UPDATE: I have just changed the blog-theme, lay-out and background colours of this blog, as the old format turned out difficult to read on smartphones, but I'll need a few weeks to adapt each of the 71 blog posts here to match the new colours. So apologies for the blog STILL being difficult to read due to light pinks and greys in the text (which are now unreadable with the new light background). Am changing it all in the next weeks.
Last week I went for my annual dermatologist visit in London and also attached a few days of holiday in York and Newcastle. It was great, all in all.
Trip to London
On Wednesday I flew to London, or Lundunn. My skin had been so so that day, fairly flushy but I could keep things in check. I had noticed the dead skin build up for a few weeks already, but didn't scrub it off, because I wanted my dermatologist to see it and ask him if I should keep that dead skin layer yes or no. Seemed best to have something to show him. But it made my skin a bit more reactive by now I felt. At the airport it was majorrrrly hot, and busy. Plane had a delay so I was really red and flushed by the time I got in the plane. I had bought a special chosen seat, so that I could sit somewhere with good ventilation fans above my head. Gave me more chance of no passengers next to me, so that I could lounge about a bit with my big laptop open :) Usually the fan keeps my flushing under control during flights, but this time they hardly worked. Super faint air flow, not enough to put even a dent in the burning and flushing. Buggers! They also cranked the heating up, so it was not a great flight all in all. Buuuut not the end of the world either. I get such a puffy face from these flushing attacks though, see pictures below. Apart from the pain and sensation of being on fire. I feel like a hideous chipmunk then. It feels like very hot skin, with bad sunburn pain, like you can fry an egg on your cheeks. That pain can linger on even when the flush goes down. After arriving at London Luton, I walked around to buy an electrical adapter,then got the bus to London center. It was also tropical in the bus and took close to an hour to reach Baker street. I thought about the crazy phenomenon that if it had been 25 degrees outside they would put the air conditioning on in public transport, why in winter (it was not even cold here) they crank the heating up above 25? I took the subway then to Hammersmith, where I had booked a room in a cheap hotel. Even the hotel was hot and only had wifi in the downstairs foyer, so I quickly checked my emails and called family I made it safely, then installed my fan and showered and unpacked. The good thing was that the bed linen was clean and smell free. Smell as in; flowery chemical washing powder smell. I tend to hope for scentless bed linen. Even having the rest of my body wrapped up in perfume smelling fabric makes me flushed and inflamed in the face... I know, it's crazy. But it does. But had a rough night despite that, because the blanket they had was so thin and I had a small fan on, so quickly felt ice cold body wise (but still hot in the face, oh how warped can this condition be at times). I woke up from being chilly a lot and normally I try to not wear clothes at night because I feel they trap my body heat and make me more flushed when in bed. But now I had to. Was knackered the next day, but about to see my derm at 1:30 pm.
The place only cost me 35 pounds a night so I was happy with that, even though it took 10 minutes before the shower got warm and the tv being dead entirely. I did like that everything was off there, even the tacky paintings didn't hang straight, as if they purposely didn't give one flying f. They also had a health and the safety proof thing framed up on the wall which looked like it dated from before the 70's. Paint missing from walls, cracks, shabby, that's what you get when you want a cheap place haha, but apart from old and no proper blanket it was clean so all well. Not a problem actually and friendly staff. I had to check out at 11 am from the hotel and set the alarm clock an hour earlier, so I would have enough time to pack without stress. I could leave my bags at the hotel and went to an Hammersmith mall, for the real London experience lol. I bought some items at Boots and walked around a bit. Then I realized that I had not yet set my time back and that I had left the hotel not at 11 but at 10. Buggers, more time to kill before seeing Chu. I went to a Burger King restaurant and asked for some ice cubes ("I have a sore tooth, I can pay for them"). I have done that every day actually, also when in the train; always get a big cup full of ice cubes to suck on, it helps me stay cool and less flushed. So far everybody was so friendly and waved my offer to pay for it away, none would even accept a tip. I got my bags at the hotel and hung around a bit in the lobby, checking my emails. I had given them some of my cold packs and retrieved them. Just as I was getting my things ready to leave, one of the cleaners from the hotel came with a spray can of air freshener and started to spray the lobby in lush and abundant fashion (so that's how they do it in cheap places). Nooooo! One of my worst rosacea triggers; perfume and chemical air fresheners. I made it out of the premise with my bags hurled behind me as fast as I could and tried to not inhale. It made my face feel hot but not a big flush, lucky me :)
