15 August, 2012

What happened in the last 13 years, sigh..



I have been dealing and not dealing with rosacea for the last 13 years, after it hit me at the age of 19 and it is still, so many years down the line, affecting my life. At the time it seemed that the red, burning, flushed cheeks hit me out of the blue. I had just finished my A-levels and had started with law studies at uni, something I had been looking forward to for a very long time. I’ve always had pale and normal, very clear skin and had not even dealt with one outbreak of acne during puberty. Lucky me! I could blush from alcohol though and never liked high temperatures. I don't even remember skin issues at the time, but my cheeks would get pink from nights out with alcohol involved. Never to a troublesome level though. I felt by the end of teenage years, I was entering the safe zone skin wise and had just been just lucky with peaches and cream skin. Well, I was wrong. In hindsight I rather had dealt with some years of acne compared to the rosacea that was about to engulf me. 


First; what is rosacea?
Rosacea is skin condition that affects many adults. It is characterized by redness, inflammation and/or flushing of the skin that looks like blushing, but doesn’t go away. According to the American Academy of Dermatology (AAD), “Rosacea often begins with a tendency to blush or flush more easily than other people. The redness can slowly spread beyond the nose and cheeks to the forehead and chin.” The redness and flushing associated with rosacea can be uncomfortable, both physically and emotionally. Some people with rosacea get red papules and pimple-like eruptions on the face. A recent article called “Unlocking the Mysteries of Rosacea” by Jan Bowers from Dermatology World stated that “According to results of a recent NRS survey of 801 rosacea patients, a strong majority of patients in all subtypes said the disease had inhibited their social lives.” The article went on to add that “respondents also cited receiving negative comments or stares and cancelling social events because of self-consciousness regarding their appearance.” Clearly, these symptoms are having a negative impact that can seriously affect the lives of rosacea sufferers. There are a great variety of triggers that can exacerbate a rosacea type skin, such as extreme weather (both hot and cold), spicy foods, alcohol and stress. The Journal of Dermatology outlined some common rosacea triggers based on a recent study in their article titled, “Standard Management Options for Rosacea, Part 1:  Overview and Broad Spectrum of Care”. The triggers are as follows, ordered from having most effect to those having least effect:  “Sun exposure, emotional stress, hot weather, wind, heavy exercise, alcohol consumption, hot baths, cold weather, spicy foods, humidity, indoor heat, certain skin care products, heated drinks, certain cosmetics, certain fruits, marinated meats, certain vegetables and dairy products.” Avoiding and/or reducing triggers can aid in the reduction of rosacea symptoms, but the skin will still need the proper homecare. Avoiding triggers can help reduce the irritation though. Prescription topical medications can provide a reduction in rosacea symptoms, as can laser or IPL. As with other skin conditions, there are also medications that can be prescribed for rosacea. But controlling rosacea, and in particular rosacea flushing and burning, can be notoriously difficult. 

Common topical medications for rosacea are antibiotic creams such as metronidazole, clindamycin and erythromycin. Other topicals include azelaic acid, sodium sulfacetamide, sulfur and tretinoin. However, these topical treatments can have side effects, like skin irritation. Some are not safe for women who are pregnant or planning to become pregnant. Depending on the severity of the rosacea, oral antibiotics like minocycline or doxycycline may also be prescribed. There are also anti flushing medications, like clonidine, beta blockers, certain antidepressants, anti-inflammatories and antimalarials. Some people find that their skin improves with added vitamin D. There are also many natural things you can do to help your rosacea skin, although it's all trial and error and what might work for one, could not work for the other. There are natural anti inflammatory herbs like boswellia, flaxseed oil/fish oil, niacinamide, grape seed extract. Some find vitamin C supplements to be helpful. Or quercetin, oregano oil, curcumin, lysine. Keeping an eye on your dietary triggers can also do wonders. Cutting out some of the sugar you might eat and processed foods, to start with. Some foods are high in histamine, which can be a trigger (old cheeses for instance, tomatoes, bananas, yogurt, nuts). Some people see improvement of their skin by cutting out dairy (replacing it for instance with rice milk, almond milk). Some do better without grains. A lot you can still try, and always drink plenty of water and avoid too much alcohol (which is an inflammatory and will dilate your blood vessels).


