05 October, 2016

Ongoing post, Update day to day life III, June 4th 2016 - now


October 23nd 2016

I feel such a mug because the inhalation spray I mentioned before, Tilade, worked so well initially. Lungs less sore but also, I was a lot less red while using it. But stupid rebound seems to hit me again :/ After a while of using it twice daily, I felt I needed more and more of it, or else I'd turn very red once the half life was exceeded too much and it stopped working. I assume it was some sort of rebound. I am a severe flusher and even a sneeze attack makes me all red, so as I write often, this isn't how everybody with rosacea will/would respond to Tilade most likely. Besides, it's not aimed at rosacea, I just noticed a pale skin while taking it for lung inflammation.

So.. I used it a full month. And within the 3rd week I started notiding that about 6 or so hours after using the inhaler, I had what felt like a weird rebound flaring, flushing and burning?? All red! I stopped the inhaler, had 4 days of allround terrible burned up skin, cancelled all my going out plans and grumped it out. Then it subsided a bit, and I restarted that Tilade puffer, just to see if it really was the inhaler in my case. And the same thing happened. Pale that afternoon (yesss!), then super red after not snorting the next dose. Now I've got the flu and a nose cold so my lungs back to where they were at the start of all this. And the weather change and cold temperatures have blown up my rosacea once more, so am being sick, with a red flared face. Awful week, my skin hates the cold weather. 

I try to have the indoor heating on a little bit, 16 or 17 degrees, and have my skin adapted to tepid (is that a word for this?) temperatures. The changes from cold to warm to cold temperatures have always been a trigger for my rosacea, and with everybody else out there having their heating on already too now, I want to avoid the Warm Room Flush Syndrome.

I also try to keep my indoor air a bit humid, around 60%, so my skin doesn't dry out too much. Someone emailed me about tips for erythromelalgia-related rosacea symptoms, I'll share them later. A London city IPL practice and another one from the mainland contacted me about advertisement options but I can't really do that on here, as I have had mostly trouble from IPL myself. Yes, it works for many others, but never has for me and a close friend of mine was dealt with scars from IPL, so no promoting from me.

I made sure that I didn't use a steroid, but am starting to wonder now if this spray might work in the same manner as a steroid after all? Given how badly my face is flared now and it's very hard to calm my skin down at the moment. Info I found online says it doesn't:

How does Tilade work?

Tilade inhaler 2mg (CFC-Free) contains nedocromil sodium which is a non-steroidal agent, with anti-inflammatory properties, that reduces inflammation by a mechanism that is different to asthma medications containing corticosteroid. Tilade inhaler works directly on the airway walls to reduce inflammatory reactions, by Inhibiting the activation of several inflammatory cells (such as macrophages and mast cells) at the site of inflammation in the lungs and preventing them releasing chemicals (like histamine, prostaglandin and leukotrienes) that mediate the inflammatory process. The overall effect is to dampen down the inflammatory process in the airways, reducing irritation and swelling to improve airflow into the lungs. This helps to prevent symptoms of asthma caused by swollen and inflamed airways, like wheezing, cough, tightness of the chest and shortness of breath. It does not relieve bronchospasm which happens during an asthma attack and needs a “reliever” medication to open the airways. 

Or maybe it's just the cold and the flu causing this flare.. Maybe the Tilade was great at blunting inflammation and histamine-release, and I just need to start using it again.. I don't know right now. Think I'll try to do nothing but use my regular regime of anti flushing medication and wait till my skin is more stable again, before reintroducing the inhaler. I don't want to make things even more messy and murky. Change one thing at a time, is the rule. When you deteriorate, stop the thing you introduced earlier..

Ugh, I hate winter coming already.


October 3rd 2016

Using an non-steroid asthma inhaler, Tilade, which makes my face a bit more pale

My skin has been a bit calm lately and it happened by surprise. I added something specific to my medications to help me treat my lungs, but it also seems to help my skin :)      
I've had my first ever bronchitis episode at the start of the year, that lingered on for a long time. Eventually, after different courses of antibiotics, things normalized again, but not entirely. I kept having a pressure feeling on my chest and some faint pains. Never had any lung problems before in my life, and when I went back to the GP, he said it could be some lingering inflammation. A corticosteroid inhaler would help me he thought, but I didn't dare to use it.. It might not be a problem for my rosacea after all, but I don't dare to try it and take the risk.. Reason being: my London derm advised me to avoid it if possible, as my whole skin issue started with the short term use of a steroid cream (coupled with stress and stopping my birth control pills overnight). I react so strong to steroids, either in sprays or creams, that in my personal case, he said it might be best to not risk triggering things again. Some patients he/I know used to have rosacea under control, only for it to flare right back up after something as simple as a steroid nasal decongestant spray. That's not to say that steroids will always do that to everyone, or that they aren't necessary in some cases, even for people with rosacea, who deal with additional health problems like asthma ( I don't have asthma!) or whatever else you might really need corticosteroids for. But given how serious my skin flushing and burning has been, and often still is, I personally decided to always look for an alternative if possible. 

Pictures left without Tilade (earlier pictures), right with (pretty much never wear make-up and old camera that doesn't have filters)

Without Tilade
So we waited in the spring to see if my body would clean up the inflammation by itself. But this summer I still had lung pain. Three weeks ago I had an X ray done (see pics. The top left white fields is from a lead apron lol. Bit over the top perhaps, but I had asked if I could wrap it around my cheeks.. This, because X rays in the past flared up my rosacea for weeks). The x-ray showed areas of lingering inflammation still, especially in the lower parts and sides of the lungs. Not pneumonia or anything, but the specialist said she'd call it bronchitis still. Inflammation, for sure. 


I went back to my GP who said it might be good to prescribe something to tackle the inflammation now, as 9 months is a long time to have this. Problem was that he would still suggest a corticosteroid inhaler. And didn't know non steroid alternatives. My dear friend Emma had helped me over time to read up on the topic and had come up with a handful of non-steroidal alternatives.


*Singulair (montelukast) or alternatives are zafirlukast and Zileuton (Zyflo); Leukotriene modifiers, that treat inflammation in the lungs. These medications block the action of chemicals called leukotrienes, which occur in white blood cells and may cause inflammation and narrowing of the airways.)

*Cromolyn sodium (Intal®)
  Nedocromil sodium (Tilade®) (info(Cromolyn and Nedocromil sodium are in the same class and "nonsteroidal anti-inflammatory agents" which stabilize mast cells (linked to allergies). They reduce the release of histamine and reduce inflammation (by reducing the total number of eosinophils). My doctor chose Nedocromil for me, brand name; Tilade.)

*Theophylline (has some anti inflammatory effects)

*Magnesium sulfate nebulization (info)

*Omalizumab (Xolair) - is a long-term asthma control medicine for people with allergies, that works by binding to one of the antibodies that trigger allergic asthma attacks. It prevents IgE from triggering the inflammatory events that lead to asthmatic attacks).

By the way, Cromolyn is also used sometimes in creams to put on the skin if people with rosacea. I never tried this as I don't put creams on my skin as it all burns me too much, but here and here are some links that show that putting cromolyn solution on rosacea skin, reduces some of the redness. Dr. Gallo also did research about the topical use of nedocromil and cromolyn on rosacea skin and it resulted in reduced redness. Here is a link to his study. 

I have been given both Singulair pills and Tilade (nedocromil sodium) inhaler by my doctors. I had brought information with me about their effect on inflammation in the lungs, as the GP said he didn't know of alternatives for corticosteroids. After reading up a bit in them, doctors were willing to let me try it, as they knows I have a long history of rosacea problems and flaring, and I usually am extra red in the doctors office (heat, stress, waiting etc).

Singulair came with a special warning leaflet, stating this medication is known to increase the risk of anxiety, depression and suicide. I use an antidepressant at a low dose (remeron, 22,5 mg a day) for my facial flushing control, so I didn't think I would be particularly susceptible to these side effects. I googled them a bit online and saw a lot of complaints, but also people who used it long term and found that it helped a lot with their asthma/lung inflammation. And on top, on The Rosacea Forum, some people also mentioned how Singular helped with their rosacea symptoms. I took it for 6 days, and I probably had the placebo effect, I really wished I never heard about those specific side effects in advance, because it's hard now to pinpoint if I imagined them or not, but low and behold, I started to feel nervous and jittery after a few days of use :/ It wasn't depression, nor suicidal (as the leaflet had warned for too), but who knows what the anxiety could result in weeks, month down the line? I really didn't like the twitchy restlessness and anxiety. It's hard enough dealing with a red hot face that can start to burn at dozens of triggers every day without added anxiety. So after about 6 days I stopped the Singulair and started Tilade. I didn't start both at the same time as I wanted to be sure what medication had what effect. Sometimes when I introduce something new, it can flare my face. But when you start 2 new things at the same time, you'll never really know what does what.

Anyone, long story short; the Tilade is fantastic! The first days I like felt my throat swelled up a little bit in the hours after inhaling it and it made me a bit more short of breath, but that stopped by now. And within about 3 days, I felt I wasn't as red and flushed as normal. Complete surprise, as this inhaler is only supposed to treat inflammation in the lungs (which is where you inhale the spray into). It's been over 2 weeks now that I've used it and I still am more pale. I can go red and flushed still (hot showers for too long, stress, certain foods, the sun/heat) but when I skip my triggers, my skin seems more pale than normal. I told my GP about it and sent her a picture of my skin and she was happily surprised and said she is glad to prescribe it to me a bit longer. It doesn't have side effects for me, it's an older and safe medication, also given to children with lung inflammation (and an alternative in this to corticosteroids). I'll add some pictures below, some with my normal redness on a not so good day and some from yesterday:

First days using Tilade

A week into using Tilade

Pictures far left without Tilade (earlier pictures), right while using it 

Picture far far left without Tilade (earlier pictures), right while using it

Lot of pictures, sorry, but I'm so surprised and happy with the paler skin.. Of course, things that work one moment might stop working the other. I had that happening before with neurontin and diclofenac. but who knows, the Tilade might help me with the skin redness, burning and flushing in the long run. Although I'm still not 100% sure that the two are related. It looks that way though. I'd never thought a local acting lung inhaler would have an effect on facial skin, but maybe it does.. 

I've been trying to find some explanations online of the effects of nedocromil sodium on rosacea skin. 

Although there have been trials done where it is applied topically on skin, I didn't find direct evidence of the inhaler being linked to rosacea treatment. However, Tilade inhibits mast cell activity, and there is information to be found online about how inhibiting mast cell activity in itself might improve inflammation in individuals with rosacea.

This follows a previous study, funded by the National Rosacea Society, that suggests that mast cells located between the vascular system and the nervous system are the key to triggering the inflammation seen in rosacea. And that mast cell numbers are increased in the skin of rosacea patients. The study found that the mast cell proteases recruit other immune cells, thereby amplifying the inflammatory response.

"A team led by Dr. Anna DiNardo, associate professor of medicine of the University of California-San Diego, found that mast cells play a direct role in the activation of certain types of cathelicidins, an enzyme involved in the innate immune response that is over-produced in people with rosacea. Studying the process in mice, Dr. DiNardo's team determined that when exposed to a neuropeptide called PACAP, mast cells produce enzymes that trigger the production of cathelicidins. In mice bred to lack mast cells, this chain reaction did not occur."

In this blog post, a blogger looks into the link between rosacea and mast cells and histamine, and came to the conclusion that the two are related. 

She wrote: "A study in the Journal of Investigative Dermatology, funded by a research grant from the National Rosacea Society, revealed that mast cell numbers are increased in the skin of rosacea patients. The study found that the mast cell proteases recruit other immune cells, thereby amplifying the inflammatory response. Demodex skin mites have also been shown to play a role in rosacea, by triggering the inflammatory response or blocking hair follicles. And that’s a great point I should elaborate on. The presence of these mites could be the actual mast cell trigger. Having rosacea therefore doesn’t necessarily mean that you have an actual mast cell disorder.
This is something I had to wrap my head around just last year. That some of us with histamine/mast cell symptoms, are experiencing them as a result of a primary issue, like mites on our skin, a bacterial or viral infection, rather than us having an actual mast cell disorder that is causing the rosacea symptoms."

As an aside here, Demodex mites can play a role in subtype 2 rosacea, and possibly in some cases of subtype 1. But there is still little known about this and a new cream called Soolantra has been out for a little while now (killing demodex mites) and seems to work very well for subtype 2 and for some cases of subtype 1. I asked my dermatologists about my own rosacea and whether or not they think I could have a demodex problem. They all said they don't think so. That they see demodex mainly being a problem with acne-like subtype 2 cases. But, it's a new field of research and nothing can be said with certainty about this.

The blogger highlighted that a study recently proved that mast cells ("the pesky little buggers that house histamine in the body") are a key culprit in causing eczema. It was also discovered that a protein called STAT5 plays an important role, as it can trigger major mast cell increases. Blocking STAT5, which along with histamine, lives in our mast cells, might not just prove important in the battle against eczema, but also in beating rosacea.

She also gave some valuable tips on how to deal with rosacea symptoms, looking at it from the perspective of rosacea being a histamine intolerance and mast cell activation disorder. She mentioned:

*Meditation and yoga
Meditation and yoga have both been shown to switch off/dampen genes related to mast cell/histamine disorders, as well as inflammation generally.

Mast cell stabilizers and vitamin D.

Bioflavonoids like quercetin and luteolin, shown to be as effective as the commonly prescribed mast cell stabilizer sodium cromolyn. Quercetin is a mast cell stabilizing bioflavonoid, which prevents histamine release and is beneficial in the treatment of skin conditions. Many people over the years here have experienced improvement with it. This is another interesting thread on The Rosacea Forum about the use of quercetin for rosacea redness and flaring.

You can also find bioflavonoids in most brightly coloured plant foods. Vitamin D, usually a good bet for those with immune system conditions, including rosacea. Another study funded by the NRS focused on the role of vitamin D enhancing the production of human antimicrobial peptides cathelicidins (LL-37). These beneficial peptides, which normally help prevent inflammation, are “abnormally processed” in rosacea folks.

Given that the bioflavonoids quercetin and luteolin are found in plant foods, why not eat the plants, whether or not you’re taking supplements or medication? In this blogsters case, she decided that nothing goes in her mouth unless it treats her. Here is the blogsters histamine food list and here are results of a Fasting Mimicking Diet. 