My dermatologist visit
carvedilol (beta blocker) and ORAL metronidazole (an antibiotic, the pill form)
Prof. Chu said that despite my vascular rosacea not responding well to tetracycline antibiotics (doxicycline/Oracea/minocycline/azythromicine etc), and it making me more red in fact, he still wanted to try one more antibiotic, which helps some of his patients, The idea behind it is that there is quite a lot of skin inflammation going on with me, stirring up the burning and flushing and of course the redness. Carvedilol he says has a specific good track record to attack some facial flushing aspects. He knew of some test groups and a specialist doing the test, where it seems to really have the potential to tackle the facial flushing. Despite me already using and being happy with propranolol, it seemed a good idea to him to try carvedilol instead for 2 months (so best to not take both carvedilol and propranolol at the same time he said). I also got a prescription for 2 months for the metronidazole. I currently take this for my flushing and it helps pretty good, but not fully, it cuts the extreme 24/7 flushing out but I still need a fan or cool air, although here are many days where I can do without the fan for a good couple of hours so every day life has become a bit more normal again if I need to go out of the house. Doctor asked me first if I had already tried moxonidine but I took it as the very first medication for some years back in 2003, and I felt it helped initially, probably by dropping blood pressure so much, but then made it all a bit worse. I prefer clonidine, by all means. He also gave me a 2 months prescription for both carvedilol and metronidazole to hand in at the pharmacy of the hospital downstairs, so I could pass by (that sounds dodgy by the way..) my Dutch GP, until it becomes more clear whether or not they make any difference for my rosacea. If so, I got some proof in the form of my 2 months trial and this doctors recommendation then.
What I already take for facial flushing and redness:
Clonidine: 0,075 mcg 3 times a day (every 8 hrs, sometimes I take up to 0,100 mcg instead)
Propranolol: 40 mg 3 times a day. (I had taken them only once at night the past year but now have upped them to normal doses this week and woahhhh, it makes a BIG difference in my redness and flushing. So back to 3 times a day for me).
Mirtazapine (remeron): 22,5 mg at night
Xyzal, 10 mg at night (update: since 2018 I take 20 mg a day)
We talked about ways to tackle facial flushing and that some of his subtype 2 patients look pretty painful on the eye, with big bumps and acne like eruptions, but that their cases tend to be easier treated than subtype 1 (vascular rosacea, with flushing and redness and burning). he said: You've got roughly 3 category of flushing patients. The first has mild rosacea and flushing; then clonidine usually does the trick and eliminates the flushing problem and after a while you can taper off the clonidine and all is well again. Then you have the difficult flushers, second group. You can add remeron and antimalarials (this doc prefers mepacrine but it's hard to get outside of the UK so others try plaquenil instead, but both have different side effect profiles; mepacrine makes your skin a bit yellow'ish long term, plaquenil can give eye burning and side effects for some) to the mix (and propranolol which falls between the first group and second, is often added first). And then there is a third group, which he called the Nightmare group and he nodded at me and said I belonged to it too, and gave some names of other patients who I know; only a few end up in this group he said and they are the toughest ones because almost none of the other anti flushing medications really eliminate the problem, well, not enough. (And the challenge is here to come up with yet other meds. to try to tackle the problem, and this professor thinks really outside the box and tries all sorts of meds, but because they are tailored to each different patient 'case', I don't think it's wise to start mentioning them here, they are usually the meds you want to leave for the last straw moment, like immune suppressors and other anti inflammatories). He saw a chap (he never gives names or personal descriptions of people btw) who couldn't even sit down, always stood up in the waiting room,as sitting would make him too flushed. Nightmare stuff indeed and I have had this too, especially in the terrible year 2005. For this group he tries to think further outside the box, to find medications which do put a proper dent to the flushing. Nose and ear flushing are also notoriously tough to tackle with medication.