November 1999
After a few weeks of some hefty stress, I developed mild eczema on my face that rather annoyed me. I had stopped taking my birth control pills, which I only used to control painful periods anyway. I did so impulsively, because the eczema made me anxious and I suddenly believed there could be a link between those hormones from birth control pills and the eczema, without any real logic behind it btw. I was mainly fretting myself because I felt so anxious suddenly about the eczema spots around my mouth, which seemed to grow every day (no doubt because of all my stress about it, as well as stress about a relationship issue at the time). I went to my GP, an older man, and asked for a steroid cream for the eczema. I remember him grumping a bit and telling me initially it was not necessary. I wished I had listened. But I pushed for a hydrocortisone cream, believing that everything would go back to normal once I got rid of the eczema, the shortcut way. Unfortunately this was the beginning of the end of life as I had known it until then. I don't want to sound overly dramatic, but it is true. Once I started applying this hydrocortisone steroid cream on a some areas of the skin around my mouth and cheeks, nothing initially happened. But I kept using it and my GP had also advised me to use some vaseline on my cheeks as they were dry. By day four or five of the cortisone cream use and after putting a layer of vaseline on my cheeks (which I had done in the past without problems), I remember my face started to flush and burn suddenly in the evening. I wiped the vaseline off again, wondering if I reacted suddenly to it. But I was flushed and burning red all night. I never used to flush like this and was afraid I had an allergic reaction perhaps. But since my face was cleaned now, I also assumed that by the next day, things would be back to normal again with my red cheeks. I woke up flushed and burning still however, the next day. And to my horror, I kept flushing and turning very red in the face after that. When walking into a warm college room. After dinner. When the heating was on at my dad's house. When I went out to dance. From drinking alcohol or hot beverages and so on. I was getting panicked about it. I would turn pale again after such a flushing 'attack', but with the slightest emotion, temperature change, hot food or alcoholic drink, the redness would shoot up on my face again. I mainly flushed on the top half of my cheeks initially, the apple of the cheeks. But it was very red and visible. I was bewildered by it. After a month it dawned on me that this was perhaps not a transient thing. Even going to university classes became a chore as I would be on fire by the end of them. 

By then my skin could turn from pale into bright red within seconds and could stay like that for hours. It would get super hot and burn like it was sunburned drastically. You could put your hand on a cheek and feel the strong heat coming from it. I would often leave my parents' or friends' houses in the evening in order to walk around the streets outside, trying to bring the flush down. It was a very sad and lonely time. Initially I continued to go out to pubs and clubs now and then, like I used to do. But it became increasingly difficult to enjoy it and not look in the mirror of the toilet every half hour. Coming home and removing the pancake-layers of makeup that I now used for going out was stressful, as I was even more red for days after from it. The flushing episodes made my face look swollen and puffy. And the worst part was that others only saw a 'healthy looking' girl, with nice apple cheeks. It was very hard to convince them that my cheeks actually burned, and that I couldn't care less at a certain stage about the way I looked, but more about what I felt like (although that was a transition thing, initially the color really bugged me). I remember talking to a friend about it and complaining about my mystery condition and how I didn't know anyone who had the same problem. He said wisely that he would be extremely surprised if I were to be the only person on this earth to deal with this. That I had to keep looking and searching and would ultimately find out what it is. That thought got stuck in my head. And he was right. I started reading up on it, and suspected an allergy at first. I remember scouring the internet in my early 20's, trying to find indications of what skin issue I could be dealing with, and stumbling on a rudimentary site (back in those days) about rosacea. And thinking: Hell No. I don't want to suffer from thát... But unfortunately I later learnt that I do