*Examine your beauty routine
"It might surprise you to learn that many common beauty ingredients are mast cell/histamine triggers. They’re too numerous to mention here, but I’ve found that almost all commercially available brands have these ingredients, as well as those that disrupt the endocrine system (more on that on the EWG website). The great news is that newer, truly natural brands like 100% Pure and RMS Beauty offer very stylish alternatives. To sum it up – if you can buy it at a generic store, it’s likely to cause problems. The aforementioned brands contain more natural ingredients, some of which actually possess antihistamine and anti-inflammatory ingredients like (real) moringa and coconut oil. You’ll find a full list of healing cosmetic products in the low histamine beauty book linked below."

It is always a good idea to see if you have food triggers. Also, there are many people with rosacea and other auto immune diseases who have good results with high nutrient anti-inflammatory diets. Don't underestimate the ways in which foods can help or further deteriorate your health issues. 

One of the tips from the blogster was to try out mast cell stabilizers. Could Tilade be a mast cell stabilizer and therefore helping my skin? Even though it isn't applied topically? How much of it comes through the lungs tissues into my blood and could get to such levels that it might (?) affect my facial skin and blood vessels?

And what are mast cells anyway? 

The blogster I found did a great job in explaining this:

"Mast cells are kind of the army barracks where histamine and others live. When our body’s in trouble, mast cells open their doors, allowing histamine and other inflammatory elements to be released in order to get to the site of an injury or infection, to get the healing process started. In addition to histamine, a number of other inflammatory molecules are synthesized, among them are interleukin and prostaglandins. These are all great things to have at our disposal, when they’re released, as needed, in order to help us heal.

The problem arises when some of us have too many of these mast cells, or unstable ones (you mean working in war zones affected my mast cells? Who knew?!), or just have too much histamine in the body because of a lack of histamine-lowering enzymes like DAO and HNMT. This leads to massive inflammation throughout the body, pain and misery, and undoubtedly years of misdiagnosis as doctors scramble to keep up with a never ending list of complaints.

Why are mast cell disorders so hard to diagnose? Mast cells are found in every organ system in the body – so yeah, we get a helluva lotta symptoms, usually rotating every couple of months (just to throw a monkey wrench in the works ya know?), and most docs have no clue what it’s all about."

How can nedocromil sodium help rosacea? 

I theorize here, because all I know is that my skin has been less red and burned up ever since I started the Tilade lung inhaler 2 weeks ago. Tilade is said to stabilize mast cells (linked to allergies) and reduce the release of histamine and reduce inflammation (by reducing the total number of eosinophils).
"It is not fully understood how nedocromil prevents inflammation, but it is thought to work by preventing the release of inflammatory chemicals from cells called mast cells.

Mast cells are cells in the immune system that become sensitised in response to foreign particles, or allergens. When this happens, they release chemicals, including histamine, that go on to cause inflammation as part of the body’s allergic response."

A trial with eczema patients who took nedocromil sodium orally (I assume in pill form) showed no effect compared to placebo on the eczema skin condition. Scientists did find that when it was applied onto the skin, nedocromil sodium helped to inhibit itch and skin flaring. 
I can't find studies about the effects of nedocromil sodium or cromolyn on skin issues when these drugs are inhaled. I did read that inhaled corticosteroids can in fact enter the blood stream, but in small doses. 

"When breathed in, some steroid medicine remains in the mouth and can be swallowed into the stomach and from there absorbed into the bloodstream. [..] Also, when given in very large doses (many puffs from a high-concentration steroid inhaler), the amount of steroid medicine that spills over into the bloodstream can become significant."

Nedocromil sodium reduces mast cell release, histamine and eosinophils (and thereby lowers inflammation). 

With rosacea, there are increased numbers of mast cells in the skin, located between the vascular system and the nervous system, that trigger the production of cathelicidins and thereby inflammation.

It makes sense that any medication (or supplement) that can reduce the mast cell release, could in theory reduce the inflammation seen in rosacea skin. I don't understand how (and if) Tilade could help here, as it is an inhaler that works on the lungs, but who knows. For now I enjoy the reduced skin flares and have my fingers crossed that the effect doesn't wear off too quickly. I might have to wait on an upcoming study:

"In their next study, also supported by an NRS research grant, Dr. Di Nardo’s team will determine whether use of a mast cell stabilizer known as cromolyn sodium will decrease symptoms of rosacea. In addition, they will test to see if levels of the enzymes tryptase and chromotryptase -- typically higher in rosacea patients -- revert to normal after application of the mast cell stabilizer, and which of the enzymes is more important in the process. These enzymes are believed to also play a role in the inflammatory process."

Some more info on newer, non steroid treatments for asthmatic inflammation:  
"Of non-steroidal agents that have well-established positions in asthma treatment, nedocromil and cromolyn possess significant anti-inflammatory effects, and theophylline and beta agonists possess some anti-inflammatory effects of potential relevance to asthma. In addition, there are a number of newer or alternative therapies that have theorized or demonstrated anti-inflammatory effects in asthma, including leukotriene modifier agents, anti-IgE, gold, nebulized lidocaine, cyclosporine, intravenous immunoglobulin, methotrexate, hydroxychloroquine, dapsone, and troleandomycin."

And some anti inflammatory supplements I want to try out soon,

The summer months have been OK, but quite hot. I couldn't go out swimming or joining friends on pick nicks too much and have been hibernating more days than not, which wasn't great fun tbh. It did give me more time to finish work and procrastinate, of which I will show off some results below.

Portugal has its first drone! They'll regret all their evil ways in the Middle east soon :) Portugal is coming for you!

I found some nostalgia pictures from the good old days. I have this interest in the 1950s, and not just in the USA (I'm Dutch btw), but the American 50s were kind of an archetype for us of the good life I guess. Back in the days when America had a strong middle class, when one dad could support his family, buy a house and a car one one income - a job he kept all of his life typically. There's something about these pictures that really attracts me.

Aside from the beauty of the composition and the colors, I guess I love the feel it gives me about simple life those days. This 'Road Closed' picture was taken in New York, 1958. St. Lawrence Seaway. I see a family in the forefront, dad wearing the archetypal white t-shirt. Mother has a typical 50s jump-/bathing suit on. Neat pony tale. The cars I find personally wonderful. The minty colors, the details, the class they ooze, the craftmanship that went into making them. The road is closed. Force majeure. There were no smart phones, no mobile news updates. You stood there and scratched your head.. went for a swim instead. What else could you do? Enjoy the moment, those moments that would later make up strong stories. The unexpected deviation of habit that turned out in quite a swell afternoon after the first confusion.

It really feels like they’re having fun, doesn’t it? I remember as a kid that my family and I would go camping each summer. Mobile phones existed, but no one had them. Even if they did, mobile phones in our childhood did nothing more than calls. You had a flashlight or a lantern if you wanted to read after the sun went down. The excitement of piling everything in the car, the drive to the campground. Your biggest concern was mosquitoes!

Which is what I see happening in this photo from 1958. No doubt the father in the white shirt was stoic if not a touch dour. “I said get your shoes on, goddamnit!” Yet there is no rancor in his voice. He’s smoking a cigarette and enjoying time with his family where he’s not worried about hippies or work or even that *&# Eisenhower. It is an adventure for his wife and children. When I see photos like this, it creates a feeling that life was good. Even if he might turn into some wife beater an hour late. At that moment though, life seemed good.

It might be a generation thing, but to me, seeing scenes like this one:

people seem forlorn at times now. Always in contact with everybody, every twitch needs to be shared to all your friends. Every ping requires an answer. Yet the people in these pictures might have been happier, with a depth of substance that just isn’t captured on Instagram. Less choices too in life, but not everybody is happy with endless choices. It isn’t digital photography versus film, or high-resolution versus standard definition. It is almost as if these people lacked a constant and inherent awareness of the fact that they are being or may be captured in an instant with photography. They seem more genuine for this. Either they take the opportunity of a photo being taken as something special, where you wanted to look your best for, or you see pictures where people do their everyday things and aren't at all aware of the concept of being shot like that. As photo cameras were not part of the everyday street scene yet. People being recorded in a snapshot. Our lives and social media presences seem fake in comparison, manufactured just to be seen.

I also wonder sometimes if the landscapes of our worlds, our individual countries, have changed a lot with the advancing decades. In the 1950's pictures, there seemed an order and sense of belonging to things. Things had their place. Stores that were run by family generations and were part of the community, instead of being placed strategically and solely to make money from an ever passing and changing stream of commuters. Now, everything seems to exists merely to generate revenue. A society of convenience, that thrives on change, instead of consistency. I like things to not change as much. For things to have a place. I prefer the same cafe that has been there for 50 years over the latest Starbucks. Because it never just stops there. Every self respecting small city needs, then, next, to have six Starbuckses! Because here the "Let's pay 5€ for some shitty starbucks latte plus a table to write my next movie script culture" has also landed... No match for the places where men with dirty fingernails eat fresh herring and drink beer to watch the football match. But who knows if those places will still be here, ten, twenty years down the line?

Binmen no longer exist today. They have shining badges with 'Environmental Manager' printed on it. That's lovely, it sounds important. You can call a ditch-digger a ‘dirt-relocation engineer’. At some point it became a slur to be a binman, after all, or to make sandwiches at Subway. You call them a sandwich ‘artist’ and slap a bandage on any potential wounded pride. That's the 21st century for us. But no matter how important they make the job-titles sound, it never-ever-ever translates to an increase in pay.

It's a shame in a way that everything that can, also will be recorded these days. In large quantities. For some people, it degrades having quality memories. Back in the days, you needed to make choices and selections. You had one film roll, maybe 2, you couldn't picture every meal. You saved your photos for the highlights. You used to take photos and keep them in boxes, or take the time to add them to albums. They were precious because they were limited and fragile. You watched them and wished there were more. But there were usually just enough. Family photos were considered among the greatest treasures a family could possess (well, for the well to do and middle classes at least, over here). The loss of them was a genuine tragedy in a fire or flood. Now, you add them to Instagram or Dropbox forever. Certainly more convenient, and it does prevent such tragedies. Yet we seem to appreciate them less perhaps?

I can't help but being nostalgic sometimes for the pictures of that era. I know, it was not as nice as it was presented to us, long kitchen duty hours for the wives, but still. It is easy to idealize a time long gone. Driving through your average pre-town center, the ugliness of the shop windows, the screaming neon lights, the rubbish, the weathered houses. Now, Holland is pristine and picture perfect in the city centers of old and big towns, a lot of money and government control to keep it all in tip top shape. But there are many pre-fab towns too and in other countries it can be just like that. I remember visiting Barcelona. Very high expectations, perhaps it all went wrong there already. Forget about the pretty Ramblas pictures the travel guides only show you; it's a city filled with cars and fast driving double car lanes. You first drive for a long long time through weathered outer city quarters; schmutzy, universal looking. As a kid you would pick places on the globe and imagine their pretty exotic nature. But things hardly look the same when you visit these places in adult life.

August 27th 2016

I've had a fairly horrible summer to be honest. Seventeen years of this rosacea shit, but this summer was very warm often and I am so sick of being a locked in the house patient. It's beyond depressing and usually I keep myself busy and try to keep some sort of a social life, but lately it's been tough. I don't see this changing in the near future, this constant hiding away from the sun or the warmth and the complete isolation I feel then. I seriously want to spend June, July and August in Iceland or New Zealand from now on. But I don't have the means for that of course. I don't know how the other people with rosacea who are housebound a good part of the year deal with all this, on a chronic basis. 

In the category weird but wonderfully awkward LP record covers (I selected three tame ones from the link):


August 26th 2016

I helped with the set up of a little 'art work' and an allegory of the grape harvest. We made a table, think Last Supper, and the guests consist of the sculls of wild boar. Hunters are guarding the place from both corners. Under the table, the hoof of a boar sticks out and a fan blows from the other side, so the table draping seems to be moving from the front (are there living pigs under the table?). I had recorded pig sounds playing on a loop. 

Dangers for the wine making come from:

-wild boar
-no rain or too much rain

And for the boars it's eat or be eaten.
It accompanied a projection and theater project, inspired by the work of Helga Novak. 

That show was a little bit creepy, with shouted German and surreal projections. There were crying children in the audience. And apart from some blank stares and shoulder shrugs, one older man complained out loud, especially about the projection performance, because he didn't understand a thing about it. In his rage he had calculated that 5 euro entrance fee x 100 people there, equals an amount that wildly overreached the costs for transportation and lightning for 'those crooks' Luckily he is insured for disappointments in life, and received 2,50 euro back :)


August 25th 2016

Received a present; a wig! :) So attentive, only was it supposed to be ash dark blonde, and turned out to be... ginger? Reddish by all means. I'm not sold on it yet but so happy with the nice gesture. Not that I'm going bald or anything, it's not too bad actually. Hopefully in fall the loose hairs stop entirely, now that thyroid issues are ruled out. Nothing beats your own hair. I was happy! Just not a big cheesy smiler by nature :D Had a good skin day too. 


August 20th 2016

I am seeing my dermatologist today (the German who resides closer by, I heard that Dr Chu is on sick leave at the moment, and I couldn't fly to London in short notice anyway). I'm still losing a lot of hair, it's been thinning ridiculously the past months. I don't dare to comb it too much anymore, and I try to postpone the hair washing for as long as possible too now, by wearing hair in loose braids and by not flicking it about too much. Nevertheless, there's constantly long loose hairs peeping out, or all over my clothes. Scalp still hurts too, on various and constantly changing places, as if some invisible hand is pulling the hair there.

So I've read up a bit on it all, and it seems that more people with rosacea have these symptoms. Especially these summer months it's been brought up several times on online forums and social media. In summer, people in general can shed more hair, I read. But I've never had a summer with these hands full of hairs, every single day. 

I have seborrheic dermatitis, and lost half my eye brows already over the years. No visible seb derm on my scalp though, with exception of some dry flakes now and then. No redness or real scaling however. Maybe doc can let me try Nizoral shampoo, I'm now wondering. I read and heard good things about it, also to limit hair loss, as seb derm can be a factor in this. I've had my thyroid levels checked a couple of times the past 10 years, but the last time was about 3 years ago, so maybe I will ask for another test. My mum has thyroid disease and said it caused her hair loss too before she got treatment. Paired with tiredness (one of those universal symptoms that go with more or less ANY illness); I easily sleep 9 hours a night, and regardless I always feel easily tired during the day.

Ok, I saw my dermatologist and he agreed that there is some hair thinning compared to my normal hair. He said he saw it right away, and gave me a referral for some blood tests, which I had done right afterwards. He will look at my thyroid function (T4 and TSH), thyroperoxidase (TPO) Antibodies, hemoglobin levels and iron levels. We'll see next week what the outcome says. I asked if seborrheic dermatitis could be causing this and he thought it doesn't in my case. Nizoral shampoo was therefore not prescribed (darn... I would have liked to try it anyway). He said my seb derm flares in winter normally, not in summer and that is true. There's also no visible redness or real flaking on my scalp. I then asked if he thought my medication could be causing the hair loss, especially propranolol or clonidine. He shook his head and said he didn't think so, that it was a rare side effect and that I've used these meds for over 10 years now without hair loss. He wanted to check the blood levels first, to rule more obvious reasons out. 

