I am not a
fond lover of Christmas, never have been. Nor of New Years eve, Queens Day or
any other common community gathering. So often I go on a getaway to help
out with a group of mentally impaired people during Christmas. It's the same organization but
there are different participants every year, although I start to see a pattern
in recurrent 'people's types' (just like in the real world basically). We cook
eight meals a day for them (they love their food, so a three course meal in the
afternoon and in the evening), go on excursions, play games, go on walks and
most fondly loved; organize karaoke evenings. I use my laptop and plug it into the stereo for better
sound. On youtube I look for songs that also give the lyrics written out, and
there is a microphone and some disco bulbs. Voila. For
Christmas eve we cooked honey roasted chicken, potatoes, carrots, apple
compote, and puffed pastry with goats cheese, pear and courgettes/zucchini.
There were homemade American style chocolate/cherry pies and Swedish tea rings
with cinnamon. No one is allowed alcohol obviously and the 2 staff members are
both Islamic so I was very happy to not be the odd one out on that front. 
Walks
outside take about 5 times as long as usual, but there are more laughs as well.
Frederic, one of the male guests, is always dressed in black jeans and a
leather jacket, often donned with a black t-shirt with skulls and zombies on
it. He is most friendly and has an incredible memory for musical facts.
He can walk with me for 2 hours, enumerating endless lists of singers, albums
and album tracks without interruption. Don’t I know that one? And what about
this song? It was recorded in Dallas in 1976, didn’t I know that?? And so on. He
does a delightful impersonating of Michael Jackson (says Maikaall Jahkson), including the hat movements (with my hat on), the moon walk and the high pitched cries, he loves singing November Rain from Guns n Roses. My friend J wrote about it; “Axl rose eat your heart out”. He also likes Kiss, Metalica, Johnny Hallyday and Depeche Mode. Nobody else knew the lyrics or even the tune of Enjoy the Silence, but I helped him to sing it, as well as Zombie from the Cranberries. Frederic did the head banging scenes himself. We had a
blast at the bowling alley on Christmas Day and I was the proud loser of a
group of 17 people in total :) At some point the handicapped came over to
help me and I finally managed to hit some pins after rolling the ball with both
hands at the lowest pace possible. This to big amusement of the group. In my defense
I have to say that they all played with side bars, so the bowling ball bounced
back like a pin ball. The winner, a guy who can only use one arm (the other one is paralyzed) and
has a hard time walking straight, but had a massive score by hustling the ball with
great force against this special railing and it often miraculously knocked down
all the pins, haha. It was more fun than with less motorically impaired people :) (I received a message that in this day and age, I can't say 'handicapped' anymore. That it is disrespectful.. I never meant it in a disrespectful context, and this is Europe and not the USA with its paralyzing PC-ness, although it's coming our way....)
There are three couples in the group and I always notice how sweet and caring they are for each other. Very nice to see. Yesterday was the 19 year anniversary of one of the couples, they met when they were 7 and kept counting from there on :) My skin is
not doing too bad, but I worsen things by relishing on the wrong foods here.
Pre-tasting etc, but it’s still all good. I am taking 100 mg of plaquenil a day
now and apart from a few outbreaks and a bit of insomnia I am doing well. Had
some big pimples yesterday morning, like big (I am not used to this being
subtype 1) but it might just as well be a result of that toxic chocolate/cherry
pie.. Put zinc cream on it and although they are still there, at least they
look white instead of red now. I am not distressed by them, besides, there is a cause that I can point to. Back to the healthy diet from today on. Eyes
are still a bit dry but I have lubrication ampules now that I use
daily and they help a bit. I want to give the plaquenil at least 3 months now
if possible and see how I do then. So far I think my skin is a bit calmer. The heating is on of course and set
a lot higher than I would normally prefer it on, but the kitchen is cool so I sometimes hide in there.
There is a small fan as well there. When the wood fire is lit in the evenings
in the fire place in the living room, I get more flushed also, but they love
it so I grind through it.
Today we
did a pantomime game where everybody had to portray a thing or a person that I
had written down on pieces of paper. Without making sounds. Someone had to
portray a cactus, another person a road, Michael Jackson or a pancake. We did
some dressing up with old clothes from the attic and my many weird hats and
even a few old wigs (fear of dying my hear, but never wore them as they are
make your face too hot). I had to dress up with a hat and a fake pearl necklace
and when we uploaded the pictures, one of the creative minds wanted to
embellish them with a mustache, whiskers and spots. I will add a few of the results below, they also made a Marilyn version of me gone wrong, one with a Hitler mustache and a terminator lookalike, haha. Am tired sometimes from the ongoing kitchen duties, endless washing up and the ongoing questions, but it is so much fun at the same time. The group becomes familiar with you at a very quick pace, basically as soon as they are in the door and you cracked a joke with them and the laughter they bring is heart warming.
