The Red-Stained Road to Remission

The Red Road to Remission

In public speeches, on this blog, and in daily life, I’ve spent two years talking about my struggles with pompholyx eczema, a little understood autoimmune disease. As a refresher, here are some basic facts about the mercurial condition, courtesy of DermNet:

“Pompholyx presents as recurrent crops of deep-seated blisters on the palms and soles. They cause intense itch and/or a burning sensation. The blisters peel off and the skin then appears red, dry and has painful fissures (cracks)….

Pompholyx is multifactorial. In many cases it appears to be related to sweating, as flares often occur during hot weather, humid conditions, or following emotional upset. Other contributing factors include:

  • Genetics
  • Contact with irritants such as water, detergents, solvents and friction
  • Association with contact allergy to nickel and other allergens
  • Inflammatory dermatophyte (tinea) infections
  • Adverse reaction to drugs, most often immunoglobulin therapy…

[Additional risks involve] secondary bacterial infection with Staphylococcus aureus and/or Streptococcus pyogenes…results in pain, swelling and pustules on the hands and feet.”

So yes, debilitating, painful and at times, humiliating. I’ve written about society’s tendency to treat another’s visible disfigurement as an acceptable conversation topic. Strangers ask rude, invasive questions – like “What happened to you? Did you get burned?” – that they wouldn’t dream of posing to someone in a wheelchair, for example. And very rarely was I in possession of answers.

The condition typically onsets during young adulthood. I was 34 years old – not a geezer, but past the blush of youth. There’s no pompholyx family history. I’m allergic to nickel as well as a number of medications. But that’s always been so, and reactions stop at vomiting and temporary hives. Also? My case exploded near the Thanksgiving holidays. I live in Chicago. So much for the hot, humid theory.

Emotional upset? That I can believe. When the initial outbreak occurred I was living in a studio apartment falling down around me, ending an 18-month relationship with a psychologically abusive alcoholic, the plaintiff in a lawsuit (ultimately resolved in my favor) and between jobs. I was a bit stressed, but for better or worse, my harrowing upbringing instilled excellent coping skills. Why now if not then? I’ll never know for sure what caused my autoimmune system to shift into hyper revolt.

Over 18 months ago, I wrote about being one of the lucky ones. Pompholyx has no known cure, and most patients endure interminable alternation between steroid therapy (which temporarily subdues the swelling and growth) and escalation. It’s miserable. I used to dream of happily cutting off fingers, a macabre but welcome relief. I’d often awake in tears when I realized all ten burning digits were still in place. Chronic pain is the enemy of rational thought.

But in one of those right place, right time, great mysteries of life, raw, organic beet juice presented itself as a solution when my medical team had just about exhausted available treatment options. Had I not discovered that disgusting, beautiful, natural, thick red elixir, I’d be on disability right now rather than climbing the corporate ladder, taking on new writing and leadership challenges, or preparing to teach my first collegiate course in the spring. I’d never have traveled to Alaska or fallen in love with Bob and our dogs. 20-30 ounces a shot, 5-7 days a week, and except for the part where every fluid emanating from my body was crimson tinged, I went on as I once was.

Beet juice was a part of life, was life itself. And then all of the sudden, toward the end of October, another miracle: the pompholyx went into remission. I’ve enjoyed nearly eight symptom, juice-free weeks and counting. In preparation for writing this post, I looked up the technical definition of that word: remission. These are the three explications offered by Google:

“1. the cancellation of a debt, charge, or penalty.

2. a diminution of the seriousness or intensity of disease or pain; a temporary recover

3. forgiveness of sins.”

Through sheer luck, I’m not in financial distress. And as an atheist, I don’t believe powers higher than myself and the needs of the global community are required to guide my moral code. Guilt and I are old, longtime friends. Yet when I look at the three varying definitions of “remission,” I relate to them all under present circumstances.

In the throes of acute physical suffering, it was easy (and romantic) to wonder if the bad juju I know I’ve put into the universe yielded deserved pain. I don’t need a god’s help to see that almost everything is connected. Somehow I’d asked for this. But if so, to whom could I plead for relief and absolution? It was too, chronically late.

I don’t know what led to this pause in physical torment any more than I can ascertain what led to it in the first place. Has existential debt been forgiven, or is it (a far more likely scenario) that my human body, with all its mysterious quirks, has finally caught up to the happiness, mental health and peace I experience through better life choices?

