Off the keyboard of Gypsy Mama
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Published on The Butterchurn on October 15, 2013
Discuss this article at the Kitchen Sink inside the Diner
I’ve been working on writing a blog about this for quite some time now. My time, however, has been occupied mostly by trying to juggle being a “new to two” mother. I’ve revised this blog post over and over again. Frankly, I’m tired of revising it during the short time frames in which I both have free time to write and am also not tired enough to watch some Netflix instead. So, here is a combination of what I’ve written over the past few months about my hands. My witchy, wrinkly, crusty, itchy hands. I’m also extremely SICK of having to talk about these hands. I’m kind of getting used to dealing with them, really. Fuck these hands. Here are some exerts from my continuous stream of writing:
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Tomorrow my lover and I plan to work. To work our job, we’ll need to photograph items to post for sale on Ebay. Tomorrow, I’ll be using a new set of hands to work with. For the past three months I have been struggling with an excruciating, debilitating case of dyshidrotic eczema. The fingers of my hands were so laden with this oozing, crusty, flaky, bleedy, itchy ailment that just a month ago, I could barely hold my newborn son.
I was a slave to white cotton gloves, petroleum jelly, Coconut Oil, Dial antibacterial soap and off brand Neosporin. I was a creature of an unwanted yet necessary routine:
Disinfect hands with dial soap.
Coat in Neosporin.
Coat again in White Petroleum Jelly.
Wrap in White Cotton Gloves.
Don’t itch.
Don’t touch anything.
The last on the list, “Don’t touch anything” was the hardest step of my regimented routine. I have a newborn son, Harper Tribann. He will be fourteen weeks old this Sunday. How can a Mother not TOUCH her newborn son??? The severity of my hand eczema was so intense that it was physically painful for me to hold him. He needed me. I was distraught.
I have been through one of the most intensely painful, insanely stressful, psychological challenges of my life over the past two months. I’ve been struggling with severe eczema on both of my hands. It is painful. It is itchy. It is crackly and peely and oozy and crusty and not very socially acceptable. I’ve been stewing on how to write about this topic. At first, I thought about writing a raging blog of blame. A blog to release my outrage onto our twisted standards of normality. I wanted to blame something, someone for my ailment.
I have tried to write about how my hand eczema (dyshidrosis) has affected me, several times over the past few weeks. I’ve started typing, and couldn’t finish because I wasn’t completely healed, and therefore felt the story I was writing had no end. I finally feel comfortable enough now to feel as if the end of suffering is near. My hands, I feel, have regenerated themselves. I am convinced that the skin on my fingers has been reborn. I have baby soft, newly evolved finger skin You can’t imagine how happy it makes me feel to be able to say that. They aren’t pretty…but they are diamonds as compared to their former coal state.
Am I fully in the clear? No. Not by a long shot. I still have to continue a regular routine of hydration. My hands have to be moisturized pretty much at all times. Just like a baby’s skin…my hands require constant attention.
In my journey, I’ve learned to be glad that I was able to heal with the minimal use of corticosteroids. Corticosteroids are routinely prescribed as treatment for eczema sufferers. They have many side effects (scary ones…like steroid psychosis). Read into the side effects of corticosteroids for yourself, and you’ll see why their minimal usage is the golden goose of this story. For example:
Below Source: Wikipedia: http://en.wikipedia.org/wiki/Corticosteroid
Corticosteroids are a class of chemicals that includes steroid hormones naturally produced in the adrenal cortex of vertebrates and analogues of these hormones that are synthesized in laboratories. Corticosteroids are involved in a wide range of physiological processes, including stress response, immune response, and regulation of inflammation, carbohydrate metabolism, protein catabolism, blood electrolyte levels, and behavior.
It’s got electrolytes. Perfect example of how poisoned we are.
Synthetic pharmaceutical drugs with corticosteroid-like effects are used in a variety of conditions, ranging from brain tumors to skin diseases.
Corticosteroids have been widely used in treating people with traumatic brain injury.
First known use was in 1944.
Side effects such as cutaneous addiction with the development of uncomfortable and unsightly dermatoses, can occur with just one 15 g (!!!) tube of moderate steroid over a period of one year.
I have used a HELL OF A LOT MORE than a 15g tube in a year’s time. Just to let you in on just how severe an outbreak I had, I currently hold a prescription for TWO 60 g tubes of steroid creme. Corticosteroids are SCARY and should be avoided at all costs. I believe that the “unsightly dermatoses” that was listed as a side effect to overuse/addiction explains a lot about the severity of my last outbreak.
Need another example why I’m ANTI-CORTICOSTERIOID?
