Three Terrible Trials

This is a quick update on the progress of my skin and life in general over the past few weeks.  I’m an optimistic person, so I’m not sitting at my computer downcast crying salty tears into the keyboard and messing up all the internal electronics, but things have not been easy.  Here are the three trials I have been dealing with:

1. POSSIBILITY OF TOPICAL STEROID ADDICTION, aka red skin syndrome (RSS). 

Multiple helpful bloggers have commented on my blog that my history and current rash/dermatitis sounds awfully like it is RSS.  I had read about RSS before, but was reluctant to believe that I could have it, as I didn’t have any of the symptoms like stabbing pain, uncontrollable itching, burning, weeping, oozing, etc.  I also had never used steroids long-term, but did use them sparingly over the course of a couple years.  However, what I DID and DO have is a rash that would not clear up, spread insidiously, and for the most part is ONLY in the places where I’ve ever used steroids.  And, I also CANNOT link it to anything concrete like diet, environment, etc., even though I’ve been trying for a good year or more.  Oh yeah, and it always came back worse after I used steroids, even though it would take 7-10 days.  The very last time that I used steroids (and the last time I intend on ever using them) was a few weeks ago when my face flared up like crazy along with having a cold and then bronchitis.  Now I know that the crazy rashtastic rash on my body, and my face, was probably a rebound reaction after using steroids.

The past 2-3 weeks or so have been hell for my skin, especially my face.  I’ve wanted to use steroids so bad, but I know that I’m taking steps toward healing by not using them.  All last week and the week before, the skin on my face was ridiculously dry and red, and around my eyes would become so tight that I would be very uncomfortable as the day progressed.  I’m happy to note that I appear to be entering a healing phase and look/feel much more normal.  I’ve left so many flakes of skin in the bed and all over the house, but when it peels off, the skin underneath is closer to being healed.  I’m certainly not totally healed (my hands and elbow creases are wrecked, for example… did I use steroids on these areas in the past?  you bet), but I’m confident in my body’s ability to heal, given time.    I’m also hoping that because I did not use steroids long term, the healing phase from them will be quick and maybe I can look reasonably clear-skinned again in a few months by summer.

2. CANDIDA DIET

Yes, I’m still on the candida diet, albeit a slightly looser version.  I still have not had any caffeine, soy, dairy, gluten, or… hmm, I am probably forgetting something else.  Today is day 18 and I’ve mostly gotten over the sugar cravings and feeling of deprivation.  I have entered the stage where I completely feel as though I could adopt this diet for life if need be.  I started to ‘cheat’ a bit a few days here and there (nothing big – I had a few foods with minimal added sugar, like sunflower seed butter, Rice Chex, and organic chicken sausage), but it didn’t seem to affect me.  I also started eating some corn, i.e. corn chips and Corn Chex, as well as beans (which you are not supposed to introduce until stage 3 when you see noticeable improvement).  So my current approach is the Mostly-Candida-Diet.  I’m honestly afraid to have something outright sugary like a dessert, as I feel like it would cause havoc.  However, if I really do have RSS/topical steroid addiction, diet may not play a big role in what bothers my skin.  I guess the Candida Diet isn’t that terrible of a trial, but in the throes of a food craving, it isn’t very fun.

3. RELATIONSHIP TURMOIL.

I wrote about this in a previous post – the current strain on my relationship with my husband.   So even though we’ve talked and discussed and been respectful of each other’s feelings, my husband is truly, totally convinced that we need to separate/divorce and that “I’ll thank him later”.  WTF?!?  Does he picture that I’m going to rush up to him a year from now and be like, “Oh, thank you, thank you!  You broke my heart, I’m so grateful for that!?”  I’ve written him a lot of angry/sad/spiteful emails to him over the past few days as I just don’t understand his reasoning behind wanting to leave someone that has been a devoted and loving companion for the past TEN YEARS (we started dating when I was 17! and have been married for almost 3 years), even though he insists that he’ll always love and care about me and that we can still be friends.   One of his most hurtful and selfish statements was that he wanted to separate so he can start fresh and have a family, and that he wanted to spend time being single.  So basically this implies, “I want children, just not with YOU” and “I want to run around and not be committed to anyone”.  I’m not the biggest child-wanting person, but I was absolutely willing to sacrifice and compromise so we could have a family together.  The threat of knowing he wants to leave me makes me want that even more strongly – I don’t want to be set adrift alone in the world and have to find someone else to love.  I’m not here to rant about my husband, or someday ex-husband (ugh, I hate writing/seeing that phrase, it seems so sad – imagining me being a divorcee’ at the tender age of 26 😦 ), but this, as you can imagine, has been a huge source of stress and turmoil.  It’s particularly awkward as we still live in the same house, but I don’t even want to talk to him as it’s the same repeated thing, he’s convinced we’ll be better off.  I can’t move out yet because I’m still going to school, but if things get really bad, I’ll move back in with my parents.  I still pray that it could work out, and I believe it could.  He is absolutely convinced otherwise.  I’m not going to cling to a sinking ship, so I just have been praying for God’s guidance and peace and hoping whatever’s out there in my future will more than make up for all the anguish so far.