Still not knowing what was wrong, but uncomfortable with all the limitations I had and the way my flushings seemed to worsen over time, I did found out myself that I reacted to certain foods. They matched the 'high histamine foods' foods which many people with rosacea also avoid, as I now know. This list included for instance red meats, tomatoes, egg plant, spinach, old cheeses but also alcohol, sugars and spices. I had visited homeopaths by then, had acupuncture (both no effect) and I had seen a highly recommended Chinese doctor at the other side of the country. The herbal drinks she gave me made my belly swell up and my face burn, and after months and months and more months of herbal teas and an anti inflammatory diet, I was still as bad, if not worse. By then I had also convinced my GP that I really did need a referral to a dermatologist in hospital. I have since seen more than half a dozen different dermatologists and they all said I have rosacea. Shudder... Most insisted I would start with topical and oral antibiotics. Metronidazole cream and doxycycline. Even though both made my flushed and burning skin much worse. Many doctors seemed to have no real clue what to do next. Several said that at least I looked healthy with my rosy cheeks. "Uhm, yeah thanks but it burns badly!" Some didn't take it serious and sent me back home. Others shrugged their shoulders when metrocream or doxycycline turned out ineffective, and told me to just live with it. So I read all I could about the symptoms, had my mother involved who helped thinking along and made sure I went back to the doctor to get some other health issues eliminated. I had many allergy tests, tests for Lupus, SLE, ALS, thyroid issues, cancer and all tests came back negative. So from then on I lived slightly paranoid and avoiding my triggers for 2,5 years. Trying to work around the triggers and assuming it would all settle down again with some more time and patience. I also spent a small fortune on skin creams, hoping that The One magic potion would give me back my old skin. They only made things worse though. 

Another issue I had in the beginning, was that even when my skin was not visibly red, it was constantly feeling on fire and as if suffering from nerve pain. I had a very difficult time for the first years convincing my mum and sisters that this was not all in my head. They thought I was being a drama queen and was fretting about a few slight blemishes. Over time the redness and flushing became very visible though and only then did they start to believe me :( I also became very anxious overall and started to act more and more like a recluse. Before rosacea started, I was studying law, was part of a student organization and went out dancing and drinking a lot. Just the usual student lifestyle. But now I stopped joining and also radically changed my academic career path. Despite being top of my class in law, I overnight left Law School, as I could not see myself ever being in court with my sore flushed face anymore, and started to study Art History. I did love that studies, but it was a shame nevertheless as I had a real talent (if I may say so) for law and did like to become a lawyer. But I was so withdrawn and obsessed with my skin by then, that I just didn't see myself working in court :( Somehow I had a deep feeling that my skin problems were going to be for life, and not be resolved any time soon. Unfortunately that turned out to be true. 

But after almost 3 years, hoping doctors were wrong and that I had just some allergy that would pass, I suddenly had one whole year of diminished symptoms. A year of remission. I had a new relationship, felt better, worried less and actually ate everything I wanted again ("bad" stuff, like garlic, tomatoes, chocolate, lots of cheeses, bread, sugar, ice-cream etc etc.). I relaxed a bit, went out again (accepting the slight flare ups from dancing or drinking alcohol) and started to believe that the worst was behind me. I did tell my new partner that I did not want to ever go back on birth control pills, as I by now had become suspicious of synthetic hormones. It was 2003 by then.