My skin is doing well with the plaquenil but my eyes are gritty and sore again, despite eye drops :( I want to keep using this med so I am grinding through, but it really is an annoying side effect. Why can´t it ´just´ work? Cause I think it is working: less flushing, less red, maybe a few red dots that I usually don´t have but they don´t bother me and are minor. Just those bloody eyes...We do a lot of walks here and games. We celebrated a 19 year anniversary as well yesterday. The couple met when he was 7 and she 9, and they are still going strong. Aaawwww :) Here are a few pictures.
Here I read a post from someone else who mentions sore eyes while on plaquenil. It is a bit annoying, although understandable, that the general response to people mentioning the eye dryness and soreness, is that this might come from the condition they suffer from in the first place. Either lupus or Sjogren´s or occular rosacea. But in my case I know 100% certain that it comes from the plaquenil. I tried it at least 3 times now -with proper intervals- and the only times the eye problems arises is when I am on this med. I just know my body well enough when it comes to disease and medication and side effects nowadays. It is frustrating that there is information out there about the very rare retinopathy, yet almost nothing is explained about just plain sore eyes. I don´t have halo´s or light flashes and I am fairly sure I don´t have retina damage either. Heck, my dose is so low that it seems almost impossible for that to happen yet. But there must be something in the plaquenil that makes my eyes feel so burning and sore almost straight away. Will keep looking..
Eye burning Plaquenil
Oil glands in the eye
Plaquenil Headaches
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31st of December
still having some outbreaks and one annoying one on my right cheek has been there for over a week now. I put zinc cream on it but the one I used was quite over date I discovered today, so bought baby rash like zinc cream now. Here are some pics of what it looks like before the zinc is on and after. Great timing with New Years Eve coming soon now :/
Happy 2013
and a healthy one especiallyI am doing ok skin wise but can surely still flush I noticed last night. Had to bake pizza's in a hot kitchen for 17 people and got a massive flush from the stress and warmth. After cooling down in a cold room for an hour I managed to calm matters down again luckily It was a jolly night after that, luckily there was a camp fire outside so it cooled down in the house with constant opening doors. My eyes are still dry and gritty but it's not getting worse, perhaps there is even a few % improvement. I have not been able to eat healthy, at all, the last 10 days so now that the handicapped are gone and I go back to normal life, I will skip all the rubbish (delicious) food, get the daily exercise back up and eat healthy again. I do miss the hustle and bustle and the happy faces now, however :( And the daily puppy dog watching visits
9th
of January 2013
Having a bit of trouble with my face. I don't understand how
the plaquenil seemed to improve matters for the first weeks and now it is one
burning red mess for 5 days already. Same pattern basically as the first time I tried it. The logics and mechanisms behind it are really wasted on me, I don't have a clue. Been burning up all night, woke up
completely swollen up and red and broken out with cheeks that felt like they
were glowing from fever. I don't know what to do cause tonight is the concert
of a band I really like in Amsterdam. I look like shit and my face hurts
terribly. I am cooling with cold packs and fans and I can drive up to Amsterdam
(2 hour drive at least) and take a train and tram for the last 30 minutes, to
avoid city center car driving, stress and parking drama's, but I don't want to
get even more hot and flushed from public transport. The concert last October had the same scenario basically. Not
sure what I will do, think I will go nonetheless. I talked to my friend Sam from the
UK who has a similar rosacea case as me and she said she used plaquenil in the
past and the first 2 weeks were ok, but after that she had a massive
deterioration and stopped taking it. I might be having the same issue, I am
wondering. I did really a bit better the first weeks but this flare from the
past sort of week is really ferocious. I think I will stop taking it and
sit out the x months of down time, I wasn’t doing too bad during the summer and during the Paris trip and I was just on my regular meds then. Trying out new
things can be a bit stressful when things don't go to plan :( What causes what, were there other factors at play that might have interfered with the outcome. Etc. Am stopping the plaquenil for now. We went to the concert after all. Drove all the way into the city center of Amsterdam to park the car in a ridiculously expensive car park, but who cared. I took ice cubes with me and a few coldpacks and luckily it was freezing cold outside, so we had a long walk through town to cool me down even more. It was a bit of a tour anyway to reach the concert hall. Have been chewing on icecubes throughout at least half of the concert (in one of the most beautiful concert places in Holland, Paradiso) but it was great. The other half I wanted to sing along. Made pictures and wanted to make a video recording of my favourite songs, but had been too clumsy to leave the memory card in my laptop at home.. Realized that half ways in the car, so too late to turn around. The camera has some own memory luckily, but not enough for any sound recording. Came out red but glad as well to have gone. Can't wait for summer.
