At what price...

The FDA issues a strong risk advisory against a medicine I've been taking for almost five years. My doctors won't prescribe it anymore and they have no alternate suggestions. Since the medicine helps me digest food that I can't normally process due to gastroparesis, I'm stuck - literally. And I'm scared.

It's easy to understand the physicians' concerns about liability since the medicine can, according to the FDA, cause cardiac issues; however, the drug is available in other developed countries. Are we, in the U.S. to be deprived of this right? Is this "big pharma" running the show? Is it more lucrative for them to have those of us who rely on this drug end up in the hospital and, potentially, dehydrated, at the brink of starvation, and in need of radical surgery?

Here are my options:

1) Stop the medicine cold turkey and wait until I am sufficiently impacted and in enough pain to be admitted for emergency treatment.
2) Find and try supplements (pills, teas, oils, balms) from thousands of "natural" stores or websites that are eager to fill this gap.
3) Risk buying the drug from another country that only accepts e-checks.
4) Begin a purely liquid diet to see if I can manage it myself.

In the past few weeks, I've adopted a rudimentary combination that includes substituting the medicine with an organic supplement pill, edible oil and a custom herbal tea blend. I risked the purchase from New Zealand by supplying them with both my routing and account numbers from a personal checking account where it will take up to three weeks to get the darn, non-FDA approved pills. And, I am gradually switching to an all-liquid diet.  But, I'm angry. I can't eat and I can't poop. If this is TMI, you haven't been reading my blog very long because I share everything to try to help others. 

Lastly, I've also found a supplier of medical marijuana that I am now using for the joint pain from Lupus and my high anxiety that is attributable to constantly performing triage on myself every single day and trying to manage physical and cognitive medical problems WITHOUT all my doctors communicating with one another. It's exhausting. But you know that already.

The price tag so far for all the crap I've bought and tried this past month including my "regular" prescriptions is nearly $1000 and I don't know what, if anything will work. But the toll it takes on me is much, much higher. If another doctor fails to return my phone call, I'll, I'll .... do nothing or go to sleep. I've been a professional patient for 20 years now due to Stage IV Lymphoma and Lupus. Harsh chemotherapy is certainly the gift that keeps on giving!

There's one final possible solution discovered by someone in my online gastroparesis support group that I find hilarious. Eat sugar free Gummy Bears available on Amazon.com. If you read the reviews, you will laugh yourself silly. One of my fellow GP sufferers is actually going to try eating them rather than force-drink the gallon of medicinal liquid provided for a colonoscopy that we literally can't stomach.

At least there's a light at the end of the tunnel - pun intended - and it's possible that it will be gummy bears to the rescue!

Sugar Free Gummy Bears from Amazon.com

The Hail Mary pass...

I did it. I threw the Hail Mary - that long, forward pass thrown by football quarterbacks close to the end zone as possible while the clock runs out.

I threw it as far as I could; from New York to South Carolina where I've landed on both feet in the end zone and, quite possibly, scored the winning touchdown. A whole lifetime of trauma, illness, tragedy, and top-heavy responsibility led me here and it's been a very, very long journey.

And, I won't know until I know.

Nearly 20 years ago I was asking God to throw the Hail Mary as I succumbed to cancer and Lupus in one tremendous and episodic journey to the other side. He (and thus, I) prevailed to see many other days raising my children, nurturing my marriage, playing with friends and working as a writer. You can read more in my book, DYING TO LIVE: Running backwards through cancer, Lupus and chronic illness.

And now I'm exhausted because I have finally given myself permission to rest, relax and rejuvenate. At 55, I want to just be... And after many years of locale research and extended stays, it is sunny, warm South Carolina that affords me that opportunity. It's where all the hard work and hand-holding my husband and I did for each other, our children, our extended family, and strangers seems satisfied.

Yet I find myself already filling out a volunteer application for nearby Brookgreen Gardens. !!!???

I come from a long line of doers - people who do for others yet neglect themselves. The only thing I've truly neglected is my health and it needs tending; my body tells me so. So since arriving here nearly a week ago and rejoicing in my new home and environment, I am listless and unable to do much but sleep, eat, and watch television. Yet, I am at peace far away from family and friends who I miss. Plus, I am blessed by two sons who are carving their own way in the world. I am here by choice and surrounded by the love, hope and grace that emanates from within me. Yup, simply from me.