I also asked if low dose roaccutane would be suitable for my rosacea. As I still have quite a lot of flushing, burning and redness on a daily/weekly basis, especially when it gets too warm in summer. He is an old fashioned German dermatologist and so far has been really good and thorough over the years. He also knows a damn lot about auto immune conditions, inflammatory diseases and thinks outside the box. For instance by putting connections between bowel disease and the skin. 
But now he shook his head and said "No. Won't help you. It's for papular rosacea or acne." I said that some people with my subtype of rosacea (subtype 1, with general redness, burning and flushing and no outbreaks from pimples etc) actually feel that low dose roaccutane lowers the inflammation and cuts down on their symptoms. He said no, for your subtype I advise against it. It could actually worsen your flushing. It works on acne in specific ways, but not because of its general anti-inflammatory effect. More in the way it changes sebum levels for instance. 'And', he said, 'it's a administrational nightmare, as you would need to have monthly blood work done. You don't want that, and it dries your skin out and you can't tolerate topicals.' 

I might ask dr. Chu for a second opinion on it when I see him again, although 8 years ago when I asked him about it, he said basically the same thing as my German doctor. Not good for your rosacea case.   

Update on the blood tests; all tests came back fine.. No thyroid disease, no low iron. I'm not sure where that leaves me. I ditched the latest renewed shampoo brand (a completely neutral/ poison-free one from Denmark) for now and returned to an old shampoo brand, just be rule out shampoo as a potential cause. And maybe the bunny boiler stalker who ruined my spring caused me too much stress? I read that hair can shed in a delayed response to stress, sometimes 3 or 4 months after the event. Who knows.

Overall and in general, my skin has been wildly swaying between pale and calm, versus red and flushed and burning lately. I often wake up pale (airco on if it's too warm and a ventilator blowing at a good distance and not too strongly). But I'm flaring and flushing many times a day and feel stuck behind a fan or in airco controlled rooms, now that it's just a bit too warm and humid outside for me. Only in evenings, when it's cooler, I feel more normal and my rosacea isn't flaring at the drop of a hat. What hasn't helped in that respect is the surprise visit from friends with their lovely kid, who are staying over for a couple of days. Almost preparing to leave again, in fact, and it's been so much fun. We visited places, went to a restaurant, had meals three
times a day together, played games. All nice and a lot of laughter but nobody liked it when the airco was on in the living room (so I switched it off) and I didn't want to be a problem for others during dinners and go all Spanish Inquisition on the menu, let alone drag a fan along all the time. So I had really flaring cheeks. Luckily I can calm things down again once I have my alone time and can cool a bit. I'm not avoiding social things for rosacea, and with my anti flushing medication, the severity of the flares is a lot less than what they used to be. Just.. this wasn't a good week for guests and for ignoring my burning cheeks. But that's life.

I've cut down on my exercise the past months, but am trying to crank it back up again these days. One or two hour walks in the evenings. Usually I listen to an audio book as well then. A friend, Dorothy, sent me an interesting link. This chapter talks about how exercise can increase the level of Cytokine-10 that can reduce the inflammation caused by Cytokine-6 (levels of C-6 can increase with stress, whether physical or emotional).  It's a simplified explanation, but very interesting. 

 I also read some interesting stuff about yellow light therapy. There is already red light therapy. I'm preparing an entire blog post about both, soon to come, but in short about it: NASA was the first to develop and use red light technology to stimulate plant germination and to treat injured astronauts in space. Different wavelengths of red light can help in the treatment of rosacea symptoms, helping to reduce wrinkles and fine lines and restoring damaged hair. It is recommended by some dermatologists and a lot of research has been done on red light therapy. It can help with the following:

*Reduce inflammation, tightness, itching flashing and pustules
*Even skin tone
*Increase collagen 
*Alleviate sun burns

In red light therapy, wavelengths between 620nm and 700nm are used. Home kits for treating rosacea and other skin conditions use wavelengths of between 630nm and 660nm. The wavelengths can be absorbed into the skin at a depth of up to 8mm or 10mm. The mitochondria in the skin cells convert the red light into a type of energy that:

*Triggers the release more fibroblast and collagen to improve skin elasticity
*Boosts a natural cleaning mechanism by the cells
*Lowers inflammation
*Boosts granulation of facial tissues
*Improves blood circulation in the face

That last one, improving blood circulation in the face, is not something extreme flushers will be happy about, but this improved blood circulation is temporary, and most users find that after using their red light device, the skin becomes more pale in fact. However, not everybody can tolerate red light. I have tried red light therapy back in 2005, but I was flushing so much and was so inflamed at the time, that I stopped the trial soon after, as I felt it made the redness and flushing even worse. But I think it was hard to determine objectively at that point, so now that I have my rosacea a little bit more under control, I will try it again these next months.

Yellow light and green light can also be used in combination with red light. Yellow light is said to have a soothing effects. When used with red light, yellow light can minimize red spots, reduce the appearance of blood vessels and soothe inflamed skin. This is a soothing type of treatment that is meant to calm skin that is irritated and reactive. Green light can also be used with red light therapy for rosacea to reduce flushed, itchiness, inflammation and tightness associated with the condition. It is said to be effective for the temporary treatment of rosacea flushes. 

I still have my red light unit (a hand held device), and bought some small units of amber and green light, to try out as well. It's a pretty cheap one for now, just to try it. For here in Europe, I also need a special lantern cord device for the lamp, and an electrical socket adapter. And in case they work, these seem affordable (or at least still pretty affordable compared to what else is available online: 

When traveling on the road the other day, it struck me once again how ugly Dutch petrol stations are. Nevertheless I like petrol stations. Although their charm can be heightened or lowered by the country they are in. I imagine one forlorn, dusty, desolate one in Texas or something and that seems all romantic and scenic. Or at a nice stop on the rout 66. There it must still have something romantic, connected with the romantics of travelling. The goodbyes, the adventure. The abandonment of the soul can be suitably portrayed by a desolate petrol station,I think. Maybe the soul is a petrol station..  But this only works for exotic gas stations, not for the ones in Holland.  Here it has the air of sadness, of gloom and mediocrity. The place where commuters from the suburbs eat their soggy sandwiches, while half the countries highways are stuck in traffic. Every day Holland has on average half a million people in a traffic jam, sometimes up to 1000 km of jams and the country is not even a 1000 km long haha. Every year the economy loses 800 to 900 million euro because of employees being stuck in traffic when they were supposed to be working.

I like petrol stations, but that is because I like the scent of petrol. A friend summarized the petrol station world as follow: 'A lone employee behind the counter, flipping through a magazine while waiting for the bell over the door to ring. Near-silence outside, outside of traffic. The any-port-in-a-storm attitude of the customers that are passing through. The locals would treasure it though, as it is  likely the closest source for a number of small things, where it isn’t worth driving twenty minutes to a box-store. Yet the faceless and depressing nature of the urban petrol station. Highs and lows in terms of traffic. The sense of danger at night.'
If you really think about it, a petrol station is a nice microcosm of the area around it. Even a nice, new station built in a depressed area would be a beacon of what was to come, an attempt at gentrification and bringing modernity to the backwards people.

Bit Jack Kerouac almost. They are in line with lonely, weathered diners along the highway for me. You need demoralized employees with tired, drawn faces there. Who've seen it all already. The atmosphere must be frozen in all sorts of ways. Those petrol stations are always more romantic for foreigners than for locals.
And what's also striking; people always look less attractive in petrol stations. Harsh, unforgiving light. All your imperfections magnified.  They seem to have designed it like that on purpose almost, to match the solitude and forlornness of those places. Nowhere is a human more like an impaired animal than stranded alongside a highway.

Or Robert Frank: The Americans. I wrote a little piece about him once. A Swiss photographer who had lived for about ten years in the USA, when he embarked on a 2 year road trip through the country in 1955 (funded by the Guggenheim Foundation, and together with his wife and 2 small kids), and he made an epic photography series about it. Epic, because his images were spectacularly unspectacular. Parking lots, highways. Diners, funerals, factory workers, people in trains, neon lights, families. The dream of grandeur. A man who owns three cars and a man who owns none. PETROL STATIONS of course. Hotel rooms..  Views from a window, showing nothing but rooftops, a street, a mine, smoke plumes. Nothing pretty, nothing that stands out. Forlorn. Quite raw too, in a way. The end of the world for some. Into the sad American night. And you wonder; what made him end up in that sad hotel room, with the white curtains, overlooking Butte Montana? And more so; why does he want to remember this image? Or at least eternalize it with a picture?

Frank had escaped the conservative and narrow minded life in Switzerland, and was the son of a German jew and a Swiss. He wrote at the time that the speed, massiveness and rawness of the States had taken his breath away.  He struggled with the harsh materialistic, soulless side of the American culture, but loves the sense of freedom and energy he feels there.
He had to narrow down 20,000 negatives until 83 pictures and Jack Kerouac wrote the intro of his photo book. It made him famous. Because more than anything, he documented the experience of being an immigrant. He shows America with the glance of an outsider. A meeting of Frank, who wants to become an American, with America. It gives his pictures a sense of distance and passion at the same time and what made his work most famous perhaps, is that it showed the Americans themselves a different image of their own culture and country, different from the clean cut and 'neat' image they had of it themselves. Not only winners in the pursuit of happiness, but also poverty, gloom, racism, violence, loneliness and backwardness. But Frank didn't want to make it a political or critical statement. Just showing a mixture of sympathy and desperation, I think. Capturing the fleeting moments. And what it is to drive into the sad American night.

Needless to say I do adore his photo's. Although one could say that they're perhaps also a bit predictable. A bit traditional and always with perfectly neat compositions. Compare that with the photo project of John Baldessari haha. Oh this short video on him, narrated by Tom Waits, is really worthy of your time I think.

John intentionally made pictures with a bad composition, calling them 'wrong':

I did like the whole approach from Robert Frank. And it is interesting to have an outsider look at your own country. See what they notice, see what they find striking for a countries identity. And hopefully see them come up with something more subtle and original than tulips and wind mills for Holland, or a desert cactus and the statue of Liberty for the States :) I think the freedom and speed of life in the States would appeal to me as well. I was very weary of Manhattan initially, but was blown away when I was there. It was a unique experience, and I've traveled to a ton of capitals in my life, but nothing quite compares. And the quiet dusty rural towns with sweeping fields and weathered petrol stations seem interesting to me as well. 

Anyway.. So yeh, as I wrote, my skin was calm and then the forelast week it was alarmingly fire engine red and flushed (now calm and pale again)... Coincided mostly with hormonal periods. I'm always working, am glad if I have some hours at night to go for a walk or read a book or watch series/movies. I have a laptop now, but back in the days that I had to write thesis research on a computer, I had the old grey boxes, and the screens would make my skin flush terribly. It might even have emitted UV light, fluorescent light, perhaps direct SUNlight because darn that thing was evil for my skin redness.
I do binge sometimes, but more in terms of watching series for days. Escapism is nice, and most people seem to just do drugs or alcohol instead, as a chemical vacation from the realities of their bleak lives. I remember the type of magical thinking from the early days. I used to think: if only I go to Turkey for three weeks.. then I come back and all is back to normal with my skin. (The opposite happened and it made things even worse - 50 degrees heat wave and added stress). Or; if only I buy this new cream. You know that it most likely won't happen, but if your rosacea came up out of the blue, then who can blame you for thinking the reverse can happen suddenly as well?

I've worked some late night 'bar shifts' last week. I'm really the back-up plan and that's fine by me. Had a bit of fun with the guest list. German group called for a reservation (the place is full and sold out stiff every night) and I didn't hear their name well and then forgot the part I did hear. Marked them as A. Merkel in the guestbook. The chefs were rolling their eyes and elbowing each other in disbelief on that day; Is that really..? I know, lame humor :) Or for Dutch acquaintances, I marked their name in the guestbook as 'Klootzak'. When the food is ready (it's like a food truck, ran by a top chef), they shout your name over the terrace over the megaphone, and you need to rush to pick up your plates, as the chefs have very little patience. So they were ushered as "Klootzak", instead of "Du Bois" or "Bellisant". Means Arsehole in Dutch, all the other Dutch and Belgium guests had a laughing fit. Oh oh oh, not even that funny 😉 

In summertime there is regularly a circus passing by these villages, surrounded by fields and vineyards. It's always the same, run by two brothers. They have weathered old dogs who jump completely reluctantly through hoops. After a few of those jumps, out comes the directors daughter with a cap for money, walking past the crowd. They have a girl with a little oxygen tank on her back and a straw in her nose, and she is introduced just like that. Cap goes round again for money. She takes a basket with an old snake, who can't even be bothered to come out of it on its own strength, so she picks it up and holds it up in the air. Applause. Cap. Acrobats try to keep 3 balls in the air. A clown freaks the few children in the audience shitless. There are 3 breaks, where you're tempted to buy half burned popcorn and all in all, you're out again within an hour and a half. 
But now the two brothers fell out. And so badly, that one took half his shares and left with the rising sun. Only to return the next week, and start his own circus, taking some of the original acts with him. So now we have TWO circuses in the village, and they are half as good as the original. When the first leaves, the second arrives a day later. And I'm making none of this up. 

I saw a very interesting interview the other night. It's a unique concept I think; a guest, often a thinker, a writer, a public figure, is invited to 'make' a television evening of 3 hours, with a set host, and they can talk about anything and show any clip they want. The good ones make it into a theme evening, where the videos underline a deeper analysis of things. The poor ones make it into a Me Me Me night (Here is a music video I liked when I was 18, and here is a comedy I like, and then - following the red thread - HERE is a football match I remember watching and getting excited about). But as I said, the good ones use all that time to show outstanding video clips of things we'd otherwise have never known of, and to delve deep into something.

This dude, Dyab Abou Jahjah, is a very controversial Arab from Belgium, but a fantastic debater and an intellectual. Atheist as well. He talked a lot about antizionism (he came from Lebanon as a refugee), and how this is often mixed up with antisemitism in his opinion. Well, you can agree or disagree with that of course. He also discussed the plight of the Arabs, but made it into a really interesting evening in general. Although the interviewer was acting slightly jerkish, being passive aggressive (or downright aggressive) towards him, not letting him finishing sentences, cutting off interesting elaborations he made and all with a screeching voice. The net overflowed with criticism on him. This guest had been demonized for a week prior to the show. Advertisements were even made to try to boycot the entire interview with him. Free speech is not for everyone, after all. But this guest did get airtime and even managed to make it into an interesting even, despite the interviewer. 