Use of corticosteroids has several severe side-effects as for example: steroid psychosis,[19] hyperglycemia,[20] insulin resistance, diabetes mellitus,[20] osteoporosis, cataract, anxiety,[20] depression, colitis, hypertension, ictus, erectile dysfunction, hypogonadism, hypothyroidism, amenorrhoea, and retinopathy.
The choices that the dermatologist, general practitioner and allergist gave me as treatment options were:
A.) corticosteroid prescriptions, including topical cremes and Prednisone.
B.) Suffer through it and use lots of lotion.
I won’t be able to write about all of the stages of psychological distress I went through during the healing process. There are too many tales to tell. In short, I chose option B, with a few relapses out of painful desperation to option A.
The best way that I can show you a glimpse into my mind during the healing process is to simply share with you a few of my thoughts . They may seem a bit psychotic to you… That is, if you have never had to deal with eczema. If you suffer from this ailment on any level, chances are you can connect to some of the thoughts that ran through my head through the depths of this skin disease. Or maybe I just took one too many corticosteroid treatments before I decided to stop using them?
Here are a few of the things I remember thinking while my hands were at their worst.
Dyshidrosis is a psychological disorder.
Is dyshidrosis more commonly found in women with newborns?
Is this a bacterial infection?
Will I ever be able to use my hands the same way again?
Did gardening without gloves, combined with the lack of antibacterial soaps and hand sanitizer in our home cause this? (AKA: was I too much of a hippy?)
Is this a sanitation issue? (My Mother thought it was).
Has this ailment caused me to connect less with my baby (ex: not holding him enough because it hurts to use my hands to hold him), and therefore caused me to produce less breast milk?
Is there a link between eczema and fungal infections? Why do my fingernails look so disgusting?
I felt as if my stress was pouring out of my hands. My hands were itching with the force of fire. When an itching episode would emerge, it was as if I could feel the disease writhing through my bloodstream.
I was in agony.
Was I suffering from a side effect of the corticosteroids of my past? Was I dealing with the worst eczema outbreak of my life because of prescription medications that numerous doctors had prescribed me? I have no other logical answers.
Of course, the answer to my dilemma changed over time. I was so ready to have an answer to my ailment that each thing that seemed logical was instantly roped and pulley-d to the top of the reasoning flagpole.
I arrived at the following conclusions that I was satisfied with for a limited amount of time on my journey:
There’s something funky in our kitchen towels.
I am allergic to Charlie’s Soap.
I have a bacterial infection.
I have a gluten allergy.
Our food system has poisoned me.
I’m allergic to pretty much every modern day skin product.
I am allergic to water ( sounds hilarious, right? It felt true at the time. Trust me.)
(The majority of these false(?) conclusions were arrived at due to the placement of the eczema on my hands. It extended over my fingertips and to my knuckles on each and every finger except my thumbs.)
“We live in a toxic world.” I don’t know how many times I’ve heard LD make this comment since we’ve been married.
I’ve struggled with eczema since childhood. It was always controllable in my youth. In my adulthood, it has steadily worsened. My eczema has most recently been a vicious beast. A beast who seeps through your skin in the form of water blisters that itch until you scratch them open. If you abstain from scratching, they will often do the task of bursting open for you. Once they are open, they begin to spread their ooze all over your skin. Growing like a culture in a petri dish. The itching is unbearable, so you eventually scratch. The beast has got you now!!!! Once you scratch, the skin is an open sore. The skin begins to crack and if you’re not careful, it will begin to bleed, while oozing and scratching. My own painful, cruel, outbreak.
The past few months, my eczema was the worst it has been in my life. My fingers were swollen with edema, covered in ooze and were so cracked and bleeding that I couldn’t even straighten them or form a fist. They were only comfortable in a mannequin-like pose. Fingers slightly apart and slightly curved. I could no longer do household chores around the house. I couldn’t open the juice container to refill Zen’s juice cup. I couldn’t change Tribann’s diaper without pausing to retain mind over matter when he grabbed one of my fingers or kicked another. Doing dishes was out of the question. Putting up laundry could not even be accomplished without wearing gloves, for fear of dripping ooze all over the freshly washed clothes. If I decided to wear gloves to handle these chores anyway, the gloves would often STICK TO THE OOZE. I’d have to painfully pry the gloves off of my crust infested fingers, separating the dried ooze from the cotton fibers of the glove. It HURT. No way to cover up this predicament so that I could function. I was miserable.