What comes next is anyone's guess and I'll wait for it all to arrive. If it's weekly bike riding thanks to an electric-powered bike, walks on the beach or in the warm rain, meals out with my husband, meeting new friends, escaping with the dog and, perhaps, tending a garden even though I've always had a black thumb, I will smile and hum along with whatever tune is playing.

If it's illness yet again, I will face it with dignity and courage and choice; that is, my choice if I want to get treatment or fold into my own harmony and spirit with all the beauty that is around me and the memories that sustain me.

Godspeed in 2016...

Chapter IV: Settlement of my Soul

If I try to separate my life into Chapters, I get four:

1. Birth to Young adult
2. Work, Marriage and Children
3. Cancer, Lupus and Chronic Illness
4. Settlement of my Soul

Astonished as I am that I still live and reach goals I never thought possible, it is this Chapter, number four, that is the most intriguing. It's the latter third of my life. All the things and people and places I grasped at and for the past 55 years has led me to  reconciliation of my soul's desire.

It's unusual yet so very, very gratifying. What did I yearn for as a child besides a pony? What actions or activities made my heart sing? How many life lessons have I learned? Where am I going from here?

Moving from my native New York to a southern state where the air is warmer, cleaner and the ocean is nearby nourishes my soul. Having access to nature and wildlife of all kinds - including alligators - continually surprises me. Squirrels' tails are less bushy here since they don't need the warmth from the extra hair so now they really look like rats with tails. Poinsettia plants grow naturally here, a discovery I made by accident as a green plant slowly turned red last winter and I had an "aha" moment. The bark of the many different types of palm trees reminds me of the hardness or softness of people. The storms are just part of the day. 

I have time to explore, gaze, or reason. I get to think uninterrupted. I have found my "final resting place,"  a phrase that disturbs some of my friends and family. After all the hub-bub of a very rich yet difficult life, I get to ask myself: "What did I enjoy doing most when I had the time to do it?" The answers are coming to me slowly but surely and I will do everything in my power to honor my soul's desire. 

While it sounds trite, it is my life and I am blessed to be able to live it regardless of the physical encumbrances I bear and the emotional scars from the tragedies I've endured. You've been reading my "book" for awhile now. Everything stems from my soul and each day gives me another opportunity to give it its due.  

Moving on...

It's been quite awhile since I've written a blog post because as one of my favorite quotes says:

“Sometimes you have to kind of die inside in order to rise from your own ashes and believe in yourself and love yourself to become a new person.” 

― Gerard Way, musician

Oh, how many times have I done this? At least five or six and counting...

These past couple of months have been a time of deep reflection. Regardless of the chronic illness and grief I endure every day, I'm pondering just 'regular' things like the empty nest, buying a home in my beloved Murrells Inlet, South Carolina and adapting to a 'new normal' with health challenges all over again.

I've been referring to the new house as "my final resting place," for it is the last house or residence I will ever purchase and it is the place where I know I will live out the rest of my days. It's a dream come true and one I thought I might never see. Certainly my doctors in the late 1990s all the way up to today didn't think I would still be here...living...dreaming...attempting another huge change in my life even though I'm sick and fraught with loss.

Yes, you can live with chronic illness or disabilities and grief for people who have died before you or all that you have lost due to continual adaptation. Those of us who do must always remain vigilant but we can not let the cancers, the autoimmune disorders, the tragedies and the various odd ailments that strike us out of the blue as a result of chemotherapy or medications or, simply, stress ever, ever derail us. I still reach out and talk to those who are dealing with often fatal disease or a sudden death in the family but it is my choice and it is private. The lessons I learned can't really be taught. Or can they? 

All those wonderful sayings that scroll by us on Facebook or other social media tell us that life is to be lived in moments. Three near death experiences 18 years ago, the loss of many loved ones including my brother to suicide shouldn't have had to teach that to me. But if you still need to learn this lesson, my book DYING TO LIVE: Running backwards through cancer, Lupus and chronic illness may help. A revised version should be published in 2016.

I'm no yogi and I'm no psychic. I'm just a regular person dealing with irregular bumps in the road. And I know I'm not alone.

Throwaway days...

