Eczema. It doesn’t matter how you pronounce it, eczema is distracting, frustrating and downright torturous. It’s caused by different things from one person to the next and manifests itself in different ways too. It can also be difficult to diagnose.
What is it?
Oxford dictionary defines eczema this way:
- a medical condition in which patches of skin become rough and inflamed, with blisters that cause itching and bleeding, sometimes resulting from a reaction to irritation (eczematous dermatitis) but more typically having no obvious external cause.
That last bit is where the frustration part gets almost unbearable. It’s definitely bad enough to have a condition that makes you itchy and sore and raw and unable to sleep or concentrate. Throw in not knowing why it’s happening and you’ve got yourself quite the recipe for insanity.
How’s this for another wrench ?:
Oxford dictionary defines psoriasis this way:
- a skin disease marked by red, itchy, scaly patches.
So… what’s the difference? Medical journals describe them both with details that overlap. It’s the same with treatment options. They are different but have some similarities so it seems the best way to figure it out for sure is to see a doctor. However, know that even they make mistakes sometimes, so be willing to exercise patience with yourself and your doctor.
Chapter 2: My experience
I grew up without the affliction of allergies; I didn’t have hayfever or food allergies or skin conditions other than being easily susceptible to sunburn. Occasionally I found myself itchy in various places, but it was random and rare so I ignored it. I discovered as an adult that I reacted with a sore throat to soy so I avoided it. At the age of 27, my first child was diagnosed at 11 months old with a cancerous brain tumor. She had 3 brain surgeries and spent a month at BC Children’s Hospital. The second week in, I reacted to some organic almonds. That was new. I loved almonds. Weird. She recovered and we took her home, but she relapsed and died 4 months later.
Strangely, and although I was unaware of it at the time, the trauma took a toll on my immune system. Over the next 10 years, I continued to react to foods that I had enjoyed my whole life, one at a time, every few months. Beans, peas, potatoes, lentils, chickpeas, broccoli, celery, carrots, cantaloupe, cherries, peaches, pomegranates, tomatoes, etc. I also started developing seasonal allergies. About 5 years after her death, I was fully crawling with itchiness, sneezing and rashing. Eye drops and over-the-counter allergy medications were doing nothing to help. I went to my doctor who set me up with a prescription for a low-grade cortico-steroid nasal spray. This helped. However, I continued down the reaction to food path and developed skin rashes that progressed until I couldn’t sleep and I felt like I was slowly losing my marbles. The itch and rash had begun to present itself in an unspeakable area that was making it difficult to wear clothes, even underwear. I thought maybe it was a vaginal yeast infection so I got some treatment and it helped. But it came back. Just as bad.
I called my doctor but she wasn’t in so I saw another physician. She didn’t know my situation so I explained a little but what she saw looked simply like a vaginal yeast infection and she said sometimes it takes a couple of doses so I did it again… and got the same results.
I went back and saw my doctor and she explained that I had been mis-diagnosed. I wasn’t upset. I fully understood… I had made the same mistake. She gave me a prescription for a cortico-steroid cream and sent me to an allergy specialist who did some tests and evaluated me as having “birch-alder syndrome”, an allergic condition that includes reactions to seasonal pollens and some ‘related’ foods. She said it usually starts with the hayfever and spreads to foods not the other way around as in my case.
She also recommended I try a sulphite (sulfite) elimination diet. I did. I got a very long list of foods that contain sulphites and I avoided them for a month. When I tried them again it was awful. I do believe the random itching I had growing up was probably due to sulphites. It was rare for me, because we didn’t have pre-packaged foods often. My mom cooked and baked everything from scratch. There are sulphites in almost as many items in the stores as soy. They are also harder to recognize as they come disguised often under a variety of names and some of those names only sometimes contain sulphites like ‘natural flavour’, ‘caramel’ or ‘caramel colour’. Also, if the sulphites are measured as less than 2 parts per million, they don’t have to be on the label at all, as most people are not sensitive to that low a level. It turns out I am. I discuss this in more detail in another blog about food sensitivities.
My take-away was a list of foods and trees I was allergic/sensitive to, the validation that I wasn’t crazy and a bit of direction as to how to help myself.
Chapter 3: How do we help ourselves?
First, I saw my doctor and started the figuring-things-out stage like allergy tests, elimination diets, trial and error with my environment like soaps, detergents, shampoos, etc. I got pretty lucky with soap. My mom has been making all natural soap for years, so I started buying from her. I don’t use anything else. It cleans, doesn’t leave residue, smells lovely and doesn’t irritate my skin. As a bonus, when we wash our bathroom mirror with it, it won’t fog up when we shower!
This process took some time and I had no choice but to be patient. I made notes in a journal so I could get a sense of seeing progress as well as slowly gaining a sense of control of my situation.
Second, I took benadryl at night to get sleep when the itching was bad. (I discussed this with my doctor too, of course.)
Third, I looked into creams. There are some that are natural and effective. The cortico-steroid topical cream that my doctor gave me initially to get the rash under control worked perfectly. I also used it in future flair-ups. It is not intended to use as an ongoing lotion sort of thing though, so I used it as seldomly as I could… mostly for a sanity stabilizer.