I asked for a friend, who had his rosacea badlydeteriorated after a bad IPL treatment, what options he had left to get rid of pink marks and scars and (nose) flushing. He replied; pulsed dye laser most likely, for fixed redness. I destroys abnormal blood vessels. IPL is notorious for being whimsical and having the potential to cause a ton of unwanted skin effects, from scars to increased flushing and other unpredictable outcomes. He didn't sound too positive about it. I also asked if demodex mites could be at play in my rosacea. he said NO. He absolutely sees no proof for the whole demodex theory and certainly not for vascular rosacea (transient redness and flushing without the p&p's). I asked about my dry skin, and whether or not he thought it better for me to leave it alone like I have done since 2004, or start trying moisturizers again to combat the dryness. Prof. Chu said that even in people with normal skin, extreme dry skin gets red and scaly. So ideally, you find a moisturizer your rosacea tolerates. But, there lies the whole problem; often rosacea skin gets so intolerable to everything, that it can be a massive problem to find a cream your skin accepts. If it makes your rosacea worse, you are better off not using it. I asked about my dead skin build up: that I feel it leaves a protective layer on the skin, but that soon it gets clogged and fatty and p&p's form under it and it seems to make my rosacea worse. If it's best to leave it or clean it and if so, how often? He said that it definitely needs OFF. That such a layer of dead skin cells gives all sorts of skin issues by itself. That rosacea skin and mine certainly is compromised already and does not have normal skin function. Normally skin cells renew and fall off naturally, mine don't and just keep building up. That happens more often in rosacea skin. No normal skin shedding. This dead skin build up needs properly cleaned off he said. I have to say that I cleaned my skin properly after the make up experiment )scroll down for that one) and skin looks smooth and fine now. Better than before I took the skin layer off.
|This was my cold urticaria 2 years ago|
Trip to York
York is so pretty! Adorable really. Initially I only saw some things on the ride through town, and it was dark when I arrived. But the way the old buildings and walls were lit up was very nice. During the day, the gloomy weather gave it all a veil of sadness but I can imagine what it must look like on a sunny spring day. On the other hand, between the cute shops and old wooden houses, there was also a lot of mainstream commercialism and shopping streets.. From a distance I made this mythical life in England where everything is roses and butterflies. But of course life is relatively mundane everywhere, and the websites and tourist flyers only show the highlights and when you walk around you see the murk and muddle and the rest. Like Barcelona was a bit of a mess actually, especially all the suburbs leading to it and then you have a center where the cars drive everywhere, tourists are everywhere and it's not as grand as you'd imagine. Comforting too in a way, commercialism didn't only ruin my country but also the rest of the world. Anyway, not sure where I'm going here. Also spoke with a cap driver from Newcastle, nice older man who went away in the late 70's due to the unions and strikes, he was a ship builder and got sick of electricity falling out so often due to strikes and work coming to a standstill all the time, he said. Then the rest of his life's story followed including suicide of his best mate, all in ten minutes. Friendly people! When I said I went to London first he responded; "Dirty shithole, you must be glad to be away from there and be up north." Dutch people can give you strange looks when you just start chatting to them out of the blue, here they seem to do it spontaneously themselves, a punk type of chap saw me doubting about what train to go to at Kings cross because it didn't indicate in front of the trains where they went to, and asked where I had to go to and walked me around to the right track, you won't have that happening very soon in Holland. Went to the supermarket and they were closing but friendly person let me in anyway, On you go, quick! They have amazing accents here, I lingered for a while in the aisles to hear a girl talk on the phone, very heavy accent which I liked. It was pretty cold, I'd say around 5 degrees, which I liked as I didn't have much flushing when out and about.
Sweet B&B in York. I had a small single room but paid around 90 pounds for 3 nights, so that was not bad I reckoned. I could take the bus to the city center which took only about 7 minutes to get there. The problem with the room and the B&B was that mine had a separate toilet and shower in the hallway, which was a flight of stairs down. But in the hallway they had plugged in a chemical air freshener device. It made me red and so at night I tried a Mission Impossible action and sneaked down to unplug the thing. Or more precise; switch off the electricity button. Hoped they didn't have CCTV camera's :) I thought it would have been spotted and switched back on by the cleaner the next morning, but it wasn't! Has stayed off all my stay and I soon could move around more problem free. Oh the little acts of anarchy (or was that an act of madness haha). I spent a staggering 300 euro in the first 3 days and I can't even recall half of the things I used it for. It's shocking, everything is expensive, their pound prizes are our euro prices and I only got 180 or so pounds for my 300 euro at the bank. So pricey indeed but it was worth the joy. I spent the Friday in York and met with a lovely girl who is also a rosacea forum member and we write on social media together. Had some drinks and chats and a walk through town and it was lovely.