No, I don't mean trash, although getting rid of one item a day to declutter our houses is probably a good idea. I'm talking about those days where those of us with chronic illness have to stay in bed or on the couch or in the recliner and miss out - a throwaway day.

The throwaway day is gone forever and we have many of them; typically after exerting ourselves the day or two before and that includes any events where we might have had fun! It's a constant balancing act.

On my throwaway days, I am usually in bed, in pain, exhausted, and with various symptoms from either my Lupus, Sjrogens, gastroparesis, fibromyalgia, or all of them. Pick a poison for there is no rationale. Could I have a virus? Sure. Could I be getting stomach bug? I guess so, but, most likely, it's just one of those days that go down the rabbit hole for no apparent reason except my chronic ailments.

I hate them.

Yeah. I'll say it again. I HATE THEM. But that doesn't make me stop wishing for a better day tomorrow and getting myself up and out again. I'm always optimistic yet cautionary as I move about my days. Monitoring myself is difficult when there are so many things going on 'behind the scenes.' But I do it anyway for I have life to live, people to see, places to go, and so many things I want to do.

I still haven't scheduled the camera test - the one where I fast for nearly 24 hours and then swallow a big pill with a little camera in it to scope out my small intestines. I'm scared. There are a certain percentage of people whose cameras get stuck and have to be removed surgically. With everything that's happened to me, I fear I will be THAT one.

But I will do it. I always do and I'll hope the results give me better answers to manage day-to-day.
Please don't throw away your days if you don't have to. Bank them for me and others with chronic illness. We will gladly take them off your hands.

Why cry?

Why cry? It's normal and healing, right? It releases toxins in the body. It cleanses our soul and releases stress, anxiety, anger and sadness. It's normal.

Perhaps we don't cry enough, being taught that it is a sign of weakness. But we also cry at happy events when our emotions are triggered to new heights. Some of us cry when we laugh long and hard. I know I do and I don't know where it's coming from.

According to an article in Psychology Today crying can be extremely healing with one caveat: If we self-criticize while crying our eyes out, it does no good at all. That's why we all know some people who cry and cry and cry and never get any better. They are telling themselves negative messages like:

"I'm a loser and that's why I didn't get the job."

"My boyfriend left me because I'm fat and stupid."

"I don't deserve to have any friends."

"I'm just too sensitive."

Instead,  the article reminds us, "speak only kind words to yourself" when you're crying such as
 “I’m sorry” and “I’m with you” and “I love you." We don't say these things to make us stop crying we say them to be compassionate to ourselves.

What a concept! Be compassionate to ourselves.

So many of us are empathetic with others, we forget to do the same when we need it. We berate and negate our feelings and stop crying, especially in public.

The scientific community is studying our tears. In a research project completed by Lauren Blysma, a PhD student at the University of South Florida in Tampa, she and her colleagues describe what we should and shouldn't do around someone who is in crying mode.

•  Be aware that if you do nothing, you can make the crier feel worse.
• Try to do something supportive. What that is depends on the situation and how well you know the person, For example, hugging someone you aren't very close with might not be appropriate, while simply listening in an empathetic way would be suitable.
• Don't assume you know how to comfort them. 'The less intimate the relationship, the more it is appropriate to begin by asking how you can help and be supportive.
• Know that criers who tear up in a very large group generally feel more uncomfortable than those who cry in front of one or two people they're familiar with. But even in a large group, the criers welcome support from those they didn't know well.

I've participated in drum circles and find them so empowering and healing. How about we form a circle of tears and just let it all out! We can drum at the same time if we want but it's a different kind of "sweat lodge," don't you think? We expel the bad through good old fashioned crying and it's not as hard to build and bear like a traditional and viable Native American sweat lodge. 

Who's with me?

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.

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. 

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.

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.

Courage...

If it could only be as easy as a wish for courage like The Cowardly Lion in The Wizard of Oz, we - like he - would all recognize our inner strength and latch onto it for dear life.

But it's not that simple, is it? For some of us, due to chronic illness, PTSD, depression, or other physical or mental ailments, finding the courage to go forward is a daily battle. For others, they choose to end their suffering by completing suicide.