He showed a really interesting (I thought at least) clip from Leonard Cohen:
(from 3:23 onwards):

Cohen has some analytical political power. Here he talked about globalization. The fall of the German wall was the start of a new era, and while many people celebrated it and had idealistic views on the future (some even said it marked the end of history, haha), Cohen saw the darker side of it. That these walls represented a predictable structure in modern times;  organized chaos: West versus East, two great power blocks, polarizing ideologies and political stances. All structured. Communism versus Capitalism; it was all well contained for people. But once these structures were destroyed, everything was thrown open, and by then it is not just hopeful, but also dangerous. Cohen literally said in that interview: "The future is murder". And he was right, in retrospect. Not just the violence we've seen the past 15 years from terrorism. But there seems to be also an existential feeling of emptiness. Despite life being saver than ever, people often say they feel otherwise. When you look at statistics, it's all becoming better and better for people on average in the world. Oh I saw a fantastic clip about that one haha, on Danish tv. A researcher going full on to a presenter. Let me show it:

A Danish statistics specialist, who blew a right fuse in an interview. Basically, he says that he sees the big picture, the big numbers, not the way the news after 9/11 is set onto "breaking News" all the time. That's partly I guess why people in general tend to feel unsafe and afraid still, these days. But he gets very uptight with the interviewer. The clip has english subs. He also said that the world isn't more divided in rich and poor, despite the media telling us this. That the world has never had so many people who do well, who belong to the economical middle classes, as ever before. In ME countries, Asian countries, several African countries.  The gap between the richest and the poorest of them all might have widened, but overall, more people do well than ever before. Of all the families who can afford one flying holiday a year, half of them are from outside the western world, he said. Here he is interviewed in another English program.

But then I watched a bit more of this Rosling oracle, and am wondering whether or not he is merely an optimist against all odds perhaps. For instance; it's all lovely that the majority of the world population is doing better, but for someone who says he has the big picture in mind, he didn't give the numbers on how this increase of wealth in the rest of the world has put pressure on our natural resources, like never before. So far the rest of the world hasn't embraced fierce ecological solutions the way Europe has.
Also, I like his unusual grumpiness and directness, but in a way his message is quite PC after all; he explains that we aren't used to refugees. Seriously? After world war 2 and everything that followed since, we aren't used to refugees? Sure, Tanzania and Lebanon also had millions of refugees and didn't bitch as much as we do about it, but I wonder if he knows how refugees are treated in Tanzania and Lebanon. Not that I know that much about it haha, but I read that they are more or less set aside in a corner (AKA refugee/concentration camps). No welfare and free grand houses and friendly integration projects and free education. 

Things are probably better in many countries who used to have it rough, but over here it's said that my generation is the first one that will have worse living conditions than our parents had. Things that were taken for granted like sick leave and a pension are simply gone in many EU countries today. Portugal doesn't even have a pension of any sorts for handicapped or chronically ill people. All living out on the street. LOL, Portugal once employed 14 Brazilians by taking them out of the favelas to come over and work in Portuguese nursing homes. Wash the elderly in the middle of nowhere. How many were thankful for leaving their local hellholes you think, haha? Two of them. The others found themselves a way out in no time, with their schengen visas in hand and said goodbye to a plan which basically would assimilate them into the local culture. That's the future for many here... every person for him/herself... 

But, he almost got me there, with his positivity, that Rosling :D
And despite the world being safer statistically, perhaps -I think- there is also a danger coming from these interchanging times of today; effectively they can be more unsafe than the statistics show, because there is less predictability and certainty, and therefore more room for not only fear, but also actually dangerous developments. Look at nazi germany; it was in that interbellum, the vacuum times with a lack of clear identity, with shifting of the 'we' feeling, with constant changes, that the fear mongering and attacking of jews started. And we see it again today, in Europe with the far right winning politically. People feel unsettled and unsafe. The same goes for the migrants btw. 

But you can't always denounce all violence, he said. When you think of the freedom fights in Algeria for instance. Provoked revenge attacks, and it had the colonial occupation context. Maybe not all violence is similar, this TV guest stated. Bombs in a cafe is barbaric, but when the French bomb civilians with airplanes, and refuse to make peace.. Abou Jahjah said: At least here the attacker looks the victims in the bar in the eyes.. He finds that less barbaric than pressing a button for a drone to destroy a village, hundred of thousand of km's away.   

Interesting clip about a social housing project in St. Louis, America; started off as some utopian idea but went down the drain quickly:

A dramatic fiasco. An environment of fear, apparently. Or were the inhabitants simply too poor and 'barbaric'? Or maybe it was the fault of society as a whole? The same thing happened with a project from Le Corbusier in France btw.  Initially the government did maintenance work on it, but once that became less, the middle classes left and the poor streamed in. And it went down the drain. Maybe the government should have invested more in those flats? 

Maybe that housing project also collapsed because they still didn't have jobs at that point? Although even without a job, you can maintain the place a bit..

Back to Abou Jahjah. He said: maybe soon from now, europe will be made up by a majority of immigrants; no more block of one specific majority then, but a mix of minorities. Maybe it will all become better, if in the future those with mediocre talents get the same chances as the super ultra talented.  It's unstoppable anyway, over here. Immigration is a long standing fact. Nationalists want to go back to old times and truth be told, I might want that too on some particular bad days, but it's not going to happen. Even though it is nice to have a clear cut national and cultural identity. Maybe better make the best of integration and throw out the rotten fanatical apples. Create a new sensation of unity.

He also mentioned reading Colin Wilsons book The Outsider, as a teen and its effect. How some geniuses struggle all their lives with big themes like transformation of the self and of society, and how it makes them social outsiders. An outsider feels different from everybody else and can't change it much, many artists are this way. But in some cases it's society who pushed them into this position, and it's not by choice that they're in that boat.
Well, and that was it, mostly. I just picked a few things from that long long interview. 

I saw an interesting statistic btw;

Comparing Spain (ES) with Germany (DE) you see that they have about the same percentage of higher educated. The big difference lies in the amount of medium educated. They make the difference in terms of economy. Germany has job applications open, waiting for people to take the jobs, I heard from someone. Spain... well that country is in a little bit of a state currently, and since the crisis started here less than a decade ago. Not just because of poor management and corruption. They don't educate the middle section enough. 

Trickle-down economics doesn't always work. Thinking that the rich will spend their vast sums of money on a struggling national economy, is often a wasted breath.Tax-breaks and other gifts to the wealthy are often not reinvested back into the economy, but parked in tax-havens or otherwise removed from circulation. A country with a vibrant middle-class is a prosperous country, as the United States had proven. I like to look at the America of the 1950's, where the middle classes owned half of the GNP, and formed a large group. Families of 5 with father working and receiving one income, which could provide for a house (owned), a car, a holiday a year and well fed kids. 
If you educate the vast group of middle classes, and enable them to have a job, they will spend the income that supersedes their basic costs back into the economy. They will want to consume and buy entertainment products, invest in leisure activities and keep economy flowing. 

And how creepy is this robot; the facial mimics are so lifelike but the whole thing still looks 'off' and creepy. Is it in the eyes?

You know these robot things, they thought of marketing them at some point for the elderly as companions and such but it was deemed dehumanizing. As a friend wrote me: "Abandoning people like that and marginalizing them to the fringes to share what remained with a programmed golem. It says something about our society. What we value and to whom we dump the undesirables on. Care work is notoriously badly paid after all and left to those who have 'compassion' and a 'heart' to give themselves to it." 
I wonder now what's worse for these elderly people who need help ...a monotonous lifelike Chucky doll, or a deaf/blind/handicapped teenager who can only look at a mobile phone? Tough choice....

Although you can hardly call these robots life-like. As a friend stated it: "They are off and creepy because there is still a long way to go in terms of mimicking muscle tissue. You can see how the muscles move in such a doll, and it is in no way similar to a human face. Not just the level of subtlety, which is sorely lacking. The muscles move in a way that emboldens the impression that it is a clockwork mechanism. If they wish to make faces which resemble a human’s, they will need to stop fucking around with this bullshit and make artificial muscles, then artificial nerves which control them. Robotics is advancing much as video games are. They used to look like utter shit, pixels and Microsoft Paint-level graphics. Now they can look quite beautiful, even breathtaking in complexity. Even on the most expensive television, with the highest-end video game console made, you’ll still come far short of any realism. Not to mention that human skin is complex far more than our eyes can see. Texture and surface variation, etc. It would be extremely cost-prohibitive to make a realistic skin.."

As I wrote above, I love audiobooks. I've got hundreds of regular books too, my parents had big book shelves and passed a lot on, and I bought many books as well, but nowadays it's nice that you can multitask with an audio book: clean, garden, walk, do groceries, lay in bed with your eyes closed. I do still buy a lot of proper books though. Especially when an audio book was amazing, just to 'have' it, and the majority of older books aren't put on audio book versions anyway. Books have some benefits over audiobooks too after all, because you can make notes in them and mark the places where something interesting is written. With audiobooks, you need to write down the minute and the chapter, which you somehow end up never doing but making mental notes of doing later, later, and it's a nightmare to scroll back to these spots on your mp3 player anyway. We used to have a shop in Holland called ECI. It's gone bankrupt some time ago, but it was one of the ugliest book shops you'd ever seen, yet super popular. Because they offered special book deals: because it was a book club. It had several benefits: you were obliged to buy one book every 3 months. That's good, because then you can always say to your family or cat that it's not your fault that you came home with that expensive 2-part biography of Hitler, instead of the cleaning spray you had intended to buy in town. They also had magazines every quarter of the year. It only advertised books and music records (my main interests anyway). ECI used to have a better name, before it became ECI: Book and Record. And then the stores themselves; they had something very unheimisch about them; ugly ceiling system from the 80s, fluorescent lighting, long piled club carpet on the floor in the club colors red and blue. Like you entered a Star Trek book rocket. 

Only the 53 books that were featured in the magazine were on display in the store. The entire 
selection, BAM, on your retina. Always Stephen King, I don't remember ever being there and not seeing at least one Stephen King book. And often multiple titles. I'm not a mad fan, but I loved Misery. Hehe, You'd imagine that an axe wielding Jack Nicholson - "Heeeeeere's Johnny!" -  would hack his way into the ECI store, to exchange the ECI book.
of the week. The only way you could stop your membership to them, was by silently changing house and address at least 6 times and even then it was a wild chase to throw them off.   

I remember from childhood my parents big book shelves. We lived in a very simple box like house, completely in sync with all the other houses in the street. 'Doorzonwoning' it's called here: sun through house. Because the living room always had big windows on both sides, so you could see from the front garden straight to the back garden; plenty of sunlight guaranteed in the house, which
dutchies love. The majority also doesn't have curtains. No joke. You can walk through the city at night and see all aspects of home life passing you by. It's like live theater sometimes. So anyway, the only thing that made our sun through house stand out from the rest (and they could all see it) was this huge set of bookshelves. One wall full of books. I used to stay home sometimes from school, maybe 4 days a year with the flu, and lay on the couch all sickly and wallowing and read the covers of all those books with my last strength. Imagined what the stories would be about. The best of them, I now have in my own book case, as my dad likes to pass books on. Read them too by now. But I also order them alphabetically. And now a friend of mine said she thought I was in the autistic spectrum, because I alphabetize until the 3rd letter. I was happy with the compliment btw  She might have mixed it up with schizophrenia though. Archive work. Yet, at the same time (and maybe this is why she called me crazy in few words), there lies a pile of letters and administration and missed work deadlines opposite the bookcase.  

My parents, well my father, always gave one advice when we started dating (i'm not making this up
and neither is he a snob): if he doesn't have some half decent books in his house, run. Oh how post avantgarde pretentious that sounds haha. But you can make out a scary amount of detail from someones book collection..  And in front of the bookshelves was a large table, that my father had made himself. It was a large table and we used it at times to avoid a spanking from our parents :) Especially my mother was a lousy spanker. Feeble, slow, not with enough perseverance like my dad. So we realized at some point that hiding behind the table meant she had to run circles around it in order to get us. And we, fast as water, would of course turn rounds as well then, laughing loudly at her. Half the time she gave up and couldn't help smirking herself, the other half she called in the help troops (dad) and we weren't happy. We tried it with dad as well but he persevered, as I said, and neither did it make him giggle.

And last, here is another column from that NYT columnist I like, heather Havrilesky. She writes here about the hardships of growing up in these times:
Get ask polly delivered every week. Social media is pushing young people to the brink. Photo: Petri Artturi Asikainen/Getty Images For four years as the Cut’s ...
And if you care for that sort of advice columns (she is really good though), here she writes a very honest and straight up response to a delusional female dater:

July 28th 2016
Skin has been behaving well lately. Went out and about this week, meeting some friends in town, going out for dinners, and as long as I stayed cool with ice water and didn't eat trigger foods, things were fine. Those people even commented that my skin looked calm this time. I hope it lasts, but it rarely does.. 

When I sat in the train the other week, I saw an old old olllld (as in; from decades ago) acquaintance get in. My skin was flared and puffy that day (train = warm = no air ventilation = sitting still = red and burning for me). I've become semi-good at pretending to not see someone, when they step into the train in this instance, or the bus for instance (pretending to crawl away in the little trash bin), but of course, 9 out of 10 times that person comes sit next to you anyway. "Gosh, what a nice surprise!" Then you can either sit it out, feign interest, or come with the motherload of excuses (and really an ultimate last-straw one); getting out at the next stop. But you can be sure that that one comes with consequences, like forgetting to take your bag out of the train, or  missing your plane, or finding out that the next train you take gets hijacked. You could of course also get out, rush on the platform to a carriage at the end of the train and get back in. But then you need to be very careful to avoid person X once you do get out for real. Awkward.,...

There are 5 donkeys nearby. They rotate in several meadows, but are always easy to find. When I'm in the area I feed them left overs, vegetables, old bread etc. There is a strict hierarchy but the last times I noticed that the group had turned particularly vicious onto the omega donkey. Kicking her, biting her, anything to make the boundaries clear and keep her separated from the group and away from the food source. But also when the food was all eaten, done and gone, she was still being harassed. Hurts me to see :( My mother told of a documentary they watched about reindeers, and one male being repeatedly expelled violently out of the group and left alone in the woods. He kept trying to be accepted, but alas. Then a year later, he managed to amass some female deers, but the group soon found him again and put up a fight. This time he fought back for his females, but he lost again. Lost the females and was all on his own again. Bold & the Beautiful, eat your hearts out. I swear, animals can have a pained look of sadness and loneliness in their eyes then...

