22 August, 2014

Update plus some music and videos which make me laugh, when feeling bad


(updated October 1st 2014) I will share a bit of music and some videos I have been wrapped up in lately. 
Please read ongoing updates on every day life here. 


My skin is doing fairly good, as long as I stay cool. Bicycle rides have made me very flushed lately, I guess due to the summer weather, so I stick with walks which are less strenuous. I speak to a couple of other rosaceans and we all seem to deal and struggle with the same things. When your skin flares and it's all in the dumps, you focus on getting through it and have this tunnel feeling, but once thing go a little bit better again, you feel how bored you can be and all the things you miss out on due to lifestyle restrictions. One wrote me; "what will happen if my rosacea stays for life? I will go mad. After rosacea I lost everything; health, money, social life, everything." But I know so many who struggle with this as well; how to live with rosacea? The better my skin is, the easier it is, but that seems an open door almost. 

Beautiful European ballet, from the late Pina Bausch with music from Balanescu (Aria) on anxiety and fear

Nice and inspirational speech



And here is for something else: I challenge you to have a look at Patrick the wombat and keep a straight face :) Wouldn't it be a good one if you'd ask friends if they feel like taking over a guinea pig, the one your kid/niece/parent is tired of looking after, and then showing up with this :) I saw some wombats when I was in Australia, but never this big, awww. 





First I saw this very touching short French animation yesterday. It's about mental illness and schizophrenia. "91cm is not a long distance. But what if your hole world shifted 91cm? How will you face it?"


This video always makes me feel good and I must have already watched it a few dozen times :)
This is an Aussie band, they are very kitsch lol, but the clip, I can't stop smiling when I see the clip. They are from Melbourne and the clip is from 2012 but they shot it as if it is a 60's type of post war Soviet video and then promoted it as such. There were online discussions in Russia from music connoisseurs whether or not it was really a long lost soviet video or not  Some thought it was!! Others thought their accents don't sound Russian enough and fairly so. Anyway, love reading stuff related to the Great wars and love parody and silly dances, so this one is just for laughs and crazy surrealistic fun  The song itself starts after a propaganda build up of about 1 minute


This is a video where two guys do a dance routine called Popping. Always love watching it:


Also saw this great video from David on evolution, collective learning and the history of our planet:

A girl from my town sings this song, she has studied Irish music and was a friend of my ex who came for dinner now and then. She is insanely talented I think, has a hauntingly beautiful voice and she and her band played in the Irish pubs live sessions. I am always very touched by her song rendition of a Yeats poem




Yeats, THE WITHERING OF THE BOUGHS.

I cried when the moon was murmuring to the birds,
'Let peewit call and curlew cry where they will,
I long for your merry and tender and pitiful words,
For the roads are unending and there is no place to my mind.'
The honey-pale Moon lay low on the sleepy hill
And I fell asleep upon lonely Echtge of streams;
No boughs have withered because of the wintry wind,
The boughs have withered because I have told them my dreams.

I know of the leafy paths that the witches take,
Who come with their crowns of pearl and their spindles of wool,
And their secret smile, out of the depths of the lake;
I know where a dim moon drifts, where the Danaan kind 
Wind and unwind their dances when the light grows cool
On the island lawns, their feet where the pale foam gleams;
No boughs have withered because of the wintry wind,
The boughs have withered because I have told them my dreams.

I know of the sleepy country, where swans fly round
Coupled with golden chains and sing as they fly,
A king and a queen are wandering there, and the sound
Has made them so happy and hopeless, so deaf and so blind
With wisdom, they wander till all the years have gone by;
I know, and the curlew and peewit on Echtge of streams;
No boughs have withered because of the wintry wind,
The boughs have withered because I have told them my dreams.



