Thursday, March 26, 2015

Lost in space...

"Danger, Will Robinson. Danger!" I wish I had Robot from the sixties television show Lost in Space to warn me when danger was near, like when I'm going to get smacked in the back of the head with yet another medical emergency.

Since I've been a 'professional patient' for 18 years, you would think I could easily recognize warning signs. Nope. It's always like an earthquake; a shattering of what I thought was a body working well.

It's like being lost in space ... surrounded by blackness, grabbing at stars or comets or flying objects that aren't within my reach. I think of George Clooney in Gravity letting himself come loose from the spaceship and slip, sliding away. It's somewhat beautiful yet scary as hell.

Last week I was hospitalized for internal bleeding. The source is as yet unknown and further testing is scheduled. I also found out yesterday that in addition to having Lupus and gastroparesis, I have Sjrogen's Syndrome. I'm still trying to wrap my head around that one.

So while the doctors toss out names of tests, medicines and supplements, I shut down. When family and friends wish me well or offer comfort, I shut down. I can no longer hide my disappointment in my ongoing poor health. I was once vital. Now I am idle.

Chronic illness is a creepy, crawly thing that should come with warnings all over it yet there is still so much we do not know, particularly about autoimmune disease. To read that Sjrogen's is tied to lymphoma made me gasp, Of course I suffered the stage 4B cancer years before I found out I have Sjrogen's but there it is - in black and white for me to comprehend

Today, I just can't. Call it a pity party or whatever you choose. I feel badly for myself and angry at my body. Floating off in outer space looks pretty good right now.


Wednesday, March 18, 2015

Whatchoo talkin' about?

Fifteen years after The Adverse Childhood Experiences (ACE) Study was first published revealing that childhood maltreatment can lead to adult physical illness, it is still being knocked around as if it may not hold water. 

This flies in the face of the evidence most recently presented by What Shapes Health? a National Public Radio (NPR) series that explores social and environmental factors that affect health throughout life. The NPR series is inspired, in part, by findings in a poll released on March 2, 2015 by NPR, the Robert Wood Johnson Foundation and the Harvard T.H. Chan School of Public Health.

In NPR's article, Can Family Secrets Make You Sick? Megan Gunnar, a developmental psychologist at the University of Minnesota who, for more than 30 years, has been studying the ways children respond to stressful experiences says: "This is how nature protects us." We all become adapted to living in "the kinds of environments we're born into." Thus, she adds, (stressful or traumatic events) "reshape the biology of the child"

And if you have scary, traumatic experiences when you're small, Gunnar says, your stress response system may, in some cases, be programmed to overreact, influencing the way your mind and body work together. Research in animals and people suggests that the part of the mind that scientists call "executive function" — thought, judgment, self-control — seems to be most affected, she says.

"I thought that people would flock to this information, and be knocking on our doors, saying, 'Tell us more. We want to use it.' And the initial reaction was really — silence," says Dr. Rob Anda, epidemiologist and co-developer of the ACE study.  

"Just the sheer scale of the suffering — it was really disturbing to me," Anda remembers. "I actually remember being in my study and I wept."

He wept. I wept when I learned about The ACE Study while researching my book, DYING TO LIVE: Running backwards through cancer, Lupus and chronic illness. There was an 'aha' moment when I took the ACE test. I scored an 8 out of 10 making me extremely likely to develop serious illness as an adult. Ya think? Stage 4B Lymphoma? Lupus? Gastroparesis? Depression? Anxiety? Oh yeah. 

And then came the part where Anda found out what happened to all those people when they grew up: "Very dramatic increases in pretty much every one of the major public health problems that we'd included in the study," he says. Cancer, addiction, diabetes and stroke (just to name a few) occurred more often among people with high ACE scores.

Now, not everyone who'd had a rough childhood developed a serious illness, of course. But, according to the findings, adults who had four or more "yeses" to the ACE questions were, in general, twice as likely to have heart disease, compared to people whose ACE score was zero. Women with five or more "yeses" were at least four times as likely to have depression as those with no ACE points.

