Fear

We all know fear in one form or another. Described 'dictionarily' it is: A distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined; the feeling or condition of being afraid. So what.

I think I've held life-long fear in my very bones. My near-death experiences from cancer and my daily struggles with Lupus and fibromyalgia and gastroparesis also keep me in a suspended state of never knowing what shoe will drop. In my case, I hope it's a red stilletto in homage and honor of my dear, departed friend and colleague Susan Murphy Milano, a tireless advocate for those abused by partners or spouses and the author of several books including her memoir, Holding My Hand Through Hell.

Fear has its hold on me through anxiety and terror, remnants of full-blown attacks of post traumatic stress disorder (PTSD) resulting from the emergency tracheotomy and the many, many horrific events of my cancer and ongoing tests, surgeries and treatment that continue to this day. Couple that with depression and I'm lucky I make it out of the house some days.

"Make a great day," I used to chirp to my sons as they would leave for elementary or middle school until they told me to shut my trap. I secretly hope they will repeat that to their own offspring one day. If they don't, I'll tell their wives to do it, if I get the chance.

Today, however, I'm really scared. I have loved ones who are facing medical tests and challenges that make me want to run away like my hair is on fire! I can't help but be empathetic yet also terrified. And the PTSD comes roaring back, in nightmares, massive anxiety, tension headaches and an ever-present cloud of uncertainty that rocks my world. I know this is 'fight or flight' syndrome. I may know it but - still - my conscious self can't correct my unconscious thoughts, feelings, and flat out fear.

For the past few days, I've been pissed off at everyone and letting them know. I had to literally check myself at the door last night to make sure I didn't do it again to my own nuclear family. It's not fun to live in fear although I feel as if I've been doing it all my life. I should be used to it, no? Does our crummy childhood or past experiences ever leave us alone?

Never. My upcoming memoir and website will clearly define how adverse childhood experiences do affect adult physical and mental health.

So I'll try my bag of soothing tricks including deep breathing, soft music, comfort foods - the usual. Again, I know what to do but it never gets easier. The 'bricks' are back - those knotted muscles in my shoulders that always seem to be in the up position. Yeah, yeah, there's meditation and yoga, too. Or simple walks with my dog. I know! Stop telling me what to do! I'll figure it out on my own, in my own time, in my own ways.

In the meantime, if you're struggling with fear, please know that you are not alone and many, many others are treading water, too. Cheers!

Owww

I'm having an 'ow' moment. And if my friends in my online autoimmune support group offer indication, they are all having 'ow' moments, too.

Those of us with Lupus, Fibromyalgia, Rheumatoid Arthritis, or any of the other hundreds of diseases and disorders that cause one's body to attack itself, we are all in this boat together. Living with these painful reminders of ourselves becomes rote. Most of us don't even feel the pain any longer unless we are reminded by a bump of the elbow, a twist of the wrist, or a simple kneel.

But then there are the days or weeks or months where the pain just doesn't seem to let up. Colder weather certainly affects us plus stress and overdoing anything. It's really hard to be a Type A personality with an autoimmune disorder!

My friends in the online group each have their own story, some that break my heart. Yet we all come together to support one another and offer guidance, advice, or simple and virtual {{gentle hugs}} to feel community - that knowledge that we are not alone in our pain.

As I plan a trip South where I will drive 12 hours over two days, I start to panic a bit. I put together my kit of essentials - car seat pillow, neck support pillow for sleeping, heating pad, BenGay or BioFreeze, special foods for my gastroparesis, ibuprofen and, of course, all my prescribed medications to last the up to two weeks I will be away. I also visited my local library to get two long books on CD. Listening to a book while driving keeps my anxiety level down and makes the trip more tolerable and even enjoyable. I do like my alone time.

I stay at the same hotel every time I make the trip so the management staff know me. I bring my dog, Shadow, and he provides comfort (and lap warmth in the car sometimes) but also forces me to walk which is a tremendous help to 'oil' my joints and something I haven't been able to do in the frigid cold in New York of late. Like the Tin Man in the Wizard of Oz, I see myself crying out: "Oil can. Oil can."

And then it's 'ahhhhhhh.' I've reached my destination - a condo near Myrtle Beach, South Carolina. Shadow practically leaps out of the car when I roll down the window to smell that we are there, in my wonderful world of warmth and exercise and oceanic beauty. This trip I am hoping to finally meet Dr. Dalal Akoury, the holistic practitioner who cared so tenderly for my dear friend and colleague, Susan Murphy Milano when she battled Stage IV cancer last year and whose book Holding My Hand Through Hell is a must read for anyone who went through childhood trauma of any kind. Susan's experience is all the proof I need that childhood maltreatment can lead to adult physical illness, a thesis my own memoir supports.

On this trip, I go alone and know that I have many friends there who can come to my aid, if needed. That, in  itself, is a great comfort. Laughing and joking with them when we go out for fun is great medicine, too. I just ask them not to hug me too hard when I arrive. When I depart, they can hug me as hard as they want because I suddenly feel 'cured,' free of most of the pain that I've banished while down South. The drive home is easier, too.

