In the past, I have written about and mentioned “my hands.” For the past two years, I have suffered from an onslaught of what the medical profession calls, “Dyshidrotic Eczema.” I call it “torture” or “The Beast.” When I’m having an “outbreak”, my hands are practically useless. Do you have any idea what it is like to not be able to use your hands? Some of you, who may suffer from this ailment will have no problem answering with a resounding, “YES. I DO know what that is like.” Some of you reading this who may suffer from much worse ailments than I am about to write about…please forgive me if my plight seems trivial to you. There are many, many worse things that could have happened to me or could happen to me in the future. I am well aware of that. Please, however, remember that I am describing what ails me. I have a healthy perspective that it could “always be worse.” However, there is no reason for me to not tell my story simply because there are worse tales to tell. I personally believe my tale to be pretty horrible. I’m not stuck on that negativity any more…but this story needs to be told. This post will be therapeutic for me. My hope is that it will also help my fellow suffers of this disease/ailment.
Let’s begin with a brief description of my fingers: Cracking, oozing, bleeding, popping, rash covered, itching, fluid filled, crusty, sausage-like. When this disease first began, it was centralized to my fingers. Then it spread across the top of my hands, into the creases of my elbows, up my arms and across my chest. It also affected my right eyelid.
Next, let’s include a few pictures. They aren’t great…but remember, I couldn’t use my hands…so holding an electronic device with oozing fingers covered in coconut oil wasn’t great idea. Documenting them at their worst (this time), however, was important to me. I knew that one day they would heal, even though through the worst of it, it felt hopeless. I wanted to die. I lost all faith in myself. I just wanted to be able to interact with my world.
I wore gloves so that I wouldn’t scratch open my blisters. I wore gloves so that I wouldn’t have to see my hands. I wore gloves to attempt to keep my sanity intact. I wore gloves so that I would feel normal. I wore gloves…so that I wouldn’t grease the doors, door knobs, refrigerator, dryer, washer, dishwasher, bed, chairs, blankets… etc, etc, etc, of our home.
I am really upset with how allopathic medicine has failed to do much research about eczema. Eczema is like Cancer, in that no one can really give a definite, scientific answer as to WHY it happens…WHERE it comes from. It is a mystery. In a set of previous blogs that I have written about my skin and Dyshidrotic Eczema, I have seen a resounding number of fellow suffers mention that they believe that this disorder begins in the gut. I am highly interested in this theory, although I have not yet tested it out myself. The GAPS diet keeps appearing in discussions about DE. “Heal the gut, heal your skin” is repeated. Take probiotics. Take vitamins. Use this lotion, not that one. Don’t eat this. Drink this, not this. At this point in my life, my hands are in “remission” so I am trying to do all I can to NOT focus on my skin as much as I was forced to in the past when they were in outbreak stage. It seems that when my hands start getting bad, I instantly begin attempting to find a cure for myself. When my hands are manageable, I try to live life at its fullest. Perhaps I should keep putting positive energy for a cure into my daily regiment…but frankly, it is exhausting to constantly think about the “what if’s, maybe I could’s, should I not’s, I could change“…and on and on. So now, I’m going to tell you what I have done in the past. I’m going to relay to you my trials and errors. Before I begin, however, I must relay to you that I believe that this ailment is not only caused by problems in the gut. I believe that it is also caused by problems in the mind.
When our second son was born, it was magical. I gave birth to him naturally in a tub of tepid water. My husband and two midwifes were there to witness his birth. He was born “in the caul.” Well, not fully in the caul, but he had a little magic cap upon his entrance into the world. The first few months were great, but then we began having trouble with breastfeeding. He cried, oh man did he cry…it was painful to hear, especially to a new Mother. Nothing I could do would stop the crying. It was torturous. We were never given a medical reason for his cries, other than he was a very vocal child and that he probably had colic. My hands/skin responded with a fight or flight response. I felt helpless. My hands became mannequin hands. I couldn’t bend my fingers. I doused them in steroid cremes, but they didn’t help. Then I had steroid withdrawals, and red skin syndrome. This experience caused me to be terrified of steroids. It also made me a bit crazy.
