28 June, 2013

The summary days arrived..



And it's almost summer again. I'm doing not too bad at the moment. My skin is clear and I can limit the flushing to an hour or two a day, tops, generally. The warmer temperatures are helping my skin. I think I heard this from other rosacea patients as well, but there is this difference between certain sources of heat; central indoor heating in winter is worse, causing me dry skin and bad flushing, but a natural summer breeze of the exact same temperature (or higher) seems not as much of a problem. Some remeron talk now; I've been sticking to a low carb, low sugar, low calorie diet the past months and try to exercise whenever possible, which has helped with shedding some of the remeron induced weight gain. Its not too bad, but having been naturally thin most of my life, up until the point of my remeron use, even a bit of weight gain shows very easily and quickly on me. There seem to be many people struggling while on this med. I have learned from an informative blog post about the way in which remeron exactly causes weight gain. Remeron suppresses the stress hormone cortisol, which makes you feel all relaxed and no longer anxious. This in itself causes your metabolism to slow down. But insulin also has a function of balancing insulin levels in the body. With decreased cortisol, the insulin levels shoot up, resulting in low blood sugar and a lot more of the body's energy reserves to be stored as fat. And on top of that, the low blood sugar makes you crave for food (especially the high sugar/carb/fat ones), worsening an already bad situation even further. I always ate like a boat worker and like the rest of my family, had 'fast metabolism' (if that even exists) and was very slim without much effort. Only around age 16 I gained weight when starting an anticonception pill for menstrual cramping pain (no I was a virgin until my student days people). That progesteron pill also made me gain some weight, and me being a chocoholic suddenly caught up with me. But once I stopped taking the pill, the weight fell off again. It seems I am susceptible to medication -induced weight gain... So now Remeron (and probably the propranolol and Xyzal-antihistamine I take as well) changed me back into a little chubster.

I absolutely LOVE remeron (mirtazapine) otherwise, as it has seriously reduces my flushing and burning, and also cut out the quite debilitating anxiety I developed at some point, from all this nasty painful flushing I had. I take too low a dose to have a real antidepressant effect from it anymore, unfortunately. Long story, which I wrote more about here, but basically mirtazapine has stronger antihistamine effects at a lower dose (7,5-15 mg) and around 30 mg a day noradrenaline effects start to kick in. Meaning; more antidepressant effects on your brain and less hunger pangs and weight gain at this higher dose. But since the antihistamine effects are beneficial for rosacea flushing, people tend to have the most anti-flushing effect from this medication at a lower dose. I settled at 22,5 mg every night, which still curbs my flushing, but also lifts the mood just noticeably. Leaves me with the wretched weight gain.. So now I eat less calories than I normally would, cut out sugars and try to eat a lot of fresh vegetables and organic meat instead of kilo's of pasta, and I try to keep up with exercise - I try to walk 10 km in the evening if the weather allows it, so not too hot and a bit of wind is required- and still I'm heavier than I used to be. I know that there are ways to limit the extra weight, I did it in the past. Mainly by stressing constantly and not eating.. But that's not a healthy long term strategy. So I have a daily battle with hunger pangs now, a deluded brain that thinks the body is in starving mode and a sudden preference for 'death by chocolate' Belgian ice cream and spoons full of Nutella with lots of bread. It's not good and I'm strict with myself, have all the bad foods locked up or trying to not buy them at all when I don't have to host anything. Literally, locked up. It's pathetic, but before starting these meds I never even was tempted by that sort of food. Only exception was chocolate. I could eat it all without any type of punishment in terms of red face/chubby flaps and still didn't feel like eating most of it. I just wasn't that interested in food. But the remeron helps me too much in terms of flushing blocker and inflammation cooler to discontinue for a 'minor' reason like weight gain. Besides, every time I did in fact tried stopping this drug (because yes, I am human and I did think several times that I could do very well without this devil's poison, and that I would in fact feel happier with my old skinny minnie figure), the appetite went completely dead, to the point of having to remind myself in the evenings to have some breakfast, something absolutely impossible while on remeron; the extra pounds evaporated but the flushing came back full force. As well as the depression I thought this drug wasn't touching much. Turned out it does help with depression, even on a low dose. Dealing with an empty stomach is slightly less horrible than a constantly hot and burning face I reckoned every time, so I made the choice. But now I have the appetite battle on top of the rosacea (which is more bearable, but by no means gone).