It's no accident that my husband and I purchased a condo within walking distance to a hospital. I've taken myself there at least once to get a bolus of steroids or pain medication. In years to come, they'll all get to know me, too, just like the ER staff at my local community hospital in New York. I've learned to manage myself and my disease and my pain.

For those of us with chronic illness, a trip like this is huge. My similarly-afflicted friends will understand and, perhaps, those who read this will understand that most pain is invisible - that we don't mean to isolate ourselves, be cranky, or cry. Sometimes it's just the pain - that damn pain. Bon voyage!

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

Writer's Blockhead

It's happened. A first for me, yet as I sit here trying to get back to work on my books and proposal, I feel like I'm stepping off a cliff.

I know that I will become immersed and completely unavailable to anyone or anything that wants or needs my attention. I know I will cry and laugh and be, once again, fascinated by medical research that supports the theory that childhood maltreatment contributes to adult physical illness such as the ACE Study.

I know I will become more aware of how important it is to stay on a path of holistic health while integrating traditional medicine as well as alternatives. I am blessed to learn of Dr. Dalal Akoury at AwareMed who breathes knowledge on this topic.

So my blockhead is cement; not unlike the other-worldly image of a statue that I have envisioned since I was a teenager that was my barometer of me. First thing in the morning, I would do a mental check of my statue and some days it would be teetering back and forth, other days a limb would be broken and laying on the ground and on another it might be in many pieces. Each daily image would signal to me how I should take care of myself that day - both mentally and physically.

Today, my statue is rock solid and impenetrable and even a bit obstinate (it's eyes are closed and it's arms are folded across its chest). So I'm taking it as a sign that now is not a good time to delve back into a memoir that is painful to edit, especially on the heels of the recent passing of my friend and colleague, Susan Murphy Milano to whom nothing was ever daunting enough to stop her except that damn cancer. I feel that my words may be colored by my anger and grief that she is really gone.

Besides, I convince myself, there is house cleaning and holiday decorations to pull out of storage and bring to cheerful life. I finished my holiday shopping completely via the internet. Gotta love that Cyber Monday!

But, to be honest, I am hurting today. My ailments - particularly Fibromyalgia are in full throttle. I tried to scrub the tub but it hurt. I walked the dog and it hurt. I am carrying laundry up and down the stairs but it hurts. I re-injured my back in a car incident on Thanksgiving day and it hurts. Tomorrow I'll get back into the physical therapy pool because I've got to keep moving through the pain and, perhaps, the next day will be writing/editing day.

This blockhead's deadlines loom but only by my own making. Now that I have a respectable amount of followers of this blog (mostly those signed up by email) and am learning the ins and outs of making it better (particularly for the European readers I seem to have according to my stats. Howdy mates!), I will get moving and writing and editing. It's the best medicine there is.

Autumn in Murrells Inlet South Carolina. 

"Remember What I Taught You."

R.I.P. Susan Murphy Milano

I have no words of wisdom, comfort or peace - just sorrow. My journey to raise awareness of the causes of cancer and the affect that childhood maltreatment has on adult physical illness will continue. I know one angel will make sure I remember what she taught me!

Graphic Credit: Amy Matthews

Holding My Hand Through Hell; By: Susan Murphy Milano

My dear friend and colleague, Susan Murphy Milano, had a virtual book launch last week. For the first time, Susan has written about herself and her early years into adulthood - years in which she witnessed her police officer father continually abuse her mother. Tragically, Susan's story leads to the death of both parents.

Today, due to her ongoing struggle with Stage 4 cancer, Susan can not travel and meet many of the thousands of victims she has helped as a tireless advocate for how to leave a relationship that includes intimate partner abuse. Her first book, Time's Up, was the impetus for so many to leave such dangerous relationships. Susan has saved many lives.

Another breakthrough for victims is Susan's creation of the Evidentiary Abuse Affidavit, born from the lunacy of the Drew Peterson case and his still missing fourth wife, Stacey Peterson. You can find it at the following link:
Document The Abuse

But most of all, I commend the woman who has thrown herself at life, knocking down walls and smashing through windows to help any and all victims at any cost. Her battle now is one that I know she faces with great courage and wisdom and grace (sprinkled with a little anger here and there, I'm sure). Never one to think of herself first, Susan has no health insurance. Fundraising continues daily for this brave and tireless crusader. Here are two links to fundraising sites. I hope you will take the time to learn a little about Susan and her miraculous work. She is a treasure and we can't afford to lose her.
Holding Her Hand Towards Heaven
Love, Susan

NOTE: I just read the latest Conquering Cancer blog post (above) and am devastated to learn the latest news. Please visit the sites and help any way you can. Thank you. And to my beloved Susan, may God hold you in his lap and keep you with Him always.