14th of January 2013
skin continues to flare up more than normal. I wake up flushed and red and burning every single morning, which equals to me being just a little bit grumpy for the first hours of the day. It cools down later on though. Suspect it to be a combination from A) the plaquenil down time and reaction to it that has to wear off and B) it being very very cold here and my seb derm and rosacea playing up as usual in response. I had a busy week and have a busy week ahead with appointments and birthdays and outings etc, and when I feel like this I rather stay in bed with a laptop to work in a cool house with no one there around me. But well, that's not always possible :) So I have spent a day and night in a roller coaster theme park with the family yesterday and had a birthday dinner with my best palls tonight. All attending red faced but with a smile and when the people around me act normal, don't tell me too much that I look bad or swollen and just act happy and like they don't notice my cold packs etc, I am fine. Luckily these people all know about my skin problems (although it is way more than that obviously, rather a systematic immune issue, blood vessel problems and inflammatory tendencies, but I rather keep it simple).
The theme park was great.
It was freezing cold but I had a bunch of bouncing nieces and a nephew that was
sulking around me and the other adults of course to have a good time. We made
fun of all the fairy tales that were depicted and went in freaky roller
coasters for hours on end. The cold and most things being outside was really
really good for me. I skipped the dinner
in the restaurant and had
apple pie, the least toxic of the offerings :/ I love how the teenagers
never seem to bother what my face looks like. The niece of 15 had quite pronounced outbreaks all over her face, skin colored mostly but the small bumps
were literally covering her, but she didn’t seem to mind it one bit, was happy
and jolly and in a sincere manner too, and all the other teenagers in the
family had spots, so maybe that helped; we were all in a (temporarily) sort of
similar boat, and nobody mentioned it, or cared. As it should be. Had quality time
with the adults as well, although the banter with the kids was the best.Tonight I celebrated the birthday of one of my best friends. We used to compare ourselves with the 3 musketeers for some time :) Friend has battled depression and some personal problems the past years and was hospitalized for it as well, which was very distressing and took a lot of care and attention but he seems to be doing ok now and is back to his old self, which was a pure joy to experience all night. We went to one of our favorite Moroccan restaurants in town and had a really good time, like in the old days again. One of the pressing dilemma's we discussed was what we would do with 30 million euro if we ever win it in the lottery. That price was recently given to a person in our province. We would all give plenty away to our friends, make a proper trip together, give some to a reliable charity (or build the school/make the well ourselves there if possible and I would give plenty to a dependable rosacea institute too to come up with some cure - and force the others to do the same if they would win) and would put something in the bank. Oh how politically correct an answer haha. We would also all continue to do the work we do now, have the life style we have now and not change too much as that might cause depression to the people who did have their lives turn upside down too much. We discussed other friends, local talk and an Oprah episode where they followed homeless people who either won the lottery or received a big sum of money from family members and most of them, if not all, returned back to the streets within years, having spent the money on booze, drugs, drinks or cars they had demolished along the way. Moral of the story: you can't or shouldn't try to rise from the surrounding you feel. comfortable in. For us that is bohemian, artisty, poor, slightly off the beaten tracks and low paid work for some reason. The friends family members are mostly business men and he is definitely the black sheep of the family, but also definitely the most fun to be with and the most sensitive and caring one of the bunch. Etc etc etc. I was red of course, and it was warm in there. My favorite dish, lams rack in honey sauce with dried fruits from a tajine (oven dish) isn't something my skin likes. But what the heck, I was red already anyway. Still cooling of from it but it was great.
15 January 2013
Red, red and flushed, still hanging on and sitting out this flare up :/ I wake up flushed and go to bed flushed and it's starting to get really draining. I think it is the result of a combination of the plaquenil and the cold winter weather. It is below freezing point here and has been like this for a good week. I try to stay away from pro inflammatory foods, hot rooms etc, but having a lot of appointments with friends and family so you can only go so far with all that avoidance. Maybe for the better. I have some seb derm too again around my mouth and on the inner cheeks, near the nose. I use my cream from cetomacrogol with 2% ketoconazol mixed into it. The pharmacist leaves the preservative (sorbic acid I think) out so it is only meant to be used for a month. Some rosacea friends are having currently good success with botox treatments and are having less flushing and redness and burning. I am really considering that in the further future. I will sit this flare out and start trying out natural anti inflammatories (herbs and supplements) once things have settled a bit again first. A post about natural anti inflammatories is in the making.. For some reason the lighting of the camera makes the redness look less red in the pictures by the way. I am glowing in real life and super red.
My Godchildren and my nephew below them