So…where to turn next? The internet, I suppose. I found Plantain. I began going out into our yard to make plantain poultices. It DID work well for me, but the blisters kept on coming. I still recommend plantain. I began using coconut oil as a moisturizer. Then I found a product called, “Elta Tar.” It seemed to keep the blisters at bay and calm the itching, but then one day I read the fine print on the container while I was soaking my hands in the product and read that it had been known to Cause cancer. WTF. Great. I returned to the coconut oil.
Next I tried Magnesium Oil. It was VERY painful to place on my hands, because there was ALWAYS an open wound. I couldn’t handle it. It did stop the itching…but only because the itching was replaced by stinging and pain. I returned to using only coconut oil.
I decided to make a trip to the allergist. The dermatologist had only prescribed steroid cremes that made it worse, so I was afraid of him/sterioids. The allergist ordered a prick test for allergies, performed on my back. It came back that I was allergic to 21 out of the 60 things I was tested for. I stopped eating everything that I tested positive for, including cow’s milk products (cheese!), chicken, turkey, fish, egg whites, strawberries, garlic, oats…
Then I tried Apple Cider Vinegar Soaks. This type of pain was worse than childbirth. It was excrutiating to put open wounds into vinegar. What was I thinking? Well, if you are a fellow sufferer, you know that you’ll try ANYTHING. I spoke out loud to my husband that the pain and stinging was better than itching all the time. Better than ripping my skin apart with my withering, receeding, wavy and wrinkled barely-there fingernails. I tried petroleum jelly and non-petroleum jelly for moisturizer. I cringed as I touched my demonic hands. Nothing was helping.
Near the end of my last outbreak, I was regularly wearing black cotton gloves and black diabetic socks that I had cut hand holes in, over my arms. I didn’t go anywhere. My quality of life was diminishing. I had been in a depression for a while, for obvious reasons…but it kept getting worse and worse. I had lost myself. This ailment had taken me over. Who was I? Where was the bright, shining being I had once been? I was buried under oils, gloves and socks. I felt like I was starving myself. I couldn’t eat anything, touch anything, do anything. I was dying.
Finally one day, I woke up. I decided that I wasn’t going to be afraid anymore. That I wasn’t going to let this thing beat me. I scheduled another appointment with our General Practitioner. I asked for a blood test to check all of the vitamin levels they could run a test for. Everything came back normal.
I scheduled another allergist appointment. I went in and told them that I had stopped eating all of the foods that I had tested positive for. I had not eaten them for three months. I had seen no changes. I asked if they would provide a blood test. They agreed. I passed out on the second vile (I do that). When the blood test came back, it showed that I’d had a laundry list of FALSE positives on the original prick test. I was only really allergic to dust mites, Halibut and Kentucky Bluegrass. I cried, I was so happy. I could eat again!!!!
Next I decided that I was going to get a referral to another dermatologist. I told myself not to be afraid. I told myself that I would do whatever he told me to do. I wanted to live again. When I arrived at the dermatologist’s office, I peeled off my gloves and long sleeves and he prescribed me two different types of steroids, phototherapy and biotin (the vitamin found in Hair, Skin and Nail). I came home and put the crème on my hands. The next day, they stopped itching. The blisters and redness and itching and swelling were gone in three days. I had gotten the beast back under control. I celebrated with cheese and chicken and dancing, laughing and smiles. I told myself that it was time to live. I decided that I was going to keep myself happy. I was going to have theatre in my life again. I cut bangs on a whim. I started speaking my mind, not giving a shit what anyone thought. I started being ME, without fear. Without regret. My hands, so far, have responded to this emotional healing much better than to the steroids. I only put the steroids on when I see that I have a problem area that I am scratching unconsciously. It seems to keep the beast at bay, per-say, so that I can keep my quality of life flowing.