It would be nice if, in the human world, bullying was restricted to the type of banter I encountered at youth camps; laughingly ganging up on each other to mock and magnify and parody-ize (how do you write the ongoing action of making a parody of someone in English?) everybodies worse character traits, greatest vanities, for all to see. Then have a few beers together, grumping along a bit first -hurt pride and all that-, then have a smirk and a laugh and knowing that you're still accepted and loved and that the group remains intact. Maybe when you have the safety of belonging, corrections of behaviour have an actual effect. But in school bullying, the cordon is often already closing around somebody before the hissing and scratching starts; they are already expelled from the main group and no 2nd or 3rd chances are given to renew yourself.  Just, it can be very harsh in schools I found.

I remember an odd girl in class, we were maybe 7 at the time. On the school board, in math class, long divisions were written with crayon. And we'd better pay attention, because long divisions were 'Important for later". I don't know about you, but I am more often hanging topsy turvy in a wall rack these days, than that I make a long division. But hey, that might still change of course. Our teacher, Mister De Koninks, with likely an added c or o or x in his name, in good Dutch fashion, had the habit of inviting the worst mathematicians to stand up and join him in front of the black board. They would then bobble and fumble there for a good 15 minutes, while Mr. Ko(o)nin(c)k(x)s kept yelling "wrong" until those kids would slink off, back to their seats. There was an immigrant girl in class, new. She was Russian, or perhaps from South Ossetia, we weren't sure, and she had been sitting in the back of the class quietly until then. She looked like your grumpy uncle from Belgium; harsh features, grim mouth. But perhaps, we imagined, that were remnants from her gruesome travel by foot from Chernobyl. Underway burning down kolkhoz farms and doing contract killings. Then hop, over the Iron Curtain, and after crashing some Hunebedden in Drenthe with her bare hands, she would have ended up in the back of our little rural, peaceful northern class room. She now walked up to the front of the class (think of that whistle tune that later gained fame in Kill Bill), her mouth in a tight stripe.
But what really had her interest, was the black board! Ours was moss green, had wheels and you could flap the outer parts inside and out. And you could roll it over the floor, casually and smoothly. What had been the case? Her silence all weeks came from her ponderings about this blackboard, having been brought up in a country of weight lifters, where the blackboards had still been rock solidly attached to the walls. Wheels under it had been nothing short of soft music of the future, back in Russia. With all her knowledge of soviet organs and iron ploughs, she had probably been observing that blackboard all those weeks, we now realized. Then she put her hands in the crayon box, grabbed the black board, looked from left to right and gave it a mighty lift. The side panels swept in and out and we sat there in a cloud of crayon powder, haha. Mr. Ko(o)nin(c)k(x)s was too baffled to reprimand her or ask about those wretched long divisions.

And did we bully her? Nope. She was exotic and interesting, even though she never fitted in.

I have good memories of my 'high school' (middle school it's called here, ranging from age 12-18 on average). Never liked the mass cliques, but made some friends I still see today and was only bullied for a short period of time (but enough to give me the scares for a year). I had this phase... it's quite pathetic and embarrassing to tell now, but I would have a few 'intellectual' friends and we'd read poetry from Byron and Shelley in our lunch breaks, dressed in black, me like some Pre-Rafaelite slash Jügendstill heroine with flaming red (dyed) hair and white powdered face. Not to be mixed up with the goths, because we didn't 'do groups', haha. And definitely not heavy metal goth, which was light years away from the real Byronesque-Brontë gothics. Ahum. And we would ask pretentious, vacuous questions, walking around like Socrates and interrogating pupils when they least expected it: "Tell me now; Mozart or Beethoven??"
Then having serious attempts at discussions about it. Only to soon replace either one of them with Bach, a few months later (getting through those stacks of classical cd's was work in progress after all). It would go something like this:
"'Beethoven. First should come Beethoven, of course. We can be short about that. He was the greatest musician in history, Mozart doesn't even come Im Frage. That passion, that inner turmoil, that tangible Angst and drama. And I know what I'm talking about, of course."
"No Bach. Bach is the greatest. The centre of everything. Those intertwining, yet combusting and collapsing melody lines. Those accelerations and complex compositions with heart wrenching melodic climaxes."
"Mwah.. Bach is kind of boring."
(The other puts up great eyes and a tormented expression when the words 'mwah' and 'boring' are uttered).
"And Beethoven could thank the Lord almighty that Mozart died so prematurely, or else it would have ended badly with that labourer".

Like the soccer boys would quibble about Pele or Maradonna, we didn't tolerate bullshit about dead composers, as if their latest albums had just been released. Oh the smugness and arrogance of teenage years. I added some pictures from those days in this post. No rosacea yet! Awwwww.. :/

Been also doing some serious window cleaning and gardening at tunes like this one. Amazing how even normally dowdy chores can resemble a revolutionary achievement that way :)

And that poem I added the other day, Boris Ryzhy. I watched a very nice documentary the other night about him. He hung himself age 26 (why are these geniuses so often tormented like this??). He told a lot about the kids from the Perestroika and in the docu, his sister went and visited the old concrete soviet blocks in the worst part of Jekatarinaburg, where they grew up. Most of his school mates had either been shot dead or ended up in crime. He told and wrote during his lifetime about the difficulties of coming off age around 1993, the Perestroika, and how his specific generation was a lost one: grew up in the wonderful communist fairy tale dream, of scout clubs, communal holidays, flag waving, dreams for the future, forced smiles. Then graduating in the year that the old Soviet Union fell in pieces. The Perestroika meant that anyone with a nose for business went into business. And the rest saw it from a distance, grew jealous and frustrated, and tried to take and grab the wealth they amassed illegally. Resulting in the bandit state the USSR became after capitalism was introduced (or perhaps already always was, if not explicitly than latently); a division in criminals and money makers. That type of radical change from the communist ideals was too much for his generation, who got stuck in the middle and paralyzed with the inability to handle the new situation. Having only ever learned the communist way.
Anyway, it was a sad docu, but a beautiful one. And maybe this is the same mechanism at work everywhere; the bigger the gap between have and have nots, the more radical the excesses that can be seen.  The harder it is made (or perceived) to catch up with the 1%, the more desperate the excrescences.

 July 27th 2016

A poem that touched me today:

Best take the tram...

Best take the tram if you’re going back to the past
with its bell, the drunk bloke next to you,
the grimy school kid, the mad old girl,
and, of course, the poplar leaves drawn in its trail. 
Five or six tramstops later
we ride into the nineteen-eighties –
factories to the left, works to the right,
no one cares, get out your fags, what’s wrong with you.
What’s that you’re mumbling, sceptical, something
like this is all lifted from Nabokov.
He was the 
barin’s son, you and I are the leftovers,
come on, smile, there are tears on your face.
This is our stop – 
posters, banners, here and there,
blue sky, red neckties,
somebody’s funeral, musicians playing.
You play along to them on your whistle 
and then float off to the beautiful sound,
leather jacket, hands in your pockets,
along that path of unending separation,
along that road of unending sadness
to the house where you were born, melting into sunset
solitude, sleep, the moulting of leaves,
come back as a dead soldier.

Boris Ryzhy

July 26th 2016

A friend with severe rosacea wrote me about her struggles with it. How being tied to the house, the fan, the airco in summer, was hard to tolerate. And that every outing creates flushing and burning and misery. I replied:

Hi X. Sorry for the slack response. I have written you one already ten times in my head. I have periods of depression too, on and off. Not deep deep depression, but low mood and energy and it takes me so much effort to pep myself up during such days then, and to keep in touch with family or friends or just simply get some work done. But now I'm feeling a bit better again. In Holland now it is only around 19 degrees I think. Compared to much higher temperatures, well over 30 degrees Celsius, where I was prior. In the other house in the south it's literally a prison at this time of year, even though there is airco. I can't be out much, even when we have lunch in the shade in the garden in the afternoon with a fan on, I get overheated and very red and as you know, it takes hours then in the airco/fan to get it down again. Now at home, wow, I've been in town 3 hours, not flushed.All fine. In and out of shops. Eating some chocolate even. Not flared, skin looks kind of normal at times. Been at my sisters all evening without fan or cold packs, not flushed. Played with the kid, he licked my cheek with a chocolate spread covered mouth (some form of banter/affection I understand), skin's not flaring. Whereas the past weeks in the heat and high temperatures of 30 and beyond, my skin had been only manageable with airco on non stop and fan. I know the horror this is. Yeh of course you sometimes wonder how to keep going with such a constrained life. Being locked at home and not able to join in your families outings and spontaneous fun, you must feel so left out and frustrated. Sometimes I also don't know how I keep going tbh, for such a long time now, basically it became a nightmare since 2004/2005. So that is a very long time of being a prisoner in your own overheated body. I love my nephew and friends kids and am daily sad about not having my own. I never thought I'd miss out on that experience. But I cannot foresee how to cope if the flushing and burning gets worse than this. It's just not possible for me now. When I travel, it's hell half the time, I'm red and flushed and hot and just eating ice chips and hiding behind a shawl and getting home asap. But it's also relief to change scenery and to do things, be out, watch the world go by, observe people doing their things, be on the go. I love that. 
I don't know hun, I just focus on the things I do have I guess. Distract my mind with hobbies and reading and writing etc. Go out when it's cool and dark and windy outside. Try to keep up my friendships and relationships, even when I feel like blocking everyone out sometimes. I am doing just the same as always; taking my anti flushing medication (clonidine, propranolol, mirtazapine and Xyzal). Avoiding my worst triggers (perfumes and air fresheners, direct sun exposure, heat, stress or distress, foods I don't handle well). I don't use anything on my face except some water-diluted jojoba oil around my mouth and eyes when needed. I try to exercise in the evenings when it's fresh enough. I think about people worse off than me when I am feeling too much self pity. As long as my face isn't burning up and flushed, it's not so bad.. 

I am trying niacinamide at the moment. Too early to tell if it helps me or not, but I'll keep you updated hun. 

I really understand the feeling of not being good enough, not fitting in, not being able to bring those things, that energy, that persona to the table within your relationships and life. If you've got this bad enough, it's a disability I think; you can't go out, can't relax in a restaurant or a spa pool (chloride! Heat! Food triggers!). The 'danger' is lurking everywhere, even the sun is one. Hard to explain people who haven't been through this themselves how hard it is to live so restricted and in the sort of pain that an inflamed and burned up face gives you. You wrote that your face can look like raw meat when you're out and about. It's utter horror, if there is some creator, you'd wonder why he/she/it invented diseases like this one (and most of the other diseases out there, let's face it). Did you know of an old German politician, Helmut Kohl, whoms wife had severe sun allergy? Even day light would give her terrible skin issues, she had to live in the dark, get out at night. She took her own life in the end :/ Sorry, not trying to end this message on a downer, but just underlining that I understand the daily struggles you have and to not underestimate the strength and perseverance it takes to make the best of it like you do. Pep yourself up every day, and keep hoping for improvement. You are a special and loving person, so appreciated by those around you, keep going. 
big hug, chin up gorgeous 

An interesting little (photo)article: https://birdinflight.com/ru/vdohnovenie/fotoproect/06042016-face-big-data.html I'm not speaking Russian, so I'm not sure what the concept behind it was. I doubt to 'body shame', maybe it tried to look into the friction between the public persona people create, now that we no longer have to rely on the States Photographer, for instance in the communist days, but can create our own image. And then compare it to the real life, unfiltered image of us. Or maybe it went the other way round and the photographer started to picture strangers in the subway and then went after their social media profiles to see the contrast.
What I find interesting is that people have neither so nice skin surfaces nor are as happy as they pretend to be. Aaand that looking down on smart phones gives you a double chin, haha.


Конец анонимности: Идентификация случайных попутчиков


July 25th 2016

I have been up and down, lethargic and energetic, a bit all over the place. Have been out to dinner and away on beachy day trips (avoiding the sun mostly and with cool breeze), a concert too, and then combined with days of locking in and watching tv series marathons. Busy with some work
related things, busy with new kitten. I am helping a couple of nights a week in a tapas place restaurant /bar late at night, polishing glasses, cleaning up, bit behind the bar. They have a massive aircon blasting away, so it's not a problem in summer temperatures. And I can leave whenever I need to, in case my face flares up too much. But it's good for me I feel, to be part of a little team. Even though it's a very modest contribution haha, maybe 'team member' is too glossy a term for it.
But it does work like a dynamo; after social evenings, I tend to get more interest in making appointments with friends in general, going out. The red post alcohol party flare has settled more or less now, but with the warm weather, it's not easy, having an easily heated up face..

I thought about my friend a lot, the one who passed away. The depressive states were on and off with him, which is an upside to the situation. He had his good times and he had his bad times, and he was lucky to have had the good times. A friend said about it that death is not a concern of the dead, that they are beyond any such mortal inconveniences. He is in a better place, even if that is non-existence beyond the memories of those who knew and loved him. Seems to sum it up well, indeed. Still, it is strange to have someone so lively and original and boisterous with language as he was, silenced. No comments on things I could have been certain of he would have commented on. Just nothingness.

I saw this article today on Victorian beauties. Made me go in complete awe, I love their faces. http://www.vintag.es/2016/07/beauties-in-edwardian-era-top-15.html
I'll add my personal favorites:

Beauties in Edwardian Era – Top 15 Beautiful Women of the 1900s

This era had many talented and beautiful women. And here are top 15 chosen by Vintage Everyday.

1. Evelyn Nesbit (1884-1967)

In the early part of the 20th century, the figure and face of Evelyn Nesbit was everywhere, appearing in mass circulation newspaper and magazine advertisements, on souvenir items and calendars, making her a cultural celebrity.

Her career began in her early teens in Philadelphia and continued in New York, where she posed for a cadre of respected artists of the era, James Carroll Beckwith, Frederick S. Church, and notably Charles Dana Gibson, who idealized her as a "Gibson Girl". She had the distinction of being an early "live model", in an era when fashion photography as an advertising medium was just beginning its ascendancy.

2. Lily Elsie (1886-1962)

Miss Lily Elsie made her name on the opening night of The Merry Widow, in London, on 8th June 1907. Overnight she had the town at her feet. On the stage Elsie seemed mysteriously beautiful with her perfect Grecian profile, enormous blue eyes, and hauntingly sad smile. Tall, cool, and lily-like, she moved with lyrical gestures in a slow-motion grace.