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15 thoughts on “Three Terrible Trials

  1. Regarding #1, have you read this blog? http://pinklikeabeacon.wordpress.com/
    You’ve got to watch the video she posted. You have to scroll down for a while to get to it.

    Glad you’re adjusting to point #2 🙂

    And as for point #3… My heart hurts for you, girl. I really hope you two can work through this. I really, really do. And if not, it’s his loss as he’ll be losing someone that completely loved him. And then you can put your extra energy into growing your blog, which could definitely explode into awesomeness, and he’ll be left in the dust.

    If you need to vent, just email me!

  2. Amanda says:

    I can’t say anything that the Allergista didn’t already say better, so I’ll just agree with her. *hugs* I’ll keep you in my thoughts and feel free to vent anytime.

  3. Courtney says:

    Thinking about you girl, when it rains it pours huh? I have wondered about TSW too, but holy crap pictures of people dealing with it make me terrified. I have been on steroids pretty much my whole life, so I don’t know how I WOULDN’T have it at this point, ya know? Ugh.

    Anyway, I hope things start to look up for you soon. I know it’s hard to feel like yourself when your skin is a wreck and your home life is stressful.

    • Oh gosh I know! The worst-afflicted people look like burn victims! I do have to say though, that on my legs, I completely stopped using all steroids and pretty much stopped using almost ANYTHING on them, and they are noticeably much better. The rest of me is slowly getting better, but clearly it’s a slow process for the body to heal versus steroids that seem to work almost overnight! Thanks so much for your care and concern – I’m encouraged by the fact that I have friends, blog-friends, family, and God there for me and I will get through this!

  4. Ann says:

    I am so sorry to hear about your marriage difficulties in particular. I’m sure so many people have recommended products to you over the years, but I would strongly recommend that you try out Aalgo Seaweed Powder, either in the bath, or as a paste on your skin. It’s brilliant for eczema and we’ve gotten amazing feedback from our customers about how quickly it releaves itching, reduces redness and improves skin.

    I’m not on a sales pitch here at all. I just don’t like to stand by and watch you suffer if this product can really help you. We’re based in Ireland and I am thinking you’re in the U.S., so it would be best for you to go directly to http://www.aalgo.com to buy it.

    I do hope this post proves helpful for you and I hope things work out for the best for you all round, whatever that outcome may be.

    • Hi Ann, welcome and thank you for visiting my blog. I really appreciate your kind words and the recommendation. I checked out the Aalgo site and it definitely seems like it is a great and helpful product. My skin seems to be making a slow and verrrrry gradual healing process after stopping use of all steroids (Even though I didn’t use them too frequently or heavily), but it could use all the additional help it can get with healing. I’d like to know more about the ingredients in the products – (is it only seaweed, for the most part?) but I may well try it in the future! Thanks again!

      • Ann says:

        The Aalgo is purely dried, powdered seaweed – nothing else. We had one customer whose daughter was covered head to toe in really bad eczema and she found a big difference within days, and within 2 months of daily use, her eczema was completely cleared.

        We also have special clothing that’s made from 70% cotton, 20% seaweed and 10% silver, that eases the itching as it is antibacterial and antifungal. it’s very light, so it can be worn under regular clothing both day and night. It’s called Skintoskin. I’m about to put up the adult size clothing on the website in the next few days. Our address is http://www.econatural.ie, in case you would like to take a look.

        I do hope some of this information helps you. At least you know what else is out there to help you.

        Ann.

  5. Trish says:

    Hi there,

    I posted a comment a while back and just dropped in to catch up on your latest posts.
    I wanted to comment on TSW because as I think I mentioned previously, we have many symptoms in common. I think the key with Red Skin Syndrome is that the steroids have to stop working and make it worse. However, if your skin still responds to steroids, than you are not addicted.

    I didn’t fully undertand this when I went off them about a year ago. I went through hell for about a month and once I treated again I was able to get into a much better routine. Skin responds well to mid-strength, and if I stay on top of it (i.e. use it for 7 days then take a break), life is manageable. It’s still a struggle, and I am on the hunt for alternatives, but I think there is a lot of misinformation and self-diagnosis happening out there (myself included) that is placing people in a worse place than before.

    To me the reality of our situation lies in the deficient skin barrier. We need a drug or a topical application that will repair the surface proteins so that we can prevent water-loss and prevent easy access of allergins.

    So that’s just my two cents on TSW and RSS.

    A couple of other things I wanted to mention to you:

    1) I found a fantastic face cream by Avene. It is called”Tolerance extreme” and it is designed with people like us in mind (i.e very sensitive). It has no preservatives and comes in a special tube that prevents contamination through it’s unique dispensing system (you’ll see what I mean if you get one). Anyway, you can read about it here: http://www.aveneusa.com/products/concern/sensitive-skin/tolerance-extreme-cream

    I am almost through my first tube and will be picking up more. Like you I went through so many, and they always felt like they burned my skin. This one does not. It’s not cheap–about $35 in Canada, but so worth it. I also seem to have to apply it 2-3 times per day as my skin is in a peeling phase, but again, it is nice that it soothes rather than burns and has no fragrance whatsoever.

