ONE YEAR ON THE ARON REGIMEN!

I cannot believe it’s been a year since I started treatment. More importantly, that’s one whole year of sleeping through the night (the other day I overheard some new mums complaining about how bad they felt on 5 hours’ sleep and couldn’t help but chuckle – 5 hours?! 5 hours used to seem like bliss!). I feel frickin’ fantastic. It feels like an achievement but it’s not, really; I’ve just been living life as I always should have.

Exciting news this week – I FINALLY managed to get an allergy test done! I tried to this time last year and the GP told me there was no link in the literature between allergies and eczema so he wouldn’t refer me to an allergist, and if he tried they’d probably say no anyway. So this time round, after a lengthy call with someone at the clinic and a GP appointment to discuss referral, I went in armed with a list of things that I suspect trigger my skin and other reactions (such as when a milky coffee made my lip swell and one side of my face go numb a few weeks ago). He was totally on board with me getting a test, made a note on my file and told me to walk straight into the hospital Pathology department and request a RAST test… wait, what?! So an allergist doesn’t need to approve me getting referred after all?! I just went up to the Pathology desk, asked for the blood test, they checked my file and took my blood 5 minutes later. Whaaaaat. Should get my results in a week or two, will update you!

A few parts of my treatment have changed since my last update. Firstly, my forehead is now using protopic for a while. I’m contacting Dr Aron in a week when we will discuss whether or not to start tapering off it. Basically, I was concerned about the fact that my forehead was always either red or on the brink of becoming red, and obviously being on the face I didn’t want to use a high frequency of even such a diluted steroid for a long time, but on the other hand I didn’t want to undertreat, which can be just as silly. Luckily, I still had protopic on tap with the NHS so saved a bit of dolla there (crazy how willy-nilly they’ll hand out immunosuppressants by the way – I hadn’t asked for it in a year, walked in relatively clear-skinned and yet they dished it out no questions asked). Immunos aren’t ideal, but my forehead is so clear right now that it doesn’t feel like a step back. It used to burn and sting for a few days when I first used it, but this time I couldn’t even feel it go on. Those 4 years of twice daily must have completely desensitised my skin.

If you have read previous blog posts, you’ll know that my neck and forehead have almost always been the first, if not only, areas to react when I flare. When I saw that protopic was clearing up my forehead so well, I tried to use it on my neck too but it did notttttttt like that! Angry, red and itchy! So after a few days of it getting worse rather than calming I switched back to the compound, and it’s been great ever since!

I was also getting annoyed that my seborrhoeic areas (if anyone needs a reminder, that’s scalp ‘n’ pubes) and also the corners of my mouth weren’t responding that well to the compound, so I mentioned that when I contacted Dr Aron. Seborrhoeic dermatitis can quite often have a fungal element, so he prescribed me trimovate, an anti-fungal, for my groin and mouth (not to be applied with the same hand…) and betnovate for my scalp. Well, hasn’t that just gone swimmingly! I’ve tapered from 4x a day trimovate to 2x a day, and from twice a day betnovate to once every other day. No more flakes!

What I’m finding funny (well, sort of) is that as my usual go-to picking areas heal up and there’s nothing fun to have a peel at anymore, I’ve gone back to my old teenage habit of picking and biting at the skin around my nails. I don’t bite the nails themselves, just the skin. I’m a compulsive picker, so for me it’s not only therapeutic but also sort of necessary that I have an outlet for my compulsions. My fingers are a bit of a mess, but I’d much much much rather that than eczema! Maybe I just need to channel my OCD…

The rest of my body is doing great. Legs and eyes are on the compound once every other day. Chest and upper back are using the compound once a day. I was using 223223 on my arms when one day an unexpected client visit meant I had to put on a long, wool cardigan over bare arms to attempt to dress up a bit, and within 10 minutes I had raised, hive-like rash on my arms that were soooo itchy and left lots of little scabs.

It’s been maybe two weeks now and although it’s not itchy anymore the scabs are only just about to fully disappear. So although my arms don’t look that clear, they feel fine. I went back up to 4x to control that flare and am now happily back at 3, along with my neck. Once the scabs clear completely I will attempt to go to 2 again!

My stomach, sides and lower back have been grouchy for about 2 months now, but they’ve finally fallen back into place. I have some dark patches from the inflammation that’s a bit annoying but it feels totally smooth. A few scabs on where my trousers sit but nothing too bad. Stomach is on 1x a day and I’m doing 2x on my lower back and sides to be safe.