Remission. Rumination. Resolve. So many “R” words, so little certainty. Gray areas used to drive me batty. Now I can just be grateful for the calm, taking comfort in the knowledge that if symptoms return, there are beets.

Dogs & Cats, Living Together! Mass Hysteria!

Meko and Jude

This evening, during our regular constitutional with the dogs, Bob told me that Jude ate some random, discarded alley bread in the morning. Worse, it was the bleached white variety devoid of any nutrition or flavor. When they returned home, Jude made a beeline for the toilet in order to rinse his verboten snack down with some refreshing tank juice. An eight year-old, 65-pound Australian Shepherd/Rottweiler swarmed with affection, high quality food, medical care and fabulous designer dishes has the culinary inclinations of a starved Depression-era chain ganger. Bob and I imagined him a prisoner/bootlegger, using his white bread and john water to ferment jailhouse gin.

This is Jude.

In June, shortly after Bob and I began co-habitating, I came home to a household of three pets for one of the first times. Dino, my fluffy, four-pound, 16 year-old ball of kitty might, is renowned throughout the blogosphere. I’ve written about our relationship for some years. But life progresses unpredictably, and a woman never considered a dog person suddenly found herself eagerly learning the quirks and schedules of two new, very large babies. I met Bob one cold February night and that was it. My heart stretched to fit the exact dimensions of this motley crew.

I returned home that rainy June evening to Dino, Jude and our 10.5 year-old German Shepherd/Rottweiler mix, Meko. When Bob rescued her at age six, she had the longer name Kameko. Bob, ever the enemy of needless syllables, shortened the moniker. It fits. She’s a no-frills gal. I swear she even looks like a Meko.

Anyway Meko has been, as they say in the adoption world, “re-homed” twice. Bob is at least her third daddy. We’ll never know her complete history. But we’re certain that she’s very much afraid of storms. Not when she has the chance to run around in one in the yard, mind you. Fear of proximity would make entirely too much sense and dogs don’t operate on logic. Instead Meko cowers from tempests – but only when indoors. Actually no, cowers is absolutely the wrong word. More like she goes WWE on our garbage cans and rugs, tearing up the recyclable shopping bags with her considerable 70-pound fangs.

This is Meko.

So that June evening. It was raining rather intensely in the Chicago way, with lots of spring lightening and gusty wind. I walked home from the train after work as fast as I could, expecting to encounter one of two typical scenarios – a peed upon bath mat or golden showered doggie bed. Thankfully we have access to a large washing machine. But this was no rehearsed production. My adopted darling canines had much more in store for the new mom.

By workday because he is a grazer, tiny and both rescue dogs were ill-fed in their past lives (Bob adopted Jude at one, but the poor fella still has a strong aversion to old men bearing canes or umbrellas – sad and enduring), Dino is sequestered with his food, litter box, heating pad, kitty condo and water in our second bedroom. There’s a window facing East and the little bambino likes watching the sun rise.

One may access this room in two ways: a conventional door off a long hallway, or from a bathroom closet that hangs a sharp left into the back of the bedroom’s laundry space. No human being over the age of six can fit through the latter entrance, owing to the built-in (backless) shelves that straddle the width. But if one were to say, leave the bathroom closet door unlatched, there’s room enough for a burrowing duo of determined, troublemaking doggies.

On this stormy eve, as if ripped from an Edgar Allen Poe scene, I returned home to gruesome carnage. I entered through the kitchen and saw the red metal garbage can, slammed several feet distant into the front hall entrance – broken and twisted. Coffee grounds and stale beet juice remnants were smeared across three different rooms looking eerily like human waste and blood. Already horrified (by sight, smell and the knowledge that I’d be cleaning this mess) and unable to locate Jude and Meko, I ran toward the bathroom.

Sure enough, the closet door was open. I could see through it to the dramatically overturned laundry baskets that had been stacked against the french doors. Clean and dirty linens flung about the room in a tornado of chaos. Meko, the massacre’s ringleader, had burst through the blockade in a mad fit of rain distress, the sartorial fortress intended to add another layer between dog and cat food. Jude crept behind in her wake – the shameless scavenger. I’m not svelte enough to scrape through the passage, so I headed to the hallway to enter the second bedroom.

