Bentonville is Walmart everything: headquarters, playground for all new and old technologies, and Rogers did not go far from all this excitement.
Anyway, here we go. Now I am unemployed once again :) I am volunteering as a web content manager for Global Water Dances and liking it. So I have one more skill under my belt: Wordpress. Because it is a toll basically, it can be learned and worked with HTML coding skills, so, I am learning it as I go. For example, I have learned where images go and how they stored. BTW, here is a very uncomfortable structure for images storage Wordpress gives by default. There are only two levels of digital library organization: year and month of uploading the picture. There is no way to create your own structure. So, in a way, pictures just piled up there. But Wordpress did come up with something called "Gallery." It is still a pile of pictures physically wise, but it's somewhat organized for visual presentation - on as web. There is restricted search. It is restricted to edit, to play with all together, so this is not really a developer's choice. Fortunately, here I learned very necessary thing: you can teach Wordpress to play with you. You just need to know ways around :) Sometimes waaaaay around, but here comes handy a good skills of mine: HTML/CSS coding. And thanks to my dad, I naturally have a good taste (I hope so) for designing the pages.
They do restrict you a lot in building your own page, but if you think about this, all this makes perfect sense. I am volunteer, and eventually I can drop that thing and somebody else should be able to pick it up right where I dropped it off.
Tuesday, January 26, 2016
My new southern thing
Bentonville is Walmart everything: headquarters, playground for all new and old technologies, and Rogers did not go far from all this excitement.
Anyway, here we go. Now I am unemployed once again :) I am volunteering as a web content manager for Global Water Dances and liking it. So I have one more skill under my belt: Wordpress. Because it is a toll basically, it can be learned and worked with HTML coding skills, so, I am learning it as I go. For example, I have learned where images go and how they stored. BTW, here is a very uncomfortable structure for images storage Wordpress gives by default. There are only two levels of digital library organization: year and month of uploading the picture. There is no way to create your own structure. So, in a way, pictures just piled up there. But Wordpress did come up with something called "Gallery." It is still a pile of pictures physically wise, but it's somewhat organized for visual presentation - on as web. There is restricted search. It is restricted to edit, to play with all together, so this is not really a developer's choice. Fortunately, here I learned very necessary thing: you can teach Wordpress to play with you. You just need to know ways around :) Sometimes waaaaay around, but here comes handy a good skills of mine: HTML/CSS coding. And thanks to my dad, I naturally have a good taste (I hope so) for designing the pages.
They do restrict you a lot in building your own page, but if you think about this, all this makes perfect sense. I am volunteer, and eventually I can drop that thing and somebody else should be able to pick it up right where I dropped it off.
Wednesday, March 7, 2012
How ADA make people monsters
I will not go into too many details on this topic, just say that if there are “rules” people tend to forget the key idea, “spirit” of those rules. People tend to forget what their brains and hearts were used to be used for. They typically rely too much on those rules. As sad as it sounds, this is typically true. For example, Americans with Disability Act (ADA), despite the fact that it was passed to serve needy people, this law does not give the employee and employer any flexibility; instead the evidence suggests the opposite. The intention was excellent and, of course, out of questions, but the implementation many years later is driving people further and further from this intention. Everybody knows that disabled people are not “equally” disabled, they all have different problems; even if there is some classification that supposed to identify some groups of needs, the key point on this is that it is only theoretical. Most people try to “average” out some needs and make recommendations according to the descriptions, unfortunately, transformation of those recommendations into an obligation can be a disaster, because what helps one person can harm another that can be irreversible 3.
Moreover, no disabled person wants people to recognize the disability of his/her in a traditional way, because it normally hurts 2,3,4. The traditional view of disability often focuses on a defect or impairment and not on the person himself/herself 5. The ADA states disability as an advantage almost, so disabled person has “privileges” before others. This gives a person often at least weird looks and, as a normal reaction, hate and/or avoidance from others, especially combined with impossibility to explain everybody that “privilege” is not really a privilege. In addition to that, it offends the person 5,8. A lot of times it not only hurts, but this means excluding the person from any society activities, writing him/her off. It often almost feels as the society is burying the person alive, guided by the nice and kind motive “it is good for them, be easy on them” and so on.