Also watched about 10 times to this great music video from Sia. Such a nice song but also, what young dancer! Sia is an Australian songwriter, who deals with an auto immune disease as well Graves disease), she has borderline, deals with depression and alcoholism and she writes poppy hits like Rihanna's Diamonds. But here she sings her own song and its about alcoholism. The girl dancing in it is 11, she comes from an American dance show called Dance Moms, I think she is magnifying. My youngest sister used to look just like that btw as a kid, the same blonde hair cut and also dancing and fooling around like that, its like going back in time. So this dance choreography is matched to the lyrics, the kid is home alone a lot, parents fighting, alcohol abuse, she fakes everything is ok and then has to live all by herself most of the time. "1,2,3 1,2,3 DRINK". This is 'art' to me too actually, although there will always be men who make scruffy comments about a pre-adolescent kid in a ballet costume of course. I find it so endearing, the girl, Maddie Ziegler, dancing the way she does, doing such an impressive adult like edgy choreography. Such emotions she put into it.


Something that interested me a lot is that Sia chooses to not perform with her face to the camera often. Neither in interviews (although there are some where she does). I understood that it might have to do with the Graves disease ageing her prematurely, or maybe that she wants to keep the mystique up If I had to perform some day with my rosacea I would surely have copied her solution; here she performs the song live at Ellen's, with her face towards the wall :)


And this is to laugh lol, here a girl tries to do the same dance moves in a parody :)

A fake video, but very funny (to me) nevertheless; don't touch your teenagers games!! :)


Another crazy video is from a British ski jumper called Eddie the Eagle. He was pretty bad at it and a pretty colorful character too (including dated glasses and funny faces).
Always makes me laugh too:


I also feel a bit better when I watch football (soccer for the Americans among us) penalties going wrong :)   https://www.youtube.com/watch?v=wlR_0vkWXfA&feature=fvst


My dad and I used to have a big laugh whenever we watched typical German music, called Schlagers. It is dead serious for them, but a music genre that makes us laugh. Jolly, would be a word to describe it, colgate smiles, exuberantly happy and sleek. Delicious to watch for a little bit and very difficult for me to not smile when I watch this one for instance:

Little Britain is a British sketch/comedy program. Here are 2 examples:


And Eddie Izzard on Engelbert Humperdinck:







http://www.viralforest.com/watch-1000-years-european-borders-change/

And some music I listened to recently:


And there is a movie which I really liked, it is called Tous les soleils and made after a book by the French author Philippe Claudel. It is both funny and touching. Deals about an Italian father of a kid living in France and his wife passed away and he is trying to rebuild his life. Has a crazy roommate (seriously funny, think Kramer from Seinfeld) and he sings in a choir. It is a sweet little movie with some good music. This song is in the movie, it is the Tarantelle



8 comments:

  1. Hey! I was reading your blog last year when I thought I have rosacea because my simptoms are very much like yours. My new derm suggested it was contact dermatitis and I did a test with 26 different contact allergens. It turned out to be a nickel and cobalt allergy. My face skin is VERY sensitive, gets very red on occasions, it burns.. etc. I never had papules or pustules. It turns out this nickel is everywhere.. in lots of food, clothes, cosmetics, make up... and it gets worse on the sun and when we sweat, in the heat. It my case my face is a bomb, I have to be very carefull. I just wanted to ask you have you ever done this kind of testing? Like I said, I thought I have rosacea and 5 derms have never suggested this... Maybe there is something more here, and it is strange that I get such redness only on my face and not on my hands while in contact with nickel. Just wanted to share my story.

    Best wishes,
    Sara

    ReplyDelete
  2. Thank you Sara! No I don't think they tested me on nickel and cobalt. I was going to ask, do you also get the redness on other body parts, but you already wrote me that it is only on your face. Perhaps because our facial skin is most thin and sensitive usually? I will ask for a test, or check if I have been tested already unknowingly in the past. May I ask, what products do you have to avoid now? Clothes; cotton and acrylics are fine or a potential problem? Make up, yes I can see the connection there. I don't use any nor cosmetics, only organic rubbish free neutral shampoo without even laureth sulfates. Also wear no jewelry ever, but the time I did wear a silver necklace I noticed a redder face, and just thought I was getting paranoid at the time. I will definitely look into this. Did you ever used to get face flushing as well? On top of redness? Thanks for notifying me on this, so very kind of you.
    Best wishes Nat