There was a ghost tour that night in York, I'd have liked to join it, sure they would have mentioned the Yorkshire ripper but would have been too much all. I noticed York being mentioned a lot in those Hilary Mantel audio books I listen, about Thomas Cromwell and the Tudors, I don't know enough about it though, would have liked a historical tour. Perhaps pictures would have been nicer as well, when taken at night, with those yellow lights on the buildings but alas, another time. Is a shame in a way that I've seen so many cathedrals and churches, often under obligation during studies or at holidays, Rheims, Chartres, big ones built to impress, so the whole wow factor I miss nowadays, beaten dead almost with churches, but it was beautiful, for sure. And so much food everywhere.. geez.. People eating fish and chips in the middle of the street, haven't tasted any of it!
On Saturday I spent a day and evening in Newcastle, which was just great. I loved the industrial yet spacious and chic feel of the city, the river and bridges, the little streets with bars and museums and galleries. I had put make up on this day! Felt time to redo the make up experiment. I still had not scrubbed my face properly but I felt this dead skin layer would serve as a nice barrier for the make up. Downside was that you could see it being applied very well from close by, it was like a zombie almost. But from some distance, it covered all the redness, yay!! And better; it didn't make me flush or burn. I stepped in the train at 11 am and I had got myself a cup of ice cubes. I kept checking my face. I'll upload a bunch of pictures I made haha. Because I so rarely wear make up, I felt I had to make the most of it documentation wise hehe. Because the make up was very visible in day light, I wished it was already evening, in a way. But luckily many women had heavy make up on in the streets of Newcastle, sometimes even orange colored. I was on the lookout and sight seeing for Geordie Shore people, so to speak; that tv series I like. But as I wrote, my face was handling the make up well. Only my right cheek burned a little bit, but it had already been the flushed one that morning so it was no surprise. Went to the Sage, a big silver colored massive building at the water (it's also in one of my pictures) where there are galleries and it has free entrance. There were a few rooms with art which was experimental and contemporary and not necessarily my style, but nevertheless interesting to see. At the top floor there was a panorama desk, and watched the skyline of Newcastle and my host told me things about the buildings and we talked a bit about other cities. Regardless, all I could think there was; damned they will see the badly applied make up even better now with this bright light.
Then went to the Laing art gallery which had very nice paintings inside, and first showed a small exhibition of old photographs from Vivian Leigh, from Gone with the Wind. That was amazing, I love old Hollywood starlets and photography. This double portrait of her was one of my favorites on show. I felt that Vivian Leigh had a sulking and bitter look often, despite her beauty. She was of course depressed at times and had dependency issues, alcoholism I think. Some people have everything but still are miserable it seems. There were also nice classicist paintings and modern ones, and a selection of large drawings, all from old buildings in Newcastle from a century ago. Walked past the river and made some pictures and walked further, saw the city center and ate pub food, niiiice. I had been eating nothing but apples the 3 days prior. No exaggeration. Was so afraid I would be flushed and burned up on my trip in England. So by now I was really hungry and had a plain hamburger and fries and salad. Yumm. In the bar it was warm. I had gotten a bit flushed by the way from the walk to the museum as it is quite steep hilly in Newcastle and I had a backpack with about 8 kilo in it, but on inspection my make up proved to still block every redness from view :)
Sunday I spent a couple of hours in York and to avoid being out on the street at 10 am which was the check out time, I booked another night. I had to catch the train to London at 5 om and could laze around most of the day therefore. It was lovely in York, many people were out and about in town, I got myself another ultra lovely smoothy, one I also already drank with the rosacea friend on Friday. You could pick fruits and vegetables of choice and they juiced them for you. I had a mix of apple, carrot, broccoli, sellery and yellow peppers. So nice. Got myself another one and passed a sushi restaurant where I bought some sushi for in the train (rolls with tuna and rolls with shrimp and mayonaise, yesss not good but a Dutchie loves mayonaise, just ask Quentin Tarantino). And I had been eating apples for so long, needed some proper food. The smoothy place also had a lot of gluten free sweet snacks and I bought some brownies and delicious white chocolate and raspberry cake. Was munching contently and walking through town, then got back to the B&B to do some cleaning, switch the air freshener back on on my way out (yes, eye for detail) and up to London again it was. I was a bit sad to leave! Especially Newcastle I loved and would have liked to do some historical tours there to find out more about the city. I had cleansed my face from the layers and layers of make up (I used La Roche Posay again, like the last time), with the La Roche Posay cleansing milk for sensitive skin. It worked great! Far less scrubbing of my cheeks, far less of a stripped acid peeled skin texture afterwards. I made sure I got all the make up off first, then wiped my face clean another time with bottled water on cotton pads, to also clean the make up remover itself and the next day, I wasn't thát red! See the picture here. I did go to bed sort of red, but not as bad as expected and it also didn't burn that much. I had no cold packs either to help out, just a small fan.
