10 October, 2012

The good, the bad and the ugly


2011 - Now
The main reason for putting so many pictures up on this blog, is to show what my rosacea looks like. Descriptions are after all pretty subjective; what is uncomfortable or red to me, might look very different to others. When I feel very flushed and burned up, I either might look the part, or sometimes I don't look too red to others but still am having a lot of burning nerve pain. And sometimes I think my skin is looking pretty OK and I am not even thinking about it, but bump into someone who makes a negative comment about it. (Ai, having a bad day, don't ya?). I don't always look as red in the face as I think (and feel) I do. And sometimes I might look really red to others but not feel the debilitating burning I often feel. But usually the more red I am, the more it burns and feels on fire. So, apart from how it feels, I hope it might be helpful for some to be able to see what it can look  like throughout the years and seasons for me.

With my medication cocktail I have some control again over my flushing nowadays. I still flush to many triggers, but when I avoid the obvious triggers and stay cool, in every way, I can limit the flushing and burning overall to the evenings and night occasionally. Sometimes I won't flush for days in a row. However, I still have longer periods of unexplained worsening. The winters are the worst for me, strangely enough. The cold is something I long for in summers but in deep winter my skin goes scaly and red and pretty inflamed. My fingers can then also swell and become stiff. I was tested and diagnosed with Raynaud's syndrome. I don't mind it however. I had it as a child already, very hot and tingling and burning hands and feet in the winter. They would become so red and swollen that they would itch. But the only thing that really bothers and affects me is the face flushing and burning. In winters my flushing becomes worse as well, and I often develop an annoying skin problem called seborrhoeic dermatitis (seb derm). Eczema-like rashes appear on my face mainly and they are triggered for me by cold weather and perhaps also a lack of vitamin D or something. I often have red rashes around my mouth and inner cheeks. It returns every winter. It does my head in sometimes, but I am controlling it mostly with a cream with ketoconazole. My pharmacist is a true star and makes me a very mild cream base with 2% ketoconazole. The base is made of cetomacrogol almost a wax) without preservative, on my request. I can store it in the fridge and get a fresh new cream every month. The past years I also developed cold urticaria in winter; itchy hives on my cheeks in the cold weather. The flushing and burning and overall redness seems to be up too then. So, I noticed that I am doing a bit better in the summer, as long as temperatures aren't too high, and despite not liking the heat or the sun.

So my problem these days is mostly still the face flushing and burning and redness. The cosmetic aspect of it all has become of far less importance to me by now, although I do hate how my face has become more and more puffy overall. The medication I use does affect it as well, both in terms of edema (water retention) and extra weight gain. Apologies for the lack of smiles and sheer look of misery in general in my photos, I am kind of a professional non-smiler I'm afraid. Doesn't mean I feel miserable! Usually am feeling fine. Many friends comment on it as well, but it's just the way my face tends to shape itself. Just as Bill Hicks about that one haha.



When I read messages on the rosacea forum, pictures are one of the first things I hope to see, as it helps visualizing things. I tend to keep a picture diary for myself, or did so for many years, so that I can look back after some time and get a less subjective image of how my rosacea is acting. Memory is very flawed in that respect. When I am having a particular bad day however, I usually can't even be bothered with taking a pic, so the most ghastly skin flares are not on display here. However, there are some nasty images and descriptions included.

These last 2 years have not been as bad as the dreaded worst year 2005. And when things go very well, I am usually out and about and not wailing behind the computer screen. I also find that the inflammation and flushing attacks come in waves for me. I can now, on a good day, get away from the fan and stay sort of pink for a good deal of time, as long as I don't sit in the bright sun and have a cold drink to sip on. When I go somewhere, I sit in the car with the car-fan (or if need be the air-conditioning) on. I can´t have the sun shining on my skin through the window as it causes redness and extra burning. I once read it up and there is some UV ray that penetrates the glass, UV-A I think it is. So when I drive, I try to keep my face out of direct sunlight, somehow. I have about 15 hats to choose from and always wear one when outside. Fluorescent lighting in the supermarkets are a pest too and I keep the hat on when I have a bad day. On normal or good days the lights don't bother me as much, as long as I don't make a camp site right under them. Normal light bulbs are fine. When I am not in the fan and not in the airco, I bring a cold pack and gladly I can go out nowadays without the need to use it for an hour or two, especially when it is cool and windy. Wind is my friend :)  I have ice cubes in a plastic bag with me to suck on when I feel the heat and burning crawling up again. Even when not too red, my skin still burns to a degree, maybe from the thinned skin and the many years of flushing and dermal and nerve damage. But I got used to that. The flushing attacks bring just such heat and pain, that I need to cool it instantly. Head under the cold water, cold packs and fan on. In the evenings the burning is worse, the body temperature rises a bit and I get tired.