This month, I am honored to be working with Scudder Intervention Services Foundation, Inc. (SISFI) on their Suicide Awareness and Prevention Tour in New York City, Long Island and Westchester County, NY. While I relied on SISFI for support myself after my brother's suicide almost a year-and-a-half ago, I was shocked to learn that during their September tour they interrupted 192 attempted suicides! That's something else!!

The difference with SISFI's 'troops' is that they are truly 'boots on the ground;' that is, they go to the person in crisis rather than referring them to an agency that may only be open Monday to Friday, 9am to 5pm. At any hour of the day or night, SISFI volunteers are available to personally talk to and/or visit individuals in crisis.

As Mr. Brett A. Scudder, SISFI president says: "“It is imperative that our communities rally together to be educated and aware of the mindset of someone suffering with emotional distress and the early warning signs to intervene and prevent them from hurting themselves or taking their life because they feel alone."

And that, in my opinion, takes lots of courage. The suicidal person is in tremendous pain and Scudder's team will go to them and simply hold their hand or talk or listen or give them a hug and tell them they are not alone. Certified in suicide prevention, Scudder knows that traditional avenues available to those in crisis are highly clinical and limited. The goal is to train and deploy dozens of volunteer Mental Health First Aid Responders in communities across his service area and, in the future, beyond.

We must change the paradigm of how we respond to those in distress. We must go to them rather than making them come to us. We must not just be another faceless voice instructing the person what to do on Monday morning.

Hear, hear for SISFI and let's make their mission statement our own:

"TO PROVIDE AWARENESS, SERVICES, PROGRAMS, HEALING AND RESOURCES TO ADDRESS/ALLEVIATE HUMAN SUFFERING AND TO PROMOTE EMOTIONAL WELLNESS, MENTAL/BEHAVIORAL HEALTH AND LIFE SKILLS."

This, my friends, will take lots of courage.

SISFI TOURS

Beginning to end...

We begin so many times in our lives - at birth, first tooth, walking, school, college, career, marriage and so on. We also end equally as many times through changes in personal habits or work, residences, loves, friendships, health, diet and death - either ours or of those we love. Call it a metamorphosis or an analogy of life.

As a young girl I simply wanted to wander in wonder all the days of my life. I wanted to let life unfold and be an observer. I guess that's why I became a journalist as my first career. But stuff happened and plans went awry. And then I got really tired; exhausted by all the daily challenges and changes and hiccups. I (and you) ask ourselves if we can make it through another day.

And we do.

And we delight in the amazing, wonderful things that occur - even the tiniest of treasures, like a bite of a ripe banana.

We also mourn lost opportunities, friendships, or people who've passed away - especially the folks, places or things that held a piece of our soul.

Merriam-Webster's definition of soul is:

The spiritual part of a person that is believed to give life to the body and, in many religions, is believed to live forever; a person's deeply felt moral and emotional nature; the ability of a person to feel kindness and sympathy for others, to appreciate beauty and art, etc.

There are two instances in my life when I knew I truly connected with my soul. The first was when I had Stage IVB cancer and near death experiences and the second has been since my brother died in August 2013.

A sense of soulful, holy spirit is what we are supposed to feel during the holiday season and many of us do. This year, however, I feel I floated through Thanksgiving, Hanukkah and Christmas - detached and alone even though I was surrounded by the love of others. I am thankful for the souls on 'the other side' who made themselves known to me either by images and scents or simply the awareness that they are nearby. Meditation is also a great tool that helps me reconnect my soul to those beyond my reach.

My soul remains raw yet intact. The pieces that have been lost to me will eventually return to fill me up more deeply but differently; like new, bold colors that stay within the lines.. At least that's how I envision it.

And because I know myself better than any other soul, I want to end this post with a humorous quote by children's activist, trumpet player, music producer, songwriter, and television producer Quincy Jones.

"I've always thought that a big laugh is a really loud noise from the soul saying, "Ain't that the truth."

Quincy Jones, Victory of the Spirit

T'is true, indeed. Happy, healthy New Year to all.

At a loss for words...

It's criminal when a writer loses the ability to write. I suspect it is because this blog is so very personal that I have been silent for so long.

You see, as we've slowly slid into the holiday season and I, like many survivors of suicide (the correct term for those who have lost a loved one to a completed suicide), find myself in the depths of grief and longing once again, it didn't help that we finally closed out my "brudder's" storage unit, giving away the last of the items it contained - a shelving unit.