These 2 pics were taken on Sunday at 5 pm, so about 17 hours after removing the make up. Quiet good! It was cold though and that kept me unflushed. I had asked for ice cubes again at Burger King and gotten them, but this time the train ride to London did make me flushed. Although I also ate the sushi and remaining gluten free sugary (buttery) treats during that train ride! I contribute the flush more to those foods therefore. I notice a massive difference in my skin when I keep from sugary and bad foods and stick to a healthy diet btw. It's a big big big difference in redness burning and flushing for me. So these pics are all make up free again, with exception of mascara and eyeliner which I kept on. I also don't use a moisturizer on my skin.
In London it was close to darkness already and I had to go to Liverpool Street station, then take the Stansted airport express train to my little B&B lodge close by the airport. I was flushed by then and red. But knowing the make up experiment and bad food were just behind me, I just tried to suck on ice cubes and stay calm and know that once in the B&B, I would be able to cool with my fan. All the cold packs I had were already soft and warm by then. Despite all that, I got the most heart warming welcome in the B&B by a big Polish dude called Marek. A man in his 50's, if not older, fully over the top but funny, very thick Slavic accent; "You lady, I like you. You look Polish, you have such a pretty friendly face". Me: Thank you. "No nono, never say thank you, ladies in Poland, don't say thank you to a compliment. Because why would they? It would mean compliment is opinion and it is fact, you must it see as fact, you ARE a nice lady, No thank you." Said thank you a couple of times more without realizing it, he made dramatic rolling eyes to the ceiling and explained it another 3 times, but I got the en suite double bedroom instead of small single so that was nice. "Here lady, this is my mobile number, you can call any hour of night, this is number for emergencies or anything else, I never pick up phone though". Hehe. But his goodwill helped me later in the evening, when my fan burned a fuse or something; it gave a burning smell and stopped working! Very bad timing. As I was still pretty red and sore from the long hours in the trains. Not this night.. So I went back to the check in desk and asked Marek if he had a fan by any chance. I said I needed it because I had a little laser treatment on my skin and had to cool it now (I know.. it just felt too outrageously mad to not give some reason for the use of a fan in mid winter in England). He didn't give me strange looks or double checked it, just sad: "Yes lady, you need fan, Marek will get you fan." So nice. So he rumbled around behind the house and came back with a small fan, I was all happy and gave him the kiss on his cheek which he pointed at ( I know, I know, bordering on dodgy but I was in a jolly mood by then). Low and behold, the fan didn't work when back in my room!
So I went back again and Marek started to call around out of his own initiative. "Yes, Marek here, listen, I need fan. No an electric fan, for cool air. Yes, it's very important, don't need ask for why, just believe me, is very important." So sweet. It turned out difficult to find a fan in the neighborhood (mind you it was 1 degree outside! Mid February!) but I had a golden impulse and tried the fan he gave me one more time, now swinging the blade with my hands to see if I could get it started and yesss, all it needed was a push from magic hands. All was fine again. The next morning I flew to Eindhoven, and it was mayhem on Stansted airport. It seemed that everybody wanted to flee out of London at the same time. I was almost too late and then the plane had an hour and a half of delay. Had to spend 3 more hours in a train to make it up north. Below my skin as it looked all throughout the trip and then with La Roche Posay Toleriane foundation make-up on.
(Getting half of the make up off my face)
And some pictures of my red face in the days before and after the make-up use (I get redder in the first couple of days, probably because I had to scrub my face so much to get the thick make-up off!). Days before make-up use:
Day 2 & 3 after make-up use