After a week in the hot Turkish sun with very humid weather and 50 degrees C temperatures, lots of stress and the wrong birth control - with progesterone hormones, whilst I had requested a copper coil and had strongly warned the docs I couldn’t handle the Mirena one “because of my face”... rosacea was back again. The obgyn had promised me that the Mirena coil was also without hormones, because its hormones 'wouldn't enter the bloodstream' and only stay in the uterus. Nowadays I scoff at that advice, because it is completely wrong. As if those hormones would have had any use or function if they never entered the bloodstream... Well I know that now. But the Mirena coil combined with a hepatitis A vaccination I had gotten plus the 50 degrees Celsius Turkish now triggered my flushing and burning all over again. We were in Turkey for over a week and my anxiety came rolling back. My bf at the time had said I was mad for having that vaccination, because it wasn't necessary in Turkey and because he thinks all vaccinations are poison anyway. But a doctor friend of mine had convinced me otherwise. Did it play a role in the return of rosacea? Or was the Mirena coil to blame? I don't know. I do know that my new acupuncturist slash homeopathic doctor asked me straight away if I had perhaps had a vaccination recently. Because he saw more often that vaccinations can trigger latent autoimmune conditions. Hmmm... I did a bit of reading up and there is some research done on this topic too.. Dubious. But I had the hepatitis A vaccine when I already had rosacea. My dermatologist later also said though that I best avoid vaccines if possible from now on, as they stimulate the immune system. And I have diagnosed autoimmune conditions and an overactive immune system, so stimulating the immune system further can increase inflammation in my case. 

We came back from that Turkey holiday and I was flaring and burning again. I couldn't believe it and was super stressed. By now I couldn’t even use any skin care anymore, as my skin had become too sensitive for anything. If I stayed in a cool area with a fan and little triggers, I seemed to do not too bad. But going out into the sun, into a warm place, to the supermarket, to uni, the pub, all of that would make me flush and burn. People made comments about it, asked me if I had sunburn and why I turned so red. I  tried to not let it affect my life too much, as my bf asked from me, as he hardly recognized me from the girl he had met some years ago. I felt in pain, ugly, overwhelmed. The relationship stranded after a few strained years, maybe even more for him than for me. I was going to another hospital and a very good dermatologist by then, who seemed knowledgeable and to take it very seriously. So what was I taking and using during those years?

1) metronidazole cream (or rozex cream), which made me more red and made my skin feel like acid was thrown at it.
                     
2) oral antibiotics (tetracyclines), which I had to take for 3 months and that gave me IBS and IBD plus intense flushing, even more than I normally had. I tried otc antihistamines which did very little. I took moxonidine, a blood pressure lowering medication. It seemed to work initially, mainly by making me hypotensive. But after a few years I started to feel like the moxonidine made me flush more instead of less. I also needed to take more and more of it. I found out one of moxonidine's side effects can be vasodilatation (widening of the blood vessels). I tried diazepam, which made me feel like I was hit by a truck and which on top did not affect my flushing. The only other option left seemed IPL or laser therapy at some point. In my next post you can read what happened when I had an IPL treatment in England.. 
You can read in more detail what I tried during these years, in the process of finding a treatment and all the (sometimes desperate) messages I posted on Rosacea Forums in this blog post. At the bottom of that post I also summarize everything I tried in the past, from acupuncture to traditional Chinese medicine and healing crystals.

   

In hindsight, I asked my doctors how all of this could have started. I've been told by my latest doctors that they suspect that I already had the rosacea gene so to speak. Meaning in my case: the tendency to blush and an otherwise very pale skin. He thought that sometimes something has to trigger rosacea to erupt. For one person that can be stress, for another a steroid cream potentially, for another it is hormonal change or something else. Nobody in my family has rosacea, but my mother's side of the family does have couperose on their cheeks and my dad's side of the family struggled with eczema and stress. Was it that cortisone cream that triggered my rosacea? I still think it was. 