For a year I've been going back and forth to that space - a little haven where I was surrounded by his art, his personal belongings, his essence. Of course, many large and small bits of his 'stuff' are now in my home but it was like going to his grave (where I have yet to go since his headstone was placed) and it made me feel close.

I was his "Twisted Sister" and he was my "Brudder from Anudder Mudder" but that was what made it all so special. He was truly my best friend (even though we fought in recent years) and with our father gone as well, the convoluted combination of holidays we celebrated are no longer as cheery, silly, or fun.

This is when sadness turns into nostalgia, I guess, and that's a good thing.

I've thrown myself into Suicide Awareness and Prevention efforts, helping a wonderful, gentle man launch tours and workshops and conferences in Westchester County, New York. See www.sisfi.org. At times, I don't know if I am the organizer or the participant but my involvement helps in large and small bits, just like my brother's stuff.

I'd be lying if I said I haven't had some very dark days. I have. I want to crawl into that heavenly space where he now lives and feel his embrace, hear his deep, penetrating guffaw, and see his twinkling eyes. Kind of like searching for Santa Claus who is so real but so difficult to catch. He always slips through my fingers.

For those of you suffering physically or emotionally through this holiday season, I send you all the strength of love and prayer that I can possibly muster. In turn, please do the same for me.

Love always,
Amy

My brudder and I nearly 20 years ago. 

Death with Dignity - Brittany Maynard

Coming to terms with anyone's choice to end one's life is a difficult process and I have an unusual perspective from three points of view:

• A recovered Stage 4B cancer patient who was told three times I would die during my harsh, year-long treatment.
• A suicide survivor - the term used when a loved one completes suicide as my brother, Steve Crohn, did a year ago August. 
• A compassionate, health-challenged woman who is contemplating my own choices when and if I get critically ill again.

As 29-year-old Brittany Maynard said: "It's not a decision you make one day and you snap your fingers." 

No, it's not. Seventeen years ago, at age 36 and married with two young children, I had to fight the urge to let go - to surrender to the disease and end the outright pain it inflicted. I was determined to live because of my children. However, when it was all over, I said I would never, ever do it again; that is, I decided then and there that if I was ever re-stricken with cancer, I would not fight it and I would let nature take its course. Now I'm not so sure. 

My brother chose to die with his dignity intact. Suffering from life's challenges, personal trauma and mental illness, he selected the date, time and place and how he would end his life. Found with a smile on his face I 'see' him that way today; joyous and in Heaven dancing with friends and family. As much as I railed against his actions for months, I have come to realize it was his decision and he felt it was best. I accept it but I will always miss him. I just don't question his decision anymore. 

Finally, here I am today with news just last week that my white and red blood cells are, for the first time since 1997, in the normal range. I am no longer immuno-compromised. It is truly amazing what the human body can do - in time. I still suffer from Lupus, fibromyalgia, gastroparesis, severe osteoporosis, depression and anxiety but I manage day-to-day with no thoughts of ending my life. 

If time is only going to make you suffer more, I do believe we should have the right to our own life-ending decision. Maynard, who had terminal brain cancer with just months to live, had to move to Oregon to have that option. Other states are beginning to craft legislation that will allow assisted death in cases such as Maynard's.

Yesterday, surrounded by family and friends, Maynard wrote:

"Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me … but would have taken so much more. The world is a beautiful place, travel has been my greatest teacher, my close friends and folks are the greatest givers. I even have a ring of support around my bed as I type … Goodbye world. Spread good energy. Pay it forward!" 

May we all have the option to die with dignity and grace. 

Britanny Maynard in People magazine

Pain, pain go away...

It hurts. I hurt. Where? Everywhere and anywhere. It's in my back, my arms, legs, neck, stomach, head and, even, my butt. I'm whining about Lupus, fibromyalgia, osteporosis, gastroparesis, arthritis, my worsening eyesight and the cold weather that's starting to settle into my bones in New York.

I'm making the doctor rounds, as ordered, and some medications are being removed, others added, dosages changed and tests ordered. *Sigh.* It's a job and it's a frustrating one at that.

