Amy Susan Crohn's Blog, page 7

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

Beautiful Boy

It's done. One oldest son has flown the nest for real. Not college. Not a long trip. His first home - an apartment in a high-rise in New York City. My Beautiful Boy is gone.

I cried all the way home. 

We are an extremely close-knit family, particularly due to my critical illnesses and the many and terrible losses we suffered as a family as dear relatives died way too young. As much as he infuriated, perplexed, confused and irritated me this past year-and-a-half as he settled into his grown-up job and grew into a true man, I can not doubt his character or his faithfulness, or his loyalty. I am in awe of what he has accomplished. He has grown into the man I always wanted him to be, He is kind and wise.

According to The Mayo Clinic, I don't truly have 'empty nest syndrome' because one of my sons is still at home. But I guess the first one being fully cooked and launched can bring up a mess of feelings, too. I'm certainly feeling them.

The Clinic suggests that to cope, you:

Avoid comparing your child's timetable to your own personal experience. Instead, focus on what you can do to help your child succeed when he or she does leave home. (We are also moving today!)Keep in touch. You can continue to be close to your children even when you live apart. Make an effort to maintain regular contact through visits, phone calls, emails, texts or video chats. (We already do that.)Seek support. If you're having a difficult time dealing with an empty nest, lean on loved ones and other close contacts for support. Share your feelings. If you feel depressed, consult your doctor or a mental health provider. (Grabbed a friend last night with her young daughter and went to dinner and got ice cream. It felt good to be with them.)Stay positive. Thinking about the extra time and energy you might have to devote to your marriage or personal interests after your last child leaves home might help you adapt to this major life change, (I guess I'll have time to write another book!)Yeah, yeah. Maybe tomorrow. Today I can feel sad and glad and await his return TODAY so we can all go to a graduation party together. The joke's on me. 

Godspeed my son. You are loved. Dan and I last year in Murrells Inlet, SC.

WHY WAIT?

Dorothy Ellis, 92, a hospice patient in Kansas asked to soar above the fields of her hometown in Kansas as her last wish. (Yes, Dorothy. Yes, Kansas.) Here is the video link: Soaring over Kansas
Flying to Somewhere Over the Rainbow by Israel "IZ" Kamakawiwo'ole, Dorothy smiles, waves and gives her family a thumbs up. Six weeks later, she died.

Why do we wait until we're 92? 

Since I was pronounced dead in a local emergency room 15 years ago due to a missed diagnosis of Stage 4B cancer and Lupus I've tried to live each day fully; as if it is the last. I've got my "bucket list" but things get in the way, don't they? Things simply get in the way and we make excuses.

Hey, I'm scared to get up in a parachute contraption like Dorothy did! But there are many other things on my list that I could do now - like seeing Mount Rushmore and the Grand Canyon. And in the ensuing years since my devastating illness and the dastardly side effects of chemotherapy, I have crossed a lot of things off my list - like purchasing a home down south and writing my book - plus simply being here to raise my sons and see them become productive, kind and wise young adults.

But we've got to do more; get off our duffs and experience life every day. I'm heading into the last third of my life and I still have so much to do! This is why I've chosen to explore integrative/functional medicine options to help with the various ailments I suffer. According to The Institute for Functional Medicine:

"Integrative medicine is healing-oriented medicine that takes account of the whole person (body, mind, and spirit), including all aspects of lifestyle. It emphasizes the therapeutic relationship and makes use of all appropriate therapies, both conventional and alternative."

I'm in the second month of this trial and find surprising and good changes in my body. I'm still in control - picking and choosing what new and different treatments I will try and reviewing all with my trusted and 'traditional' medical specialists who have known me for so many years of this sh*t. Sharing all the new information with one of them prompted him to call me "meshugganah." (Crazy in Yiddish.) That's okay. I'm a bit of a risk taker.

So what new thing will you do today? Will you let me know? 

Picture by my son, Brett Santagata

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.

When you're a stranger...

So, it's out there. My whole wretched life in black and white - being read all over. I'm no longer the Wizard hiding behind the curtain.

Early reviews of my book DYING TO LIVE: Running backwards through cancer, Lupus, and chronic illness are better than I could have imagined. I am proud, excited, awestruck and profoundly moved by the comments by those who have read my memoir that lays out how childhood maltreatment can lead to adult physical illness. It is my personal story; so very personal.

It is strange now, unsettling - like The Doors sing in People Are Strange "People are strange when you're a stranger..." So far, nobody has been strange and I don't think any complete strangers have read it yet. So, for now, I am safe.

But what about tomorrow? Or the next day? Or in weeks, months and years to come? I have put myself out there willingly; warts and all. It is an unusual place to be and when I start hearing about how my words - MY words - have helped others, I will feel that it is all worth it.

I didn't think I would still be alive today. Yet, here I am (much to some doctors' amazement). It's a trite saying but it's true: If I can help just one person with this book, it will all have been worth it.

Thank you, my friends, for keeping this dream alive for so long. Now, the real work begins - announcing to the world that this particular stranger has something very important to say!

With love,
Amy

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, FACPDirector of Medicine,Phelps Memorial HospitalSleepy 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

Holy Smokes!

I'm a little pissed off. It is no longer possible for me to deny that the rich and/or celebrated get better medical care because they can afford preventive medicine.