There was a period of my life in which I felt helpless. Like I couldn’t do ANYTHING. TOUCH anything. Well, now I am destined to do EVERYTHING, and that is what I’m doing. I am keeping myself happy. Ever since I decided that I was not going to let the negativity affect me anymore, no matter how my hands were behaving, I have noticed a tremendous difference in them. I believe that negative emotions are a killer. My husband says that he believes my “mind-body” link was broken. He says that we are all an experiment of the mind-body link. There is a part of the brain called the hypothalamus. “One of the most important functions of the hypothalamus is to link the nervous system to the endocrine system via the pituitary gland (hypophysis).” https://en.wikipedia.org/wiki/Hypothalamus
The Hypothalamus is essentially what connects the mind to the body. We believe that emotions can cause a physical sickness in the body. Especially chronic negative emotions. My mind was packed with negative emotions. Why? Well, that’s a good question. As I have continued to learn and grow as a Mother, I have been forced to take a good look at myself. That’s what children are best at: showing you your flaws. You must pay attention to what they teach you, and I did. I didn’t like what I saw. I decided that I was going to clean myself up. I began the challenging work of getting rid of my past demons. There were some ugly ones hidden in there too: suicide, narcissism, critique, judgement, fear, worry. While my hands were weeping, I was too. I didn’t want to look at myself and my flaws. Who does? I knew that in order to heal myself, my mind, and my role as a strong and powerful Mother, woman and self, that I must bring each demon to the surface and sleigh it. This process was the most challenging thing I have ever achieved in my life. I did it. I survived. It was ugly. I was distraught. But I got through it. I slowly began replacing the things I didn’t like about myself with the positive energies of what was best about my Self. My Being. I embraced me…the true me, not the programmed me. I allowed the enlightened being within to surface and take control. No more pain body (Thanks Eckhart Tolle!). No more suffering. I dealt with my issues. I cleaned up my mind. My skin followed my mind on the healing journey.
I have read before that “our past is what defines us.” I can see the value and importance in this. One thing I have to remember, however, is that I am not the past me. I am the present ME. The past is in the past. I will no longer dwell on all of the negative. I will focus on the positive. For now, I am able to catch myself quickly when those negative thoughts and emotions begin to creep back in. I stop the beast in its tracks. I feel as if I have learned the basics of HOW to do this, for myself. I encourage you to do the same for yourself. Do you find yourself focusing on the negative. Do you sit and stare at your vulgar hands (or feet) on a regular basis? STOP IT. Try to move on, friend. Try with all your might. Carry on. LIVE! Heal your mind. Heal your body. Don’t live in fear. Don’t let the beast become you. You are a bright, powerful being. Take back control of your life. There is no cure in a bottle. Do what works for you. Stop focusing on the negative. Keep yourself in the right state of mind, fellow sufferers. I know it is HARD. I KNOW. I really, really do. I understand what it is like. Hang in there and keep on fighting. I firmly believe that if you make a real, conscious effort and decision to be happy that you will see a dramatic improvement in your skin.
My hands still have eczema on them. There are currently still blisters and itchies…but they are tolerable. I have stopped thinking about them. Before, they were all I thought about. Now, I have began painting my fingernails in ridiculously happy polishes. I am a silly, goofy, punny, dramatic and weird soul. I have grasped this. I am going to wear my “crazy” like a trophy. I am 34 years old and I have stopped dying my hair. I have grey/silver hairs. I will no longer live my life in fear of other people’s judgement. What a waste of life that would be/has been. I am living again. There is no turning back for me. I’ve been in that other deep, dark place. I don’t like it. It is damp and cold. It makes my fingers and their nails wither. I like it here where it is warm and sunny. I will take what life hands me, and not become distraught when it is not exactly a positive thing. I will heal. I will grow. I will learn. I will live. This is my current tactic for healing Dyshidrotic Eczema. Please wish me well on my journey. I wish you peace and happiness. Take care of yourself.