    ReplyDelete
  3. Hey! Yes, I have flushing.. not every day.. I connect it with food I eat, maybe it's the food with high amounts of nickel, I don't know yet. Sometimes I get red stains on my neck, but it's no big deal. Usually my neck is very hot and sometimes it itches, but all the madness happens on my face. I never understood why my face gets so red when I'm using my hoover, now I think it's because it's made of metal. I just got the resaults from my testing and I still haven't been to my derm. I don't know anything about clothes yet. Or cosmetics.. I hope there is nickel free make up. Which shampoo are you using?
    I'll let you know what my derm is going to say, probably next week. It's not excluded that I have rosacea.. but it's hard to say.. because sun and heat, and cigarette smoke can also make dermatitis worse.

    Sara

    ReplyDelete
  4. Oh, I forgot to say.. I'm 24 now, but when I was in primary school, I remember that I got rashes and redness on my chest when I was wearing necklaces. So, I guess I'm allergic to it for a long time. But my face wasn't that sensitive back then. It started in high school and during the college became worse. I'm using Bioderma and Avene products. Bioderma has tinted creams that can mask the redness and I'm okay with them. It's very hard to say what triggers my skin to react, if its not smt obvious, like the sun exposure without factor 50.
    Nice blog, btw. I've been reading it for two years already. :)

    Sara

    ReplyDelete
  5. I forgot to reply to your question on what I have to avoid now. Well, everything. Nickel is everywhere. :( Not just food and jewelry, but all things containing nickel, like keys, spoons.. I have to adjust my life to this. But it's strange how I never get any rashes on my hands or any other body parts that are in contact with these metals. It all reflects on my face. I have to avoid chocolate, all grains and legumes, a lot of vegetables... lists on the internet are different so I guess i have to see for myself. And also everything that has any aditives in it. I should eat organic food, LCHF actually. I'm just afraid I'm allergic to eggs and coconut flour, which I've been using for my homemade bread. So I'll get tested for food allergies as well. Whether it's rosacea or not, it's a pain in the ass. :)

    ReplyDelete
  6. Ah thanks so much for all that Sara. I need to find what tests can be done to detect nickel allergy. I bought a new fancy laptop and it's all metalic, no plastics, and I'm wondering now if my latest flares might be somehow related to typing on the metal all day and night (all my regular work has to do with typing too..). I use this shampoo (there is a picture with the ingredients mentioned): http://www.paleomadesimple.nl/de-traay-bee-natural/
    Spoons, oh my gosh.. yeh I can see how invasive it is to try to avoid nickel contact. I am thinking about wearing some very flimsy thin gloves in the future on my laptop. Not sure where to get them. How interesting that your rashes mainly manifest themselves on your face. It means everybody with rosacea symptoms could potentially have this (nickel) allergy issue at play as well (or underlying). Please update me if you want on your further tests and outcomes. It sounds like a massive jungle to get insight in what does what for you and our flares. All the best, Nat :)

    ReplyDelete
  7. Sure, I'll let you know. :) Thanks for the shampoo info.
    I did the epicutaneous patch test for standard allergens (26 of them). They were
    on my back for 72 hours. It looks like this: https://www.youtube.com/watch?v=7m0yldjZrys
    Ask your derm about that, it's a standard test. But test as much contact allergens as possible (if you
    can choose.. but there are probably international standards.)
    Yeah, nickel allergy is very common, especially among young white women.
    I'll see what my derm will say to all that. All the best to you, too. Sara :)

    ReplyDelete
  8. I already bought the thin cotton gloves for typing on my all metal laptop, thank you for the suggestion, the pharmacy sold them 3 pairs for only 4 euro's, yehh. The shampoo is only available in Holland I fear. But I'm sure there are similar types to find everywhere. I had the blood allergy tests, and I have normal IgE levels, so I think the derm and immunologist didn't see reason for test patches, but perhaps such contact allergies will not show up in IgE blood tests? I will ask my derm, thanks so much for this. Nat :)

    ReplyDelete

Please email comments to scarletnat@gmail.com or add me at http://www.facebook.com/scarlet.nat.3