My new integrative/functional medicine doctor ordered dozens of blood tests that show I am out of range in critical areas. For example, with no known heart disease in my family (other than when my parents were nearing their demise) I am at immediate risk for stroke or heart disease unless I do something about it. I am 52, albeit with the physical body of a 62-year-old due to the massive amounts of chemotherapy I received during my lymphoma treatment and the subsequent radioactive tests that I have been undergoing for the past 15 years.

I also learned from my lab results that:

I am pre-diabetic. My body is not processing insulin properly. No one in my family has diabetes.My kidney function is extremely low.I have zero vitamin D even though I've been taking supplements for years.I have zero estrogen and progesterone - again after taking medication for at least a dozen years.Gastro-intestinally, I'm a mess. I'm dangerously dehydrated even though I drink the requisite amount of proper fluids each day. My body is in acute stress due to the above and is working way too hard to maintain itself.I guess I could have told you that because of the way I've been feeling; but to see it laid out on a three-page lab results form with the highlighted out-of-range areas is quite scary and makes me angry. 
Traditional medicine will wait for the stroke and then treat you. They will wait for renal failure and then start dialysis. They will let diabetes overcome before starting any kind of treatment that could prevent it from happening. Our physicians are taught to treat the event or the symptom, not to prevent any of it years before it might happen. 
I asked Dr. Dalal Akoury to rate me on a scale of one to ten with ten being the worst. She gave me a seven. However, she also gave me great hope. She's created a Road Map or treatment and recovery that will address all of these areas and more. She will help me live a longer and more satisfying life and wean me off of many prescribed medications that have been doing harm to my vital organs and are, simply, no longer working. 
I can't tell you exactly what she's going to do yet because while she rattled off (from her genius mind) all my treatment options, my mind was wandering. I was thinking how sad it is that everyone can't get these tests done (they cost up to $2,000) or work with a preventive medical doctor. I have elected to do this and rationalized (rightly, so) that if I can get off of just two or three chemical medications, I will save up to $400 a month in co-pays. 
So what makes sense in this restless and, perhaps, reckless Obama-care state of mind? The pharmaceutical companies will continue to make tons of money. Doctors will do even less preventive medicine - if they did it at all - and treat, treat, treat. I guess it costs more to keep us alive then to have us die. I also plan to meet with my excellent and progressive-thinking cardiologist and review the blood test results with him. I want to know if he would do this same type of extensive testing if insurance companies paid for it or patients could afford it. I want to know his opinion. 
As I've written before, I'm baring the good, bad and ugly of this new medical journey of mine. As a 'professional patient,' my modus operandi is to take the lead, even when I'm too damn tired to do so. I'm placing my very life in the cradle of a new type of medicine that is really 'old school.' Identify and fix  early using the very best natural foods and plant-based medicines that are available to us. Apparently one of my intravenous treatments with Dr. Dolly (as she is affectionately known) will contain Niacin to help my digestive system, skin, and nerves to function. It is also important for converting food to energy. 
As Dr. Dolly says, health is the new wealth. It is up to us to take charge of our own healthcare in whatever fashion we choose. But, make no mistake, it is up to you and you alone.
I'll let you know how it goes. 
In the meantime, I hope you'll check out my new website at www.dyingtoliveamy.com. The book WILL be available soon - I promise. I just had to make sure it was perfect! 

Just Scared

As someone who made a career out of being 'behind the scenes' helping bosses and clients look their best through my writing, coaching, and media spinning, it is all I can do but contain my fright as I launch the real me into the world with my memoir.

DYING TO LIVE: Running backwards through cancer, Lupus, and chronic illness has not only been a four-year journey of writing and re-writing, it has been a catharsis for me, healing many wounds that had been buried all my life. I am no longer the observer of my youth and now people will be watching me! I'm scared. 

Many people say they feel lucky to have had a life-changing trauma because life become rosier - or we learn the hard way to take the time to truly smell the roses, as the saying goes. I do, too. However, life continues as usual with all the ups and downs - a veritable roller coaster ride of triumphs and tragedies. It's what we 'survivors' do with them that sets us apart.

Accept each blow with as much grace as possibleCelebrate every milestone heartilyFind the funny in every dayKnow that sadness and/or depression and/or physical pain will pass in timeArm ourselves with medical knowledge, particularly relevant to our own chronic conditionsLive each day as if it is our last - a trite saying but altogether too trueI received the actual PROOF of my book last week. I was joyous! I couldn't wait to show it to as many people as I could. And then I crashed, saddened that some are no longer here to share it's physical-ness with me. In particular, I think of my parents - both writers either professionally and/or personally. My father longed to write a novel and, although he published several work-related "How To" books, he never found the time to write his thriller.
My mother dabbled in creative expression through poetry. Her poems were hauntingly beautiful, much like she was as a person. She was especially thrilled when I sent her my first news story with a byline in the early 1980's. My extended family, for various reasons, is not near enough either physically and/or emotionally right this minute to have a hands-on experience with me even though this memoir could not be completed without them. I  can't wait to send them their final hard copies. 
And my husband simply cried at the rawness of it all. 
So, I sit here today anxious for the book to finally be available for sale on Amazon and numb that the writing of it is over. Sure, I have set new goals (it's just what I do) and am doing as much traditional and social media marketing as I possibly can to raise awareness of how childhood maltreatment does lead to adult physical illness; plus how regular people, like me, can survive and live with chronic ailments without succumbing to disease or dis-ease, as I like to write. 
Carry on, my friends. Just carry on...'cause I want to get old with you.