(Me, during Rosacea remission, with clear skin)
I'm basically a grateful, blessed, happy-ish person.
I've just spent the past five years building a career that so many said I could never have, one where I get paid to eat, play, and travel. It took me ages to set things up that way, but finally did it. I write blogs and books about my state and its people, I do food writing, I explore, I research things to the nines, and then share what I've learned with whoever I can.
I absolutely love what I do, and realize not everyone can say that, although I've practically worked myself ragged to get to that.
I had no idea that my dermatologist's words would be such a death knell. Rosacea? What's that? A little red skin? Big deal. I'd surpassed far worse.
I got concerned when he told me I'd have to be on meds that cost over $100/month... for life. I got even more of a clue when he took his exam light to my eyes, and told me I had ocular Rosacea, too. Okay. And that means?
He suspected that the Rosacea was advanced, but didn't share that at the time, just wrote me a lifetime 'sript for Doxycyclene. Have you ever read the long list of side effects for that stuff? This is the short list of items, but there's far worse I'm not yet willing to mention:
Abdominal or stomach tenderness, coughing, decreased appetite, difficulty swallowing, dizziness, fast heartbeat, fever, headaches, hives, inflammation of joints, muscle pain, numbness of face, hands, or feet, shortness of breath, and the special joy of unusual tiredness or weakness.
I wonder how a heavy duty antibiotic like that's going to shorten my days and quality of life.
You'd think a person would just live with the 'rash' right?
Not so fast. Just a day or two after I was diagnosed, I awoke to swollen cheeks, nose, and eyelids, red/purple in color. My vision was going fuzzy, and that scared me bad. How does a writer write when they can't see? I had deadlines for articles from several magazines, and some editing and resume writing work to get done.
I wondered how much of this was psychological, since everything had been kept pretty much at bay before I'd gone to see the skin doctor. I'd only gone because I had a small, manageable rash that was slowly creeping its way up my nose. Why the sudden flare up?
I got online to study things, and that got pretty discouraging. I read about permanent facial disfiguration and blindness, saw horrific photos of people with swelling red/purple rashes covering their face, neck, chest, and back, saw blinded eyes nearly swollen shut. I read about how people with this mystery disease become inward, hermits, depressed, and even suicidal.
People's personalities changed overnight. Outgoing, extroverted people shut themselves up in their rooms with the lights off. Because of their eyes, they couldn't even read, work on the computer, or watch TV. Would this be my fate?
After about 20 hours of research, I'll give you the spiel the dermatologist SHOULD have given me:
"You have Rosacea. And Rosacea is serious. 14 million Americans suffer from it, and no one knows what really causes it, but they think sunlight, stress, and diet might be large factors. At the root of things, though, is the fact that your gut has failed you and is now creating toxins vs. nutrients, and your breakneck lifestyle. There is no known cure.
Life as you know it will be different from now on. Rosacea is called a 'life disrupting disorder'. Since you're not willing to play gentle with your body/mind/spirit, you now have no choice. If you make no changes, you'll have a painful face that burns, itches, skin that thickens, and you could lose your eyesight. It's all up to you from now on, and I think deep inside, you knew this was coming.
The tanning beds, spicy food, late nights, Diet Pepsi, and your right up against deadline, adrenaline-stoked days are adding up, but even more than that, the toxins of negative thought, holding in anger, sadness, your opinion, and 'sucking it up' have combined to weaken your organs, strain your liver and kidneys, render your gut ineffective, and, ultimately, show up as Rosacea.
Your body's been trying to tell you to slow down, draw boundaries, and be more honest about your feelings for a long, long time. While all the websites might warn you about diet, staying away from the sun, avoiding preservatives, working out, heat, steam baths, wind, cool temperatures, and certain shampoos and lotions...this is EMOTIONAL, SPIRITUAL, and PSYCHOLOGICAL. The skin, your body's largest organ, is the last of the victims. Still not willing to completely fail you, your body is literally giving you a big red, burning STOP sign. One you can't miss."
That's what he should've said. Instead I got, "You have this, here's some medicine, and they'll take care of your bill at the front desk."
So. Deep breaths. Okay.
The Rosacea went wild within the first few days, and I didn't want to see anyone, didn't want to go out. It was summer, and 100 degree weather. I was talked into going to a Saturday matinee, convinced by the fact that I'd be in the dark and see very few people during the film...and that was a mistake. It was a 3-D film, and the glasses sat painfully on my burning, swelling face. On the way home, the sunlight made my nose break open and bleed.
My friend and I also stopped at a filling station, where I ran in to use the restroom and covered my flaming face with my hands, in an effort to hide. This was so unlike me, who's never met a stranger, since they typically become fast friends. And now...I was hiding myself.
The next day was even worse. Someone described Rosacea as taking a Brill-o pad to your skin, and that's exactly accurate. It hurts at least that bad. Portions of my face were swelling to oblivion, and I was doing some serious thinking and deal-making with God, evaluating the relationships that stressed me, not blessed me.