The ADA offers a protection to disabled people on problems they may encounter during the life like discrimination regarding to the accessing the opportunity to get the “perfect” fitting job for their skills, discrimination at the work place of any kind, arranging appropriate accommodations. The reverse of this “medal” is the fact that, as everybody knows, everything has a price-tag and in this case the cost comes as overly protected rights. It means decreased opportunity for “perfect” job, because despite what the employer says he/she will think about circumstances and attaching the label for everybody to see the “abnormality” or “exclusivity”. Another adverse event is suggested by many researches, and it is the fact that a lot of people are pretending to be disabled and overall in serious health condition in order to get all the government help they can. As a result of this, often, really needy people cannot get a hold of things they were supposed to get, according to this law 1. There are two key reasons for that: the limited resources and the limited ability of the majority of disabled people speak for themselves for many reasons. For example, some of disabled individuals could be not good enough at knowing their rights, they could be not strong enough to “fight” against the bureaucratic machine, or they could be reluctant to the revealing their health condition if it is not apparent.
On the other hand, ADA dictates employers such rules that disabled people (or the ones pretending to be disabled) unfireable no matter what. So the individual can be a lousy personality nobody wants to work with, he/she can be a terrible worker, as well; yet, nobody can fire him/her. Furthermore, if the person feels abandoned or something he/she can sue the employer, so the employer see that person as a potential lawsuit even before hiring the individual with declared disability. Even though the employer is denying any discrimination and declaring offering equal opportunity rights for every person applied for the job. The employer will perhaps never get any problems and will only win hiring the disabled person because of his/her skills, but there is a potential chance for the employer to lose a lot of money and reputation, which sometimes is a deciding factor in the hiring process. Another potentially deciding factor for a negative answer to the incumbent is that the individual will ask for accommodations that are not very appealing for the employer to offer in regard to utilizing the money, time, and/or other resources 6,7.
The conclusion is simple - ADA was supposed to be a respectable and effective law when it was first publicised. However, since that time a lot of things have happened, a lot of changes took place, besides the fact that no law can consider all possible situations or it will be a huge pile of contradicting statues. Considering all of the above, all of the negative stuff about ADA could be avoided if people live by their heart more than by their rules, which, in fact, not always their particular will.
References
- BustAThief.com. (2010). Disability fraud – disability scam. Retrieved from http://www.bustathief.com/disability-fraud-disability-scam/
- Diversityworld.com. (2011). The ten commandments of communicating with people with disabilities. Retrieved from http://www.diversityshop.com/store/10comvid.html
- Hartman, M. (March 2004). People with and without disabilities: Interacting & communicating. Retrieved from http://eeo.gsfc.nasa.gov/disability/publications.html
- Henry, S.L. (2007). Interacting with people with disabilities. Retrieved from http://www.uiaccess.com/accessucd/interact.html
- Murugami, M.W. (2009). Disability and identity. The Society for Disability Studies, 29(4). . Retrieved from http://dsq-sds.org/article/view/979/1173
- Olson, W. (July 26, 2010). ADA’s 20th Anniversary. Retrieved from http://www.cato-at-liberty.org/adas-20th-anniversary/
- Sparks, K. (June 04, 2011). Pros & cons of ADA. Retrieved from http://www.ehow.com/info_8541954_pros-cons-ada.html
- Youtube. (November 13, 2010). Stossel affirmative action bake sale. Retrieved from http://www.youtube.com/watch?v=kn48t-X0uNU
Tuesday, March 6, 2012
My granny
I am not sure, but seems that she has had the same symptoms I have (well, I am relaktant to say it, but I'll try, I have spinocerebellar atrophy). I mean, she has been “clumsy” all the time, but the thing is that her husband, my beloved grandpa, just dedicated himself to her. He was taking care of her so that everybody saw it as she was just “lazy” and he was doing everything. Maybe it was “envy” talking in people :) Because everybody only saw the surface, which was the obvious display of “one-sided” story of my grandparents life. The thing about it is that they were living in a country side in Ukrain, which was not so forgivable to the people who are not as healthy. Everybody has to be strong to be able to take care of the garden, of the children, of the house, of income, and, in addition to that, women were obligated to take care of their husband and, moreover, woman always was the one who holds the key responsibility for house and the children. The man has to be only “there”; therefore, it is obvious that my granny was not a great fit in that society; nevertheless, fortunately for her, my grandpa was there for her.
