So this is only slightly overdue seeing as it's been about 3 months since I wrote my last proper update and the reason is simply because I aint got the time. I'm now working from home pretty much constantly and between that and having a marginal social life, well I just plum can’t keep up!
But here I am nonetheless and boy golly ol pal ol friend have I had some ups and downs. The ridiculous thing is that I can probably set my watch to it for no reason other than my serious lack of self-control. Here is a rough breakdown of what each week looks like:
Week 1: Strictly eating and living clean to get myself out of a flare.
Week 2: Wow my skin is ballin! *insert the throwing of a proverbial caution to the wind* Maybe I'll just treat myself to a little sumthin sumthin… chocolate and pizza should suffice.
Week 3: Holy sweet baby jesus my skin is still ok - a family block of chocolate a day is just what I needed!
Week 4: Fuuuuuuuuuuuuuuuu*******'n flaring again! I do this every time. *insert depressive and self-loathing face palm* Never again! Best dust off those salad thongs.
- Repeat. The key is to never learn.
Overall though I feel like I am still moving forward. The flares now are never as bad as they used to be, which is kind of good, and kind of bad. I mean, it's either feast or famine with me and I tend to push my body as far as it can go, then I push it just a little bit further. Oh to be the type of person who finds satisfaction with 'just a sneaky taste' of naughty food, looking up at me all delicious like it was baked by the hand of god. Nope. It's just hell for leather and a mess of saliva and loose hair strands until said food has disappeared into a cloud of tears and stomach cramps.
I'm sure one day I will control myself better. It’s just that at the moment I'm like a rat in a cage and as soon as I get a whiff of freedom (relaxed skin) I sprint like someone left the gate open. Basically, I am the self-control equivalent of an escaped circus elephant.
After a visit to an immunologist (who was the worst person in the history of people!! Seriously, don't go to Auchenflower in Brisbane for your allergy testing! He basically yelled at me and talked over me the whole time because I told him I was going through topical steroid withdrawal and its all a load of bollocks. He couldn't answer anything I countered him with just passing it off as, he doesn't need to understand those things. Seriously! Ok, end rant.) I discovered my dust mite allergy is pretty severe so I now wash my bedding once a week in hot water and I put dust mite protection on the mattress and pillow. Just making these little changes has actually made a big difference to my comfort at night. I used to scratch during the night like I had the mange, but now I only scratch for fun :-D
WHAT HAS CHANGED?
I still use grape on my skin in the mornings which is a habit I want to get out of as soon as my skin can tolerate something else. The reason is simple and that is because its really not practical 100% of the time. Imagine trying to smuggle 30 sloppy grapes in my handbag through customs if I want to go on holidays... 'Just making some handbag wine, sir'
I tried using some very natural moisturiser at the start of October and this was the result. My skin is just not ready yet!!
I still shake out my sheets and vacuum every day and have huge daily skin flake build up on my face (although it seems to lessen in this area with each passing month) which means a lengthy de-flaking process each morning, with my preferred method being in the shower rolling the skin off like old glue. I’m not gonna lie, the time and effort it takes just to deal with the shedding each day drives me up the fricken wall! Although the feeling of my skin afterwards is like a smooth velvet. So if you see a girl getting around with her hands all over her face like its foreplay, that'd be me on shower day.
A few other things have changed. My feet are 100% clear. My chest is FINALLY starting to improve! My hair is still growing back, as would be expected of a living person. My arms and hands are getting worse however and my legs haven't really changed simply because I enjoy the sh*t out of scratching them! But I am shedding more now, so at least there's that.
The famous Queensland summer has just rolled around which means I revisit my love of air conditioning and high power bills. The prickly, sweaty humidity on a body which is already covered up like it’s an atomic winter just does not bode well together.
So without any further ado, here is my blizzog break down!
Well I already pretty much covered that. I still have the same main meals mostly, but I habitually add foods I shouldn't. Habitual. Line stepper.
It is kind of nice that I can introduce small amounts of other foods without a huge reaction now. I'm sure this will improve in time. At the moment I still try to eat as raw and organic as possible, with pretty much each meal consisting of just raw food. Please don't assume that all this raw food isn't pleasurable, because it really is! I'm just getting cagey is all.
One thing of irrelevant interest is that I recently discovered liquorice tea. I don't normally like liquorice but this tea is mind blowing. It tastes like an angel queffed into a cup.
