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Sorry for this huge journal. A bit of rambling at first, the CFS part starts after the ribbon. The state of my health is still improving. I managed to get piracetam as an adjunct for LDN, and I also found out that sublingual large dose vitamin B12 makes my drowsiness and brainfog a bit better. I'm still fatigued and suffering from a dozen annoying symptoms and unfortunately I still have quite a bit of cognitive dysfunction, but it has improved, and most importantly my once endless creativity is coming back to some extent. I got my brain MRI results back, which only took three months. There were apparently punctate lesions typical of CFS, but of course no one cares, so the scan was just as worthless as I thought it would be.
I've done well in contests lately: I won both AbCat's best comment contest and MSJames's spring haiku contest and was a runner up in the Deviographies prose contest. I also placed #3 in the ASCII contest at Blockparty. I feel like there is a possibility that I might be able to write a novel again some time in the future. I've started my own stock account which I've been contemplating for years now. I also got a new PC. I had been using my dad's laptop for months after my PC's power supply gave up and a new one would have cost $90(!). In the end he wanted his laptop back, so he bought me a cheap used PC. 256 MB -> 1024 MB RAM is quite a big improvement, and now I'll finally have a DVD player. The box is also incredibly quiet.
Speaking of books and medications, my book about CFS treatments is finished now. 128 pages and just under 500 references, and a great cover design thanks to the awesome Shurakai-Zero. I should receive the first copy in a few weeks. It's exciting to say the least. I might start translating it into English (which also means extending it by some 30%) in autumn if all goes well. I've done a lot of two things lately: cooking and watching movies. The latter was among my favorite hobbies before my health totally failed, but I've never been a big movie buff. Now I watch a few every week and am falling more and more for Almodovar. Trier's Riget is great too.
I discovered some awesome vegan food blogs which have been a great inspiration, though I'm a very creative cook even without any recipes. Lately I've cooked/baked eg. red cabbage casserole; asparagus gratinated with lemon, coconut milk and pistachios; nacho "cheese" dip; carrot apple orange muffins; borts soup and "fish" fingers. Next up is chai cake. All of that vegan too, I'm not a vegan and I even eat eggs, but I usually cook and bake vegan. You can bake much better cookies without the eggs! Nothing stops you from trying that stuff even if you're not a vegetarian. It's very tasty and easy as well.
I've been rather pissed off with DA lately. I know I say it a lot, but it just gets worse. The very long-time staff member (now alumni) ndifference was recently permbanned because he dared to criticize the administration (yes, I've seen the comment, which was completely to the point). He contributed to DA much more than eg. lolly, even though he has never organized "watch orgies" or given a subscription to someone just because they had a naughty nickname, like lolly has done. The DA staff cannot really handle any criticism, they cannot admit that they are very unprofessional and act childishly. It's surprising that I haven't been banned already for daring to speak out and point out the flaws of the administration. If I do end up banned, you'll know what happened. Oh well. New TextCanvas is out now, as is Hugi #33.
If you saw an article in the paper about cancer being a psychiatric problem that could be treated with psychotherapy, you'd probably be quite pissed at the load of bullshit, even if you had never been affected by cancer yourself. But it still happens to the people suffering from chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). It just happened a few weeks ago in a Finnish TV program and I was outraged. We get to read that we are depressed, neurotic or overly focused on "sickness beliefs", that we just need cognitive behavioral therapy or graded exercise to cure our foolish heads, even though we know that exercise will make us more ill, and that psychotherapy won't make the fever go away, stop the lymph nodes from hurting or stop the epileptic seizures.
It sounds fishy, doesn't it. If the medical literature claims such things, surely there must be some truth to it? It hasn't actually been all that long since things like asthma and multiple sclerosis were considered psychiatric ailments, a form of hysteria. In ICD-10, CFS is correctly regarded as a neurological illness and has been that way for a long time. According to CDC, thousands of studies prove that CFS is a real, physical illness which affects the brain and the immune system. Yet the magazines and journals are still trying to prove that it's all in your head. And it is in our heads for sure, it can often even be seen in MRI and SPECT scans, but Prozac won't make it go away.
