There are many caregivers out there on the itsan.org forums sharing there stories, asking for advice and venting along with those who are suffering. I commend those who can be a stronghold for those going through topical steroid withdrawal. I know for myself, at the beginning stages of my healing, my mother was my rock who was there for me through all the ups and downs. She would express to me how helpless she would feel, in knowing that she couldn’t take this pain away from me, or even take on the pain herself. Through her love and encouragement, as well as the encouragement of my friends and family I kept pushing through, and I’m continuing to push through, no matter how agonizing it can be at times. A caregiver member on the itsan.org forums expressed so beautifully his side of this illness and portrayed it in a painting. I would like to share with you all his work Eternal Optimist…
My wife is 3 months into her withdrawals. I feel for everyone who has to go through this. In honor of my wife and all the countless others who have gone through this and are going through this I did this painting. It was very therapeutic for me to paint this.
When the one you hold most dear has been in chronic pain with no end in sight, lack of sleep and no sign of lasting help, can’t remember the last time there wasn’t any pain, rational thinking and reason have temporarily been itched away. Watching and listening to your most beloved moan and cry, with sights and sounds you wouldn’t wish on your worst enemy, claws at your very soul. When the once most positive, optimistic person you have ever met has lost all hope and has attempted to exit the stage. Sideline judges speak in shadows out of ignorance and cast reasons why, out of their houses made of glass. The raw grit of life won’t let you run. Selflessly giving, you are the Eternal Optimist for the other.
I had this ridiculously annoying itchiness going on all around my mouth for most of October. I noticed the irritation early on as you can see in the first photo (Oct 8th). It was just red and inflamed, and slowly started to calm down and become super dry. I was applying coconut oil on it multiple times a day (as well as shea butter) just to ease up the dryness, but it’s like that area just kept drinking it up as quickly as I would apply it. I thought that I would try a remedy I had done in the past… mixing organic ground turmeric powder with organic virgin coconut oil. It makes this bright orangey yellow paste and it can be used on dry, scaly skin. I also used it in the corners of my mouth because I was experiencing cracking as well. I used this mixture before a few years ago on oozy spots on my foot, but it was too intense for these areas, I’ve learned to keep those open, oozy areas dry so they can heal and scab over… pretty much like “moisture withdrawal” which I’ve found to help with letting the body heal on its own. This mixture is so amazing at healing, the dryness and flaking was gone within a week! Turmeric and coconut oil are such potent antioxidant, anti-inflammatory, antifungal, antibacterial foods, that they can heal up any skin issue very quickly! Along with using this paste I would take a break and use just coconut oil. The mixture did tingle a little bit once I applied it, but subsided rather quickly. I think it was because the turmeric has such powerful healing properties, and because there were fine cuts underneath the flakes. I’m experiencing such smoothness around my mouth now, I know I will use this remedy in the future! Along with doing this mixture, I was regularly oil pulling with the organic virgin coconut oil, which I find really helps to keep the skin on my face pretty clear and flake free. **Cool facts: Turmeric is widely used in Ayurvedic medicine and you can find turmeric face mask remedies to heal acne, eczema, rosacea and to help aid in skin rejuvenation!
October 8, 2014 – Facial skin pretty good, just around my mouth is irritated (itchy, dry & red). It’s shiny because I put coco oil on it. Still some darkening around my eyes.
October 21, 2014 – Super annoying dry irritation around my mouth.
October 21, 2014 – Small cut under my lip on the left side that drove me crazy.
October 21, 2014 – Around my mouth has been a trouble area for sometime, but this dryness was being extra stubborn. It’s probably taking its time to heal because I would constantly use Desonide (steroid ointment) on it. UGH!
October 21, 2014 – Turmeric paste of a dash of ground organic turmeric and a spoonful of organic virgin coco oil. Mix and use on dry, scaly areas (I wouldn’t recommend putting on oozy, wet areas, those need to stay dry so it can scab over). Super healing, antioxidant, anti-inflammatory & antibacterial, just beware it stains like crazy! 😉
October 21, 2014 – Turmeric Face!! Slathered coco & turmeric paste, beware of staining!
October 22, 2014 – My paste is healing up my irritated mouth nicely! A few flakes waiting to fall off.
October 23, 2014 – Clearing up nicely! No more flakes, just some bumpiness!
October 25, 2014 – This paste works!! Still slightly red, but no more flaking, cracking or irritation!