She was a true 'star' of Edwardian times, although the word was yet to be used in that context. Magazines produced special supplements about her, adverts featured her picture.

Although her fame and fortune came entirely from public appearances she was painfully shy. After just a few years on the stage she retired to a quite life away from the public eye. She did however leave us with hundreds of pictures, a few gramophone discs, and two films, to remember her by.

3. Maude Fealy (1883-1971)

Maude Fealy, the daughter of actress Margaret Fealy, was born in Memphis, Tennessee. At the age of three, she performed on stage with her mother and went on to make her Broadway debut in the 1900 production ofQuo Vadis, again with her mother.

Fealy toured England with William Gillette in Sherlock Holmes from 1901 to 1902. Between 1902 and 1905, she frequently toured with Sir Henry Irving's company in the United Kingdom and by 1907 was the star in touring productions in the United States.

Fealy appeared in her first silent film in 1911 for Thanhouser Studios, making another eighteen between then and 1917, after which she did not perform in film for another fourteen years.

Throughout her career, Fealy taught acting in many cities where she lived; early on with her mother, under names which included Maude Fealy Studio of Speech, Fealy School of Stage and Screen Acting, Fealy School of Dramatic Expression. She taught in Grand Rapids, Michigan; Burbank, California; and Denver, Colorado.

Later in her career, she wrote and appeared in pageants, programs, and presented lectures for schools and community organizations.

13. Ethel Warwick (1882-1951)

Ethel Warwick was a British stage actress. She was an actress, known for The Bigamist (1916), The Magistrate (1921) and Bachelor's Baby (1932).

During her teenage years, before becoming an actress, Ethel was a nude model, posing for, among others, James McNeil Whistler.

12. Geneviève Lantelme (1882-1911)

Geneviève Lantelme was a French stage actress, socialite, fashion icon, and courtesan. Considered by her contemporaries to be one of the most beautiful women of the Belle Epoque, she is remembered for the mysterious circumstances of her death: on the night of July 24/25, 1911, she fell from the yacht of her husband, Alfred Edwards.

I know that I'm gushing a bit about the Victorian era now and then, and possibly for the wrong reasons. Gothic novels and pretty dresses. Dramatic poetry. I doubt life was better back then. They’d have been crushed under the pointlessness of life. As a friend, J.W. described it: "Break your back all day in pointless labor for pointless pay that never allowed you to get ahead in life. Knowing you were little more than a beast of burden to enrich the Marquis of Danbury. You couldn’t leave, you couldn’t quit." You weren’t literate, so the only escapism was either opiates or the rudimentary theatre and cinemas they had at the time. After discussing it with him, I wonder if perhaps he is right in stating that the Victorian Era was the inverse of our own; that they sought small pleasures to make up for the pointless and harsh nature of their existence. He made some interesting points; now, many people have more distractions than ever. More westerners have less to complain about than back then, and a chunk of the problems we face seem the ones we create ourselves. The small pleasures in life have become our reason d'être in life. We do not have epidemics or plagues anymore. Many of us are free to go where we wish, when we wish. We have a non-stop barrage of entertainments. It all has to be brilliant and fun and outbursts of happiness, if possible, or life is close to 'meaningless'. 

Maybe people were happy in some way back then however, because they had a limited palette of choices. And a large chunk of predictability, habits and boxed in patterns to go through. Now, we have nothing but (seeming) choices. 
There is also so much expectation, and so much comparison and pimping up our lives on social media. 

Heather Havrilesky is a columnist and I really love most of her columns. Here she writes about the perils of being young in this time and era. She used to think, she writes, that the millennials were spoiled, self obsessed, entitled and overly confident. But now she thinks that in fact, millennials especially (but all of us to some extend) feel guilty and inadequate at every turn and compare themselves relentlessly to others. That they are turned inside out, day after day, by social media.                                                                          "An external mob is watching and judging and withholding approval. It’s impossible to matter, to be interesting enough. Many young people describe others as “a better version of me.” This is how it feels today to be young and fully invested in our new popularity contest: No matter how hard you try, someone else out there is taking the same raw ingredients and making a better life out of them. And the curated version of you that lives online also feels hopelessly polished and inaccurate — and you feel, somehow, that you alone are the inauthentic one.

Of course, you can bring against this that todays generation isn't killed as canon fodder in world wars, isn't dying from the plague or Spanish flu anymore (although now we have cancer to worry about). That such worries as described by Heather are luxury frivolity in comparison. But comparing to what has been rarely solves the problems of this day and age. 
And of course, only those miserable ponder about all this, it's pretty futile haha. 

I've noticed a ton of hair shedding btw. It made me go a bit OCD anxious and preoccupied with noticing every (long) hair that falls out. Because there are so many. Every time I rinse my hands through it, BAM, more loose hairs. And there are tons of them daily :/ At least 60 I'd say and probably more. Last fall I had the same thing and learned it could be seasonal hair shedding, Then over the winter, I could brush the hair again without strings coming loose. But this month, July, it's back and worse than before :( I even see some hair thinning at the scalp (not pictured). But when I show it to my folks, they say I'm seeing ghosts. I hope they are right. I made some pictures, but had the hair in a braid the night before (so it looks thicker now with volume etc), and I also threw it all to one side. I'll make a picture of the scalp perhaps soon, I don;t have my camera here at the moment (and don't own a smart phone). But it's showing more scalp than normal, I am sure of it :(


 It used to be so thick :/ Maybe it is from stress, had some very stressful months in spring (in personal life). But I'm also worried that some of the medication I take for my rosacea, propranolol (beta blocker) and low dose mirtazapine to be more precise, might be causing this. But then again; I've used them for over ten years and don't remember this happening prior. You'd assume... that it would have occurred sooner then? Or maybe not..


July 14th 2016

I went to a village party last night. Long tables and live music and food (melon with bacon, sardines and sausage, cornetto ice cream) and the obligatory awkward dancing afterwards. Didn't feel like going initially, but it usually ends up being a nice evening and it wasn't very warm, and my skin was still very calm and almost normal acting, so I pepped myself up and we went anyway. It was fun! Sat with a group of friends and acquaintances, which made it easier for me to get through the initial (2 hr) shyness. Some friends who know about my rosacea commented on how bloody pale it looked, and what I had been doing. I don't know really.. just the usual. It came to a point where everybody was getting pissed, as usual, and I had a bit of rosé wine with my water. And I wasn't flushed afterwards, not burning either. Just a little bit light headed, which was really nice again. Given that everybody else was tipsy already by then. Then I felt a gush of rebellion coming over me, and took a full glass of white wine. Still no burning face and my friend said I wasn't red at all after that one. Anyway, ended up with 3 glasses of white and rose wine, and a few late hours of silly dancing moves, and it was really nice actually.

Btw, this is Mishka the cat :) :)


Late at night, back home.. yes, more red. Felt my face burning and glowing as well. And now the next morning, it's pretty blotchy and feeling tight and warm. Also not as pale as it has been the past weeks... Maybe the alcohol didn't give instant blood vessel dilation, as it used to do when I was doing poorly with my rosacea (and everything more or less can kick it off). BUT alcohol lso is an inflammatory substance, so maybe overnight, it stirred up the redness and I have some papulas too now. Oh well, I won't make it a habit, for sure.



July 12th 2016

Skin is still behaving very well. I have new kittens and they are super adorable. They try to cuddle up in your neck or on your face preferably, lick your face, bite your nose, so I'm trying to condition them in such a way that face is forbidden territory. Nevertheless, my skin isn't flushed too much. If I eat gluten or lots of sugar or chocolate, I do get some break outs these days however, on top of general redness and burning. I never had many of them in the past, just now and then. They used to stem from intense flushing episodes, or evil diet treats (foods that aren't doing well with my skin). Maybe it's hormones these days that cause them to come up more often, or just rosacea progressing a bit. Either way, I put some thick white zinc cream on them, then after a little while I take the worst of the zinc cream off again with a cotton pad, and only a faint lighter dot remains, and the pimple (papula, whatever you want to call it), seems to dry out quickly then.
Having a red burning face is still the worst for me, so given that thát inferno is calm this month, I'm happy.

Went out for a meal with friends over the weekend, watching the Euro football final at the coast. Tried to pick the sensible foods, fish in this case; had a tuna tartare. It was raw but softened with very mild acids from vinegar and citron. Not too sour, not too acid'ey. Melted on the tongue, it was very nice indeed. My friends all had fish dishes too and we rotated them a bit so that we could have a bit variety.

It was warm and humid, but there was a little breeze. I don't drink any alcohol, in a bid to keep my skin calm, so I drank a lot of iced mineral water. Brought a little hand fan with me, but I didn't need it. Dessert was home made ice cream, a bit of a misstep (sugar, dairy) but soooo good. Oh well. 

Food in general; I try to be really strict. I mainly eat vegetable stir fries (courgette, broccoli, carrots, olives, sometimes fennel or green beans), lots of salads (with melon and olive oil and olives, sometimes some chopped up dates in it). Organic meat (minced beef/chicken), I love duck too and fish. Most fish goes OK for me when I take an antihistamine half an hour before the meal. I also eat organic eggs and potatoes, sometimes rice. I try to limit carbohydrates nowadays, prefer a plate full of vegetables or salads and meat/fish. I eat a hand full of pistachio nuts now and then too. I make my own ice cream (ice cream maker) with rice milk. Either add some raw cacao powder to it and a little bit of acorn syrup, or make it a sorbet with mashed up fruit (I made peach ice cream this way and melon one but you can do whatever you want really). The downside of the rice milk (or almond milk) is that it lacks fat. So the ice cream doesn't become creamy and rich. I tried adding some coconut oil (worked ok but gave some coconut oil clumps here and there, and the taste wasn't perfect either). I also tried adding some organic, thick full fat yoghurt, and that makes a lovely ice cream. But yoghurt makes me break out unfortunately. I also tried full fat coconut milk and that works best for me. But is very high in calories, unfortunately. 

Foods that make my skin very red right away are: peanuts. Alcohol. Old cheeses. Tomatoes. Bananas. Spices. Strong vinegar. Pork meat. Chemical looking candies. Milkshakes, fastfood. 

My meal today;  


And what I had to resist haha :) No, I didn't even taste one slice. Discipline, discipline :) 

July 3rd 2016

My cat hasn't returned. I suspect it got sick and shun away, or ate a poisoned mouse perhaps.. He had issues with recurrent urinary tract infections in the past. Neighbors would give him treats when he did tricks to get some, and they would usually be salt-laden, despite me warning that he had a salt free diet. I am not sure.. It's saddening, but there is still hope. Things are going well skin wise. Not a lot of flushing and my skin looks pale and pretty even in tone too. Had my GP and some friends and my parents comment about it, how calm things are now and how smooth my skin looks. Fab! It helps that temperatures aren't very hot over here, but not too cold either. Winter cold and wind makes me really red and gives the skin this dry, thick, ruddy coarse sort of complexion. And too hot means i'm just red and flushed a lot. I've been trying to avoid food triggers but when I cheat on chocolate or even cakes, so far my skin hasn't had a relapse.

My GP asked me why I thought my skin is so much less bad looking this week than it was 5 or ten years ago (I've had her as a general practitioner since 2002 or so already, so she saw me with badly flushed skin and with good skin over time). Added some pictures, they're always taken with a regular photo camera, I don't have a smart phone or any of those fake filtered flawless skin/photoshop devices. I'm not sure, but maybe age is a good thing here? I'll turn 37 soon. My derm in London often said that he thinks rosacea can burn itself out with age. I never really believed that, but now have changed my mind. Broken blood vessels will not suddenly magically disappear when you get older, they need laser or IPL to get rid of, but what I have is mostly inflammation and dilated blood vessels from flushing. General redness from... well, a host of triggers. Hormones for sure are a trigger. The week before period is typically the worst of the month, rosacea wise. But now that I'm getting older, perhaps my hormone levels are dropping. Perhaps with age, my overactive immune system is slowing down. Which would be good in my case, as it stirs up the inflammation.

My skin can be crap one week and then a few weeks later all is calm and smooth again. I usually don't do anything different once I flare. Just stick to my anti flushing medication; clonidine, 0,075 mcg 3 times a day, sometimes upping it to 0,150 mcg if needed), propranolol, 40 mg twice a day, Xyzal 10 mg once a day and mirtazapine, 22,5 mg at night. I also try to stay cool, use a fan when I flush a lot, try to eat healthy, reduce stress. Flares like the ones I get (more redness, burning and flushing, sometimes p&p's and red dot outbreaks), usually still calm down quickly for me, luckily.
So I don't add antibiotics or emergency medication to the mix anymore these days. My derm says to not change a winning formula - those anti flushing medication I mentioned - and to accept that it's best to avoid my worst triggers and just keep things as calm as possible. One day of ongoing flushing is usually followed by another one and once you've set those blood vessels off, it can be hard to calm things down. My way of calming matters down is those medication and using a fan (not too close by, as fans can create rebound redness if you put it too close by), or airco if needed. Sometimes a cold pack; frozen gel pack, wrapped up in a t-shirt (washed in perfume free washing powder). It's best to not put it on your cheeks too long or when it's too cold; you can cause frost bite (freezer burn) or your blood vessels can rebound once you stop with the cold pack. What usually helps me, is to combine it with a fan (and airco if needed in summer), and just pat it on my cheeks now and then, for short periods, and let the fan do most of the cooling. It is also helpful to put the cold pack (wrapped up!!) on your neck or chest.

I've been enjoying the Euro football tournament and been seeing friends and family. It's so nice when your skin isn't flushing at the drop of a hat. No cut short meetings in town because my skin is starting to play up. More than one appointment in a day possible.



June 12th 2016

My cat is still gone, and I have a very heavy heart about it returning, at this point. I am very sad still. Bit down too. I really loved that cat immensely. One of a kind cat, full of character and quirkiness and coolcatness.. Never had one anything like him. I'm really making overtime just going over and over what could have happened.
I learned in the past days that he had a couple of people in his territory who also adored him. Some have a wonderful deep garden, and said they had Bassie over regularly! They adored him. There was a guest house in the back of the garden with a bed and open doors, and he would often lay there and sleep. Shady, quiet, people who cuddled him. It starts to make sense now why he sometimes was restless to get out again after his meals. I adore him even more for it though, he knew to get the best from life.

Another neighbor gave him 5:30 AM cat snacks :) He also spent a lot of time gazing at the chicks of a neighbor with a tiny chicken farm.. He said even that my cat got hold of a few chicks and ate them, but I am not sure if that is really true. It made him a usual suspect, but I am most likely getting paranoid there (cat killers and all that). I am starting to think like a (sad) detective now, in other words....  I have a hard time believing however that Bassie walked away. I have also a hard time believing he could have been hit by a car (he was so afraid of even the noise of an approaching car). Could someone have hurt and killed him?