Actually, she was a reason for me to receive an “F” in history; while they told me a “horror” story about masters in feudal Russia, I was thinking of granny’s version of it; somehow, I trusted it at much bigger scale than I ever had trust in my teachers' version who only read about the whole thing. One little story stuck in my memory; it is how my granny’s master took care of her when she had some health problems, how he paid everything and such. That was my granny who taught me how masters were in real life.
She narrated her version of a revolution: they actually did not know about anything that big and that critical was happening in big cities until commies came to villages to “dispossess” things from masters in order to help poor and working class. People like my granny did not know that they were supposed to “struggle” and “survive”, they just worked and lived. That simple, they did not need anybody to do things for them. How my granny ever ended up in Siberia, is whole another story. They were refugees from Ukrain after the World War II, when the massive starvation began; as funny as it was, my dad was born on the way to Siberia. He has a Kasach birth certificate :)
I did not have everything today’s kids have, I did not have big televisions to tell us a story, I did not have entertaining things, but I had my granny to tell me a true story of how things were. Even though my childhood was not all that great because of neverending bullying and things, I am still looking back to my childhood with nostalgia and mixed feelings. There were great moments deserve to be remembered like my granny and her stories.
They are both rest in peace today, unfortunately, my granny has lived without her husband for almost ten years, but now I am sure they are together and happy again. One very promising thing she gave me, the age to which she lived. She passed away at 90 years, so this age is the “deadline” for me too :) Now I am “pursuing” the same career of a “lazy” woman. My husband is doing everything for me, I mean everything, except one thing. I am able to think :) Well, I have a long-long life ahead of me :) The only obligation I have at this point is that I have to “use it” up to the potential, do the best out of what I have.
Actually, she was a reason for me to receive an “F” in history; while they told me a “horror” story about masters in feudal Russia, I was thinking of granny’s version of it; somehow, I trusted it at much bigger scale than I ever had trust in my teachers' version who only read about the whole thing. One little story stuck in my memory; it is how my granny’s master took care of her when she had some health problems, how he paid everything and such. That was my granny who taught me how masters were in real life.
She narrated her version of a revolution: they actually did not know about anything that big and that critical was happening in big cities until commies came to villages to “dispossess” things from masters in order to help poor and working class. People like my granny did not know that they were supposed to “struggle” and “survive”, they just worked and lived. That simple, they did not need anybody to do things for them. How my granny ever ended up in Siberia, is whole another story. They were refugees from Ukrain after the World War II, when the massive starvation began; as funny as it was, my dad was born on the way to Siberia. He has a Kasach birth certificate :)
I did not have everything today’s kids have, I did not have big televisions to tell us a story, I did not have entertaining things, but I had my granny to tell me a true story of how things were. Even though my childhood was not all that great because of neverending bullying and things, I am still looking back to my childhood with nostalgia and mixed feelings. There were great moments deserve to be remembered like my granny and her stories.
They are both rest in peace today, unfortunately, my granny has lived without her husband for almost ten years, but now I am sure they are together and happy again. One very promising thing she gave me, the age to which she lived. She passed away at 90 years, so this age is the “deadline” for me too :) Now I am “pursuing” the same career of a “lazy” woman. My husband is doing everything for me, I mean everything, except one thing. I am able to think :) Well, I have a long-long life ahead of me :) The only obligation I have at this point is that I have to “use it” up to the potential, do the best out of what I have.
Wednesday, November 24, 2010
Reflection on government in our health life
I oppose the “umbrella” solution in the form it pronounced right now, so called "managed care" concept. I believe, that the solid lasting solution is not in a bunch of regulations and “shelter” provided by the government. There is no urge to “guide” people everywhere, this approach to a problem will only create the attitude “why do I need to do anything? the big brother will do everything for me, he always does!” It is a welfare state of mind, which promotes poverty and immorality. There is a tail in Russia that has a thesis, that if somebody always taking care of a person, sooner or later the simple conclusion can be made: “if I give him the food, why not I chew it for him too?”
Salaried doctors are good for minor problems, because they will not care about patients (why? they will be paid anyway, have the nice dinner and things, they do not need to think about better service). I believe that, by nature, people can manage to sort out good and bad, they often only need information, not tight guidance. Healthy competition can support people in finding the right path in improving their services. Free people much more often are generous to vulnerable, than those who are relying too much on government.