"Over time, especially when you're young, experiences of neglect and abuse and stress impair those circuits," Gunnar says. "You're less able to tell yourself not to eat the ice cream, or smoke the cigarette, or have that additional drink. You're less capable of regulating your own behavior. And that seems to be terribly important for linking early experiences with later health outcomes."

I'm convinced of the accuracy of the results of these studies. 

I am living proof. 

Please spread the word. 



Thursday, March 5, 2015

Joy to the world...

Can we make joy happen? During these snowy, dark, depressing days of winter, can we will it to be? Those of us who are chronically ill and hampered by the weather and its unpredictability (sorry weather forecasters) just seem to drop down, down, down beside each snowflake, next to one another in homes where we can not see.

So we take joy in the 'little things' like playing with the dog, or a television series marathon, music, or a good home-cooked meal. But there is something missing to jolt us up and out of bed; to struggle with the day because we have to take care of ourselves.
  • Wake up. Check.
  • Feel for aches and pains. Check. 
  • Take pre-breakfast meds. Check.
  • Make specially-approved breakfast for condition. Check. 
  • Look at calendar to see if you have any appointments or conference calls. Check. 
  • Sit down at desk to work. Check. 
  • Leave desk two or three times to remediate annoying side effects of meds. Check.
  • Think about walking through the snow to the gym. Check.  
  • Worry about falling on ice like last week. 
... and so on and on until darkness falls and you are tired from the routineness of yet another 'wintry mix' day.

If you have Lupus, fibromyalgia, Raynaud's Disease or any other of the thousands of auto-immune disorders, cold and wet is not your friend. You long for the rays of hot sun and, even, the humidity. Air conditioning just recreates winter for you so in spring and summer, you spend a lot of time outdoors and there is joy in the seasons. It's an easier joy for me to capture.

Researchers write about SAD or Seasonal Affective  Disorder. I wonder if it's a real thing or just something we all go through. Mayo Clinic says: "SAD is a type of depression that's related to changes in seasons.  SAD begins and ends at about the same times every year. If you're like most people with SAD, your symptoms start in the fall and continue into the winter months, sapping your energy and making you feel moody. Less often, SAD causes depression in the spring or early summer."

I don't think I have SAD. I've just got the winter weather blues like a lot of us.

Yet others love the cold, snowy weather! They revel in skiing, sledding and snowmen, They hike through icy and snow-laden woods. I remember those days. I was five-years-old. 

Because he was a New York City firefighter through many winters, my husband suffers frostbite on some of his fingers. I watch as a good part of his hand turns white when he doesn't wear gloves. I can't imagine him covered in water and icicles all those winters ago.

Today, our first responders and Department of Public Works staff do the same, braving all sorts of weather to reach tragedies or traumas. And we say to ourselves: "I'm glad it wasn't me."

I'm blessed. I can work from home and tend to my illnesses and my family. I have nothing to complain about. But I remember traveling to and from work in these awful weather days. Climbing over mountains of snow and cleaning off my car too many times to count. My trusty 1969 VW Bug with a 1973 engine that I owned in the early 1980s could be completely covered in snow but would start up reliably. It had no heat because the floorboards had rotted out, as those of you with old Volkwagen Bugs will recall, but your hands could easily act as windshield wipers if they failed because of how close you were sitting to the windshield.

I miss that car. That car alone was joyful. It's beep was happy. It could also climb through snow like a mountain goat because the engine was in its rear. Go figure that it's today's SUVs that are slipping and sliding all over the place. I also miss cutting a hole in a trash bag and slipping it over my head as a helluva a sled to throw myself down a hill.

If I can recapture those feelings, I can have joy every day no matter the weather or time zone. I just did.


Wednesday, February 18, 2015

Levity, brevity, clarity, wit...

