I have been wanting to write an update on the status of my extreme eczema for a while now. In fact, I started writing this post last week when it was a different story. At the time, I literally had to walk away from my computer because the itching overcame me, as it often does. This scenario happened frequently with the level of itch I was experiencing, not just when I was trying to type, but in every imaginable everyday situation. This is why I have again been away from the blog and social media lately. Not even really a conscious choice, more just that I physically was unable to keep up with my former routine. I felt overwhelmed and defeated, like, what do I even have to say on the topic but to complain about this miserable condition that isn’t getting any better? But now I think I finally might have some answers. At least I feel hopeful. Which is saying something after six straight months of what I can only describe as utter misery. And it is always my goal to share what I learn on my journey of motherhood and wellness here on this tiny corner of the internet of mine, in hope that maybe I can help even one person. So here it goes.
Last year around this time, I wrote a blog post about my struggle with eczema and some things I had found at the time to help me manage it. Not long after that post, my eczema slowly but surely started to clear until eventually, it was completely gone. I thought I was cured! But I’ll be honest with you guys, just as I never really knew what exactly triggered it to begin with or what was aggravating it more, I also had no idea what exactly of the many things I had done, made it go away. I felt like I kind of threw the kitchen sink at the problem and eventually, I was all cleared up. That’s why I didn’t share another update back then. I will tell you though that at the time, I didn’t much care because it was gone! I felt like I had my life back and I could finally focus on the arrival of the tiny babe inside my belly who was about to make his debut.
But just days after that perfect baby boy arrived, I noticed tiny blisters forming under the surface of my skin on my fingertips. For me, this is a telltale sign of the eczema coming back. Before long, the skin hardened and become painful, then erupted, making everyday tasks unbearable yet again. Then it spread across my hands in an unstoppable fashion.
Every time that I thought it couldn’t possibly get any worse, it did. It would spread further, itch more, I would scratch and scratch and scratch until I bled, and then cry and shake because I still couldn’t stop itching. Eventually, it spread down the palms of my hands and and this time, the backs too, up my arms, feet, legs, and most recently, my chest, back, face, and neck. My skin was perpetually red and inflamed. Literally all-consuming, extremely uncomfortable [to say the least] and so, so embarrassing. I have never shared pictures of it online before because quite frankly, it is just so embarrassing. If you follow me here on the blog or on social media, you probably didn’t even notice it because I would take great efforts to hide it or edit it out. But I have countless pictures I’ve taken just to document it, most of them I was hoping to be ‘before’ shots for some miraculous cure I hoped I’d find. So I will share a few here, just to give you an idea of it.
I tried everything guys. I mean everything. I went back to my home-made essential oil blend. I re-checked all the labels of everything in my house to see if I’d missed something I knew I was allergic to. I went back to the allergist to see if starting allergy shots was a possibility now that I was no longer pregnant. My doctor told me it was likely contact dermatitis, and because allergy shots are for environmental allergies [I have hundreds of those too], there is no good evidence to show that environmental allergy shots would help my type of case. In other words, I could try, but no guarantees. Frustrated, I turned to a naturopath a friend had recommended.
Let me just pause here for a second to say that I had been wanting to go the route of a naturopath from the beginning. But unfortunately, our healthcare system in the United States does not value alternative therapies, so this route would not be covered by my insurance. Therefore, I wanted to attempt to exhaust my options within the traditional system, even though it tends to go against my value system. Generally speaking, I prefer not to take drugs or put chemicals in my body unless it is absolutely necessary.
On another note, I am still breastfeeding. This holds up many treatment options on both the natural and traditional sides of medicine, because there just aren’t that many studies of drugs or treatments done on breastfeeding mamas and babies. Makes sense right? No one is going to knowingly put a baby at risk without necessity. And pretty much everything a mama consumes does pass through her breastmilk, it’s just a matter of how much and to what effect for baby. Did you know that your skin, the largest organ on your body, absorbs and average of 64% of what you put on it? So baby is getting some of whatever you are putting on your body too.
From my last blog post, there are some new things I have tried. My naturopath recommended I start with Advanced Allergy Therapeutics [AAT]. It’s a little hard to explain, and I’m sure I’d get something wrong if I tried, so if you want to read more about it, check out this link. Basically, it is a non-invasive alternative to the allergy shots I was considering. For a while, it seemed to be working. Until it didn’t anymore. We went through all the common allergens, and even many secondary and exotic ones, but no dramatic difference. I had blood work done, my thyroid checked, etc., but nothing groundbreaking there. Then we moved on to biofeedback in combination with supplementation to attempt to help my body detox whatever the heck it was trying to detox. You can read more about what biofeedback is here.