There is ample evidence to prove the organic basis of CFS, and that there are dozens of medications (eg. antibiotics, antivirals, immunomodulatory drugs, antiepileptic drugs, heart medications and Alzheimer drugs) that can be used to treat it. But a study shows that 95% of doctors never follow scientific publications. The research is largely useless to the great majority of doctors. And with a name like chronic fatigue syndrome, it's easy to think it's a "psychosomatic" problem. Yeah, after all, fatigue cannot be a physical phenomenon, right, it only occurs in eg. Alzheimer's, MS, lupus, AIDS and cancer but other than that it's a psychological problem. This approach also totally disregards the myriad of other symptoms in CFS. In most jobs you'd never be able to blame the client for your lack of knowledge, but as a doctor you can. In most jobs you'd get kicked out for abuse, but not if you're a doctor.
CFS is not a rare disease despite what many people think. It's actually very common. One reason why CFS is so dismissed is that it largely affects women, and many doctors love to label women as depressed, neurotic or hormone-driven, even in modern society which should be free of gender bias. The medical community has no excuse to treat us like this, but they do. They can treat us as subhumans and we can't do much about it. It is a crime against human rights to be mocked by doctors and people who are supposed to be our friends, to be refused treatment, help, support and benefits due to our diagnosis. We shouldn't have to wish to get an incorrect diagnosis just to be treated as human beings, just to have the rights that belong to us and have been taken away from us. A doctor should do everything they can to help a patient, but this is very rare.
There is black pride, gay pride and many kinds of minority pride, but there isn't really disability pride, because we're too sick to be proud about being sick. People with breast cancer get rallies, campaigns and races, but people with CFS don't get any of that, because no one seems to care. People just can't see an illness as a serious one if it has a name like "chronic fatigue syndrome" and thus they aren't motivated to donate to research and awareness campaigns. They don't realize that CFS patients can be just as sick as cancer patients. The mortality is of course lower, but that's not of much comfort to a person who has spent a decade bedridden and fed by a tube, is in constant pain and cannot speak or read. CFs can afflict children just like cancer, with deleterious results. Sometimes it afflicts the whole family.
Life with CFS isn't necessarily unremitting hell, but it can have a huge toll in your relationships and just about everything else. It can be a constant struggle against poverty and homelessness. Imagine once going to bed fine and waking up very sick the next day, and never getting any better, and having your entire life taken away from you. It is living with something that is very real, but many people refuse to accept its existence. It's like a movie where your world seems crazy and people think you are crazy and you're struggling to prove them wrong, until you give in to the stress and despair and actually go crazy. Of course, it must be irrational to be depressed and anxious when you're life has been taken away from you, isn't it? Stop focusing on illness beliefs and your cancer will go away. Why doesn't that work?
Even as a writer I find it difficult to convey what it is like to live with an illness which is a subject of so much unwarranted misconceptions, controversy and disbelief as CFS. Even now that I'm writing this, I get a bit unreal feeling, like "this is just absurd, it can't be happening". All of this just because our main complaint is considered to be fatigue, even though the illness affects all of our organs. I hope that my severely affected friend can convey some of that emotion in my interview of her, and that it will also motivate you to do something, even if it's just telling your friends what CFS is and what it isn't, or not staring at that young person who took a few steps even if they're sitting in a wheelchair.
I've also posted a news article about CFS. By favoriting it you can create more exposure for it. If you want to hear what happened to the guy with CFS I interviewed a year ago, I've updated the description of the Deviation. It is good news. Hopefully I will be able to report good news about the friend I interviewed this time, as well.
CFS awareness day journal 2005
CFS awareness day journal 2006
RockstarVanity's journal
Some recent, fairly unknown Deviations from my watchlist and other people.
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Works in progress:
Sorry for this huge journal. A bit of rambling at first, the CFS part starts after the ribbon. The state of my health is still improving. I managed to get piracetam as an adjunct for LDN, and I also found out that sublingual large dose vitamin B12 makes my drowsiness and brainfog a bit better. I'm still fatigued and suffering from a dozen annoying symptoms and unfortunately I still have quite a bit of cognitive dysfunction, but it has improved, and most importantly my once endless creativity is coming back to some extent. I got my brain MRI results back, which only took three months. There were apparently punctate lesions typical of CFS, but of course no one cares, so the scan was just as worthless as I thought it would be.
I've done well in contests lately: I won both AbCat's best comment contest and MSJames's spring haiku contest and was a runner up in the Deviographies prose contest. I also placed #3 in the ASCII contest at Blockparty. I feel like there is a possibility that I might be able to write a novel again some time in the future. I've started my own stock account which I've been contemplating for years now. I also got a new PC. I had been using my dad's laptop for months after my PC's power supply gave up and a new one would have cost $90(!). In the end he wanted his laptop back, so he bought me a cheap used PC. 256 MB -> 1024 MB RAM is quite a big improvement, and now I'll finally have a DVD player. The box is also incredibly quiet.