During the day, in the summer, I try to sunbath for half an hour a day at my ´sun deck´, with my face in the shade and body in the sun. It helps me get enough vitamin D, as supplements make me flush for some reason and I am critically low on vitamin D according to my immunologist. I love to watch movies and series, discover new music, read papers, do my research work for uni (work, not studies anymore) and art columns that I write for a magazine, and I love internet and staying in contact with friends and fellow rosaceans. I met some amazing and extraordinary people over the years due to this all and the support we give each other is superb, and I am not trying to be mushy here! As with every chronic illness, information, sharing and support can be such important factors to stay positive. And there are some amazing, generous and supportive (rosacea)friends out there. Of course, the majority of people I hear from are passers by; only staying in touch for as long as the questions last. I have learned not to get attached to people much, as most will not stick around. I have enough going in my life so that is not a problem, but sometimes I found it hard to be sucked into entire life stories, and for the updates to abruptly stop whenever the person in question found something that worked for their rosacea or their baby was born or whatever the story was. But that is life. The same happens on forums nowadays. People mostly are there very ready handed to them answers and not so much for the community atmosphere anymore.

Anyway, the ´Bad´ and `Ugly´ section below shows the troubled cheeks at such times. 
An impression of the good and the bad days of 2011 and 2012, all skin wise of course, but generally my mood plummets as well when I feel burned up and with a face on fire..




The Good






In earlier pictures, I have very few and thinned out eyebrows. For some reason they fell out over time (I learned from someone commenting here that it is most likely a condition called ulerythema ophryogenes), and in these pics below I experimented with black charcoal to fill them in. I am not a fan of the 'landing strip'-type of mega thick eyebrows the girls nowadays tend to have, but on some days mine looked just as bad haha! As in; too thick, too dark. But that is charcoal. Normal mascara or eyeliner or any sort of make up makes my skin turn red for some reason, but the charcoal is no problem so far, so I fill my eyebrows in with it some times. I also tried blueberry juice for 'lipstick'. I do miss the old nice make up days! I also notice that my skin can look a lot more puffy when I flushed a lot, really get swollen 'chipmunk' cheeks then :(






The Bad

  
         
Some painful flushes, some painful rashes. I doubt the redness looks as bad as it did when I looked in the mirror, but for an impression of what my subtype of rosacea looks like when it´s not going well. I burn badly in all these circumstances pictured, my skin feels boiling hot, throbbing pain, as if I have a bad sunburn, but then worse :( 






 The Ugly
 
 Very unflattering, I am aware of that... I have to train myself now that I have this blog to smile and look friendly even with a face like a lobster. Here you see rashes, rosacea flares, sebheroic dermatitis outbreaks and eczema, sometimes lovely combined :)  And a very swollen and inflamed face. Luckily this is not something I deal with on a daily basis, but I still get such flares. And that´s it for now with the picture section. I don't want to put your sore eyes under more strain from seeing these fire engine faces.

I'm sorry that it looks so yucky, this is actually eczema with seb derm, always in winter



9 comments:

  1. You are very beautiful :) !

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  2. Not a single picture in this post is "ugly"! You're an incredibly pretty woman! This can be a difficult condition to live with, and at times very painful, but you are wonderful for bringing awareness and should not let this prevent you from doing all the things you want to do with your life!

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  3. Thank you for such kind words. It is very nice to read them. I know that over the years rosacea has changed me in a lot of ways, face wise, skin wise, also personality wise, and I try to share that and also show the 'ugly' -in my eyes- pictures of when it's raw and red and swollen. In the hope that others can see they are not alone with their, at times hopefully, red faces.

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  4. Hi! Finally..........someone with the same 'misery-rosacea'....
    My question: wat do you use for the redness daily? I mean also the burning.....it's horrific, i know....

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  5. Hi

    I take medication which helps to control the redness and the flushing and thereby also the burning to a degree; clonidine, propranolol, mirtazapine and an antihistamine. I also use a fan on low when I feel my skin starts to burn. I avoid food triggers and stay out of the sun. 'Misery-rosacea' is a good description, I'm completely sick of it myself! 17 years and rosacea is still going strong, but it has honestly improved for me since starting that medication regime.

    Best wishes

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  6. Oh. My. God. I have exactly the same thing. Everyday around 2 pm it starts and it is so bad by 4 pm that I often find it hard to function. :( have you figured out what was causing it? I keep getting mixed messages.

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  7. Hi anonymous

    It is hard to pinpoint the precise causes of these flushes. I've had them for so long now (16 years or so) that my skin is just very prone to them; blood vessels are weakened and there are too many of them. I try to stay cool (fan if need be), take medication to make it harder to flush and get so red. But then there are also other triggers; certain foods, stress, heat, sun, perfume, well a lot of them actually. Like living in a fish bowl. I do find that when you can prevent these constant flushes and red face occurrences, that they become easier to avoid and less aggressive when they do happen. If that makes sense? It might already help to just try to break this flushing cycle and give your blood vessels and nerves a break and some rest from the flushing. The problem is that one thing won't work for everyone. So it is hard to find a treatment that will work for you. But things to try are antti flushing medication, laser/IPL (although I'd do test patches first and find a good, experienced practitioner for that one), creams (Soolantra lately for instance), diet, life style changes and mostly, don't overheat yourself.

    Best wishes

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  8. in some of these pictures you truly look like a model! You are beautiful!

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    Replies
    1. So kind of you to say that. I feel like hiding when rosacea is flaring (which is half the waking hours).

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