What greets me? The sight of two calm, satiated dogs leisurely relaxing on the floor, adjacent to a non-plussed feline covered in socks. Dino’s food (and water) of course long gone. I was furious. Dino looked at me with betrayed, accusing, hungry eyes (without the joy of the classic Eric Carmen tune).

But here’s where unmitigated gall surpassed credulity. Both pups had the nerve to look at me with innocent joy, I dare say relief, that someone they love came to the rescue. For as doggedly determined (pun intended) as they are to reach a goal, they’ve never figured out they need to retreat the way they invaded. Obedience school should teach the domestic harmony of covering crimes more intelligently.

Jude was so eager to run from a self-inflicted prison that he took off from his resting place like a shot, stepping on my bare right foot with untrimmed claws, cutting the big toe at the nailbed. Tons of delicate blood.

When Bob came home, I was in a fully outraged stir. Bandaged and 30 minutes into cleaning, straightening, and refreshing Dino’s food, I couldn’t wait to tell him what “his dogs” had done.

But as I started spinning my yarn (and you know? I do that), the body and spirit rejected righteous indignation. I reached the part of the story where Jude sliced my toe in haste to leave the scene, complete lack of guilt about his mien. I started laughing so hard I had no option but to let go. In anarchy, there is often delicious, humorous harmony. Bob labeled Meko’s destructive, trash and laundry-scattering fit, not an emulation of the Incredible Hulk, but rather a special Meko-brand Smash.

We giggled. Bob devised fake apologies and voices for the dogs, issuing long-winded regrets about our cheap, parental taste in cat food. He also created a bit involving an affronted Dino, shaking an elderly paw at the damned kids (middle-aged dogs) on his lawn. Then we laughed some more, toasted the silliness and wondered how we entertained ourselves before we became a family of five. A happy, messy menagerie.

13 Cars (June 21, 2014)

2014 began in acute pain: a broken heart handed to me by a long-time lover with demons; disintegrating, burning hands from the effects of pompholyx eczema. It was unimaginable that either condition could be brought into remission. I was a metaphorical and literal open wound.

Readers of this blog know what followed. I stumbled into an Al-Anon group to try to cope with the distorted and unmanageable nature of life, owing to unsuccessful efforts at controlling my former partner’s disease. It seems so obvious now, but I didn’t realize until fully immersed that I needed the group years before I loved an alcoholic. I was a habitual codependent. While my parents were neither drunks nor drug users, addictions of all types basically wear the same clothes.

Dovetailing with this form of cognitive and emotional healing, a dear friend inadvertently offered mitigation for the autoimmune disease that thousands of dollars and loads of harmful steroids and other drugs couldn’t provide. She asked me to try a bottle of cold pressed, raw, organic, dirt-flavored red beet juice. 20 ounces a day, everyday, since that first sip two months ago, and I’m nearly asymptomatic. Apparently miracles are not always delivered in flashy, explosive style. Sometimes they arrive in the guise of a root vegetable.

Six years ago, before the death of Jesika, before divorce and cancer, before the hard and enormously wrenching choices that put me on the path to the personal and professional satisfaction I enjoy at present, I darkened the doorway of Dr. T – my longterm therapist. My first words to her were something along the lines of, “Fix me before I lose everything.” Her initial response was some version of “I’ll work with you to figure things out if you’re ready, but you might lose some things. And maybe that’s ok, because maybe they’re not the right things.”

Scary words that left me with a huge decision: status quo or reinvention. I didn’t know much about myself at that time, but I was aware that I couldn’t continue on in the same way. I was exhausted. So I came back the following week, and the one after that. The first things we worked on: eye contact and graciously accepting praise.

The six years I’ve spent relearning to navigate the world with the help of Dr. T have not been marked by regular, linear progress. I think anyone who stood by me or suffered as a result of the Great Christmas Breakdown of 2011 will nod their head in agreement. Awakening and change have not come easy, as I suppose nothing worth the effort ever does.

However the inception of 2014 and the convention of the four horsewomen has unleashed a tidal wave. Bi-weekly therapy, Al-Anon, beet juice and a personal determination to break the unhealthy patterns that yielded repetitive relationship disasters. Last week while talking to Dr. T, I likened the experience to an unusual and dated pop culture sensation. I told her that I’d been procuring the right pieces for years, finally put them all together, and then like the great Evel Knievel, revved up the motorcycle engine. This year, I’ve come roaring back, and the personal growth leap I’ve taken feels like jumping that motorcycle over 13 cars. And I stuck the landing.