I spent some time with my sister on holiday, in the Ardeche in France. She and her partner and toddler boy spent time on a camping. A family type camping, with dutiful moms and dads and looooooads of children running, screaming, crying and laughing around. It was a very interesting experience. I’ve not been a fan of camping ever since I spent a depressing week in the Scottish Highlands in 2003, soaked to the bone and bitten top to toe by midgies. Face glowing red and on fire. The glorious Isle of Mull was supposed to look like a bounty island, but I could hardly see the beach through the torrential rains poring down. Well, the second day it cleared up, and it was actually stunningly beautiful there. I’ll add some illustrative pictures. I didn't use any medication at that time and had such a reactive, flushing prone skin. I hadn't thought yet of the use of a fan by then and resorted to open windows at night mainly. But in the tent, this was no option. Leaving the tent partially open, the midges would swarm in and eat you alive (we made a picture on a particularly bad midgie day and after holding an arm outside the tent for a minute, it was covered in tiny red bumps; all red. Not sure where that picture went..). So at some point I was so hot and flushed, that I slept in the car, with the front seat half up and the car fan on, aimed at my sore face. My bf at the time tried to be understanding and patient but was pretty brutal at some point about me being so unhappy during the entire holiday for which "he had worked all year" (c'mon, I paid my own share, as a good Dutchie), and had been looking forward to so much. It wasn't good. I remember being stressed, having a constant hot face and since I was the only one with the drivers license, I also had to drive the small windy roads. In a British car, with the steering wheel and drivers seat on the 'wrong' side, and people driving on the wrong side of the road. I'm a great driver (boost boost) but my ex was the type to be hyper vigilant about other peoples driving style and he was uptight about every road curve and turn off. You know the types; the best sailors out there who stay on land without a job, but knowing better than everyone else out there. A bit stressful.. But the country is beautiful, I really loved it and visited more often to be with his parents and friends in those years. I made lots of pictures, and now I can't chose :)

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This camping where my sister spent her holiday had a luxurious Safari Family Tent however. And there were no midgies, and no rain either. It was a nice 'nature' camping, although quite modern and well equipped in every way imaginable so the 'nature' part must have been referring to the nice river and rock formations close by. It was warm though, especially at night in the small tent compartment. I can see of course how a camping works for small kids. My nephew was having a grand time, playing all day, stealing toys from neighboring kids, charming the waitresses and running wild. My sister said that before we arrived, he had been swooning for attention with everyone, laughing, flirting, acting silly, even turning around in his baby chair at the restaurant and making yummy yummy movements with his hand to the waitresses in order to get more smiles. Very cute. We made nice sight seeing trips but admittingly, I can now understand why she is so tired always. She calls it chronical exhaustion herself. The kid isn't a straight forward sleeper (thanks sis for putting him next to me in the tent :)  and she never has a undisturbed night of sleep. She still works and kids just seem to never have enough attention and care anyway. More is better kind of thing. Great and fantastic for me, but even I was knackered at the end of the stay. That is something I have anyway; constant tiredness. My 2 closest friends who suffer from rosacea and other health issues as well, always complaint about the same thing to me. I really wonder if it's the drugs in my case or the chronic inflammation itself. Even though I sleep 9 hours straight without any effort and don't have a large brood to look after, I'm still feeling sluggish and lightheaded and basically exhausted a good part of the day. But nothing too bad, lets stop this complaining and get back to the story.





One of the spectacles we visited was a Medieval  themed day.

