Wednesday, 13 January 2016

CICLOSPORIN UPDATE || 13.01.16

Wait... what? How the hell have I not posted or updated this blog in almost 6 months.. oopsy.

I've been putting this post off for ages and ages, if I'm honest. I've gained a lot of new people in my life the past 16ish weeks, that have no idea about my 'skin troubles' and have only known me as the clear faced, mostly 'done up', make-up artist, that I have now become. I know its going to be really daunting for me to post this on any social platform, knowing that people will more than likely scroll to my previous posts and gasp in horror. However, for informative and medical reasons, I'm going to update my readers? myself? I dunno, I feel its good for me to reflect on things I've achieved and also the little dips I've had while on my medication.

Since being on my lower dose of 75mg, things have been very up and down. Well, I say very up and down, I mean I've still managed to keep a job, get up in the mornings and put clothes on, but I've had a few potentially worrying moments I guess.

Saying that, I have also had some really great times..

001.


Enjoying the remainder sunshine we had left for the last bit of Summer was lovely, sounds stupid, but being able to shave my legs and feel the warm wind run over me freely with no pain, and the sunshine warm my skin for the first time in over 6 months, was 'incred'.

002.



I got to bikini shop, pack a suitcase, and gain a ever so slight, nearly there, golden (mainly freckled), tan ;) Me and Craig jetted off to Egypt for a week in October as a last minute, completely impulse, get away (literally booked 2 weeks prior), and the weather was B-E-Autiful. It was SO. NICE. to have the sun on my skin.

Obviously it was important for me to talk with my doctor before I went, I wanted to talk about if I was to do anything special while in a foreign country etc, I was literally just advised the norm - Shade during mid day, plenty of water, and a hat. Same old same old with me (ginger probs).

When we arrived the heat hit us both like a welcoming but almost alarming hug. On the second day of our holiday the back of my legs, and shoulder blades flared quite badly - swelling and oozing was suddenly back, and I was miles and miles away from my dermatologist, not to mention with a boy I barely knew at the time. It was frightening, however Craig did his best to keep me calm and help me ignore it. He also suggested swapping my thick, white, 'sensitive', (expensive), suncream, to his thinner oil (with the logic that it'll allow my skin to breath a little more, and not clog up the pores) - you can imagine my reaction, right? WHAT, you want me to put on a PERFUMED OIL on my skin.... but honestly, it was what changed my holiday from a disappointment, to jumping around in the sea again and filming each other doing slow mo jumps into the pool. (We also had to buy another bottle seeing as I then stole all of Craigs sun protection, soz pal)

003.


I've got drunk a lot... probably too much. When I first started my meds I was really really cautious to what I was drinking, how drunk I was getting and maintaining a good hydration level throughout my night out. However, I have gone a little haywire since 'getting away with it' for the past 3-4 months. As you will see in following pictures, my skin has suffered a little recently, and I do blame it on stress, diet, and alcohol.. I've quietly made it one of my New Years revolutions to stop binging on alcohol so much, my logic is that my skin will have a funny five minutes whether I have one glass of wine, or 5 double vodka lemonades, so when the opportunity of nights out popped up, I'd jump. Time to slow down and have some cosy weekends in... *heres to the beginning of gettings old*

004.


Hilariously, and ironically, to my dermatologists surprise, I went for a job interview back in October that I have strived towards since the beginning of my final year at uni. After working on photoshoots, building up my collection of makeup, and becoming more and more comfortable with touching peoples faces - I decided to apply to one of the biggest and most well known makeup brands in the world. And I got it. I'm currently on a journey which equally scares me and excites me, who knows what the future holds with my skin, but for now I'm trying hard to suck in as much knowledge and information as I possibly can about the beauty industry and the minefield that is what product/tool does what, in a professional way.

005.


My medication has also allowed me to build relationships with people, visit new places and look towards the future in a more positive light. (The pictures above are from when Craig took me away for 4 days, to a cosy little apartment type senario in Cornwall - where we crabbed, walked and ate loads of pasties, and a photo of our first little christmas tree together. (And me being a little merry on Christmas eve)

Now I've touched on the positive, I just want to mention a few of the negatives I've experienced since going from 200mg per day to 150mg per day.


I know, this is NOTHING, compared to what my skin once was. However these were the first flares I experienced for a while on my face. During this time I was going through some trouble at home and stayed with my dad for a couple months, I hated my job (a phone shop - not really me, need I explain?), and I was just generally pretty exhausted from not having many days to ~chill~.


From around the end of November to now, my skin has kind of taken a little turn for the worst. Looking back my skin has always, ALWAYS been worse in winter. It seems my body doesn't really like wearing layers and layers of clothes and itchy jumpers, (as much as I love them, they also make me feel sick). My skin is clear, except the creases of my arms occasionally flaring, the skin around my armpits, and the back of my legs. I'm not going to lie, I have been pretty uncomfortable as of late, my skin has dried up a lot, I become a lot more itchy at night (central heating maybe?), and I've found it pretty on and off with sleeping/waking myself up itching. This months been quite testing for me, without a shadow of a doubt when my skin was like this before, I would be slapping my steroid cream on it just to make it go away for a few hours. However obviously, this is a thing of the past.

                              ***************** GROSS PHOTOS SOZ ********************


So as an experiment, a stupid, regretful experiment. I decided to put my bandages on one night before I had work, my leg was really getting to me and I couldn't STOP itching/scratching it, so I put my old viscopaste bandages on for the night in hope for some relief. Man on man was this a mistake, I woke up the next morning to not just the crease of my leg being inflamed, but the entire section from where I had the bandage! It seemed like I'd had an allergic reaction to the bandage in the night, which resulted in a slight panic, a little cry, and a few flappy moments before having to catch my train for work the next morning.

As you can imagine, the time between now and my last post has been strange, I've been really good, then really down again, when something goes from TERRIBLE, to AMAZING,  its so hard to accept when something starts to go tits up again, yano? I've had my partner to help me a lot through this, as I'm sure a lot of TSW sufferers have to be thankful for. When I look at these pictures I feel sick and just want to hide myself in a dark room, but having friends and family that are accepting, asking if you're ok, or if you need anything - just small things, really helps (and not to mention helps you feel less embarrassed about how your body is). Since being well I have been under a great amount of stress, I've gained a new job I really want to aim high with, I'm not earning a lot of money due to my small contract, I have a relationship to maintain, I've moved in and out of my family home, and I've suffered briefly with the crippling anxiety and depression I first experienced back when I was really sick. Times have been quite hard, however I'm hoping the Spring will bring good things. My derm is hoping to take me OFF THE MEDICATION IN MARCH, which I'm absolutely terrified about, as you can imagine. However, I feel I am in safe hands. I've not used topical, oral, or any other kinds of steroids in 10 MONTHS, which is just incredible and I feel so proud. Who knows what the future holds, but I'm plodding along for now, getting up and out of the house and enjoying each day as it comes is what I'm all about right now.

If anyone has any questions, you can message me on FB - Madeleine Grace Webb

Happy healing :) xoxo

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