It’s kind of amazing to feel like you can do anything after decades of keeping yourself imprisoned. The people who were supposed to love and care for me as a child might have put me in the cage, but only by recognizing that I gradually became my own warden has the negotiation of freedom become possible. Serenity, courage and wisdom, nurtured one day a time, can produce death-defying feats.

Just Beet It (May 28, 2014)

I get a lot of my writing done these days in the wee hours of the morning, before most of the living world is awake. This in an incredible paradigm shift, surprising no one more than myself. Family members and former lovers can confirm that I am not, to understate the truth, so much a traditional early bird as a snarling, crabby, slow moving lady bear. Yet things are changing, in ways both large and small. And the bulk of these alterations stem from the unlikeliest and bitterest tasting of sources – raw, organic beet juice.

The root vegetable’s two most important effects: generating hope where once there was none and in tandem, reducing a vicious and aggressive case of pompholyx eczema to a nearly asymptomatic state. Over the course of a year, I sat helplessly and depressingly by as the initial outbreak grew, taking over the palm of both hands, the sensitive areas between thumb and pointer finger, the lower parts of each digit and in the case of my right hand, the tiny, heated, pus-filled blisters crawled across the back. No expensive, side-effect inducing medication could slow the progression. Twice daily topical steroid applications beat back current blisters, but did nothing to address the underlying condition. The ‘roids became less effective and necessitated breaks during which the growth became more bellicose. An endless, demoralizing cycle. And who’s to say what the long-term affects of the steroid administration could be on the rest of my body?

This morning I sit typing, looking at two hands that are in the best state they’ve enjoyed since early May 2013, when two little blisters were mistaken for a boxing glove-induced fungal infection. Beet juice. I am an avowed nonbeliever but for lack of more appropriate verbiage, it’s a miracle. 20 ounces per day. I try to eat right and make sensible choices to support absorption (the occasional doughnut or chicken wing aside) of whatever juice property it is that communicates with my skin, telling it the battle is over. The attacks are extraneous. The waste emanating from my body has turned a flaming shade of crimson and I am constantly wiping up small, blood red spills from tables, desks and nightstands. The bitter flavor of the juice will never create a palette sensation, but I have learned to love the harsh elixir. It is life in a cup.

I’ve always been a sucker for the underdog, a fan of victory snatched from the jaws of defeat. I’m living one such tale, fortunate to be able to watch the plot unfold in real time. Not six weeks ago, the dermatological team supporting my treatment offered a last ditch nuclear pharmaceutical option. For $1800, I could sign away three years of reproductive health for a medication guaranteed to hang around my system causing birth defects, if indeed childbirth were on my mind (it’s not). I couldn’t help but wonder, if the pills could destroy a mythical baby, what would they do to the rest of me? The list of potential side effects was as long as the Dead Sea parchments, detailing the risks of everything from suicide to liver failure. It was explained to me that I had no other recourse. This was the end of the line and if the medication failed, I’d best start preparing for disability and shopping around for one of those voice recognition typing programs.

But before I could raise the funds to fill the prescription, before I recruited my sister to spend the first night with me in case I should have a volatile reaction to the medication, an angel appeared in the snarky, adorable form of my childhood friend Jessica. “Try my juice cleanse” this cherub said.

There are no forms to sign before consuming beet juice. No risky side effects unless you consider soft skin, clear eyes, hydration and better quality sleep a liability. It’s not just the beets of course. I’ve reduced alcohol consumption to almost nothing, have returned to exercising the way I once did (hello again yoga and bike riding – previously too painful for my hands), drink other raw, organic juices of varying colors and eat lighter and healthier. It’s a funny thing. It’s difficult to understand how poorly we treat ourselves with food and beverage consumption and how challenging modern society makes it to take another road….until the stark reality of it all sort of falls into your lap.

And that’s it. So many expensive, complicated chemical solutions were tried and discarded but it it’s plain old nature that’s returned my life. There’s a lot of logistical planning and thought involved. No more cramming the nearest available food-like product into my maw and calling it a meal. But I’m coming back, healthier than ever. I’m giving myself a round of applause for the daily commitment it’s taking to heal – because, awesomely, it no longer hurts to do so.