References
http://www.cato.org/pub_display.php?pub_id=6698http://www.telegraph.co.uk/news/uknews/1498511/Welfare-promotes-child-poverty.htmlhttp://media.barometer.orst.edu/media/storage/paper854/news/2002/10/28/Forum/Baro-Columnist.Paints.A.Poor.Picture.Of.Welfare-2294519.shtmlhttp://patterico.com/2008/10/13/obamas-95-tax-cut-illusion/
Salaried doctors are good for minor problems, because they will not care about patients (why? they will be paid anyway, have the nice dinner and things, they do not need to think about better service). I believe that, by nature, people can manage to sort out good and bad, they often only need information, not tight guidance. Healthy competition can support people in finding the right path in improving their services. Free people much more often are generous to vulnerable, than those who are relying too much on government.
If the some rural area is the context for schema of delivery healthcare services, traditionally, there is no competition; I believe, that the fact, that everybody knows everybody and poor reputation will stick to the doctor, can stop or at least slow down unacceptable behaviour.
As many of you probably know Alaska is very independent-minded state, probably because it is still an America, but, at the same time, the territory geographically separated from America. I learned here that people can and will be accountable for their life, up here it was a matter of survival.
References
http://www.cato.org/pub_display.php?pub_id=6698http://www.telegraph.co.uk/news/uknews/1498511/Welfare-promotes-child-poverty.htmlhttp://media.barometer.orst.edu/media/storage/paper854/news/2002/10/28/Forum/Baro-Columnist.Paints.A.Poor.Picture.Of.Welfare-2294519.shtmlhttp://patterico.com/2008/10/13/obamas-95-tax-cut-illusion/
Tuesday, November 16, 2010
Some thoughts about healthcare and money
I cannot stop thinking about it just because I am working in a hospital and even perusing healthcare career studying.
I am officially disabled, fortunatily, I have invisible disability now (thanks God!). I have gotten a job because I do not look like the person who is making living on Government check. In fact, I never received anything from the Government, not even a tax exemption or something. I do not really need any help from the Government, thanks God, I can be useful to the society, and the society pays me back.
The only thing is that I do not want any intrusion in my life. I am getting angry, when I have to pay twice as much as “ordinary” people do. For example, for travel I need to make special arrangements, rent a big car to carry wheelchair, rent wheelchair itself, and so on. On top of it I have to pay ridiculous taxes. My hard earned money which I desperately need myself tom people who, in lots of cases, just do not want to change their lifestyle and keep living on a Government check! Why? It all looks like I have to pay twice just for being alive and relatively well. I want to be able to be nice and do donations like I always did. If those in Government decide to raise my taxes, I will have to forget about it. Just think about surviving. Alternative for me looks very sad: just sit at home, do nothing, think nothing and hope for nothing.
I am officially disabled, fortunatily, I have invisible disability now (thanks God!). I have gotten a job because I do not look like the person who is making living on Government check. In fact, I never received anything from the Government, not even a tax exemption or something. I do not really need any help from the Government, thanks God, I can be useful to the society, and the society pays me back.
The only thing is that I do not want any intrusion in my life. I am getting angry, when I have to pay twice as much as “ordinary” people do. For example, for travel I need to make special arrangements, rent a big car to carry wheelchair, rent wheelchair itself, and so on. On top of it I have to pay ridiculous taxes. My hard earned money which I desperately need myself tom people who, in lots of cases, just do not want to change their lifestyle and keep living on a Government check! Why? It all looks like I have to pay twice just for being alive and relatively well. I want to be able to be nice and do donations like I always did. If those in Government decide to raise my taxes, I will have to forget about it. Just think about surviving. Alternative for me looks very sad: just sit at home, do nothing, think nothing and hope for nothing.
Thursday, November 11, 2010
Student
Well, new twist in my career - I am a student now :)
Walden University pursuing Masters of Science. I like it, in fact, when I was in deciding mode, I was thinking that I will expand my horizons to some higher level and will learn more some English :)
What can I say, it is working for me. I am getting what I wanted to get. Great.
Nice side effect for me - I am always busy :) Researching and reading stuff. Actually, I am really pleased to have so many resources under my fingers. Best way to keep your mind working is to work. So I do. Well, if the nature has decided to shorten me on something - it is my job to find a way to lengthen the rest.
