I am still being very strict with my diet in the first week of January, only eating fruit and vegetables. No meat, nuts or grains of any kind. My gut is settling down and my skin seemed to thank me as the flares became less frequent. Though the food cravings became strong and I found I was day dreaming of eating big juicy steaks, a lot! I felt the urge to just gnaw on the fatty, meaty, marrow bones of an animal which was a new one for me.
It was around this time during one of my sleepless nights where I would kill time surfin' the net, when I discovered a diet called the GAPS diet which is also used for people with skin disorders. It predicates itself on healing the gut through a strict diet which includes a home made fatty broth of an animal. Once I had the go-ahead from my naturopath, I was all over that bi-atch! I made up my hearty stock and enjoyed every mouthful!
After about 2 weeks I slowly reintroduced the nuts and grains and the more naughty healthy foods like my spicy smoothies with dates and maple syrup.. ohhhh smoothie how I missed you! By the way, I will put up all the recipes for my food at some point for ya'll.
In other news, my hands haven't really shown too much change. The tops of my hands are still just as thick and wrinkly. My palms are relatively unchanged. They just fluctuate between reactive and relaxed but the eczema is still there.
The hair loss is definitely getting worse. I'm not imagining it now because I fill up a hair brush in a couple of days and my hair is all over the house. Normally my hair brush is emptied once every 3+ weeks and I never shed hair over the house. I'm getting concerned!
The eczema has now spread all over my ears. It is more dry and crusty here as opposed to reactive and has covered my earring holes.
My neck and chest are still very reactive. Still not the same as the other eczema, not raised. It is red, prickly and itchy.
Just when I think I couldn't possibly flake any harder, my body sheds even bigger dusty layers into the ether, like a dying star. And now my vacuum has stopped working I am reduced to using the dry mop, the tiny car vacuum and getting on my hands and knees wiping the floors with a wet cloth. Whoever said this wouldn't be glamorous was a liar.
My asthma is surprisingly still around. I thought it might disappear like it had the last time I went off the steroids so I'm a bit bummed. I really hope this dissipates with my eczema symptoms eventually.
15-1-15 WEEK 12
At this point I have made two important decisions.
1) I will now attempt to come off the cortisone 100% i.e. stop using it on my face. I'm aware that the eczema is going to cover my face but I figure I already look like a squashed pie, so what's the difference at this point. I intend to go into solid hibernation anyway!
2) I will not look for work until the eczema has cleared from my face. After all, it's pretty ridiculous to interview for a position when my eyes are half shut and my skin is looking like a nightmare on elm street. I'm lucky enough to have the opportunity to spend some more time at home and my partner is nothing but supportive, so I feel very grateful to have this chance to heal in relative comfort.
I know I should have gone cold turkey from the start but I was studying and still had a lot of important events I needed to be presentable for. The damage to my self esteem should I have completely stopped, would have been worse. But now I have my ducks in a row, there is no excuse to not see this through. I am at peace with this now.
23-1-15 WEEK 12 + WEEK 1 (face)
4 days in and my face is beginning to suffer. Each day I wake up with swollen eyes (eczema, not edema) and I can also feel the beginning of eczema over much of my face by way of strong itching and stinging. My face generally feels like it has been sun burnt. At the moment it's totally bearable as long as my mind is preoccupied, although I do have a creeping sense of impending doom.
Something amazing happened today (4 days from face withdrawal). Up until this point I have assumed what I was doing was just detoxing or cleansing or just letting my eczema come out. Today I discovered it has a name! Topical Steroid Withdrawal (TSW). Discovering this was a huge leap for me as it gave me the correct search criteria for my exact circumstance and BOOM, there are all the websites and videos dedicated to me!
I arrived at this moment on my own thinking I was pretty much alone with this issue. But once I started clicking through the videos and pages, the images I saw was like looking into a mirror and the stories were mine! I just couldn't believe how uncommon this process was and how alike they are to me. I almost broke down when I watched a video by ITSAN that went over the basic process of childhood medication into full blown adult eczema. It was such a simple cartoon but it summed up my exact history which I try to explain to people but no one really seems to understand. Fiiiinally someone understands.. people out there who actually get it!
Reading loads of testimonials and heartbreaking stories of others who have suffered through this same process, I am now officially inspired and hella motivated. I have unlocked way more helpful information than I had before and my tool kit has just quadrupled in size.
And just to clarify the chronology here. I only started this blog about the same time as I discovered TSW. I was always taking photos and documenting, but I have just back dated my entries so it makes sense.
My asthma has become really bad. I haven't taken any 'preventative' steroid inhalers for a long time but I do need my ventolin regularly. This week I am using it 1-2 times a day with the worst times being at nights. I generally always feel pain in my lungs.
30-1-15 WEEK 14 BODY, WEEK 2 FACE, WEEK 1 MW (Sorry, it's getting complicated now!)
During my research into TSW I discovered some really interesting information on moisturiser withdrawal (MW) which has inspired me to incorporate this into my healing. I quit all moisturisers, oils and any other misc healing lotions at the beginning of week 2 Face. It felt wrong at first, like my skin was now without any support but my skin is actually showing some slight improvement already in its first week. The simplification of my daily skin rituals is a definite bonus.