I can mope around like I have done so far, but that is no use for a rosacea blog, so I will leave it at this, until further notice about him returning (please, please).

The bad year of 2016 has continued to take its toll, we're not even half ways after all, with the sudden and very upsetting death of a Rosacea Forum member who has become a good friend of me over the years as well. IowaDavid was only 37 yo and a fantastic writer who won prizes with his short stories. He was super funny and smart, as well as helpful and kind. I know that sort of praise is always given at funerals, but in this case, it really is true about this gent of a man.. I've written for around 5 years I think with him, long emails, short messages, facebook contact. He let me read his fiction (it was really good, no kidding. I think it was now about finding the right (willing) publisher) and we discussed his writing. We talked about our lives and shared interests and we just got along I guess. About depressions also, and how to (try to) deal with them. Only a week or two ago he wrote me a long message and I replied, but didn't hear back. His family posted his obituary earlier this week on social media, which was a massive shock :( I am upset, and found out that many people who knew him from his extensive posting and helping on The Rosacea Forum were as well.

Yup, when it rains it pours.

My skin has been bad. Maybe it is the excessive cat cuddling with my other cat, or the summer heat, or from having dry skin, or from something else, but my skin is itchy and broken out in tons of small red itchy inflamed dots. It burns and itches at the same time. I didn't sleep much the past week though, had stress, cried a lot (salty tears aren't helping). I'm trying to eat clean now, take my anti flushing medication, put zinc cream on the red p&p's, keep the indoor air cool and humid and just hope it will pass again..

My skin before all this started:



I also read some interesting advice on The Rosacea Forum:

"I'm just so fed up with all of this shit. Ive tried to do everything I can to get better. I quit drinking, I gave up all hard drugs, I try to avoid my triggers. yet all day non stop my face burns, I look like a freak, I feel defeated and emasculated. 

Recently the only thing I've been able to think about is drinking my fucking ass off, how else do you escape yourself? no matter where I go I cant escape from my hideous fucking complexion.

what kind of a fucking existence is this? what possible jobs can a person with rosacea thrive in?
I used to have so much optimism and hope for the future, I had dreams, aspirations, but now I'm just not sure about any of it. how can I land a good job or meet somebody who will love me when I can barely bring myself to go to the store? I know nobody can help me. doctors couldn't help me, my parents couldn't help me, I cant even help myself. If some guy walked up to me and put a gun in my face right now id just say do it. Fuck my life."

hg24 replied: "Julianjett! Just about everyone here has posted comments like yours or has felt they way you do. Don't give up, though. You just haven't found what works for you yet. I was a severe flusher - and I mean deep maroon, full-face flushing. Burning, stinging, swelling. It was most attractive. Not. Had to quit my job. Spent most of the last few years housebound. Etc.
Ants has a good suggestion. Beta blockers. Propanolol can help. (You have type 1 rosacea, right? Flushing, burning, redness?? Or do you gave type 2? Breakouts?)

Derms are woefully untrained when it comes to treating rosacea. Do NOT let them give you Mirvaso. But do talk to a derm or GP about a beta blocker. Clonidine is another option. Alcohol is one of the top triggers for rosacea - so good to get away from that and the drugs. Diet is key. Also, sounds too simple, but tons o' water helps. You want to focus on caaalming your system. Lowering inflammation. You want to get your nervous system and histamine receptors and digestive system to chillax.
Also, stay out of the sun and keep your skin well hydrated/moisturized. Don't fuss with it (cleanse very little, just splash with cool water). Too much cleansing/creams whips up the flushing, which whips up the nerves, which causes stinging.

So get to a doc and ask about a beta blocker. Some people benefit from an anti-depressant - it helps the nerves and somehow works on the CNS to dampen flushing. (I take Zoloft.) Also, you may want to take an antihistamine every day - but again, drink plenty of water as it can dry your skin. Don't give up! Your insides are asking for a rehaul. Write down a plan and go forth. You will get better! I did!"

Ants replied: "I rarely post on here as it upsets me more than anything but I really hope you've read the advise in this thread. I'm worried about you buddy, I've been there and went down a path which led me to debt, drugs, losing my job and frequent drinking. Tomorrow I start a new job and am trying to put all that behind me. hg24's post is gold, pure gold. Please please please read that word for word and TRY these before losing hope

1. Get on a beta-blocker ASAP - there aren't many side effects and they will help the anxiety / stress related flushing. I recommend starting on 2x40mg tablets a day and seeing how you feel.

2. Analyse your diet, say no to those one or two sweets or a packet of crisp or a can of coke. I avoid gluten, added sugars and cook everything fresh. With your diet, you need to be very SMART - just because it's healthy, doesn't mean it's good for rosacea or blushing. For example, smoked fish is very high in histamine but also very nutritious and healthy. One thing I avoid is tomatoes - it's a massive pain as tomatoes are in almost every sauce and curry you can name (oh and Pizza but I avoid that anyway due to gluten)

3. Try taking an anti-histamine daily. They help me but also destroy my sex drive so I no longer take - if you are taking, make sure a newer generation anti-histamine which won't make you drowsy

4. Look into a supplement called L-theanine - take it with a SMALL amount of caffeine (half a cup of black coffee) in the morning. I recommend these  https://www.amazon.co.uk/dp/B00J1CWK...EBAH68S7JMQBEF

5. Look at your cosmetics - find a natural shampoo, deodorant and shower gel. Don't use aftershave. If you want to go all out, look for natural toothpaste / mouthwash too.

6. If you're still having no luck, consider an SSRI.

7. Drink lots of water and stay as positive as you can.

8. If you like to work out, get a gym-membership in a gym which has air-con. I go red in my gym but I've NEVER blushed. Don't work out at home / on the road when you can make things easier for yourself in the cooler gym.

It has taken me SIX years to come to the above conclusions, through trial and error and I can almost control my symptoms. I don't even believe I have rosacea, I think I have Chronic blushing and a central nervous system which is way out of control. Read more info here.

Not to blow my own trumpet but I would have killed to have the above information provided to me. I've had to do years of research and trial and error tests to get to where I am now. Please please please stay positive and give them all a go."

Vice wrote: "Sorry man but I have been in your position as well. Flushed all the time and persistently red and almost beet red. Nothing anyone has said above with drastically improve your condition as I had done all that. However it will stop it getting worse. Rosacea unfortunately just gets worse and worse the longer it's left untreated. 

Here is how I am *slowly* fixing my Rosacea. 

Blast your face with an IPL laser they are about 200$ a treatment. They work. They destroy the cell infrastructure that has been created by the flushing. It will begin to reverse the effects and reduce flushing. Once having IPL you need to do as much as possible to avoid flushing. But do maybe 5 rounds of IPL and your redness and flushing will decrease by a minimum of about 50% I recon. Some people can eliminate it. 
You need to get more finances as money will be your cure here for controlling it. IPL is he way to go for subs type 1 in my opinion even though it takes slot of treatments to really make a dent."

And: "Stop smoking the weed, saves you probably 20$ a day if you go through a couples grams. 
When you listed all the beta blocker side effects it doesn't mean you get them. There is a chance you get a few. Your rejecting all the possible chances of helping yourself here so what was the point in your post. If you hate your redness that much, then get some bloody beta blockers, try them out if they are not good for you stop using them. It's as simple as that mate. 

Here is a list of what to do: imo

- Cut down the weed

- find a way of making more money or saving more or borrow from relatives do whatever it takes 
- meditate in the morning to try and call inflammation
- take colder showers 
- find a laser place near you and get at least one IPL done as it will have some effect I'm sure at relieving it - maybe get finance for this ?

From what I have been learning about this Bing it can be reversed but you have to hit it with everything you got. Laser the shit out your face so you destroy the blood vessels then reduce flushing , beta blockers aid in this 

If you don't take action it will get worse and sorry but money is a big help for all this. Start making it."

"Plus, instead of beta blockers, I would personnaly begin with clonidine."

June 5th 2016
My cat is still missing. Not a single sighting of him. It has been raining heavily and I was hoping so badly that he would return because of that. I don't understand why I'm so emotional about this; as in; I understand the emotions but I'm crying about the tiniest thing and hover between hope and fear.
In fact, I don't remember feeling this unsettled and crazy in a long time :( I'm completely losing my cool. The thought of my boy possibly suffering and locked in in a shed for instance, is driving me out of my mind. I posted missing cat flyers all around the neighborhood. I am thinking about putting flyers through peoples mail boxes, asking them to check their sheds and garages. In fact, I want to do a neo nazi on everybody and bang the door and ORDER a (personal if possible) inspection of their sheds. Right this instant!

Yes there are a lot of houses to cover. He used to have his own marked territory however.. Not like he went many blocks away. And he is afraid of loud sounds or cars. This cat is so attached to me.. when I was away a few months ago and he had a neighbor watch and feed him, he didn't wash himself all week and looked like a stray cat. Schmutzy, forlorn, lost weight, lost his velvet fur. Once I got back he was ecstatic. He was biting me in my nose and legs from joy, and purring and constantly cuddling up once I got back, and started grooming himself in no time again, looked super in a matter of days. He isn't fond of other people and hates kids. I cannot fathom that he would just relocate to a strange new person..                                                                                                   I'm reading frantically online about missing cats who eventually came back-stories. It's a painful process, waking up and having a hint of hope and energy to see if he is outside waiting for breakfast.. I wake up and rush down at the sound of any miauw or postbox or cat flap sound.  He has a habit of always, when he wants in, flicking the mail box metal door opening with his paws. Even in the middle of the night when he sees I have the light still on. I so badly want to hear that sound! When I go down to check on the sound and it isn't him, I feel even more disappointment and hopeless. This is turning into an obsession.

I know this might sound mental to some, but I feel all the grief stages are thrown at me at once; anger, sadness, tears, guilt, depression, hope. I keep thinking what I could and should have done differently. This cat was a family member, a friend, had such character and love. Even when I saw him walking up the driveway when I parked the car, would make my heart jump and make me pick him up and cuddle him. He always greeted me once I got back home, often waiting for me on the garden wall. 

Now I start worrying if I should have taken him to the vet perhaps, when he seemed more agitated and to drink and urinate more than normal. I wanted to... but then he seemed to do ok again and I was distracted by other obligations :( When he had a urinary infection some years ago, he wasn't boisterous and lean, he seemed in pain, he peed in the house, he was low on energy and didn't eat normally. Now all I saw was what seemed like him taking very long for a pee, but he ate and drank normal, he bounced in and out all the time, coming in with his usual rush and big jump onto the table the last time I saw him... I reckoned, if he was poorly, he wouldn't want to jump and be so full on energy.. I'm very doubtful now however and wished I had taken him to the vet anyway, and also that I had given him a GPS collar. I worry that he might never come back. It happened to another (older, semi wild) cat I had once, 6 years ago. After relocating, she just ran off and didn't want the new house. Never to be seen again. This is a different type of cat however. Very attached to the house and his territory. 

I also had very strange feelings and thoughts about him suddenly last week. When he was still around as normal. Not that I trust or believe those thoughts, but his red cat sister died 5 years ago (car) and a few days prior to that, I had strange thoughts too, in a Sophie's Choice kind of way; what if I (theoretically) had to choose between those two cats (at the time both 1 year old and both really magnificent cats), and I chose Bassie in my mind, and a few days later she was dead. When I told this to a friend he replied in jest:
"Sophie's Choice" about the Nazi's, making her choose between her two sons, because they had a daily "kill quota" to fill or something? You mean they also made women choose between their cats?? God damn. I'm just gonna come right and say it.... Those Nasti'z are really mean!

NOW last week I suddenly started to think about how old Bassie is exactly and that if he would die, I would contemplate having him put up like they do with deers sometimes. Not sure how to call that in English. Not that I really would do that, that's even too much for me, but I now am very worried that I had some creepy 'omen' kind of thought, again, and that it was some sort of a sign, again, of things to come. (Add the shrieking violins in the background with your own imagination). I know, crazy thoughts..  

I still hope he had the Spring Blues and will come back. He has never been away for more than the skipping of one meal so far though :(  Feeling like a crazy cat lady. My skin is also burning and broken out in p&p's. Emotions emotions. So far 2016 has been an utterly SHITE year for me. Nothing but losses, drama, heart ache and misery. Damnit. And sorry for all the cat talk. 

June 4th 2016

I have been reading posts about having your cat ran away on cat forums tonight, and also an article in the Telegraph titled 'My cat died, and it affected me as much as losing my dad' (I know, I know, quite a strong title/statement). Unfortunately my beautiful red male cat Bassie has not been home for 3 days now. He is an outdoor/indoor cat, basically as he pleases and it's a safe place to live here, with no dangerous roads or car speeding. I love him to bits and it sounds probably so ridiculous to people who don't have cats in their life, but he feels almost like a family member. Had him since he was 4 months old (now 6 years old) and we had cats all our life at home, growing up, but Bassie is something else. He always used to come with me on my evening walks, just walked along with me. He knocks the window and rambles with the post box when he wants in to get a snack. He sits with me when I type on the computer for work, staring at me, purring, biting my nose at times, just, being there. He sits next to me at dinner if I let him, always polite, never a paw on the table, eating all the vegetables and meat he is allowed to nibble on. He comes running towards me when I come home and scratches the door until I leave him in. He even sits on the bathroom sink when I shower, miauwing and joining my singing. 

He had a kidney infection a few years ago and ever since I am trying to give him special food (he is neutered) and watch for recurring signs. The past weeks, he seemed to urinate more, drink more, whine a bit more than he usually can. I postponed going to the vet, because he acted pretty normal otherwise; normal appetite, normal swagger and behaviour. But, different is that he hasn't been coming home for the past days. Not in the morning for breakfast, not at 5:30 sharp, as usual, to demand his dinner. This cat lives for his food :'( I have been through all the emotions the past days, literally crying at the drop of a hat. Obsessively thinking about my cat. Asking neighbors, calling him, walking through the neighborhood whistling and calling his name. When I come home, or wake up, there is only one thought on my mind: DID HE ALREADY ARRIVE BACK HOME?? No..  I worry that he needed to be taken to the vet and that I left it too late and that he curled up and died somewhere and we will never find him back. I worry that something else is wrong.

Neighbors say; Oh it's spring, he just had a wander, he'll be back. But he has never just disappeared. Then today, a neighbour said she hasn't seen her own ginger male cat for some days either and when she thought she saw him a day and a half ago, it was our Bassie. By then he hadn't been home for 1,5 days, so I have hopes now that he will come back. I can't help to feel completely sick with worry and dread however. I can't describe the awful pit in my stomach, and feel pathetic to fret this much about a cat. But well.. it is what it is. My skin was pretty OK. before all this started but it's a big red burning mess now. Crying makes it all 100 times worse.