    2) I discovered that beeswax is sometimes listed in ingredients lists as “Cera Alba”. You probably knew this, but I did not! Found out a face cream I was using has this ingredient and I know I am sensitive to it.

    Alright, that is all from me for now. Wish you strength with all you are going through.

    Trish

    • Hi Trish! Thanks again for stopping by. Now I’m confused if I might have RSS or not, because my skin DOES seem to still respond well to steroids….at least it responded fine the last time I used them. However, then my eczema always comes back, and each time it has come back worse. I will also add that it responds great to momentasone furoate (mid-strength steroid) – that stuff seems to clear up rashes almost overnight. (But, you’re not supposed to use it on your face). Protopic, while not a true steroid, has been hot/cold for me – it can work well on my face, but if i use it on my body, it just makes things worse and I itch more. Maybe I’m just having a ‘rebound flare’ from the last time that I used steroids.

      You mentioned using a mid-strength steroid yourself with success – which one do you use? And when you take a break after using it for 7 days, how long do you go without for? Just until it starts to get bad again?

      I agree that self-diagnosis can be dangerous. The problem is that most dermatologists seem to not believe in RSS or at least are not willing to help eczema patients work through their symptoms without using steroids. I didn’t want to use steroids the last time I had a huge flare on my face (from an allergic reaction to aloe) but the dermatologist basically said I had no choice or the flare would not subside. This was in November. The steroids worked magic, but now I’m left with red patches on my face from anywhere that I ever used steroids on it. My view is that for right now, I’m avoiding all steroids as kind of an “experiment”, considering it’s a good time to do it as it’s winter and I can hide most of my rashy skin under clothing.

      Yes! I also feel the same way about the deficient skin barrier. Many days it feels that my skin reacts to EVERYTHING and I really don’t know what topical ingredients may be benign and which are bad. But for sure if I could start fresh with healed skin, I’d have a much better indication.

      I DID know about the beeswax, but that’s a great tip if other eczema sufferers are reading the blog. Hiding ingredients under other names certainly doesn’t make it easy for us! And Thank You for the tip about the Avene face cream – I had never heard of it before (and I figured I’d heard of almost every brand and type of stuff you can put on your skin). I’ve heard conflicting things about mineral oil, but it looks like it is definitely worth a try, and if you’ve met with success with it with your own sensitive and peeling skin (which mine is as well), it’s a great endorsement and will be on my list of things to try 🙂

      If you ever want to continue talking about eczema and remedies and the like in further detail, feel free to email me: nubtorious@yahoo.com.

  6. […] for my Masters degree, dealing with eczema and TSW, but I’m embroiled in a bitterly sad relationship struggle with my husband – he wants to divorce, I don’t.  I still have hope for our future and […]

  7. Shannon says:

    I just stumbled upon this blog looking for solutions to my own skin issues. I want to thank you for posting pictures of your skin – if I were to take a photo right now, we would be rash twins from that torso photo you posted. Honestly, everything I have been diagnosed with does NOT resemble what is going on with me. I have been to three dermatologists, two allergists, and the emergency room once: every one of them had a different diagnosis. I understand the dangers of self-diagnosis, BUT, what is one to do?

    I have been dealing with this for 13 years. After seeing your photo, I am going to go with a speculation I have come to from reading, and push forward treating it like it’s eczema and see what happens.

    I will keep checking up on here. I am very sorry for your current situation – I hope since you last posted in February that you are doing better, and that you continue to feel like you’re now free to experience new things and people! Remember: you’re helping people with

    • Thanks for visiting, Shannon! Honestly it is the best reward knowing that my blog is helping others or at least they have found someone they can commiserate with. I AM doing so much better since February – both skin-wise and emotional-wise. I have a long way to go yet but it is amazing how the body can heal and how resilient the spirit can be and heal, too!

      I would be very curious to hear more about all these diagnoses from all these doctors. Feel free to email me if you want to talk more off-line from this blog (nubtorious@yahoo.com) I cannot believe that every one of them that saw you said something different! Honestly I feel like sometimes doctors just kinda pick something, because it would sound stupid if they said, “Yep, you have a rash, and I have no idea what this is”. I went to about 3-4 doctors myself before I gave up on them and just started looking for even more ways to heal myself. I am so sorry that you’ve been dealing with this for 13 years. That is a long, long time to endure. My heart goes out to you for that!

      I want to clarify that although this blog started as an eczema blog, the skin issues I am currently dealing with are Topical Steroid Withdrawal, I am 99.9% sure of this. I agree with you that self-diagnosis is dangerous, but the general dermatology community doesn’t recognize Topical Steroid Withdrawal and I had/have pretty much every symptom posted on the International Topical Steroid Withdrawal Network site (www.itsan.org). If you have been using topical steroids and not getting any better, or using more and more or stronger ones, your skin may well be addicted to them and now reacting. Topical Steroid Withdrawal and eczema are two separate things and not necessarily treated the same.

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