Walden University pursuing Masters of Science. I like it, in fact, when I was in deciding mode, I was thinking that I will expand my horizons to some higher level and will learn more some English :)
What can I say, it is working for me. I am getting what I wanted to get. Great.
Nice side effect for me - I am always busy :) Researching and reading stuff. Actually, I am really pleased to have so many resources under my fingers. Best way to keep your mind working is to work. So I do. Well, if the nature has decided to shorten me on something - it is my job to find a way to lengthen the rest.
Wednesday, March 3, 2010
New things
As l already mentioned it in Dan's blog (the link is on the right side of the post) I would be adjusting now to a new things.
Smells. It's driving me crazy! First (about two years ago) it started as phantom smell of household chemicals like bleach or something. And it "transformed" to smell of burnt toast.
First (about half a year ago) it started as a weird smell when I was having headache or just my heart was going crazy over something. It was just beating very fast.
And now I smell the burnt toast all the time! This smell seems to replace all the good around. I'm a girl for Christ cake!! What about my favorite Chanelle? What about my roses or any other beautiful flowers? Why I smell this not great not appetizing in any way thing? Why not some spring smell, some flowers.
Life is not fare at all. (angry-litle-girl-smile)
Smells. It's driving me crazy! First (about two years ago) it started as phantom smell of household chemicals like bleach or something. And it "transformed" to smell of burnt toast.
First (about half a year ago) it started as a weird smell when I was having headache or just my heart was going crazy over something. It was just beating very fast.
And now I smell the burnt toast all the time! This smell seems to replace all the good around. I'm a girl for Christ cake!! What about my favorite Chanelle? What about my roses or any other beautiful flowers? Why I smell this not great not appetizing in any way thing? Why not some spring smell, some flowers.
Life is not fare at all. (angry-litle-girl-smile)
Monday, February 22, 2010
Be happy!
Happy. Be happy. What is it? How to get there? Is it something everybody can have?
I thought about that for so long and so many times this topic just appeared in my head.
Here is what I believe. You and only you can decide be happy or miserable the rest of your life. You and only you can make steps in this direction. Your happiness depends only on you. Nobody else could make you happy. Nobody. If you don’t want that – nobody would ever succeed on making you happy.
I love my husband, I love my life generally. And I do want to be happy because I really truly believe I deserve it; because every person on this Earth deserves it. Every person on Earth could get it with no doubts.
Of course there is no fairy tail for everybody, but what is definite though and never ever change is just that every person on the face of this Earth get a chance. Chance for success, chance for true love, chance for happiness and the thing is to be ready, really ready with your mind and your body to take it.
Every human being is getting ready for this chance all his first life, sometimes there could be several chances. The human just has to have really opened eyes to see it. Really opened ears to hear it and really opened mind to feel it.
So first – you have to see it, second you have to be real ready for it and third – just take it easy. Jump on it but not abuse it.
And finally when you get big return everybody say that you’re just lucky. Accept it. Yes, you are. Only you actually know what it takes to be that lucky. Enjoy it :)
e are my little thing which I used to do to stay relatively strong without any medications. I used to do it and maybe somebody could use it too and stay strong :)))))))))
Every day (morning before breakfast) I go to gym. In the morning because I’m getting real bad fatigue usually so exercising after work is just impossible for me. But I do need exercise on my legs and arms. I need to move my legs (treadmill) because I’m sitting a lot. As I mentioned before I used top use wheelchair more and more so just to help it not to get too weak. And of course I need my arms to be real strong so that ion case of falling I could hold myself.
And as weird as it sounds I decrease my tremors by shooting. I really didn’t expect such an effect at all. You supposed to have strong hold and everything just to shoot good. But not other way around and I went other way around. Amazing!
I thought about that for so long and so many times this topic just appeared in my head.
Here is what I believe. You and only you can decide be happy or miserable the rest of your life. You and only you can make steps in this direction. Your happiness depends only on you. Nobody else could make you happy. Nobody. If you don’t want that – nobody would ever succeed on making you happy.
I love my husband, I love my life generally. And I do want to be happy because I really truly believe I deserve it; because every person on this Earth deserves it. Every person on Earth could get it with no doubts.