Nice article to read, huh? Everyone loves the combination of the words “blood, ooze, scratching, painful and cracking” in more than one paragraph, right? Eczema is an ailment that most people do not want to talk about. If they have it, they shield it from the world. They don’t want others to see their socially unacceptable wounds. This is, at least, what I’ve heard from fellow eczema sufferers and have also experienced for myself.
For the past few weeks, I’ve stayed at home, keeping tasks at a minimum, trying to re-cooperate. Finally, last week, I decided that I was going to have to get out of the house and keep my mind off of this crap. I decided that I would take Zen and Tribann to the library’s story time.
When one wears white, cotton gloves out in public in the middle of July…the public eye glances when you aren’t looking. When you combine white gloves and a swollen, red, gypsy eye…the public eye studies you from afar behind whispers and curiosity. Can’t blame them.
When a few of the mothers asked me “What’s with the gloves?” I made jokes about having a job as a mime on the side. I told one woman that I was just feeling fancy that day. I followed up both of the jokes with “I have a severe eczema outbreak going on right now on my hands.” Each woman instantly began telling me about how someone they knew or loved had also struggled with this painful atopical dermatitis.
Soon, the question arose in my mind: How long has eczema been around? Has it gained steam since our soaps and cleaning products began being produced with chemical compounds we can’t pronounce? Do the preservatives and ingredients of our food that are 18 letters long have anything to do with this outbreak? This is still a theory that I want to explore.
Eczema is, by the definition of Wikipedia, a “condition whose cause is unknown.”
Great.
After doing a bit of online research about Eczema, I discovered that there are multiple types. This is how I discovered “Dyshidrosis” or “Dyshidrotic Eczema.” FINALLY. I felt as if I had found the specific definition of what ails me. The photo struck a nerve. “There it is”, I thought.
Source: http://en.wikipedia.org/wiki/Dyshidrosis
“It is an acute, chronic, or recurrent dermatosis of the fingers, palms, and soles, characterized by a sudden onset of many deep-seated pruritic, clear vesicles; later, scaling, fissures and lichenification occur.”
Apparently this particular form is known as “dish pan hands” around the net, as well. Having this ailment is like being allergic to water. Water actually AGGRAVATES your hands into an outbreak. Luckily for me, I married Aquaman so that he can handle and control the water for me
Blisters may itch, cause pain, or produce no symptoms at all. They worsen after contact with soap, water, or irritating substances.
Lucid has been incredible. I repeat: INCREDIBLE during the healing process. He has stepped in to handle all of the household dishes, laundry and cleaning. Drool worthy, eh ladies?
I am convinced more and more each day that Aaron is my soulmate. He and I are so right for each other…it is a connection beyond this world. We were meant to meet (while playing pool in a bar). Our commonalities have always tipped the attraction meter. As a matter of fact, as soon as he and I spoke to each other the first time, a U2 song played on the bar jukebox. Neither one of us had selected this song. Shortly after the song started playing, he showed me his U2 tattoo Our compatibility only grew from there. I love my husband. Want me to carry on with the mushy? I totally could. LOVE HIM! (for more reasons than the fact that he can hammer out some dishes and laundry, of course). I love him more and more each day, in a new way, through a new lens, in a different colored light.
On my “take ‘er easy” break, (thanks to Aaron), Slowly my hands began to heal. I sat on the couch like a princess with my hands doused in a creme the ladies at the front counter of the doctors office had recommend (Elta Tar). I watched as Lucid HANDLED the task of being…well, pretty much a single Dad for about a week. (love him). I watched as my hands began to heal.
“There are many different factors that may trigger the outbreak of dyshidrosis such as allergens, physical and/or mental stress, or seasonal changes. “
During the healing process, I took a trip to a nurse practitioner. She, of course, tried to prescribe me corticosteroids. I am allergic to Cortisone, so it is a lose/lose battle for me to play that skin thinning game (skin thinning, being a side effect of long term use of corticosteroids). She tried to get me to accept a prescription for Prednisone. I denied it.
Aaron and I are convinced that stress (via many changes in our life at once) was the major cause of the outbreak. Mix this with chemical allergies, and you’ve got meat grinder hands. To avoid chronic outbreaks, I’ve been trying my best to keep my “mind right” and stay calm. I often tell myself to “Slow Down” and “Relax.” Practicing these methods of self control/calming have helped tremendously, but credit should also be lathered upon Aaron (again) for taking the majority of the stress away in the form of household duties. He also helped relieve lots of my stress in ahem other ways I’ve also begun a regimented process of using Cetaphil Lotion to wash my hands. I later up my hands with Cetaphil and then pat them dry on a hand towel. I do not wash my hands with water. I wash them with Cetaphil. It has been working! (so far). These things, mixed with nighttime dips in Elta Tar and NO SCRATCHING has seemed to tame the beast.