The last 3 weeks of emotional binge food has ensured they look like I'm wearing a set of poorly made and heavily deteriorated leather gloves. The skin is thickening again and is breaking up under the fingers which makes any water contact sting like crazy. Although not as bad as they used to get, the skin is again so fragile that they split at the mere thought of an impact, plus they are shedding lots so. Good times.
They never really became Mona Lisa spec, but they were ok and I would feel comfortable wearing a singlet or tee. But now they are rash city, thick raised areas of death that cover my arms from top to bottom all red and flaky. Unfortunately getting photos of my arms is really hard with the camera I use, so the images just don't show the severity.
My feet are the boss, albeit a bit on the dry side, but overall looking like nothing ever happened. My legs, as I've mentioned, take the full brunt of my deeply seeded (Seated? Seeded? - If only there was an easy way to find information these days) desire to scratch. Not the front, mind you. Just the backs. I don't feel that this is 100% my fault on account of the fact that even when my skin was healed in that area, it was still mega itchy. Perhaps it wasn't completely recovered BUT STILL – If you didn't want to be scratched then stop being so itchy!
It is all soooooo much better than it used to be! 13 months in and even when I am pushing a flare into the red, it is nowhere near as bad as it used to get. Even with all the shedding, my face doesn't look like its covered in third degree burns any more. I mean, it's still patchy eczema looking, shedding, blotchy and pink with the occasional split or scab but it doesn't look or react quite as bad as it used to. My neck is probably on par with my face now but my chest is lagging, still looking blotchy red and a bit eczema-like, but not as bad as it did.
Unfortunately I didn't take many photos over the course of the last 3 months but as it happened, I ended up taking the majority of photos when I was flaring. As a result, it will appear as if I was quite bad this entire time, but I assure it wasn't. And just for the record, I don't wear any makeup on my skin in these photos - just my eyes >_<
It sheds as much as my face but because I only wash it once or twice a week, the skin build up is huge. Lots of big chunky dandruff to deal with plus it gets pretty darned itchy at times. I wonder if all this extra hair growth is creating a sort of humidity on the skin that causes irritation. Call me vain but I think I prefer flakes over not having hair at all... As completely terrible as my hair looks now anyway!
Its fascinating, but my hair is becoming curlier and the new hair growth is coming back as ringlets which I haven't had since I was young. Makes styling a hassle but at least its growing back!! :)
After 13 months of this biz you’d think I was exfoliated down to the bone!
We’re talking daily piles of flakes beside my bed, in the bathroom and living room. To give you an idea; even after vacuuming in the morning, by lunch time if I stand on a black towel I will leave some ultra-white footprints made of skin. Its proper gross. I’m aware of it. But I shed so dam much that it's just so hard to stay on top of!
It's pronounced 'ass-ma' for a reason. Because its ass! It’s been going sideways for a while now. If I take the dog for a walk, I need my inhaler. If I dust the whole house, I need my inhaler. If I laugh too hard, I will probably pee a little, and then I will need my inhaler. But at least I know now that Ventolin is NOT a steroid, which was actually a bomb shell for me. Now I don’t have to stress so much about using it, knowing that it’s not drawing out my Topical Steroid Withdrawal for any longer than is necessary.
It came back a bit, kept me awake a few nights, but overall it hasn’t been too bad. That being said, I still get bouts all over my body each day but at least they don’t go on for MONTHS like they had.
I’m still not doing any! I know it will help me a lot but dammit, it’s just so hard to get motivated! A little bit of yoga here and there but nothing that will actually get the sweat flowing. Maybe next month aye!
Just before the one year mark I had one hell of a flare which I believe is referred to by the Topical Steroid Withdrawal community as the ‘anniversary flare’. This one actually came out of the blue without any real provocation by me, as un-fk’n-believable as that sounds. I felt like I took about 10 steps back and it hit me like a tonne of topical steroid bricks. I cried for days and swore that I would rather die than use steroids again. The scary part is that I meant it. It didn’t take long for me to become very deeply depressed and even when my skin eventually started to improve, it still took some good time before my mind caught up. The recesses of one’s mind houses quite the demons indeed! Luckily that is behind me now and I am looking forward to.. umm… *stares blankly* … getting healthier!
In summary, I’m finally starting to see that I am improving. Even though my skin is still terrible, I have a LONG way to go and life still kind of sucks, I can see and feel that this is progress. And progress in this instance is good.
- Monthly laser for face, neck and chest
- Face, neck and chest still improving
- Shedding on face and neck unchanged
- Shedding from body worse
- Hands worse
- Arms worse
- Legs torn to pieces
- Feet all healed!
- Asthma bad
Happy healing x