I wrote some more updates right before the cat went missing, here they are:
it has been nice spring weather over here. My skin hasn't been too bad. I've tried to stay cool and focused on finishing some work projects, making evening walks and watching tv series mainly. See a few friends occasionally. Read a book too.

A friend has written the most lovely thing the other day*. It really touched me. I had told her about a very unpleasant person who, for a little while, had tried to wiggle her way into my private life. It caused some drama and on top of that, she tried to ridicule me over my skin condition, calling me a vampire. She said it with a very dismissive, sour face, which gave me the impression that it wasn't the fantastic wonderful vampire that Winona Ryder played once she had in mind. But rather; a pathetic weirdo (my interpretation). I do not really know this person and neither does she know me, or what makes me avoid the bright hours of sunshine. Or my long history with all this. The ways in which it affected my life since the age of 19. She also doesn't know about how hard it is to be out in public when your face is deep red and people are staring at you. Or about the burning pain it gives. How difficult it is for me to avoid all my triggers and to try to live as normal as possible. She just knew that I have 'some sort of sun allergy', and how to use it against me to make me out to be some crazy oddityIt made me angry.
My friends (also has rosacea) nice post:

*"I am writing this for all the wonderful people I have met that carry the same burden as me. We have Vasculitis of the face, eyes, and ears. We are suffering. This means our blood vessels dilate to a point that literally scalds our skin..it's painful, it's torture. We don't love the cold, we don't hate the sunshine, and we're not lazy. If you work in a store and have to ask us why we have a fan with us or look sunburned then you need to stop being so cheap and turn your ac on, it's 95 degrees out for God's sake. Someone I deeply care for was called a Vampire..we are not vampires..we are beautiful caged birds trying to break free, unable to fly with weights on our wings. We seek compassion, not judgement...we just want to wake up and believe each day will be better than the one before and,try not to feel guilty or sorry for ourselves, as we think about others around the world that suffer with daily pain. To Scarlet, X, and X,, with lots of love. Find peace today.

Another friend joked: 
"Vampires and cowboys are totally looks I want to go for anyway so rock it haha add pirate to that list, I'd love to look like a pirate xD"

I also went to the dentist a few days ago. BRRRRR, nightmares for weeks already. I see the one my mum also has, because he is understanding of my allergies and an alround cool dude who takes my health serious, but the down side is that he is stationed in a town 1,5 hrs drive away from me. Which in Holland means you have to cross 1/3 of the country first.

Lately, I had been inspecting my teeth with the eye of Sherlock Holmes and a construction site lamp and saw some little dark pit in a molar. I also had some nerve shooting pains with sweet food (not that I eat much sweet food but also with cold water). I was pretty sure that black dot was a cavity. I don't want them, I have trouble with filling materials (allergies) and I never had any cavities in my life until two years ago, which was a lot of trouble. Ever since I've ramped up the maintenance work with brushing, flossing, gumline flossing, home made brews of coconut oil and calcium powder and minerals, to keep my beautiful pearly ones in great shape. Oh and hardly any sugar, which was the hardest part.
But that black thing bothered me and in some other far away molars, I saw some darker fissures as well. Bad bad bad news I was sure. Teeth pulling perhaps even. Made me very nervous and so afraid that I postponed the check up for 2 years, all in all.

Still, the other day, driving up there, I was sick from stress. Even in the car I thought of cancelling the appointment. But it turned out I hypochondria'd for nothing :)  All was looking good. The nerve pain appears to come from a minor exposed tooth root, very normal looking according to the dentist. The black dot is just a little pit in the dentin and it looks dark because... it is a pit. But it was solid, not soft, and more like a little stone that formed inside he said. No cavity and not a cavity in the making either. PHEW! Didn't know how soon I had to get out of that chair. Oh and the bonus point; gums were in great condition, hurray, pass me the chocolate now :) 

Yeh I'm feeling pretty invincible right now, I'll admit :D

One day of sugar pigging out today, then back to the caveman hunters diet. It's interesting.. I did some reading up and cavemen, you'd think they had horrible teeth right? But only a small percentage of them had cavities at all, most had perfect teeth. It only went downhill once the hunter/gatherers were replaced by farmers. The idea now is that grains and sugars and carbohydrates that are made into sugars are to blame. So sticking to meat and vegetables would be best, and I'm trying my best in that respect. Normally. Despite today. I ate too much sugar today. Not straight from the bag.. asif. It was cleverly disguised as a snickers for instance. Then that sugar rush causes lethargy and cravings for more sugar.
Homer knows what I'm talking about;

What else... The TV series I've been watching mainly is called Peaky Blinders and it is pretty good, for European standards.. A real life story (but dramatized) of a Birmingham family that goes into crime after WW1. It's really very entertaining and season 2 was a treat, lots of pace and nice twists and turns and exceptional acting. Two of my favorite actors are in it, Cillian Murphy and Tom Hardy. Sam Neill played an Irish detective, dead set on exposing the Peaky Blinders (name is said to be derived from the practice of stitching razor blades into the peak of their flat caps which could then be used as weapons) and their stashes weapon supplies. Every time something is missing in the house, or friends and I are looking to find something back, we now say "Tell me where ore the focking gons".

In terms of entertainment, I cannot omit that we watched the Eurovision European Song Contest this year.. And it caused a lot of complaining. Russia was mostly peeved that arch rival Ukraine won and it beats me tbh why, because the song was not that very great, I thought. In respect for the Great Russia I tried to tingle their anthem on the piano.

It almost seemed as if Ukraine won because voters had politics in mind, instead of music. Or maybe it's just me who didn't like the winning song, and besides, what does it all matter in the big scheme of things :) Besides, countries have voted for their friends and against their foes for decades in this competition.
Back in the days they had a live orchestra. Here are a few oldies from the euro song festival that were fairly good:

I don't know when voting exactly turned so political correct. I also like to see how the stages change with the decades. Johnny Logan for instance, the late 70s/early 80's, you'll see these strange stairs always on stage. It happened all the time then, see this one for instance. And also the make-up is very decade-orientated of course, in this and this late 90's UK/Swe winner there is still that awful nude coloured liver-like lipstick used (yes I used it too in my teens haha).

I also saw this article on young people having hundreds of facebook friends these days, but nobody who attends their birthdays;  

Book wise, I'm wrestling myself through Middlemarch at the moment (George Eliot, 1871), which is dreary but has good bits. Very hermetic posh language choice but when you strip it down, not much is said and happening, just the antics of a small village and its people. There's a town doctor with ambitions, a town beauty who is scheming, all the typical English ingredients for village drama, including the stereotypes. But, written by a great observant with excellent writing skills. I look forward to something more contemporary and with a bit more speed though. Middlemarch is even slow to my taste and I'm used to 600 pages Russian elaborations on mental states and drawn out dialogues..

In Holland, even in the train, the bus.. it's such an overcrowded country and literally everybody is on their cell phones it seems. Even in bars. I saw a really interesting documentary about it, it featured this clip from Brazil as well:

José Pedro Bortolino made that add. You put your beer in the beer cooler, switch on the button and the gsm-signal in your direct surrounding will be blocked. They developed it to make people think and create a discussion about just how much people are distracted by their cellphones etc. In Brazil people are said to be online literally 24/7, they do not live in the moment anymore but in virtual reality. When you are drinking beer with your friends, you should interact with them, and not be a slave of your smart phone, he says.

The docu was about how the world is becoming connected rapidly. There is hardly a spot on the world map that hasn't been made interconnected through mobile telephone masts or wifi. The aim is to allow every inhabitant of the planet to be online by 2020. So nowhere you have to be offline anymore, and everybody will have a smart phone most likely. What will that mean? Will the world become a glass fish bowl type of place? And the inhabitants from glass too, because you can be seen and traced everywhere? The docu focused on 'white spots'; rare places on the world map without network for internet or mobile phone. They are rapidly disappearing. And do we even want to be always online and available?

Facebook and google, companies like them, are ahead of regulation. They can basically do what they want and experiment how they want. By the time the legislation of different countries have caught up, they are so far behind already that it is a lost race usually. Google is currently using floating modems on hot air balloons, to create world wide coverage. They refuse to get into a conversation however; interviews are declined.

There is talk and planning of 'the internet of things', where little transmitter senders are attached to paint, clothing, car tires. Do we even know what effect that will have on humans and our health? There are people claiming to be electro-sensitive, they have a terrible life with all the wifi and radiation already around us, you cannot avoid it anymore unless you go and live in some of the rare 'white spot' areas (poor/middle of nowhere). They just produce new technology and implement it, without long term health studies, and legislation allows companies to do their thing in the name of efficiency and progression, and before you know it, there is no way back anymore. Technology and businesses rule the world at the moment it seems? To me at least...
But anyway, this docu was also about the effects of having constant online activity, constant use of smart phones, and how it distracts us. They interviewed Sherry Turkle, a university teacher at MIT, who used to be enthusiastic about the possibilities of the internet, and allowed her students to bring laptops and mobile phones into her college classes. She thought it would enhance their experiences; they could look stuff up. But she changed her mind. Students now have to hand in their cell phones and laptops at the entrance. Because in reality, it made her students lose concentration. It took her students away from the conversation in class and from interacting with other students. It was distracting them; they were shopping online or on facebook. And it also distracted the people sitting next to them, even when they didn't use the device themselves. Not anymore, they are forced now to hand them in and to be on the now. Research shows this effect as well. Totally distracting. 89% of Americans say that in their last social interaction, they took out a phone. And 82% say that it deteriorated the conversation. Funny point; people are all the time doing something of which people know that it isn't really good for them. Interestingly enough, it is especially parents working in Silicon Valley, the elite, who want their kids to go to Montessori schools with low tech education; no i-pads and i-phones but long conversations. Yet, they make sure the rest of the world has a lot of technology dominating their lives...

They also interviewed an Armenian poet, Aram Pachyan, who decided to live entirely analogue a few years ago. No more technology, just typing on an old type writer. When people called him, he felt they not only have his number, but also his life. He was an avid twitter and fb user when they were first launched, but developed an unbearable physical tiredness, and in the end didn't even pick up his phone anymore. Phones and computers distracted him so much that he couldn't concentrate on writing anymore, and he even went as far as saying that he felt he was suffering from memory loss whenever he looked at computer screens again, because social media were always lurking close by then. He felt depressed and cut off all social media and devices. Now he feels he has time to think again and to work.

Many apps and websites are designed to become addictive. In order for you to check in and return as often as possible, generating as much data for them as you can. Maybe people are starting to realize soon that there can also be too much of a good thing. Too much internet and mobile phone use. I love the south of france because people live there like in the 1940s. Hardly anyone stares on a cell phone, everything goes at a slow pace. But that is only a matter of time probably, before it gets as bad there as in the big cities. It makes people stressed out I feel, not concentrated, distracted. On edge, chased up, when you combine it with a busy life/work/social life. Plus all that online activity. It is almost like people in a bar, looking more on their mobile phones than actually interacting with the people in front of them, prefer their virtual reality online life over the real world.

Sometimes I am so very annoyed with the lack of medial discoveries, the lack of advancements for the treatment of rosacea, but also for some other chronic conditions. Then there are other conditions where huge progress has been made. But there is plenty to discover still. Maybe we just do not put the money into curing diseases, or advancing technology. In a way, AIDS research (very important of course!) was stretched for thirty years it seems, because perhaps sometimes it is more profitable to look for a cure than to find a cure. The common cold and influenza is a very profitable businesses. Tissues, cough drops and syrups, antibiotics, nasal sprays, chicken soup, anti-bacterial soaps, and hand-sanitizers. How much profit would disappear if we could dispose of the common cold? Polio crippled and killed people. We had scientists that could afford to find cures then. Cancer is also a big business. Chemotherapy is not cheap. Could we make it cheap? Absolutely. What’s the profit in that though?
(picture is with La Roche Posay make up on)

There are new cancer treatment meds on the market, which seem to really have the potential to halt certain types of active cancer. A girl in my town, in her mid twenties, has battled in the media to get her hands on them. Her doctors in hospital have done all they could to get their hands on them. Court cases, claims to the Pharmaceutical company who makes it, after months and months of claims she is approved for it and dies that same day. Those medication.. I realize that years of investment and research goes into them and that companies whoms aim it is to be a profitable company, need that money back. Through the prizes of successful medication. To also cover the costs of trials and medication ideas that never made it through all the test stages perhaps. But at the end of the day, medication shouldn't be a trading commodity in my book, not a means to get big profits over. Governments should ideally ensure that tax money is used to offer good health care and education, for all of us. Not just make the best health care affordable to the richest.

A friend said to me in this regard: I sometimes look back at the old scientists, the idealists, the dreamer types, times when people funded science simply to see where it would take us. It may lead to technological advances, or not. At least we’d given it a shot. We’d exhaust the line of inquiry and move on.

Has too much already been invented for big, massive, jaw dropping inventions to be made? Not thinner/bigger/smaller i-phone screens, but the serious important discoveries. Or do we lack great idealistic geniuses like we had them a mere hundred years ago perhaps? The level of 'discoveries' these days seem for a big part being attuned to consumerism, making our lives easier, but not necessarily better. Scientists being funded by big organizations might not help always, in that respect, if therefore it might need to have an economic benefit for the benefactors. Compared to traditional, idealistic 'truth searching' scientists of the past, perhaps. I might be wrong for sure though on this one. It's just a feeling.
I've been waiting a good 15 years by now for some treatment of my own conditions and nothing has been developed apart from more creams and antibiotic derivatives. It's cynical to think that big pharma and co have no interest in finding cures anymore, but it goes through my mind many a time.

Another friend wrote me in that respect however:

"I think in medicine we have come a long way. A family member died in 1984 aged 32 from a heart condition. Had it been nowadays, he would've lived a pretty full life. I used to see the first every heart transplant recipient every Monday because she came to see the doctor at work. But I did think by 2000 we would had flying cars :)"  

And finally some art:
Quite a spectacle, literally :)

In modern arts defense: It says something about contemporary art perhaps, that everything can be art and museum goers get confused about anything. There is a lot of good modern art out there as well but time hasn't created the distance yet to sift the good from the mediocre. We remember Monet and Picasso, but nobody even knows about all the crap artists gallivanting about back then. Sifted out by history. Right now we get to see all, the good the bad and the ugly, but modern art does seem a bit confused at times, for sure