All in all…I’m still pretty angry at the lack of quality, natural products our culture has to offer us. Why can’t I just use a SOAP to wash my hands, for cryin’ out loud!?!?! Why should I have to read the ingredients of EVERY beauty product I purchase? Why can’t soap be soap? *SIGH*.
We live in a toxic world!
On Monday of this week, I went to the allergist. I told him that I feared I may have a food allergy that was coming out in the form of eczema. I let him know that I believed I had dyshidrotic eczema. I showed him the Wiki article I had printed out and told him about how I had read that nickel, oatmeal and chocolate were suspected causes of the disorder. I asked him to test for every possible food allergy he could. He agreed to run a full panel on me.
I was pricked sixty times on my back.
Some of the pricks, I could immediately tell I was reactive to. I could feel an instant itch, almost like a mosquito bite. Others took awhile, but soon I could feel itching all across my back.
“Uh oh” I thought.
Uh oh was right. I was allergic to 19 out of 60 of the items included in the testing, including Milk, peanut, egg whites, Oat and dust mites….all listed in Wikipedia articles I’d read about eczema and dyshidrosis.
http://en.wikipedia.org/wiki/Dyshidrosis
Allergic reactions of various kinds, including allergies to nickel which is present in many foods and vitamins (i.e. oatmeal, canned foods).[3] A randomized, double-blind, placebo-controlled cross-over study by the University Medical Center Groningen reported that dyshidrosis outbreaks on the hands increased significantly among those allergic to house dust mites, following inhalation of house dust mite allergen.[4]
Ingestion of alcohol; the dehydrating effects of alcohol may exacerbate the severity of the fissures and cracking.
Inherited, not contagious. Often, patients will present with other types of dermatitis, such as Seborrhoeic dermatitis or atopic eczema. For this reason, among others, dyshidrosis is often dismissed as atopic eczema or contact dermatitis.
This Wednesday, I also took a trip to the dermatologist. She was not open to discuss an answer to my question about a possible link between breastfeeding mothers and dyshidrosis. She was methodical and impersonal and wrote me a script and was out the door. I was more or less DISMISSED. I later learned, after having a conversation with her nurse, that eczema was the number one ailment of all of the patients who came into their practice for treatment. I asked if she had noticed an increase in eczema sufferers in the past few years. She agreed that yes, she had noticed more patients with eczema.
Dismissed by the ministry of health, and given option A vs. B, I’ve thankfully been able to discuss my thoughts, feelings and theories about dyshidrosis with a close friend of mine, who also suffered a debilitating bout about a year ago. She also had a newborn at the time. She had breastfeeding issues. She also rejected corticosteroids and attempted to walk the natural path. I hope to share her story soon. Perhaps in a podcast over at the diner.
I have battled the eczema swale in a paddle boat.
Here’s to hoping that I’m through the worst of the storm in this toxic world. I’ll keep paddling until some of my questions and theories are answered. It’s all I can do.
I took the following photos today, after moving mulch “earth” with Aaron. It had just begun raining. I often study my hands. In today’s hand study, I noticed mica scattered all over my coal hands…sparkling in the new rain like diamonds.
These hands may still appear unhealthy to you. You may be wondering why I feel as if the end of the healing process is near when I carry these hands. Let this speak to you. The hands you see in this photo are so much better now than they were before…enough so, in fact, that I’m happy to show them off. I know they still aren’t picturesque or “normal”, but I also know that it is a relief to look down at these hands and not see something like they were before. Below are a few images that are similar to what my hands looked like. The last, of which, is a pretty similar picture of how they were toward the end. Meat grinder hands.
I am also happy to report that my magical gypsy eye no longer looks something like this:
(I did take photos of my hands and eye during the healing process. They have been misplaced. Probably a good thing for you, the viewer. I only hope that my description of them can create an even better visual picture.)
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If you also suffer from this ailment…godspeed, my friend. I recommend you visit an allergist. After much trouble shooting, as an October update to the above writing, we’re fairly certain that dairy and peanuts are the main cause of my troubles. I’ve unwillingly removed cheese, milk, sour cream, whey, (etc in the dairy products list) from my diet. My hands are much happier about this.
A few times, I’ve eaten peanuts and have seen the ooze re-appear.
I still wonder if having a carpeted house has caused my dust mite allergy to erupt through my hands.
Is it a combination of my topical allergies and my diet? I’m still on the road to discovery about that theory. It is going to be a long, winding journey to get this ailment under control. But at least, at this point, I can use my hands to type my story.