Ephemerality wrote in regarding steroid use in rosacea on January 9, 2017: "Steroid induced rosacea does not require long term usage of steroid. For some people, even 1 time application can do all the damage. Don't believe the standard BS thrown out there by those "medical professionals". Everyone's body is different; everyone's blood vessel flexibility/ resilience/ stability is different. Maybe, it is true, for the majority of people it takes months of steroid use to develop a red rosacea face. And there are also people who never develop a red face, no matter how long they keep using a steroid cream. However, for a small number of people the full steroid damage only requires a very short steroid use time (days, not even weeks). There is no possibility to persuade those medical professionals to admit/ believe the severe danger from steroid. The biggest tools (pretty much the only tools) western medicine has are "antibiotics" and "steroids". By playing with those two things, pharma comps and docs have been able to make tons of shxt loads of money. Especially those dermatologists. Without steroid cream, half of them would show up with a dumb face and lose their job right there, because they really have and know nothing else to offer patients. But the general population keeps believing their fooling with the notion that "short-term steroid use does not cause problems" and "steroid usage under direction of your doctors is safe".

And ephemerality went on to ask me: "There is not much useful info on the internet about treatment/ recovery of steroid induced rosacea. It seems like there is a lot of discrepancies about whether "steroid induced rosacea" can be cured or not. Some forum threads say that it can be gone in 6 months. but I notice that some people say that they are still suffering from it after many, many years. Did you develop constant background redness (like a painted veil - very diffused) right after hydrocortisone use? Did you notice some kind of weird glistening/ shine over all area you applied that steroid to (but the glistening is not from oiliness on the skin)? What did your derm say about recovery from constant redness caused by the steroid?"

It is true; normally a short course of steroid cream use doesn't give people steroid-induced rosacea overnight. 

It usually takes a prolonged time of steroid cream use before rosacea can appear. However both my dermatologists told of patients who had their rosacea 'triggered' by steroid use (creams or injections) after only short term use. One told me steroids can be a 'switch trigger' for people with lingering rosacea predisposition (paler skin, fair features typically, ability to blush). I don't think in my personal case that it caused me steroid induced rosacea, strictly speaking, conflicting as this might sound. When you google images of 'steroid induced rosacea', it usually shows symptoms that look more like subtype 2 rosacea, with thickened inflamed and more permanently red skin. You usually get that after prolonged use of steroid cream. My dermatologists said that in my case, they think the steroid cream somehow triggered my facial flushing and burning; that it triggered some predisposition for rosacea. That I had the (dormant) rosacea gene so to speak, with a tendency to blush (very mild hint of redness after I drank alcohol in my teens), with very pale skin, and that sometimes something has to trigger rosacea to erupt. For one person that can be stress, for another a steroid cream potentially, for another it are hormonal changes or something else. Yes, at the time my skin seemed to have a shiny veil over it indeed, and showed redness. I had always had pale skin and never flushed like that, with such heat radiating from my skin. It felt like a very bad and painful sunburn that developed overnight. And the stress that I had developed from this, probably didn't help either. But when the flush stopped, initially my skin would look normal again. Now, 18 years later, I have a lot more background redness but I think that is just the natural progression of the rosacea, from all those years of flushing and inflammation.

For steroid induced rosacea, there seem to be patients who can get their old skin back after treatment. Antibiotics for instance, certain creams. For subtype 1 with flushing and burning, this hasn't proved helpful. I can mainly try to keep the flushing and redness at bay nowadays with anti-flushing medication and trigger avoidance. I only used a hydrocortisone cream for around 4 or 5 days in the area around my mouth and nose, a bit on a cheek, and developed rosacea. It was ridiculous really. But there are plenty of people with rosacea who develop no problems from steroid cream or pill use. You just don't know beforehand if you'll be fine or if you are one of the unlucky few who have their rosacea worsened or even started by it. But my derm always says to me that he thinks steroid use is Russian roulette if you are a heavy flusher. He warns me against any type of steroid use, including steroid nose spray and eye drops. And for me, the worst part is that the hydrocortisone use was not even necessary....