Talking to a friend last evening who also has autoimmune disease plus work plus family plus daily life challenges like talking to any darn insurance company (auto, home, health - pick one) or staying on hold for tech support or grocery shopping or actually getting WORK done, I found myself giving her advice that I need to give myself again.

Pick three things. That is, choose - in priority order - what things you are going to master today, this week, this month. For example, I suggested:

1. Health/Self-Care. She's presently in a 'flare' and it's gotten worse due to a huge personal disappointment. Because she was so upset yesterday she canceled her rheumatologist appointment and she needed to address her mental health as well. No good. Health comes first. Reschedule that appointment and talk to a mental health provider. 
2. Family. She has a son who needs to know she's available no matter what shape she's in. I learned that lesson the hard way by getting too wrapped up in my own grief over my brother's suicide this past year that I neglected my kids and one acted out when he felt it was finally safe to do so. 
3. Paid Work. As an advocate for others, like myself, she is always helping people for free but neglects work for which she can be paid. 

And because neither of us can stop it, I added a fourth which is our passion: Advocacy.

My friend champions the causes of those who are trampled on in Family Courts across the United States, mostly parents who lose their children under ridiculous rulings by the departments of child welfare. She does an amazing job. I am trained as a Court Appointed Special Advocate (CASA) for children in foster care and I have become involved in suicide awareness and prevention due to my brother's death last year. I've put the CASA work on hold because that would be my number five. That's too much.

I told her we're good enough as we are; doing what we can, when we can but taking care of ourselves comes first ... and praying doesn't hurt either. I hope she takes my advice. I'm trying to take it, too, because I overextend, over promise, overdo.

Chronic illness should not manage us. We must take back the reins and keep reminding ourselves that it's simply okay to just be.

Picture credit: http://www.princesswarriorlessons.com/

Crohn's Disease ... No laughing matter

Yes, I am related to Dr. Burrill B. Crohn. My grandfather, Myron, was his younger brother. This fantastic article was just published about the discovery of regional ileitis and how my brother, Steve Crohn, also contributed to far-reaching medical science leading to a cure for HIV.

I hope you find it interesting and educational.

The Pharmacologist - September 2014

Article begins on page 132.

Life takes its time...

Last time I wrote, I expounded on what it feels like to turn 54-years-old after never thinking that I would even live this long due to cancer, lupus and chronic illness. None of my doctors gave me any encouragement. But life takes its own time and I'm glad.

Today I celebrate my marriage of 30 years to the same man - yes, the same man! I know that is uncommon but I think it might have something to do with commitment and honor and love and - to tell the truth - neither of us ever had anywhere to go when we threatened to leave!

Albert Einstein said: "The only reason for time is so that everything doesn't happen at once."

Ain't it the truth. As I scroll through my memories, I could never have been able to understand them or learn from them if everything ended up in a jumbled pile of contorted stuff. That's why we process things as they come to us. That's why I'm not a big picture taker; I want to take in what I am experiencing, seeing, doing without worrying if I get the shot.

Yesterday was a great day for memories. A family day when my husband, two sons and I went to New York City to see STOMP off Broadway, walked from the theater to Little Italy and the Feast of San Gennaro and wound our way through masses of people, cutting through Chinatown, to get to an Italian restaurant my Italian husband remembered, the original Puglias. Not only did we eat delicious food and toast my son's 21st birthday, there was singing and clapping and waving of napkins and standing on chairs. Ahhhh life! It happens in moments.

Today I get to think of all those moments because I'm tired; oh so very tired. My disabilities render me physically useless the day after such a moment. This is when life takes its time and I get to remember yesterday and all the days, months, and years before.

The only thing we forgot to do was take a family picture! Rats. 

Mulberry Street, NYC

SUICIDE PREVENTION & EDUCATION WORKSHOPS

Hi, all. Please join me locally or visit SISFI for a full schedule of radio shows, workshops and other events taking place September 17th to October 3rd.  Suicide affects each and every one of us whether someone close to us completes suicide or we know others who have been impacted or even mentioned it aloud. This is especially timely due to the loss of comedian Robin Williams and, more personally for me, my brother, Steve Crohn. Thank you to Ossining Public Library and Ossining Communities That Care for making this happen in my hometown.