Of course there is no fairy tail for everybody, but what is definite though and never ever change is just that every person on the face of this Earth get a chance. Chance for success, chance for true love, chance for happiness and the thing is to be ready, really ready with your mind and your body to take it.
Every human being is getting ready for this chance all his first life, sometimes there could be several chances. The human just has to have really opened eyes to see it. Really opened ears to hear it and really opened mind to feel it.
So first – you have to see it, second you have to be real ready for it and third – just take it easy. Jump on it but not abuse it.
And finally when you get big return everybody say that you’re just lucky. Accept it. Yes, you are. Only you actually know what it takes to be that lucky. Enjoy it :)
e are my little thing which I used to do to stay relatively strong without any medications. I used to do it and maybe somebody could use it too and stay strong :)))))))))
Every day (morning before breakfast) I go to gym. In the morning because I’m getting real bad fatigue usually so exercising after work is just impossible for me. But I do need exercise on my legs and arms. I need to move my legs (treadmill) because I’m sitting a lot. As I mentioned before I used top use wheelchair more and more so just to help it not to get too weak. And of course I need my arms to be real strong so that ion case of falling I could hold myself.
And as weird as it sounds I decrease my tremors by shooting. I really didn’t expect such an effect at all. You supposed to have strong hold and everything just to shoot good. But not other way around and I went other way around. Amazing!
Sunday, February 21, 2010
Tamara
I can't stop thinking about her.
This woman from my birth country. Tamara Cheremnova /she is Russian and all this text is in Russian/. She is so strong and unbelievably happy, just kind of abnormal happy for her exact circumstances.
She was born on 1955. Almost right after (she was like about 2-3 year of age) she was diagnosed with Cerebral Palsy. It's terribly scary diagnosis by itself. But in addition to that she was given another one, even more terrible for her. She was named as retarded person. When she was 6 years old her parents just give up on her, because they couldn't give her appropriate care and so on. She was put in special school where she wasn't given any basic education at all. She didn't know how to write, how to read, basically she just didn't know anything by default.
And what made it really terrible for her, she was put in environment where she just couldn't get any education. Nobody really cared about those kids, nobody really tried to give them anything useful, anything to help them, they weren't feeling love. It's terrible thing, terrible. Love is what helps people to live basically. And they didn't have that.
But Tamara got real lucky because every terrible environment has little room for exclusion. There was one “crazy” teacher. Everybody just made fun of her like she was crazy. She tried to do for kids what they were not given by society – love. This “crazy” teacher taughtTamara some basic things, she read lots of books for Tamara. That was how Tamara got to the point of being a writer. But was still in that environment she needed to deal with. There was no “fairy tail” for her.
Even more then that she was kind of bullied by others (her "care givers"!!) all the time. Her basic rights were kind of stolen at that point. I really don't know and Tamara is telling same, even she doesn't know it for sure, how she surviving all that.
Well, one day she could get the second opinion and that most scary diagnosis was a history for her. She wasn't retarded any more, that “crazy” teacher actually helped Tamara to get that.
But what drove Tamara? What made her stay alive? She is a writer. She writes children books, she can't do it herself sometimes because of tremors and sudden moves but there are some wonderful people helping her. Now she is becoming kind of famous, but people who reads her books, people who actually making her famous don't really know that she is disabled. In their eyes she is just a wonderful person with big talent. That what she actually wanted all her previous life.
But what makes me real sad that she is still asking herself “why I'm here?” “who really needs me?” “who will ever appreciate what I do?”. Those are kind of questions lots of people asking themselves. The difference is that she really feeling like it. There is no point of light. Nothing. Just empty space.
I really understandf that because I was there for too long. Right now I found a oplace on Earth for my soul, I'm trying to find myself in this World. Identify myself. But her..............
I don't know the answer to any of those questions. I'm really afraid to tell her anything, because I'm in tears now and I don't want to burst into tears in front of her.
She is still in between the worlds of "nothing" and "happy". "Happy" is a really state of mind. And she decided to be happy. She decided............But is she?
Friday, February 19, 2010
I have very little to say this time around.
Sometimes I ran into story of what I could experience but didn't (Thanks God!) and it makes me feel a mix of everything. Sadness, madness, happiness: but overall happiness anyway. I just love my life so much and thankful for what I've got so far. And I do feel for those people.
But when I hear stories from people with disabilities in my birth country (yes, right now it's not a "home country" it's just birth country) I realize that I would never ever go back. This country is just not for me.