Speaking of books and medications, my book about CFS treatments is finished now. 128 pages and just under 500 references, and a great cover design thanks to the awesome Shurakai-Zero. I should receive the first copy in a few weeks. It's exciting to say the least. I might start translating it into English (which also means extending it by some 30%) in autumn if all goes well. I've done a lot of two things lately: cooking and watching movies. The latter was among my favorite hobbies before my health totally failed, but I've never been a big movie buff. Now I watch a few every week and am falling more and more for Almodovar. Trier's Riget is great too.
I discovered some awesome vegan food blogs which have been a great inspiration, though I'm a very creative cook even without any recipes. Lately I've cooked/baked eg. red cabbage casserole; asparagus gratinated with lemon, coconut milk and pistachios; nacho "cheese" dip; carrot apple orange muffins; borts soup and "fish" fingers. Next up is chai cake. All of that vegan too, I'm not a vegan and I even eat eggs, but I usually cook and bake vegan. You can bake much better cookies without the eggs! Nothing stops you from trying that stuff even if you're not a vegetarian. It's very tasty and easy as well.
I've been rather pissed off with DA lately. I know I say it a lot, but it just gets worse. The very long-time staff member (now alumni) ndifference was recently permbanned because he dared to criticize the administration (yes, I've seen the comment, which was completely to the point). He contributed to DA much more than eg. lolly, even though he has never organized "watch orgies" or given a subscription to someone just because they had a naughty nickname, like lolly has done. The DA staff cannot really handle any criticism, they cannot admit that they are very unprofessional and act childishly. It's surprising that I haven't been banned already for daring to speak out and point out the flaws of the administration. If I do end up banned, you'll know what happened. Oh well. New TextCanvas is out now, as is Hugi #33.
If you saw an article in the paper about cancer being a psychiatric problem that could be treated with psychotherapy, you'd probably be quite pissed at the load of bullshit, even if you had never been affected by cancer yourself. But it still happens to the people suffering from chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). It just happened a few weeks ago in a Finnish TV program and I was outraged. We get to read that we are depressed, neurotic or overly focused on "sickness beliefs", that we just need cognitive behavioral therapy or graded exercise to cure our foolish heads, even though we know that exercise will make us more ill, and that psychotherapy won't make the fever go away, stop the lymph nodes from hurting or stop the epileptic seizures.
It sounds fishy, doesn't it. If the medical literature claims such things, surely there must be some truth to it? It hasn't actually been all that long since things like asthma and multiple sclerosis were considered psychiatric ailments, a form of hysteria. In ICD-10, CFS is correctly regarded as a neurological illness and has been that way for a long time. According to CDC, thousands of studies prove that CFS is a real, physical illness which affects the brain and the immune system. Yet the magazines and journals are still trying to prove that it's all in your head. And it is in our heads for sure, it can often even be seen in MRI and SPECT scans, but Prozac won't make it go away.
There is ample evidence to prove the organic basis of CFS, and that there are dozens of medications (eg. antibiotics, antivirals, immunomodulatory drugs, antiepileptic drugs, heart medications and Alzheimer drugs) that can be used to treat it. But a study shows that 95% of doctors never follow scientific publications. The research is largely useless to the great majority of doctors. And with a name like chronic fatigue syndrome, it's easy to think it's a "psychosomatic" problem. Yeah, after all, fatigue cannot be a physical phenomenon, right, it only occurs in eg. Alzheimer's, MS, lupus, AIDS and cancer but other than that it's a psychological problem. This approach also totally disregards the myriad of other symptoms in CFS. In most jobs you'd never be able to blame the client for your lack of knowledge, but as a doctor you can. In most jobs you'd get kicked out for abuse, but not if you're a doctor.
CFS is not a rare disease despite what many people think. It's actually very common. One reason why CFS is so dismissed is that it largely affects women, and many doctors love to label women as depressed, neurotic or hormone-driven, even in modern society which should be free of gender bias. The medical community has no excuse to treat us like this, but they do. They can treat us as subhumans and we can't do much about it. It is a crime against human rights to be mocked by doctors and people who are supposed to be our friends, to be refused treatment, help, support and benefits due to our diagnosis. We shouldn't have to wish to get an incorrect diagnosis just to be treated as human beings, just to have the rights that belong to us and have been taken away from us. A doctor should do everything they can to help a patient, but this is very rare.
