years now, I've published the same one. Now, I decided to swap it out with a sample Chapter. I hope you will take the time to read and comment on it.

But today's blog is really about being feisty, a trait I believe I inherited  from my father's mother. And that pluck is surely a blessing and a curse. Sometimes I simply go too far; take risks. So let me tell you a little bit about my Granny.

In the late 1800's, my grandmother, Aline Lyon (whether she knew so or not) was slated to marry the soon-to-be-famous Dr. Burrill Crohn. A common practice among wealthy and/or culturally significant families of that era, the Crohns and the Lyons were not indifferent to match-making. Yet Aline was an independent young woman. Instead of marrying Burrill, she chose  to marry a true love outside of the families’ inner circle. This non-Crohn husband drowned at Orchard Beach before their first anniversary, uncannily after a scolding by her own father that he hoped the young husband would die from exactly such a fate since he was so disappointed in their union. As some sort of booby prize, Aline was then awarded Myron (Mike) Crohn as her second husband, and my Granny obeyed and married the Crohn clan's ""Black Sheep" and somehow, with her own brand of verve, held her family together during the Depression.

But my feisty Granny Aline also loved romance, drama or marriage or all three. Post her divorce from Mike after 11 years, she was married twice more to the same man; Joe Popper – a New York City horse and buggy driver. She died while my mother was pregnant with me; thus my being named after her utilizing the “A” from her first name as is Jewish tradition. Aline has always been described to me as a woman of determination, intelligence and great fortitude, as evidenced by this letter she wrote to the New York Times in 1944:

TO THE EDITOR

I am a hospital volunteer worker at one of the hospitals and I am hoping this letter will perhaps wake up some women who idle away their time at card games or teas when they could be doing good work. There is a serious shortage of nurses and the clinics that care for people who cannot afford independent care at home are badly in need of help.

The volunteers do good work and many women could spare a few hours a day to help until this war is over and things return to normal. Won’t women please consider this matter and try to help? It is not only a patriotic duty but an act of human kindness.

Aline Popper

New York, Nov. 15, 1944

Not many women spoke out at the end of World War II. Not many women described 'human kindness' as 'a patriotic duty.' I guess, with her nerve, she was ahead of the curve of women's liberation and wasn't afraid to talk about it. I have other stories of her great courage that I include in my memoir.

So I follow tradition. I'm not afraid to talk about what happened to me within the walls of my childhood home, nor the confines of a hospital during my critical illness. I just want to help, as corny as that sounds. But it is part of my healing as well; and my never-ending quest for learning. It's as easy as starting with your elders and examining the groundwork they laid for your values and morality - even if, in some cases, that means doing the exact opposite of what they did.

Looking back at my Granny, however, I can only hope that I've made her proud as she keeps an eye on the granddaughter she never knew on earth. And thank you, Granny, for your audacity to speak your mind. I'm carrying on with that tradition no matter what the consequences.

My father and I taking a risk at a New Mexico mesa; 1973

Depression

Here it is: The dirty little secret. I suffer from bouts of depression. As described by the National Institute of Mental Health, I am most likely experiencing a minor depression right now; a lackluster feeling of not wanting to do anything or see anyone and an overwhelming sadness that could last up to two weeks. I've been here before and, trust me, I'm not good company.

My work halts. My mood is low. My appetite is poor and my health issues are exacerbated. I actually had an episode of sweating through my pajamas one night this week and fear struck deep. The only other time that happened was when I had Hodgkin's Lymphoma and that was more than 15 years ago. It is a symptom and it also brings back hints of my PTSD from the emergency tracheotomy and its aftermath.

I think, too, I am wary of my 'ologists' month. By January 31st, I will have seen my rheumatologist, my oncologist, and my gastroenterologist and, undoubtedly, will be run through the gamut of testing I hate and the never ending adjustment of medications. Shortly thereafter, I will get my osteoporosis injection (the latest and greatest, or so they say) and continue my blah diet regimen. I have some new concerns and some old concerns. The docs and I will undoubtedly discuss them all.

Oy.

I don't like dealing with my health problems. I like putting them on a shelf and rolling along. But this past week alone, I've spent hours up late at night wondering whether or not to go to the hospital because my stomach is in spasms and pain from the gastroparesis I have lived with for some two years now, the strange night sweat and headaches and overall malaise. It is not pleasant when I have to go to the ER when the pain is at a +12 on a scale of 1 to 10. But that's what I wait for - the +12. I've learned.