So what worked for me so far?
[Read more about this here]
When I developed my flushing issues, it started with a few hours of flushing and burning in the evening, or when triggered. Overtime and after a disastrous IPL treatment, I flushed all over my face. Ongoing flushing is like a varicose vein issue in a way; the blood vessels dilate from flushing events, and the pressure of the extra blood flow pushes other (smaller) blood vessels to become dilated too over time. The longer this abnormal dilation and constriction goes on, the weaker the blood vessel walls become, and the easier they dilate with a new flush... So you can end up with a worse flushing problem X years down the line. There is not really a test to confirm rosacea, but doctors can do tests to rule out other flushing conditions... Face flushing can be difficult to treat.. Many say; 'just avoid your triggers'. But that can be tedious and means often avoiding a long list of everyday things, from sun exposure to bright fluorescent lights to warm rooms and so on. Food can be a trigger too, but this depends very much on each individual person. I can't eat alcohol, spices or very high histamine foods without getting inflamed, red and flushed. So no yogurt and old cheeses or tomatoes for instance. But when the flushing threshold is low, anything from stress to exertion of any kind to any emotion to warm temperatures etc can set the flushing off... This can negatively affect your private and professional life. I have been through this for a long time, and still do to a good degree, but there is certain medication that can be taken to take the pressure off the facial blood vessels. When they don't dilate as much, you won't flush as bad and the blood vessels get a chance to normalize in their functioning again. Some anti flushing medication that can really help and have been scientifically tested for flushing and hot flashes:

-Clonidine
-Propranolol (or certain other beta blockers, for instance carvedilol)
-Certain antidepressants (they calm the central nervous system)

-Antihistamines
-Anti-inflammatory medication such as plaquenil
-Soolantra for some (you can read more about this here)

My experience

I have tried pretty much every med and every treatment out there over the years, and I still haven't got things under complete control. I still have to cool my face all the time and deal with flushing and burning and redness. But it has become a bit better. At my worst, I flushed literally non stop for a year. It was unbearable. I see a London based professor, Tony Chu, who is really knowledgeable about rosacea. He prescribed me a combination of anti-flushing meds: clonidine, propranolol and mirtazapine. For mild flushers, one or the other alone can work. But I was in a constant flushing state so he threw all three at me, so to speak. To see how I responded to it. It was great, I finally could be pale again, could sleep through the night (with a small fan running) without waking flushed and in need of cold packs. I still use those meds since 2006 and still have a much better control over the flushing. I'd say 60% improvement for me. I also take a high dose antihistamine (Xyzal) because of mast cell issues (I flush from histamine release, even from someone next to me wearing perfume for instance). You can read more about this medication and the science behind it in this blog post. I keep cool and comfortable these days by using a gentle small ventilator when I work or sleep, which often can be just enough to keep the flushing in check, without causing a tornado of wind and possible rebound. I have tried mepacrine and plaquenil, which some rosacea patients have very good results with. But I couldn't handle the side effects of plaquenil, nor the dye in mepacrine.. 

I took doxycycline for 3 months and it made the redness and flushing problem worse for me.. I tried minocycline, metronidazole and azithromycin, and they all made my redness and flushing worse while I took them. I've also tried nerve pain medication (Neurontin and Lyrica and amitriptyline) which also all made my flushing worse. But this is not the case for everyone who flushes and there are quite a few good testimonials from flushers+burners out there. You can read about this HERE. So there is where I stand now, I take clonidine (0,150 mg 3 times a day), propranolol (80 mg two times a day), low dose mirtazapine (20 mg a day) and Xyzal (20 mg two times a day). There is also a cream out, Mirvaso, designed to treat the redness and flushing of rosacea subtype 1, but I would personally tread with great care there. Mirvaso often destabilizes the blood vessels more, chemically constricting them terribly and then causing explosive rebound, where the blood vessels dilate spectacularly. This can make your flushing problem much worse. It is too risky a treatment in my opinion and there are many negative reviews for this cream. Check out my own trial with Mirvaso's active ingredient brimonidine in this brimonidine blog post. And in this Mirvaso blog post, you can read an inventory of hundreds of rosacea reviews of Mirvaso. Here is part two of the Mirvaso reviews. Soolantra is another new product, a cream that kills demodex mites. I have mostly only read user reviews and success stories from people with subtype 2 rosacea and p&p's. Rarely subtype 1. But it is also an anti-inflammatory cream so it could help a little bit. I made this blog post about Soolantra and its active ingredient ivermectin. You can read more about the treatment options I have tried over the years if you scroll down in this blog post. You can also read in much more detail what I tried in the process of finding a treatment, and all the (sometimes lame and desperate) messages I posted on Rosacea Forums before and after this dreadful IPL treatment I received in this old Forum blog post. At the bottom of that post I also summarize everything I tried in the past, from acupuncture to traditional Chinese medicine and healing crystals. I wrote in 2006 on The Rosacea Forum about my anti flushing medication:


January 18, 2006
'Great meds for persistent flushers'. A Rosacea Forum post I made at the time about my progress
"Hi all, I have posted about this several times already, but do want to emphasize once more how much improvement I see (relatively) after using the following meds for about 2 months: Remeron (mirtazapine, AD), propranolol and clonidine. I'm 26 years old and have very severe vascular rosacea. In total for 7 years now, but only the last years it has been very bad. Last year I was treated wrongly with the Quantum IPL and after that I didn't stop flushing and burning for almost 9 months!!! Driving me so suicidal in thoughts, that I couldn't pass a building in the street without counting the floors (more than 8 was 'safe', suicidal wise). I was so depressed because I saw so many specialists, took almost all the available medication, but there seemed nothing to stop my neural burning, redness, inflammation and flushing. All the docs told me I was the "worst flusher they'd ever seen". Ever. Enough to drive you nuts. And I couldn't physically do anything anymore without cold air, ventilator's, cool packs etc. Just unbelievable. It was total survival; instead of living. Since being on these medication my flushing and redness have decreased. I have been taking an antidepressant called remeron (mirtazapine) for the last 2 months and it has helped IMMENSELY with not only the anxiety and depression, but also the flushing. This drug has antihistamine actions as well, which is helpful for all rosaceans. I didn't want antidepressant medication for a long time, but am so happy I did start this one. I already was on moxonidine (variation of clonidine), changed to clonidine and added propranolol, a beta-blocker. They work on different channels: a and b channels, and block adrenaline to a certain degree. They also keep your blood pressure a bit lower, which helps keeping you less flushed in your face. I still have severe vascular rosacea, for which I now see Dr. Crouch. He has made some IPL test patches, which gave me paler spots and next week we will expand the test patch area. But overall I can sit behind my computer again, do shopping, have sort of a life. I still flush and am red/pink, still need to watch what I eat and when, but this has definitely helped my flushing so far. Best wishes, N."





Skin photos taken by my hospital dermatologist in 2005






During a long car drive in the summer, pictures
taken over the day, going from pale'ish to red..


 





Pre-rosacea 















4 comments:

  1. Dear Nat,

    Life is too short to spend it dwelling on redness. Also, why in the midst of the splendor of life would you wish to yield to the mental imprisonment that is insecurity. Yes, the world overwhelms us with images that we need to have the 'perfect skin' to be happy, I put this in quotes because there is no perfect skin, but that doesn't mean we have to give in to this. I think if there is a definition of 'perfect skin', it's the skin we're in, it's ours only and we need to embrace it. Pure white skin is not perfect, in reality it's boring, to me it just shows the person hasn't lived properly. Every freckle, sun spot, broken capillary, blackhead, is a sign of a person that hasn't been afraid to live their life to it's fullest, I respect and am drawn to that. I'm not saying sun damage is desirable or admirable, but having the courage to go out into the world every day, with the fear and choosing to ignore it to fully experience life, is. I am a 30 year old man who has lived with a red nose and freckles since his teens, and I'm ashamed to say only now am I starting to make peace with my skin and love what I've got. I've wasted so much time fighting myself, that the sheer frustration drives me to accomplish things in this world. From this I've recently got married and become a father and it's been the happiest time of my life, which had I not opted to stay on the insecure, depressed, ashamed, path would have come a lot sooner. Your blog is fantastic, because it raises awareness of a serious issue in our society; the lack of redness acceptance. Everyday people need to be able to look at a person with a red face and see nothing wrong with it, otherwise we're all kidding ourselves to think that our society is heading in the right direction. What are we going to be teaching our kids ?, Oh Jack you tan so you can go out in the sun all you want, have fun. But Jill, you've got fair skin, you can't, you don't want to get the dreaded redness do you ?. So Jack grows up secure in himself, whereas Jill grows insecure, and has difficulties in relationships and in life in general because of this. I have a daughter, and I'll be damned if she grows up this way, she'll probably get redness since it's in her genes, but she's not missing out on life. In an ideal future, it's not something that she'll have to accept, because there won't be a problem with it. Global warming is increasing and white people go red, this is something the world needs to accept and embrace.