There is black pride, gay pride and many kinds of minority pride, but there isn't really disability pride, because we're too sick to be proud about being sick. People with breast cancer get rallies, campaigns and races, but people with CFS don't get any of that, because no one seems to care. People just can't see an illness as a serious one if it has a name like "chronic fatigue syndrome" and thus they aren't motivated to donate to research and awareness campaigns. They don't realize that CFS patients can be just as sick as cancer patients. The mortality is of course lower, but that's not of much comfort to a person who has spent a decade bedridden and fed by a tube, is in constant pain and cannot speak or read. CFs can afflict children just like cancer, with deleterious results. Sometimes it afflicts the whole family.
Life with CFS isn't necessarily unremitting hell, but it can have a huge toll in your relationships and just about everything else. It can be a constant struggle against poverty and homelessness. Imagine once going to bed fine and waking up very sick the next day, and never getting any better, and having your entire life taken away from you. It is living with something that is very real, but many people refuse to accept its existence. It's like a movie where your world seems crazy and people think you are crazy and you're struggling to prove them wrong, until you give in to the stress and despair and actually go crazy. Of course, it must be irrational to be depressed and anxious when you're life has been taken away from you, isn't it? Stop focusing on illness beliefs and your cancer will go away. Why doesn't that work?
Even as a writer I find it difficult to convey what it is like to live with an illness which is a subject of so much unwarranted misconceptions, controversy and disbelief as CFS. Even now that I'm writing this, I get a bit unreal feeling, like "this is just absurd, it can't be happening". All of this just because our main complaint is considered to be fatigue, even though the illness affects all of our organs. I hope that my severely affected friend can convey some of that emotion in my interview of her, and that it will also motivate you to do something, even if it's just telling your friends what CFS is and what it isn't, or not staring at that young person who took a few steps even if they're sitting in a wheelchair.
I've also posted a news article about CFS. By favoriting it you can create more exposure for it. If you want to hear what happened to the guy with CFS I interviewed a year ago, I've updated the description of the Deviation. It is good news. Hopefully I will be able to report good news about the friend I interviewed this time, as well.
CFS awareness day journal 2005 CFS awareness day journal 2006 RockstarVanity's journalSome recent, fairly unknown Deviations from my watchlist and other people.
:thumb54582498:Mature Content
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Day 26Spring haiku:thumb54885539:
picnic on the hill
green grapes spilling
across the grass
DVD Reviews: Borat and RockyAmerican hypocrisy
Why not throw more attention at the cultural curmudgeon? After the "Borat" movie was originally released, he hit America like a virus. I see the symptoms everyday.
Now, my roommate Marco walks around our apartment almost every day saying "king of the castle, king of the castle." My grandmother told me a story the other day about how she and my grandfather accidentally walked into a theatre and witnessed the "disgusting filth" when they mistook it for a nice foreign film. My manager at Shaw's Fenway, Sergey, a native of Belarus, now has to deal with all the local high school kids calling him Borat and picking on his accent more than usual.
"Borat: Cultural Learnings of America for Make Benefit Glorious Nation of Kazakhstan" was released on DVD March 6, and is available for $16 on Amazon.com. It comes on a disc made to look like one fabricated for the black market.
Borat, played by Sacha Baron Cohen, is a reporter from Kazakhstan sent to America by his government to ma
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Works in progress:
- two ASCII pictures
- two pieces of pixel art
- a digital painting
a DA related project- an article about brainfog
twoone ASCII request- my sociomedical essay series
- editing some old poems
- a few poems
Works finished but not yet submitted- an ASCII picture
- an acrylic painting
- an abstract digital drawing
- a digital painting
- pixel art
- some nifty textures (seamless, of course)
- a whole bunch of photos
Works I wish to start in the near future- an acrylic painting
- an article about CFS
- henna tattooing
- traditional collage
- macro photos
Non-art/DA TODO (inconclusive)- content for my Finnish CFS site
- a Finnish website about LDN
- some Wikipedia articles
My preliminary schedule for the following months29th May getnolife's spring meeting1st June psy party2nd June Juno Reactor in Helsinki10th June outdoor party16th June outdoor party16th June psy party19th June doctor visit19th June outdoor party22nd June outdoor party29th June outdoor party29th June techno party30th June outdoor party
30th June Helsinki pride
6th-8th July Konemetsä open-air forest festival
15th July outdoor party
16th-27th July a trip to the Netherlands
29th July psy party
2nd-5th August Assembly demoparty
12th August outdoor party
16th August doctor visit
I was interviewed by
, read the interview in <a href="radicalpuppy4.deviantart.com/j…">his journal.
wrote a poem dedicated to my ASCII art. It's quite good too!