Levity, brevity, clarity, wit. This phrase, coined by my brother, Steve Crohn, years ago, became our writers' motto since he was a writer and editor, too. In anything I write or say, I make sure I follow this credo because it works in business and in life. Truly!

Today, however, I am trying to get my doctors to adopt this approach. Wouldn't it be great if an appointment went something like this:

DOC (with direct eye contact): Good afternoon, Amy. What exactly is bothering you today?
ME: I can't digest food.
DOC: Is that before or after you've eaten it?
ME: After, of course. (I chuckle)
DOC (puts hand on my shoulder and smiles): Of course it's after. And how long has this problem been going on?
ME: Six months.
DOC: You mean you haven't pooped for six months?
ME: Sort of.
DOC: Do you also burp a lot?
ME: Yes.
DOC: So it's coming out one end but not the other?
ME: Yup.
DOC: Interesting (he sits down)
ME: What are possible diagnoses?
DOC: Hmmm. Perhaps it's the Gobloots like Lucy had in an episode of I Love Lucy. We will get to the bottom of it, pun intended. I don't want to unnecessarily cause you alarm when it's, most likely, a minor issue.
ME: Thank you, Doc. Do you know you look like Bradley Cooper and I want to kiss you?
(C'mon! We've all had at least one doctor like that? )
DOC: Sure. Come here.....(Hee hee)

The point is that the Doc is focused, not shuffling papers, not answering the phone, not distracted by what's going on outside the window, and is directly and clearly taking care of me with the four qualities I describe above.
  • He has levity or "lightness of mind, character, or behavior." (NOTE: This does not mean uninterested or uneducated. It means open-minded and acting with an open heart.)
  • He's brief but to the point. 
  • He's clear and lucid "as to perception or understanding and his words are free from ambiguity."
  • He's witty because his keen perception and cleverly apt expressions "make connections between ideas that can awaken pleasure." (Eye contact. Touching my shoulder. Ricky Ricardo. Not distracted and that kiss!)
According to Lauren Block, a former Johns Hopkins University fellow in an article entitled  5 WAYS NEW DOCTORS FAIL AT BEDSIDE MANNER from a study conducted by the University: "It’s no wonder patients don’t feel connected to what we are telling them, because many times we are not doing as much as we could to make that connection.” The Johns Hopkins study also revealed that only 10 percent of patients can name a doctor who cared for them in the hospital.

Moreover, new doctors performed all five of the recommended behaviors like touch, eye contact and sitting down, during just four percent of all patient encounters. They were only slightly more likely to introduce themselves to patients during their first encounter than during a later one.

And good bedside manner has been proven to have a positive impact on patient health!

From a study at Massachusetts General Hospital, lead author and psychologist John Kelley says: "Our results show that the beneficial effects of a good patient-clinician relationship on health care outcomes are of similar magnitude to many well-established medical treatments." He added that "many of these medical treatments, while very important, need to balance their benefits against accompanying unwanted side effects. In contrast, there are no negative side effects to a good patient-clinician relationship."

NO NEGATIVE SIDE EFFECTS TO A GOOD PATIENT-CLINICIAN RELATIONSHIP. Hear that doctors?

The study goes on to say: The review found that relationship-focused training had a small but statistically significant effect on the specific health outcomes in patients with obesity, diabetes, asthma, or osteoarthritis. Among other things, it could affect weight loss, blood pressure, blood sugar and lipid levels, and pain. In fact, the researchers noted that the impact was greater than the reported effects of low-dose aspirin or cholesterol-lowering statins for preventing heart attack.

The researchers all say hospitals and training program officials can take simple steps to improve things, such as providing extra chairs and photos of the care team in patient rooms. They suggest adding lessons on etiquette-based communication to the curriculum. Really? 

Needless to say, I am still Dying to Live and hope to follow 'doctor's orders' when they are delivered with levity, brevity, clarity and wit.

Marcus Welby where are you now? Never mind. I'll *ahem* take that kiss from Dr. Steven Kiley (a young James Brolin) instead.