I made a lot of pictures and will add a few down here. I love history. But it is most of all a tv series called Game of Thrones that arose a current love for this period. The costumes and characters I saw reminded me a bit of the Game of Thrones characters and I was almost tempted to buy myself a velvet green medieval style dress that day :) One of my friends is mad for the series too and its a lot of fun to discuss the episodes together and go through themes and details. My high school friend (she's a lawyer now) and I always read a lot, but the last years she has been reading a lot of fantasy books she told me some time ago. I was a bit surprised, she is more of a classic literature type (me too), but she said she really loved to get lost in the world of those books. Perhaps as a complete opposite of her every day life. My dad always tried to get me interested in the Lord of the Rings books, which he loved, but I never made it past the Hobbits. Too unreal, too manly perhaps as well. But Game of Thrones really appeals to me, after the first ok season, the second and third just got me completely hooked and I can go a bit overboard in my enthusiasm at times, also in this case. What might make this series different to me is not only that its an intelligent story but also that there are so many references to the real world woven into it. Even though its a fictional land with fictional characters, they are partly based on real life stuff like the War of the Roses. You also will find back old fairy tales, sagas and mythology woven into 
it all and some of the main characters show some resemblance to historical figures. Its truly a whole different world you enter in once the series got on steam, but it's realistically enough to still be able to identify with it. I do wonder sometimes if the series is so popular because it perhaps appeals to some lifestyle we as humans used to have for so long. Clans, smaller communities, fighting wars. They don't only show the bravery and the adrenaline, but also the cruelty of it all. Yet, despite all that, me and the people I know watching it, sometimes have a hard time switching back to every day life. Because it all feels so exciting and interesting there. Perhaps more people deeply or subconsciously long back for that after watching it, in our individualized, modern and digital society.

First the great main theme and opening, then a few nice adaptations by gifted fans.

   

   








Some of the Medieval parade pics:




I dyed my hair blonder, and I finally found a way to lighten hair in a way that doesn't stir up my rosacea. I use hydrogen peroxide 3%, which you can buy in any pharmacy for a few euro's/dollars. Then I add baking soda to it and mix it up. I make sure it's not too runny. You can use this for highlights or to really lighten all your hair up. Just make sure to first run a test on some hair that is normally invisible when you wear it down or up. My hair is pepper and salt and it didn't turn orange or green from it, but a summery blonde (although one might also make the verdict straw-yellow, depending on the light in which you look at it, hmmmm...). I use aluminum foil and hand gloves. Even though the peroxide is a lot less strong than the 10% they use in hair salons, it can still stain and irritate your skin. This second time I only did the roots, which is a lot less work, but the first time I ran the mix through my hair, divided it as evenly as possible or desirable and then rolled it up in the aluminum foil. Once everything is in neat packages and you look like an outer space creature, you get the hair dryer and heat the aluminum packages up. After 45 minutes I was really blonde, so if you just want one shade lighter, 20 minutes might be enough. Don't forget that the hair you started with initially will be done sooner, as the rolling up/packaging is quite time consuming. Then wash the stuff out (once you scrape it off you will see already how much your hair has lightened) and wash it once or twice with your rosacea friendly shampoo. I try to not let the mixture touch my scalp. This means that you have some un dyed roots, but in my case the color differences isn't massive and it looks a bit more natural as well. The first time I did this and had the mix touch and sink on my scalp, I did have increased facial redness for some days, but nothing too long. This second time I avoided any scalp contact -or as best as I could- and had no reaction whatsoever. Just stayed my normal pale/pinkish color. Another clumsy/inventive beauty thing I came up with is to make a natural looking black eyeliner substitute from finely powdered charcoal. The first years of my rosacea I didn't notice problems when using mascara and eye liner, but later on I did. As soon as I put this eye make up on, my cheeks started to flare and burn. I tried it many times but always the same reaction, so for years I walked around without any make up at all. I felt bare but got used to it. Then a friend said she always felt that the dark eye make up looked so much nicer, and made my eyes stand out so much more.  Hmm, thanks.. She suggested the charcoal and its been no problem whatsoever!  In the for last seb derm post I added
some close ups of my eyes and you can see the charcoal make up there. I put the powder on my finger top, get rid of excess black powder until I have a straight black line on the finger tip and blow over it to get rid of the dusty light particles, then bend forwards with a small pocket mirror (so that the powder won't swirl onto my cheeks), close one eye 3/4 and apply the stuff the same way you would apply an eyeliner. I then get a cotton pad and retouch if needed into a fine even line. Since most of my eyebrows have been gone for some time, I use the stuff too to fill them in, but make sure that I fade it out enough to make it look sortof natural, from a bit of a distance. Here are some pictures of the hair, charcoal powder, the jojoba oil I use now and then around my eyes to try to prevent wrinkles (have a very dry skin) and also some pics of the new house mate Walter and my mother and step dad. Ok, I realize this was a left-right-all over the place post, soon a more straight forward and to the point posting. And yeh the hair looks yellow in that light :)

















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