For those of us classified as 'sick' or disabled, we don't know which comes first - the physical maladies or the depression; but both always come and there is no schedule. I know that, too.

According to the NIMH:

"People who have depression along with another medical illness tend to have more severe symptoms of both depression and the medical illness, more difficulty adapting to their medical condition, and more medical costs than those who do not have co-existing depression. Treating the depression can also help improve the outcome of treating the co-occurring illness."

I don't think many 'ologists' get this; nor the many specialists we must see individual for each piece of our bodies. There are so few holistic practitioners. Thanks to friend and colleague Susan Murphy Milano, and her courageous fight against Stage IV cancer last year, I've become acquainted with Dr. Dalal Akoury and her AwareMed Center in South Carolina. God, I miss your wisdom, Susan, and I'm definitely going to set up an appointment to meet Dr. Akoury when I'm down south in February. I know Dr. Akoury gets it and, perhaps, (just, perhaps) I might finally have a captain of my ship to guide me. Many have promised, none have succeeded. But it's worth a shot 'cause I ain't givin' up yet.

Lone Mallard

Getting Closer

As I near the final stages of writing my book proposal and polishing the memoir itself, I realize it's taken four years to arrange the pieces into some sort of semblance of my life to try to help others face similar family and medical challenges.

Writing a memoir is fraught with obstacles. First off, where does it end? Your life continues but you must weave the individual stories into a fabric of sense and stop - somewhere. Caution must be exercised when describing details that involve others, and careful attention to research requires double- and triple-checking for accuracy. I can only hope that some agent out there will see the benefits of publishing my tome.

Judging from this blog's statistics, I have readers from all over the world; not many, but a widespread audience who are finding some interest in my words. I am so grateful. Now, my attention must be directed to increasing page views and the dreaded search engine optimization.

I remember working as a newspaper reporter in the early 1980's and, then, in public relations and marketing. In the young years, all I had to do was write. The 'others' did all design, publishing, and delivery. As the years progressed and technology tools became more available, I delved head first into the abyss of direct mail, graphic design, and social media marketing. I have so much more to learn.

An 'old school' graphic design colleague had a sign hanging in his office that read: GOOD, FAST, or CHEAP. You were allowed to pick two for your project. I always asked for GREAT and FAST to throw him off balance just a bit. We had great fun working together, elevating each other's art to please our clients. Now everything is solo in today's age of social media (an oxymoron, really) unless you are already an established author or celebrity. I do have a wonderful editor, however, and she is worth every cent.

So you're joining me on this escapade - only one of many of Amy's high-risk attempts at tackling the life I've been given ... twice. I hope you, too, never lose your sense of wonder; always get your fill to eat but keep that hunger; never take one single breath from granted.... I hope you dance! (Lee Ann Womack)

I Hope You Dance by Lee Ann Womack

I hope you never lose your sense of wonder

You get your fill to eat but always keep that hunger

May you never take one single breath for granted

God forbid love ever leave you empty handed

I hope you still feel small when you stand beside the ocean

Whenever one door closes I hope one more opens

Promise me that you'll give faith a fighting chance

And when you get the choice to sit it out or dance

I hope you dance 

I hope you dance

I hope you never fear those mountains in the distance

Never settle for the path of least resistance

Livin' might mean takin' chances, but they're worth takin'

Lovin' might be a mistake, but it's worth makin'

Don't let some Hellbent heart leave you bitter

When you come close to sellin' out, reconsider

Give the heavens above more than just a passing glance

And when you get the choice to sit it out or dance

I hope you dance 

I hope you dance

(Time is a wheel in constant motion always rolling us along)

I hope you dance 

I hope you dance

(Tell me who wants to look back on their years and wonder, where those years have gone?)

I hope you still feel small when you stand beside the ocean

Whenever one door closes I hope one more opens

Promise me that you'll give faith a fighting chance

And when you get the choice to sit it out or dance

Dance

(Time is a wheel in constant motion always rolling us along)

I hope you dance 

I hope you dance

(Tell me who wants to look back on their years and wonder, where those years have gone?)

The Fountain of the Muses
Brookgreen Gardens, Murrells Inlet, SC