You can say I’m kind of queen or something but the reason for saying that is pretty simple. I just got my new spectacular life and just want to eat it, drink it, smell it, experience things in it, be wild sometimes, be a kid (I should say again but really for the first time for me). Oh yes, I’m kind of greedy person – greedy for life I’ve never had. While others were busy having fun with something I was busy surviving. So now I want it all: life with fun, with disappointments, with everything in between.
I learn the hard way that the only way I get to be taken care of is if I’m in charge and of course my perfect husband. Well. I could be harsh on people probably but it’s simply because I’m in learning curve of how to socialize.
I was always most bullied, easiest target I would say. So I never really had friends. I’m just learning how to make those now :) Hope I’m good student here :)
Well, I just can't be sad too long :) Obviously.
Sometimes I ran into story of what I could experience but didn't (Thanks God!) and it makes me feel a mix of everything. Sadness, madness, happiness: but overall happiness anyway. I just love my life so much and thankful for what I've got so far. And I do feel for those people.
But when I hear stories from people with disabilities in my birth country (yes, right now it's not a "home country" it's just birth country) I realize that I would never ever go back. This country is just not for me.
You can say I’m kind of queen or something but the reason for saying that is pretty simple. I just got my new spectacular life and just want to eat it, drink it, smell it, experience things in it, be wild sometimes, be a kid (I should say again but really for the first time for me). Oh yes, I’m kind of greedy person – greedy for life I’ve never had. While others were busy having fun with something I was busy surviving. So now I want it all: life with fun, with disappointments, with everything in between.
I learn the hard way that the only way I get to be taken care of is if I’m in charge and of course my perfect husband. Well. I could be harsh on people probably but it’s simply because I’m in learning curve of how to socialize.
I was always most bullied, easiest target I would say. So I never really had friends. I’m just learning how to make those now :) Hope I’m good student here :)
Well, I just can't be sad too long :) Obviously.
Wednesday, July 29, 2009
my big passion
I have a big passion now. Photography. Too bad I don't have enough time - I could spend days doing photos. Taking picture with the camera is not only one step. If you really want a great photo - you should spend lots of time reading theory on that. And photoshoping: not making stuff up but cropping, cleaning from "noise" and stuff just making your unique picture even more beautiful. This takes time.
I love this kind of stuff probably because it’s a part of life. Especially here in Alaska, I think it’s a crime not to try to capture the beauty around you. As they say – you don’t need to go anywhere just stand in one place and spinning your body with the camera in your hands. You can easily end up with hundreds of beautiful pictures.
Of course I couldn’t do anything without my husband. He helps me always and I’m just happy that he loves this thing too. So helping me here is not something he got to do but doesn’t really want.
I love this kind of stuff probably because it’s a part of life. Especially here in Alaska, I think it’s a crime not to try to capture the beauty around you. As they say – you don’t need to go anywhere just stand in one place and spinning your body with the camera in your hands. You can easily end up with hundreds of beautiful pictures.
Of course I couldn’t do anything without my husband. He helps me always and I’m just happy that he loves this thing too. So helping me here is not something he got to do but doesn’t really want.
Monday, July 27, 2009
irony of life
The irony of my life is that my granddad had the thing I have. Different reason though, he was a parachute coach during World War II. He had lots of jumps and doing that stuff he damaged his spine. Well, he was clumsy and all other things (not everything I have though) but he got laugh at a lot. And I was the one (I believe only one) who didn’t laugh at him. Even more I helped him the way I could anyway. I love my granddad, he passed away but I know he is in a better place now and looking down at me. I’m sure he likes what he sees I caught my dream for the tail J He was paralyzed at the end of his life, not whole body but legs. Well he was an optimist big time. I believe you could spend your entire life and not get that but he did. Really truly did. He was very involved all the time, especcially impressive it was when wasn't phisically able to gon places. He didn't have wheelchair (how sad) so he was "tied up" to his bed. But anyway - he was listening to the radio, he was reading lots of newspapers, books, he aws playing with crosswords, he was a Big Guy. I mean not his phisical body but his spirit.
Later in a life I got involved in volunteer work with disabled people. War veterans, disabled from birth but I really admired those people. Sometimes I felt like I look from bottom to top of a person, not how it was physically. Most of them were on wheelchairs. Some were with ruined arms by bombs and grenades. But they all are great people.