I've set up a discussion thread for my sociomedical essay series on my forum, please read it and contribute if you have any opinions.
CFS Awareness Day 2006
Admin of Deviant-Contests
Member of critiqueme fi
Supporting photo-class suture onewordatatime Lit-Source poeticks Reporters Activists ArtistsForCharity fotoFRIDAY WordCount litNEWS
- some Wikipedia articles
- a Finnish website about LDN
- traditional collage
- henna tattooing
- an article about CFS
- some nifty textures (seamless, of course)
- pixel art
- a digital painting
- an abstract digital drawing
- an acrylic painting
- editing some old poems
- my sociomedical essay series
- an article about brainfog
- a digital painting
- two pieces of pixel art
A whirlwind year
It's been many years. And this year has been incredibly weird, and that doesn't even begin to cover it. I won't go into detail about the non-art stuff, but having your personality completely change in an instant, half a dozen times, has been great and fascinating but also disorienting and alienating. Last year I started recording hypnosis and meditation audios and more poetry for my YouTube channel, and those have received great feedback but alas, I got sicker and can't do that much any more. Earlier this year my beloved muse enticed me to start pencil drawing and I turned out to be pretty good at it (I thought I can't draw). I tried my hand at watercolors, which I always saw as an impossible medium, but turns out it's not. Alas, I again got sicker, as things tend to go, and have hardly been able to do any art for over six months. I've written over 250 poems this year, thanks to both my muse and the massive cognitive overhaul I've experienced. It feels like after 30+ years of
Alive-ish
It's been a while. A few years. Quite a few since I essentially stopped using DA because of the extremely abusive admins (my comment average is still 4.2 comments a day!). I'm not sure if anyone I know is still reading this. Lots of stuff has been happening, good and bad. The Netherlands is a wonderful place. When I got away from Finland life was great for a while. I could work 15-hour days despite the CFS/ME, thanks to LDN. I thought my nightmare was finally over. Until November 2011, when my pituitary was destroyed by sabotage. Hypopituitarism is one really shitty illness and has put me close to death more times than I can count. Also very
My novel is _finally_ out - and I got a grant, too
Prose | Poetry | ASCII art | Pixel art | Fractal art | Vector art | Digital paintings | Traditional art | Photography | Artisan crafts | Emoticons | Wallpapers | Contest entries | Seamless textures | Designs |Tutorials | DeviantART Related | The rest
Yep, my debut novel Marian ilmestyskirja (Maria's Book of Revelations) was supposed to come out in the spring, but due to various delays it has only been released now. It's in Finnish, but there is an info page in English, too, and a book trailer which is Finnish only, but very visual, so it's worth watching even if you don't know Finnish. It has gathered many positive, even glowing reviews and
Release of my novel etc
Prose | Poetry | ASCII art | Pixel art | Fractal art | Vector art | Digital paintings | Traditional art | Photography | Artisan crafts | Emoticons | Wallpapers | Contest entries | Seamless textures | Designs |Tutorials | DeviantART Related | The rest
So my first novel Marian ilmestyskirja will be coming out from Muruja next month. The taboo-breaking cripfic has already got about 10 reviews in book blogs, including a few absolutely glowing ones (I couldn't have come up with better ones if I tried!). I made an English info page about the book which includes a sample. Still hoping to find an international publisher for it! Disabled people deser
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Comments32
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This is great, I didn't know anyone on here that had CFS/ME too but now I do!
One thing I have noticed is most doctors have basically given up on trying to treat it, I guess they still do think it's all in our heads. But there are still some doctors that are really trying to figure it out, which is nice. There has been a lot of people working on it lately so I've heard, so that is good to hear.
I bookmarked this entry so I can come back and read more later, you seem to have a lot of knowledge about CFS.
One thing I have noticed is most doctors have basically given up on trying to treat it, I guess they still do think it's all in our heads. But there are still some doctors that are really trying to figure it out, which is nice. There has been a lot of people working on it lately so I've heard, so that is good to hear.
I bookmarked this entry so I can come back and read more later, you seem to have a lot of knowledge about CFS.