    Please don't control your life to the point where you're not enjoying it. It's fine to take care of your skin but don't obsess over it. Please take this advice from someone who's lost a decade of happiness to it.

    Peace, David.

    ReplyDelete
  2. Thanks David, what a lovely comment you wrote. I know what you mean.. things have really improved for me in that respect over the years; I no longer feel embarrassed to have a red face when I go out, I no longer feel less or uglier. But it would have been a lot easier and I would have achieved it a lot faster probably if there were more red faces out there. I understand what you are saying, I think, regarding society and the media giving us this pretext that we need to look perfect. What really made me so much less outgoing was actually the ongoing flushing. Baseline redness, which doesn't burn badly, is not ruining my life or day anymore. I actually went out last night to a party and had some alcohol for the first time in donkeys and had such a good time, and no flushing. But when I do, it's this bright red, scalding hot, face swelling type and it's impossible to ignore, it just demands instant cooling. So it is no longer the cosmetic aspect of it all, but more the physical pain, that makes me want to control my triggers.

    Have to say though that I've never been a social wunderkind and certainly not in groups and having rosacea and no way to hide it under make up in my case, magnifies all that, a lot. So I do let it dictate my life in a way. It feels like a massive heavy load for me as I need to cool all the time in order to stay pain free and keep my skin from flaring up. I find it embarrassing to drag my ventilator with me to friends, let alone people I don't know well. But it's getting better with time. I wished the world was set up for rosaceans, with cool spaces everywhere and fellow red faces all around us..
    Thanks for your comment and enjoy your lovely new life :)
    Best wishes Nat

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  3. Thanks for the prompt reply and the compliment.

    I'm glad you are learning to live with this and not stop it from you enjoying your life. As far as your comment "it would have been a lot easier and I would have achieved it faster it there were more red faces out there" as long as people like us are not condemning ourselves to a life indoors and do go out and enjoy our lives, then future rosaceans (or just people struggling with redness) will have the confidence to do the same. The more of us out there, the better the future will be, but only if we are consistent and remain positive. The mental perspective on this skin type (I purposely don't use the word 'condition' as I refuse to believe this is something that needs treating / correcting) will hopefully gradually change. I'll keep an eye on your blog and check in from time to time. I'm thinking of creating a similar site, I'm toying with the idea of "www.realrealself.com", which may sound silly but the site "realself.com" gets a lot of traffic with people searching for answers to their 'physical problems' and finding intrusive procedures and treatments. Whereas my site will be for a holistic approach to the mental problem, that have arised from people focusing on their perceived 'physical problems', and to teach them acceptance and provide support, from a non-judgemental community. Individually we are strong but together we can be indestructible, and to quote the late Michael Jackson (who had similar mental problems that resulted in his premature death), change the world and make it a better place.

    Stay beautiful and happy, all the best, David.

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  4. Inspiring reply David, I'll be very interested reading your writings in time due. Thanks for that positive contribution, very much appreciated :)

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