There is a good reason and strong science behind not using any moisturisers, which I will provide links on my resources page and recommend everyone read up. A lot of testimonials of people who have incorporated this method with their TSW have shown great results and even speedier recovery.
There are obviously stages with MW as there are with any withdrawal, and my skin is currently in the 'dry and cracked' stage. As unpleasant as this first sounds, it has also come with dramatically less irritation overall. My skin feels way more relaxed and the only real cracks in my skin are on the corners of my mouth. The eczema is still very much there, and it does still go through it's prickly and itchy moments. But its becoming drier and more bearable and I'm excited to see the results over the next month.
My face makes me wince when I look in the mirror and it's now on the top of my 'things I want better fastest' list.
Second week of no cortisone and first week of no moisturiser. This poor car crash of a face doesn't know what the heck is going on. Things were bad, then good, then worse, now at the moment it's leveled out. My first week of no cortisone was mostly suffering with swollen eyes and a general feeling of aggravation under my skin. Now in the second week I have noticed that the eye swelling has gone down somewhat, although some mornings they're still thick, but not as severe, only to be replaced by what seems like edema underneath my eyes and worsening eczema on my face. There is a lot of flaky skin mostly around my mouth forming a kind of scaly beard. It stings too much to pick it off so I'm kind of stuck looking like I've just made out with a lamington. It mostly feels like my face is burning but that's better than itching I guess.
Speaking of wrinkles. It's not only my face and hands that have aged me 40 years, but also my neck. It is still the most reactive part of my body feeling every itch and prickle and also the reddest part of me. But it's also really wrinkly and looks like an extended turtles neck.
Areas which seem to be clear of eczema are still very itchy. Once I have scratched these places, they will weep just like the eczema. My abdomen here shows the areas I have scratched which has weeped then scabbed over and is basically what my body looks like permanently these days.
The styes are making a come back. This week I have had one in each eye and I barely touch my eyes now! What do these jerks want!?
Well its happening. My hair is receding and I can now see the white line of my scalp where the hair has fallen out. The base of my hair is very sparse and I can see small areas where there is not much at all. With no sign of the eczema on my head improving I'm fearful I will lose most of my hair. I don't want to go bald :(
My asthma got a lot worse at the start of this week, however eased off a lot mid way. I actually went 3 days without needing my ventolin! I say 'need' but there were some points where I was still wheezy but not enough to necessarily have to take it. I have to celebrate these little successes :)
Since I made the decision to go balls to the wall with this withdrawal and not look for work, I have felt a huge amount of peace. The pain and itching still make me frustrated and upset, but it doesn't have the same torturous hold over me as before. With the pressure off now, I feel like I can just concentrate on each day individually rather than beating myself up over how long this will take and whether it will ever end.
I took my first trip to the shops a few days ago since stopping the cortisone on my face. I have to do this often for my organic groceries. And even though my skin felt relaxed and I was fairly nonchalant, I became incredibly embarrassed once I was in the store. One of the staff members was staring at me the whole time I was there and I could tell a few others noticed. Just the silly fact that someone notices is enough to make me self-conscious and increase my paranoia. It's not a pleasant experience and I'm not looking forward to my next visit. I kind of feel now that I need to be more accepting of how I look. It's difficult to suddenly be this person.
I have stopped wearing makeup. First because I don't see any point when I am a mess anyway and second because if I do, then I will have to use irritating soap on my face to remove it. With my MW as a factor now I'm just not sure that's a good idea. Au naturale is my best bet at the moment.
I have decided to keep my showers to a minimum to lessen my exposure to soaps and irritants in the water, but also to allow my skin a better chance at adjusting to the MW. Where I used to shower twice a day, I now shower every 1-2 days. My scalp becomes very irritated if I don't wash it regularly so I'm really not sure what to do here.
What has helped this week are clay baths every couple of days. It seems to take that long now for my skin to get to the itch point where I feel driven into the mud and boy do they relieve the sh*t outa it!
The original food cravings I used to get for chocolate, coffee, cheese etc have all gone. If I crave sugar now it's in the form of fruit and now fruit tastes incredible! My taste buds have definitely adapted to this new diet and I live for my smoothies and afternoon plums and mangoes. When I crave meat I either have one of my home made broths or I cook a piece of organic salmon. I have also been making some amazing dishes for my partner and I which are a little bit too good!
The ants decided to invade my bedroom, proper this time. The dry conditions were favorable and feasting opportunities were plenty. I drew the line at their encroachment onto my bed so after many failed attempts at home remedies, they copped a nest full of mortein. I'm not proud of it.
- Insomnia worsening
- Hair receding and thinning
- 100% steroid free (face)
- Face worsening
- Edema under eyes
- Arms improving
- Hands unchanged
- Legs slightly improving
- Moisturiser withdrawal
- Skin less reactive overall
- Asthma worsened then improved slightly
- Styes returning
Thanks for reading and happy healing!