October 25, 2014
October 28, 2014 – I mainly used the turmeric paste, but also took breaks and just moisturized with coco oil.
November 3, 2014 – Still clear and smooth around my mouth, that turmeric paste worked!
November 3, 2014 – Still super clear and smooth! Still some discolouration around the mouth, but that will fade away in time.
UPDATE!!!
I had posted this blog entry into the itsan.org forums and a few people had tried it out and found awesome results!! This just shows how powerful healing with food can be!
Here are their accounts….
Hi Jen, I just wanted to let you know that I’ve been using turmeric topically on my feet after reading your blog post and wanted to give a big thank you! The coconut oil wasn’t moisturising enough so I’m melting it into cocoa butter instead and I’m not healed of course but my feet are finally seeing improvement after 8 months! I’m now seeing turmeric used as body scrub, face masks and all sorts and I’m looking forward to trying it out elsewhere. I’ve been clear mostly for 5 months now.
Once again Jen, thanks so much!
-Hayley
Hey Jen – Your tip is great! The backs of my knees were like scary swiss cheese – when you tear open not-yet-healed skin so you have sores within sores, so to speak. I went one up on your mix and added manuka honey (good for wounds, also highly antibacterial action) to the turmeric & coconut oil paste. Slathered it on last thing at night, covered with a non-sticky gauze for wounds, wrapped it all with elastic crepe bandage and then used micropore tape to make sure the bandage didn’t shift while sleeping.
2 nights of this mix and the sores are now healed up and flaking. Skin is pink underneath but not open wounds and not even very raw, which is great for only 2 nights worth of the healing mix….I’d say this is as fast as I’d have gotten with Elomet, which is pretty amazing! (Of course, I probably should have tried the tight wrapping much earlier to avoid scratching at night, so that’s some of it too.)
-Andrea
Thanks Jen, this is working for me too.
The skin between my fingers was broken and crusty and I had been putting cotton wool balls or cloth between my fingers to keep them apart.
I mixed turmeric with sesame oil, just because it’s an oil I had at hand. I reckon any oil would work. Smeared this on the webbing between my fingers once a day and in two days the skin is no longer broken.
I haven’t needed the cotton wool balls or cloths in the past couple of days. Yeah!
I’ve been checking out the International Steroid Addiction Network forums for a few months now and I always feel this strong sense of community and love whenever I check out a post. It’s great to have others who are going through the same difficulties as you share their experience, knowledge, and just give encouragement to keep pressing on. We all lift one another up, and this post shows that perfectly. I was so touched by the beautiful response that was given to a question about being self conscious and embarrassed about TSW, that I just had to share…
This TSW process can tend to break one down on so many levels, making it hard to see the light at the end of the tunnel sometimes, and hard to not fall into the depths of depression. I’ve found that reading inspirational books have gotten me through the rough times and have changed my whole perspective on this situation and life in general. I just started reading this book called When Your World Falls Apart – Seeing Past the Pain of the Present by a pastor named Dr. David Jeremiah (what an intense title eh? lol) and he talks all about his trials and tribulations of going through cancer and the lessons that it taught him, as well as stories from others going through rough times. He likes to call these trials “disruptive moments”.
This passage, quoted from a British journalist named Malcolm Muggeridge stuck out to me: “As an old man, looking back on one’s life, it’s one of the things that strikes you most forcibly – that the only thing that’s taught one anything is suffering. Not success, not happiness, not anything like that. The only thing that really teaches one what life’s about – the joy of understanding, the joy of coming in contact with what life really signifies – is suffering, affliction.”
The lessons that I have learned going through this TSW experience as well as having Hodgkin’s Lymphoma cancer a few years back are:
That my body is truly my temple and I have to treat it with respect and love, and really pay attention what I’m putting into/on it. That this is a wake up call to always treat my body right, always striving to be as healthy as possible.
That my body is amazing at healing and repairing on its own.
To have more empathy and compassion for those suffering because I know what it’s like to suffer.
I’ve become more spiritual in this process, just really holding onto my faith like I never have in the past.
That I am so much more than just my external appearance.
And last but not least patience, patience, patience.