I had a breakthrough with my eyes, which are now on once every other day. For ages, I thought my eczema was just going through a bad stage on them. I’ve had stringy mucus-y stuff build up in both of my eyes (especially after wearing makeup or using diprobase) for about 3 years now, but the optician said he saw nothing wrong with my eyes so I kind of just accepted it as a thing that happened because they’re extra sensitive (they start to cry as soon as I’m outside, as well). Then one day it got really bad and one eye properly swelled up with the stringy stuff, so I mentioned it to my pharmacist and he told me it sounded like conjunctivitis so to use antibiotic eye drops for 7 days, then move onto allergy drops.

‘Pah!’ I thought, ‘I’ve had conjunctivitis before and it made my eyes red and my sight blurred and the eyeballs themselves itched and it was constant rather than reoccurring, plus I’d probably be blind by now so it couldn’t possibly be that!’ Regardless, I’d already bought the stuff so thought I may as well give it a whirl, et voilà, within a few days the gunk stopped coming and I stopped needing to itch around my eyes, and it’s held off when I switched to the allergy eye drops. Plus, surprise surprise, not needing to itch my eyes has meant that the eczema has healed and been able to taper wonderfully too. Why did I not make the link before?!

Ooh, and I’ve started wearing makeup more regularly. Not quite every day, but I was taught a new trick which now means that my eyes no longer dry out when using foundation so I don’t have to go 2 days without makeup between every one day with – all I do is mix the foundation 1:1 with diprobase on the back of my hand before applying, then I remove the makeup at the end of the day using diprobase on a wet cotton bud instead of a facial wipe. I feel like me again!

I decided I wanted to start using it again not because I necessarily wanted to feel pretty; I just wanted to look as though I gave a shit about my appearance. It doesn’t matter how perfect your skin is, as a young woman working in client-facing business, it seems fairly out of the question not to wear at least a little bit of makeup, just to show that you can be bothered to make an effort. If I stood up in front of a client without makeup I’d probably lose business pretty quickly – why should a business invest in our services if we can’t even invest in a little time to make ourselves look presentable? Not the way I’d like the world to be, but unfortunately it’s not something that’s going to be changing very quickly.

Aaaaand I’ve started exercising again. I don’t react well to sweat so decided to start off ‘gently’ with Pilates… Turns out, I was pretty wrong on that one. It’s way more intense than I remembered! I love feeling the muscle burn again though and walking out all refreshed. About time I stopped using my doctor’s note as an excuse!

I still can’t believe it’s already been a year since I got my life back. Facebook’s ‘On This Day’ feature has been throwing out some memories of some pretty tough times recently, but little did I know back then how much my life was about to change. Here are some highlights of the last year:

This isn’t even the half of it, and it doesn’t show all the normal, everyday life moments that don’t ever get snapped. What a year!

THANK YOU DR ARON!

10 MONTHS - MEETING DR ARON!

All is good! My legs are still doing well on one application every other day, though I’ve had to start moisturising them once with Diprobase on the off-day as they get a little dry.

I’ve still got rough patches on my sides so I’m keeping those at 2x a day (it’s nothing major but I may go up to 3 if it’s still like this in a week) and my back and stomach have been able to return to 1x a day.

I’m tapering my arms down to 2x a day! Eep, finally! My neck and forehead are also stable (a tiny bit bumpy in places but nothing that annoys me) at 3x. I feel like something has just clicked and my skin has started to join the fight rather than just relying on the compound to do all the work. Basically, life is good, and although I obviously keep tabs on it, I never worry about my skin. I can handle it.

I’m not sure why my boobs look so big in that photo, but I’m not too unhappy about it.

More exciting than that even, a few weeks ago I actually got to meet – yes, MEET! – Dr Aron! He was working at the BMI in Hendon for a few weeks invited all the UK admins/campaigners to lunch just as a thank you for all the hard work us volunteers put into supporting people across various social media platforms all around the world.

The man is incredible. He is teeny-tiny but he has one hell of a presence (maybe because we were all hanging onto his every word!) and he makes you feel so at ease. Bit of a joker, too! We made him a collage to put up in his London office of some of the patients he’s helped, and he did wipe away a tear or two when opening it.

You can tell how much this means to him, but also how frustrated he is that many of his own peers refuse to listen and take notice of a treatment with such unbelievably high success rates. We will get there one day 

Besides meeting the doctor himself, it was absolutely incredible to finally meet all the other admins/campaigners who have become like a little family within a big family – these women constantly have me in fits of giggles over Facebook chat (much to my boyfriend’s annoyance) so it was amazing to be able to laugh together in person. The day was amazingly fun, yet at times overwhelmingly emotional. Everyone there (apart from Dr Aron’s daughter) was a patient or parent of a patient who had been saved by Dr Aron. We didn’t just talk about skin, but when we did it was cool not to have to hold back from talking about my favourite doctor too much! 