Dying to Live

Today is my birthday. I am 54 years old. Eighteen years ago I was pronounced dead on arrival at one of our local hospitals, suffering from a misdiagnosed cancerous tumor wedged between my heart and lung. I had Stage IV lymphoma. No one thought I'd live past that night let alone nearly another 20 years.

And live I have - sometimes with wild abandon and other times quietly and at peace. As stranger and stranger health issues crop up (due to the aggressive chemotherapy I received) and I remain a medical oddity, I triage myself and move on. Since I wasn't expected to live, no physician can predict the toll the cure took and how long it will rob me of certain abilities. Am I scared? Heck yeah.

This is why I try to choose to live each day as if it was my last while I dance like nobody's watching. That's doesn't mean I'm always Happy like Pharell Williams sings; nor does it mean I escape tragedy. Those of you who follow my blog know that I am brutally honest about the issues I face. No one is more surprised than me that I am able to face these challenges time and time again, especially the suicide of my brother, Steve Crohn.

I don't really want to celebrate this year. My brother's death occurred on August 24, 2013, just two days before my birthday. He sent me a card that arrived a few days later. It reads: "On your birthday, remember that every day is a gift. So pretend tomorrow is from me." At first, I thought it was a joke. Slowly but surely, I've come to accept that he was giving me permission to live many tomorrows even though he wouldn't be here.

At 54, I'm going to do something I vowed I would never do. I'm going to get a tattoo on my ankle of my brother's paint palette and paintbrush. The tattoo artist is working on a sketch now using his actual palette as a guide.

As I work to revise my book DYING TO LIVE: Running backwards through cancer, Lupus, and chronic illness, I am mindful of the many changes that have occurred in my life since I first wrote it. The title will change, the 'innards' will change, its scientific references will be updated and I will have to stop myself from writing a brand new book.

That's okay. I'm here; even if I had to die a hundred deaths in the past 18 years to stay.

Oh very young what will leave us this time...

...you're only dancing on this earth for a short while. ~ Cat Stevens

It's nearly a year since my brother, Steve Crohn, completed suicide. I know now this is the correct term when someone attempts and accomplishes their own death. And the news of Robin Williams' suicide has brought to the fore many of the feelings I had in August 2013. Why? Where? When? 

Why? Why? Why?

The experts and the talking heads and the never-ending news feeds tell us the easy answer is unmitigated depression/mental illness accompanied by substance abuse. Both were factors in my brother's and Williams' deaths. But is that all there is?

Since each one of us is unlike another (as Sesame Street taught us),we uniquely adapt to the challenges of our own lives. As I sit here and listen to a Cat Stevens collection of songs I'm reminded of when I was a teenager in the 1970's and listened intently to each of the composer and singer's words as if they held all the truths I would ever need to know. I may have been a little Hippie high at times but, often enough, I still allow myself to think this is true. And I listen again and again and again.

Oh baby. baby it's a wild world. It's hard to get by just upon a smile. 

Circumstances change, people change religions and names, we morph and mold ourselves into our own Morks and Mindys - creatures from our own minds and worlds. Sensitive souls build armor for protection. Confident personalities mask pain in a myriad of ways. The truth of it is, however, that we all experience suffering. It's what we do with it that makes all the difference.

I am in a lot of emotional pain today; grieving fully and wholly for my brother and making comparisons between him and Robin Williams. I don't know how I will feel on the 'angelversary' of my brother's death on August 24th, or on my 54th birthday two days later on August 26th, or on what would have been my brother's 67th birthday on September 5th. I'm just letting the feelings come.

Please allow yourself to do the same no matter what your troubles are today.

Oh very young, what will you leave us this time

You're only dancin' on this earth for a short while

And though your dreams may toss and turn you now

They will vanish away like your dads best jeans

Denim blue, faded up to the sky

And though you want them to last forever

You know they never will

(you know they never will)

And the patches make the goodbye harder still.

Oh very young what will you leave us this time

There'll never be a better chance to change your mind

And if you want this world to see a better day

Will you carry the words of love with you

Will you ride the great white bird into heaven

And though you want to last forever

You know you never will

(you know you never will)

And the goodbye makes the journey harder still.

Will you carry the words of love with you

Will you ride, oh, oooh

Oh very young, what will you leave us this time

You're only dancin' on this earth for a short while

Oh very young, what will you leave us this time