My husband researched online and found dermatology inspired and approved creams that had none of the items on my allergy list in them. Exzaderm worked really well, but took a few days to notice and was very expensive… $40 for a small container. I used it when I needed it and we continued searching. We found a few others that worked, not as well, but worth the trial.
Infinite Aloe Skin Care took a few days to notice too, but was very effective and strangely calming right away. I found it being sold at Costco in a ‘road show’, a once a year set up in the middle of the store, sold for about a month. I noticed it because they had a photo on their counter of someone with eczema. So I stopped and read through the very long list of ingredients. All natural, no soy, no sulfites, no potato starch… hmm. It was $100 but was a large package with about 7 or 8 varying sized containers, 2 very large ones. “It’s Costco”, I said to myself. If it doesn’t work or I react badly to it, they’ll take it back no questions asked. It was fantastic. I highly recommend it.
Another thing my husband discovered during research is marajuana cream. It is said to have calming effects on eczema-like situations. A friend gave us some leftover ‘shake’ from their recent backyard harvest and we made some “butter” with the leaves and coconut oil… that’s it, nothing else. It works just as well as anything else I’ve tried. I can’t take marajuana orally because it hurts my stomach but topically is perfect. This so far is the cheapest thing I’ve tried and it actually works… therefore, my personal favorite.
One last ‘cream’ I recommend is the juice from the aloe vera plant. It’s sold in drinkable forms with sweeteners and flavours, found with other juices, sometimes it’s found in the pharmacy area without the extra additives, and the leaves over 12 inches long are sold individually in the produce section of some stores. You can also cut a small piece off of a houseplant. I buy the large leaves, keep them in my fridge, cut a small piece off, and spread the juice straight onto my skin. It’s instantly cooling and has healing properties that have helped me in the past with sunburn as well. It tastes terrible though which is why when it’s sold in the drinkable form there are other ingredients added. In the pharmacy area though, I think it only has citric acid added. It works excellently for eczema, for me. I use it and the marajuana cream interchangeably, but I also use aloe for my face when my skin is particularly dry. It cools and relieves the tightness associated with dry skin, immediately.
Fourth, I started paying closer attention to my diet. At the time, I knew I shouldn’t be eating soy, but I had to learn that soy is in a LOT of pre-made products at the grocery store. Peanut butter, salad dressings, chocolate, cakes and cookies, bread, cereal, lotions, mascara, shampoos, even some laundry detergents, etc, etc. So many things… it was quite depressing. Even after getting a handle on things rash-wise, I would flare up and not know why, until going into the cupboard and fridge and reading ingredients on labels, and finding a company had changed their ingredients list on a product. This happened a few times and I learned to check ingredients every time I buy. I also enjoy baking and my husband is a very good cook. So, over time, we’ve found and created some really exciting (and many simple) recipes for hundreds of foods and meals.
Dry skin is a thing for me as well. Everyone’s skin is different; some people have oily skin, some dry, some people can’t go out in the sun… Using a perfume-free lotion (without soy for me) is very helpful for dry skin. One dry evening as I was ‘lotioning’ up before bed (for the fourth night in a row), my husband teased me that we should get a bucket of oil that we could just dip me into once or twice a day. I do better in humid climates. That got me thinking more about it and I began searching for helpful foods and better/cheaper lotion options. (Now I’m experimenting with a base lotion and adding aloe juice, etc.) I found increasing my intake of foods rich in vitamin E and the omegas also VERY helpful. Staying hydrated is also important. I love water so that’s not a problem for me, but some people try adding ice or lemon, strawberry or cucumber slices to their water to make it more interesting and inviting to drink. It’s a great idea to experiment with that.
Fifth, I talked about it with other people. Don’t be afraid to get and take advice and try things that work for other people. It is daunting to do, for sure, especially if you’re stubborn. After all, each person’s situation is unique. However, pharmaceutical medications and holistic remedies alike do work for many different people. You won’t know if they work for you unless you try them. Just make sure you try them one at a time. Even the elimination diets tell you to reintroduce foods one at a time with a few days to a week between them. This gives your body a chance to react or not hopefully, and either way, you’ll know better whether it’s a good thing or a bad thing for you. Also, don’t be afraid to share your knowledge and experience with others. You are not alone, which means unfortunately, that there are other people suffering too.
The patience I mentioned that’s required to work through figuring this out is important but can be hard. I made little goals for myself, some short-term and some longer. I kept track of my progress in my journal which also gave me a type of outlet that I could vent to. I talked with my husband about it and I was lucky to have his support. I kept most of my ramblings and outbursts for the journal though. It’s also a good idea to let your family and friends know when you’re feeling frustrated (again without too much rambling), so they don’t take any potential outbursts or meltdowns personally. Also, give yourself lots of other things to do, think about, work on and accomplish. Spend time with your loved ones, laughing. It’s not only very therapeutic in the moment, but ‘future you’ will appreciate having good, enjoyable memories during this time-line of difficulty.