I thought about the deadlines I'd previously thrived on, and how I could write articles just as soon as they were assigned, instead of waiting and allowing the adrenaline to motivate me.
I thought about the spicy foods I adored, the sunlight I worshiped, and about how I might navigate through life without relying on somewhat decent looks, a suntan, cosmetics, and possibly even eyesight.
I did an awful lot of thinking. And when the gory internet images of Rosacea and my stressful life evaluation got to be too much for me, I laid myself down to take a nap, and, let's be honest, to have a good long cry.
The salty tears felt like they were boring holes into my skin, making the situation that much more undeniable, and I cried even harder. I told God I'd create whatever changes in relationships, lifestyle, and diet I'd have to make, if He'd just take this disease away, or at least quell it considerably.
That night my sister, who's super into essential oils, suggested I sleep with my face slathered in lavender oil. When I woke up the next morning, the bumps and swelling were gone. My face still burned a little, but it looked more like a sunburn, and the skin was smooth enough to cover up with foundation. I'd only been on the Doxcycline a few days, so it had to have been the lavender. It seemed like a miracle. It also seemed like God was saying, "You got your answer overnight. Now it's your turn to make good."
I had a reprieve of almost a month, with minor breakouts, but nothing as bad as at first. Forgetting my God promises, I chilled down on them, working right up to deadlines, staying up late, drinking a few Diet Pepsis here and there, and imbibing in salsas, a couple of peppers, and a fast-food cheeseburger.
Nothing seemed to happen, and I got cocky with it. I ate sugar and gluten...two huge no-nos for Rosacea people. I ate high-preservatived stuff. Also gigantically wrong. I got so confident, I cut my Doxycyclene dose in half, taking one pill per day vs. the recommended two. Nothing bad seemed to happen, and I bragged about being smarter than my doctor. I was still sleeping every night with the lavender on my face, since that had seemed like the partial cure.
I wasn't fooled into thinking the Rosacea wasn't with me. Sometimes when I got stressed or ate something naughty, I'd feel the familiar burning, but it didn't stay. I figured my trusty body was slowly kicking it, like I'd kicked every other ailment I'd ever had.
Ten days after cutting my dosage by half, my skin began acting up. First it itched, then it burned, then the familiar swelling of the cheeks. I told myself it would never be as bad as it was, that I'd overcome that. Not so...but this time with a twist. Everything I viewed was getting fuzzy, no matter how often I applied drops to my eyes, or took out my contacts to clean them and reinsert. Even without the lenses, I could no longer see clearly up close, when I'd always been able to before. This meant it was an eye problem, not a lens problem. I began suffering headaches from trying to see clearly.
The time I'd bought, I'd pretty much squandered. Research is harder to do with fuzzy vision. Organizing and prepping for whatever's coming could be a bit more technical. And I regret not making all of the business or personal appointments I should have made during the respite where my skin actually looked better than ever...but I'm determined to achieve another remission. This is a good reminder to seize the day, since I just never know what I'll wake up to. Every day of presentable skin is truly a gift.
When I was first told about the Rosacea, I shared with someone very close to me that I had just been diagnosed with something potentially chronic, and they actually began to grin. As I explained the repercussions, that grin didn't fade, it only seemed to grow, and was followed by comments about Winston Churchill and W.C. Fields...two well-known public figures with obvious Rosacea.
I have no idea what that person could have been thinking. Maybe they thought I'd been excessively vain, or too full of myself from what was becoming a successful writing career, who knows. I saw no humor in it, so why did they? It seemed the thought was, "This'll fix her!" (And it will, I've been more humbled than I've ever been in my entire life.)
The calloused comments, and the grinning...that devastated me.
Back to the drawing board. Once again I'm reminded of the many changes, large and small, that I'll need to make if I have any hope to regain good skin and clear vision. This is serious, this is real, and when it's on your face, there's literally nowhere left to run. I'm also painfully aware that I'm on the clock.
What can be done now?
-I'll go back to full strength on that damned Doxycyclene, but will detest doing that and constantly look for ways to shrug it.
-One spiritual woman that's online swears she cured herself (and has the photos to prove it), and tells her followers, "Your negative thoughts stop as of today. From now on, you must only talk lovingly to yourself, in ways that are no longer toxic."
I can do that. It will take a while to change that habit, but I can do that. I'm pretty freaking motivated.
-I'll continue practicing strident skin care, exfoliating and massaging skin with my fingertips and a mild cleanser (like Cerave) each morning, night, and if I'm working from home, at lunch time, too.
-I've also studied how fasting affects the liver and gut. One man, riddled with Rosacea, had to do a water-only fast for 18 days to rid himself once and for all of the disease, and if the story is true, (I'll find out for sure before starting to fast to that extent) it never came back.
That sounds extreme, but extreme diseases call for extreme measures.
Change my life, change my schedule, change my diet, my relationships...fasting...
I'll do anything to be free of this.
*Since there's a lot of crappy information on Rosacea that just leaves a person more confused than before, I'll tell you what does and does not work for me in either quelling or (I'm thinking bigger than that, here) getting rid of it altogether.
Prayers would be appreciated.