Then my eczema went from bad to worse. It was at this point, just after we moved, that I broke out in a hive-like reaction on basically my whole body. Frustrated yet again [and unable to get in to my original dermatologist, whom I didn’t like much anyway, for a month], I went back to the allergist and asked about taking an oral steroid to try to get the breakout under control. Of course this was not my preferred method of treatment at all, but I was desperate. To me this was a last resort and I was there. At the same time, I was very worried about taking such a strong drug [Prednisone, starting at a high dose and stepping down over a nineteen day cycle, fyi] while breastfeeding. I sought advice from every medical professional I know and I got everything from ‘ween baby now’ to ‘feed as normal.’ I decided to continue to breastfeed while taking it, but I timed when I took the medicine to give my baby the least amount of exposure possible. And in the end, the Prednisone didn’t touch it. By the end of the cycle, my eczema looked the same, if not worse than, when I began. At this point, my allergist referred me to another doctor in the practice for a second opinion.
Throughout these months of suffering, I found myself often going back to that period of remission over and over to try to figure out what I was doing differently that perhaps might help me now. The only things I could think of are 1./ I was pregnant. It is somewhat common for autoimmune diseases, such as eczema, to go into remission during pregnancy and then resurface after baby is born. So this probably is a contributing factor at some level. For me, my remission period was only at the end of my pregnancy though – at the beginning it was still quite severe. 2./ It was summer. This meant I was outside in the sun and the saltwater pool with my kiddos everyday.
I mentioned this sun/saltwater combination to all of my care providers at one point or another, and all of them more or less dismissed it. I didn’t push it much myself because it seemed like kind of a stretch. But then I saw the second doctor at the allergy office. We discussed my history as well as some alternative therapies I had read about, one of which was UV light therapy and the other was bleach baths. I wasn’t crazy about the idea of bleach baths [because bleach is a nasty toxic chemical, why on earth would I want to intentionally bathe in it?], but again I was desperate. He suggested epsom salt bathes would be better and I agreed. The idea behind both types of baths is to help prevent a secondary infection by killing stop bacteria on the skin. Also, saltwater – just like in the pool from last summer!
The idea for UV light therapy was borrowed from my mother, who actually has had severe psoriasis for the majority of her life. UV light treatments are one of the only things that really helped her and she still does them regularly. I did some research, and short wave UVB lightwave therapy is also used sometimes for severe eczema cases. Also again, my eczema was under much better control during the summer months when I was outside in the sun often. For some more interesting facts about UV photolight therapy, check out this link from the National Eczema Association. I haven’t tried this directly yet, but I do plan to explore it further with a new dermatologist I recently was referred to. In the mean time, I have been trying to get my skin exposed to the sun for a few minutes everyday and am taking saltwater baths every night and I really do think it is helping.
In addition, seeing the new allergist doctor for a second opinion seems to be helping in a few ways. He prescribed me a new oral antihistamine and a new topical steroid that seem to be working better for me. But he also gave me some new [to me] information about contact dermatitis which I found very enlightening. Even though in a way, it is kind of depressing and overwhelming to think about what levels I will have to go to to avoid these allergens in new environments [think hand soap in public restrooms or the sheets and towels in hotels], it is also empowering to know what the typical life cycle of a breakout is and to what extent I am allergic. This perfectly described the life cycle of my latest breakout, and in a way, made me feel better. In other words, that I am not crazy!
Testing has shown that you have allergic contact dermatitis. This means that you are particularly sensitive to even extremely small amounts of these substances:
- Cl+Me-Isothiazolinone (MCI/MI)
- Gold Sodium Thiosulfate
You are so sensitive to these substances that if your skin comes in contact just one time with any of them, you may develop a rash. Itching, pinkness, small bumps, or blisters may appear within 4 hours, but usually starts 1 to 3 days after exposure to the substance. The skin reaction lasts from 2 to 8 weeks, even if you don’t come into contact with the substance again. If you have had many exposures over time, it may take 3 to 6 months for your skin to get completely better after you start avoiding the substances. During those months, your skin will slowly get better, but you will probably have multiple brief flare ups of your rash, even as it is overall improving. If you come in contact with one of the substances again during that time, that can cause a significant set-back in your recovery.
You were not sensitive to these substances for most of your life. Allergy develops from repeated exposure. You were exposed enough times to these substances that you became sensitive to them. You must remember that just because you weren’t sensitive to something in the past doesn’t mean that you are not sensitive to it now. Your body has changed and is sensitive now to things that didn’t cause you trouble before. You will be allergic to them for the rest of your life. You will always need to avoid them.
It is very important to learn how you can avoid the substances that cause your allergic reaction.
I have had many people tell me along this journey that “it’s probably just an allergic reaction,” and that phrase could not be less helpful, or more annoying. My first question was always, to what?! How do I even know when there are hundreds of ingredients in so many products I use? Even when I did learn these specific allergens and thought I was avoiding them all quite well, I found out they were in products other members of our family were using. And there was that ONE time I showered at the gym and forgot to bring my own products. I thought, ‘it’s only this one time, I’m sure it will be fine.’ That was right before my big, all-over breakout.
I guess what I’m trying to say is, don’t give up. Be your own health advocate so you can find what works for you. I certainly don’t have all the answers, but I know a few things that have helped me. I also want to share with you guys some of my favorite safe personal care products, but this post had gone on long enough. So I will do a follow up post with that information in the next week or so!