10 October, 2012

The good, the bad and the ugly

2011 - 2013 


With my medication cocktail I have some control again over my flushing by now. 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. However, I still have longer periods of unexplained worsening. The winters are worst. My fingers swell badly and become stiff (see pics), 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. The only thing that really bothers and affects me is the flushing. 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 ym face mainly and they are triggered for me by cold weather and perhaps also a lack of vitamin D or something. It returns every winter. It does my head in sometimes, but I mostly mind the flushing and burning. 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 does affect it as well, both in terms of oedema (water retention) and extra weight gain. Apologies for the lack of smiles and sheer look of misery in general, many friends comment on it but it's just the way my face tends to shape itself, I am usually not feeling that bad, or even grumpy - well, only on some days perhaps :)
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 don't always look as red in the face as I think (and feel) I do. And occasionally it happens that I think my skin is looking pretty ok and I am not even thinking about it, and I bump into someone who makes a negative comment about it. (Ai, having a bad day, don't ya?). So, apart from how it feels, I hope it might be helpful for some to be able to See what it looks like throughout the years and seasons. When I read messages on the rosacea forum, pictures are one of the first things I hope to see, mainly to get a better understanding of the subtype.
I notice that I am doing a bit better in the summer, despite not liking the heat or the sun, and that winters bring out seb derm for me, and I often have red rashes around my mouth and inner cheeks. I also feel I look way more puffy then and swollen. The flushing and burning and overall redness seems to be up too then. I tend to keep a picture diary, so I can look back after some time and get a less subjective image. When I am having a particular bad day however, I usually can't even be bothered with taking a pic, so those ghastly ones ate not on display here. However, here are some images and descriptions.

These last 2 years have not been too bad. I guess the diary updates will highlight more of the specifics. Probably more coverings of the bad days too :) When things go very well I am usually out and about and not wailing behind the computer screen. I find that the inflammation and flushing attacks come in waves.I can now on a good day get out of 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 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, UVA 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. 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 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.

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:


      

   

 

(fag and drink for picture only! I don't drink nor smoke)


In earlier pictures, I have very little eyebrows. For some reason they fell out over time and in these pics above, I experimented with black charcoal. Normal mascara or eyeliner or any sort of make up makes me deep red but the charcoal is no problem, so I fill my eyebrows in with it. I dare to state that it looks even more natural than normal make up :)  I tried blueberry juice for lipstick (see former page with me with a red face and red lips), and it looks fairly hideous I think..  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.




 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 developed more and all day lasting flushing, redness and burning over time. The problem with mine was that it wasn't only visible, but unlike the skin of some 'ruddy complexed' people, it actually burned and hurt a lot. Often even a pink shade would feel to me like a bright red, throbbing flush. My facial skin became thinner, more dry and a LOT more sensitive. The neurologist I saw thought that the ongoing inflammation and flushing could have triggered the facial nerves by now, making them overly sensitive and sending a lot more pain signals to the brain than before.



 
As you might see, face is becoming puffy as well



After second IPL, anti-inflammatory meds had to calm the inflammation down


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




You can find many more pictures at the end of this blog post I made.
      











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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