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.

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.

Tilting at Windmills (February 27, 2014)

It’s been awhile since I wrote about the struggle to find some relief from an extreme, medical science confounding case of pompholyx eczema. Also known as dyshidrotic eczema, the condition is a really unfortunate autoimmune disease that manifests itself in swollen, pus-filled blisters that eventually consume the hands and bottoms of feet entirely. The blisters burn and itch, and after beating back a flare-up to a certain degree with topical steroids, patients are treated to peeling, cracking, flaky skin that is a magnet for infection. It’s unsightly, painful and makes many basic tasks challenging (washing dishes, exercise, writing) or outright impossible (swimming in pools, encounters with chemical cleaners or metal objects). Have a look at some really disturbing Google images to get an idea of where I’ve been, where I am and where I’m going. As yet my feet have been spared and I’d offer that the second picture from the left on the top row is where my hands stand today.

Most people afflicted with pompholyx experience acute symptoms that last for up to a month followed by brief periods of reprieve. I am approaching 10 months of continuous outbreak. I have spent most of the last year alternating between two weeks of steroid application, followed by two weeks of prescription-strength lotion to mitigate the cracking and peeling. Repeat ad nauseum. There are no definitive conclusions regarding the long-term use of topical steroids, but every doctor agrees it’s not a great idea. In addition to irreversibly thinning the skin on which they are applied, a steady flow of the chemicals are entering my blood stream. There are plenty of cautionary tales about how this affects the body from the sports world. Also, in the short term, steroids inhibit the skin’s ability to fight off bacterial or fungal infections. I am basically an immune system crash waiting to happen.

It is for these reasons that there are a number of other treatments dermatologists will recommend in extreme cases. The goal is to give the hands and body a break for however long that lasts, because pompholyx has no known cure. These treatments however offer no guarantee of success, and usually carry risky potential side effects of their own. For 12 weeks, I ingested progressively stronger doses of Methotrexate, a medication traditionally given to cancer patients undergoing chemotherapy. Its purpose is to try to suppress an overactive immune system, which is the biological root of my problem.

Methotrexate is taken once a week and among other detriments, it strains the liver and kidneys and significantly increases the risk of general illness or infection. In rarer cases (not mine fortunately), the drug also causes hallucinations. I emerged from the treatment none the worse off for having tried it, but none the better either. My condition remained impervious to the intervention. And even with the benefits of “good” insurance coverage, the experience flushed several hundred dollars down the drain.

More recently, my wonderful doctor (and she really is – all empathy, knowledge and urgency) recommended we try a course of UVB therapy. This has proven to help a significant percentage of people like me so there was every reason for hope, except I observed anecdotally that my flare-up was more extreme in the summer months than it has been throughout the winter. Another upside down state of affairs that seems unique to me. But it couldn’t hurt to try given the desperation. Six sessions was going to cost me $1800 out of pocket (thank you insurance deductibles) until my doctor offered me a sweetheart discount. Another $240 from my bank account spent on hope.

Well I think you know what happened next. My hands exploded. Yep, the rays of the sun are another huge trigger for me, a quirk that sets me apart from the rest of a small crowd of pompholyx sufferers. I had breakouts in areas never before afflicted, and already beleaguered skin swelled and pussed more extremely. Agony. Treatment was stopped and I was prescribed a super steroid (double the strength of its legacy cousin) just to bring me back to where I was before UVB.

I have a lot of feelings about all of this, not all of them entirely clear. There’s a good deal of fear and uncertainty in the mix. I am kind of out of options at this point, and it seems a life of steroids while I watch my appendages slowly decompose is a prospect with which I must come to terms.

When I read Harold Ramis’ obituary this week and saw that he passed from artery swelling, a complication stemming from an autoimmune disease, I blanched.

How can one ever really accept watching once beautiful, smooth hands, the extensions of the body that allow work, touch, feeling and expression (I am an Italian. There’s no talking without hands), atrophy? Forget the physical pain, the drain of my funds and the frustration of endless, ultimately pointless doctor visits and treatments. I am a doer, a solver. Yet here my only remaining role is that of a bystander, slowly defeated by my own body. I am learning in Al-Anon how to detach with love from the people and things I cannot control, in order to preserve my own sanity. Difficult enough to apply and practice with external influences. Much more challenging when the object from which you must detach is the self.