Here are yet more photos because, let’s be real, this was probably one of the highlights of my life so far.

Hayley (an adult patient) with Debra and Anjali (Aron Mom OG):

The instagram crew!

I’m now also an admin of the big Facebook group (Dr Aron Eczema Treatment Discussion Group), so I can continue to spend hours of my week giving support without feeling like a massive keeno with no other hobbies  (For the record, I do have other hobbies…. Helping people just comes first!). The group has nearly 9000 members and our Instagram page now has over 450 followers with new ones every day; everything’s just quite exciting at the moment.

So back to my skin, the only thing I’d really like to improve is my scalp; I’ve run out of Salcura shampoo and conditioner and kept forgetting to buy more (I’ve just placed a £51 order for just 800ml of each). It’s so expensive but it soothes my head so much. I’ve been using Pantene at my boyfriend’s house and whatever I can find at home, and it’s taken a big toll on my scalp – it’s real flaky and a little sore in places.

One thing I’ve noticed as all my apps taper down and my skin remains mostly clear: I just like to pick. I like to pick my skin, and I do it when I’m bored, when I’m stressed, when I’m concentrating; the only time I’m not doing it is when I’m asleep or completely lost in a moment of fun. It kinda fascinates me, this skin stuff. I’m not sure I even want to give it up. I think if I didn’t constantly pick at myself, my neck would be totally clear and tapering with the rest of my body (note how the rough patches are only on the right of my neck as I’m right-handed!), and maybe my arms would be too. My scalp would certainly be much improved. All the bits that have tapered very successfully over the course of this treatment so far have been the ones that are typically under clothing, hidden away from my beady eyes and eager fingernails. I just can’t help myself!

  

9 MONTHS

Confession. I’ve been locked out of my godaddy account since before Christmas and I simply haven’t had the motivation to do a quick email search to find my login details and write a new blog. Apologies. I’ve been out having fun and stuff without really thinking too much about my skin.

A lot has happened in the last two months! Firstly, my legs are now on….….. ONCE EVERY OTHER DAY! No issues at all! I’ve had two minor flares during the last 2 months, both mostly on my neck. My forehead has also been a little disappointing for most of it due to the number of holiday-season (look how Americanised I am! [still refuse to use a z though.]) make-up-required occasions and the cold weather. Also, I really like wearing woolly hats and they invariably make it worse, but hey ho, compromises.

In December, I mixed my first batch of compound on my own  It was kind of nerve-wracking at first and I worried it might all go terribly wrong, but I had videos with pharmacists’ methods to follow and lots of advice from other patients, so all turned out alright! Slightly messy though…

So the first flare happened mid-December. I went to Ascot Races and came back to a family party at my friends’ house. His mum had hired a huge buffet meal with caterers, but by the time we go there the only things left were French sticks and an 18” slab of brie. I avoided the brie, but was hungry enough to eat a piece of French stick… lol, JK, I ate in excess of 12 pieces of French stick. Oops. I shall refer to this as The Great Bread Binge of ’15. On the night, I was fine, which encouraged me to eat even more, but the next day I woke up with a nice little flare on my neck. Within a week, it was gone.

Christmas came and went with no issues; apart from Christmas morning when my dad decided to serve me a buttered bacon sandwich despite knowing that I have to eat dairy and gluten-free. His annoyance at my ‘fussiness’ and comments to “just scrape [the melted butter] off the bacon” had me on the brink of a Christmas breakdown. But no, nobody is allowed to argue on Christmas. I had curry for breakfast instead – win! 

I got looooooooads of health-related stuff for Christmas which was amazing, including lots of cotton clothes, a bullet to make smoothies and sauces in and a huge hamper of free-from foods – highlight being dairy-free chocolate spread (oh, Nutella, how I have missed you!). Subsequently, that 10lbs I lost due to the new diet has been firmly reinstated upon my thighs.

For NYE, we went to Copenhagen. I tried some gluten-free beer (only 50p?!?!) which was actually really nice. What wasn’t really nice was the cold. The cold is not good for me. I had another minor flare on neck, scalp and face, but everything else went just dandily. Hoorah!

I’m now in the process of tapering my arms down to 3x a day. As if!! It’s taken so long to get to this point that a few weeks ago I would have guffawed at the thought! No teething problems so far so let’s just hope I can keep it up (posting on this blog does seem to jinx it though…). I’ve had some inexplicable itchiness (no flare though) on my lower back and sides with a little discolouration so I went back up to 2x daily and now tapering back down to 1x a day. Come to think of it, it’s probably due to my parents having some work done on the house which has resulted in me being surrounded by dust whenever I’m there.

COME ON SKIN, WE CAN DO THIS!