*Feel free to comment on what lessons were learned in your times of suffering ❤
I had just realized that around this time last year I was finally coming into a break from my summer long flare. I had been housebound for most of the duration of my flare, and actually moved from North Carolina to New York at the end of August. From then up until October I had been housebound. It was so frustrating because I was finally back in my favourite city, and all I wanted to do was be out and about and live my life. Once I started to see that the hell was ending for a little while I was motivated to feel normal and live my life again. At the time I was working on this blog, but didn’t have enough information yet to really make it live. My cousin actually encouraged me to document my experience of “leaving my apartment for the first time” (lol) and to post it on my blog. It’s hard to describe the experience in words, but I try to in this little journal entry that I’d like to share with you all…
I had planned to put an update with pics of the month of September, but if anyone is interested, they can check out my pics in the PHOTOS section where I have the progress documented by each month. So I guess I’ll just go into how I’m currently doing, physically and emotionally as I’m now in my 32nd month of topical steroid withdrawal…
So I’ve been going on the http://www.itsan.org forums a lot lately, and it’s been helping to talk to others that are going through this topical steroid withdrawal process as well. Everyone is all trying to just relieve themselves of this horrendous disease called eczema, and reading about others struggles and journeys helps to put it all in perspective, lets me know that I’m not alone in this, and helps to make me feel like there is a community of supporters all rooting for one another. I was feeling reaaaalllly crappy this past week from going through yet another bad flare this summer and was feeling like venting. The response I recieved from the other members was so encouraging and filled with love that I instantly felt better, and it gave me the boost to keep on keepin’ on. I encourage anyone struggling with withdrawing from topical steroids, to check out the site, and join the forum. There’s a lot of great info that’s being shared on there, and the community of other TSWers makes you feel like you’re not the only one in the world struggling right now 🙂
So this is my very first post! I was trying to wait and post once all of my pages were complete, but I felt compelled to put this up. I’m right now 2 years and 5 months into my topical steroid withdrawal process and it’s been a rough journey. Quite a lot of ups and downs, and I guess a part of me feeling so adamant about posting now is because of how I’ve been feeling. Throughout this whole process, my body has been pretty consistent with how it wants to heal. At the very beginning, back in March 2012, once I got off the steroids the withdrawal process started somewhat slowly….then became full blown by June. Since then, my body likes to heal like this: go bizerk during the summer months, finally taper off early fall, then be tolerable to where I can actually function (be fully clothed comfortably, go out and about) in the winter, slowly start showing withdrawal symptoms again in the spring….then go crazy again come summertime. So this year, right on schedule it started to become its worst towards the end of May. This year most definitely wasn’t as bad as last year…I can already see signs of it tapering off, but I still have moments of discomfort, oozing, crusting, aching pain, fatigue and emotional ups and downs. This particularly sucks because I made a leap and moved back to New York (I was living in North Carolina with family) on my own at the end of Aug 2013. Even then it was extra difficult because I was in the middle of another “summertime healing crisis”. Once I got here I literally was stuck in the apartment until October! Yea, no joke. Like….I didn’t leave my apartment until October! Thank God I live in a city where everything can come to you. I had my laundry picked up and dropped off, and I had my groceries delivered to me! Once I was “back on my feet” (literally, because the worst of my healing was on my legs and feet) I was able to get out and about, even hold down a job. I was enjoying this wonderful city that I’ve missed for so long. So it’s been a bit of a disappointment to be back in this state, but I know that it’s just a part of the process. My body has absorbed soooooo many toxins, and I know the time that it’s going to take to be rid of them completely. On the upside, this healing process seems to have taken less time then last year, and its not as intense. On the good days where my feet aren’t so swollen and are not oozing lymph fluid, I can actually put on socks and sneakers for a short time and go to the grocery store, or go on short outings. Last year I was way too weak to really do any of that. Although I’m feeling a bit frustrated right now, not being able to work (I had to take a leave of absence once it flared up really badly at the end of May), not being able to enjoy the beach and other summertime activities, I still give thanks everyday, and stay as positive as I can. I know that “this too shall pass” and I gotta go through this hurdle, no matter how long it may take to come out clean and healthy on the other side. So to anyone who may read this post and check out my site, I just want to let you know that I feel you, I know your pain and your frustrations. I know what it feels like to fall into the depths of depression, thinking that this agony will never end, but you gotta pull yourself out of it and know that IT WILL END. Everything ends sooner or later, and you will be a stronger, wiser and a forever changed human being because of this battle that you’ve won! I foresee victory in my future as well as yours! ❤ Stay Strong Eczema Warriors!!
Eczema Holistic Healing 