And now here I am. On a wheelchair more and more, first I got there only “for a moment”. And now it’s a part of my life.
Another thing what amazes me right now that when I was a kid I was listening “tails” about Grand Canyon, Hawaii and I thought that I want there so bad. But I would never get there. Well, I’ve been to Grand Canyon and Hawaii :)
OMG I’m so happy that I my little “never” dreams came true! And even more then that.
Thank you God for heping me to get here!!!
Later in a life I got involved in volunteer work with disabled people. War veterans, disabled from birth but I really admired those people. Sometimes I felt like I look from bottom to top of a person, not how it was physically. Most of them were on wheelchairs. Some were with ruined arms by bombs and grenades. But they all are great people.
And now here I am. On a wheelchair more and more, first I got there only “for a moment”. And now it’s a part of my life.
Another thing what amazes me right now that when I was a kid I was listening “tails” about Grand Canyon, Hawaii and I thought that I want there so bad. But I would never get there. Well, I’ve been to Grand Canyon and Hawaii :)
OMG I’m so happy that I my little “never” dreams came true! And even more then that.
Thank you God for heping me to get here!!!
Wednesday, July 15, 2009
how do I do it
The secret is actually no secret. The life is in movement.
You keep moving no matter what, you fell down but you got to get up and keep going.
I have bruises all over my body :) like a teenager :) Most of the time I don't even know how and where I've gotten them :) And the point is that you just try to ignore it at least I do. It's just a part of my life that's all.
I do hate those buttons on the clothes :) But just try to play with little balls in hand all the time - this way you keep you hands ready. Having two or three balls at a time try them to keep in the hand without helping by other hand, just playing with it with fingers.
And for the balance my physio therapist showed me a cool exercise: you lay on the back on the half-round beam on the floor with your legs bended in knees resting on the floor. Then try to balance your body on that with you hands resting on the floor. Then lift up in the air both hands slowly, one then another, then both. It won't grow back my cerebellum but it definitely teaches other parts of my brain do the job.
To train my balance in the gym I do treadmill as long as I can (about 15 min) walking not hanging to the handle. But it has to be there anyway because whatever happens (sudden move or something) I got to be able to grab something quickly.
You keep moving no matter what, you fell down but you got to get up and keep going.
I have bruises all over my body :) like a teenager :) Most of the time I don't even know how and where I've gotten them :) And the point is that you just try to ignore it at least I do. It's just a part of my life that's all.
I do hate those buttons on the clothes :) But just try to play with little balls in hand all the time - this way you keep you hands ready. Having two or three balls at a time try them to keep in the hand without helping by other hand, just playing with it with fingers.
And for the balance my physio therapist showed me a cool exercise: you lay on the back on the half-round beam on the floor with your legs bended in knees resting on the floor. Then try to balance your body on that with you hands resting on the floor. Then lift up in the air both hands slowly, one then another, then both. It won't grow back my cerebellum but it definitely teaches other parts of my brain do the job.
To train my balance in the gym I do treadmill as long as I can (about 15 min) walking not hanging to the handle. But it has to be there anyway because whatever happens (sudden move or something) I got to be able to grab something quickly.
Another thing I do in the gym is to do cranches side ways (using 45 Degree Hyperextension Bench). I lay on the machine sideways and lift my body trying to keep balance. It's hard, very hard for me, but iI'm pushing myself here trying to improve my balance skills.
Another machine I always use is lat-pull-down, I only do it standing up for (again) impoving my balance skills. To keep my hands strong in case of falling down - lifting weights.
And…….Of course you have to be kind of spiritual. I’m not that religious (you know formalized religion just not my thing) but it doesn’t stop me from being spiritual. God created me that way means God had a reason to put me trough all I went trough. I was strong enough actually not to get to hate all the world, not to grab the gun and just shoot all people because they hurt me in the past. Thi9s strength God gave me. And I’m very grateful for that. I think because I took all that and managed it somehow I got rewarded. My life now is a big reward.
I love my life! Thank you God for giving me that!
Tuesday, July 14, 2009
my great husband
What I realized from my own experience and reading others people thoughts on this. It’s that if you have something making different it's just critical to have a partner which is always there for you. Not just understanding that you're different and needs a different approach, but helping you be yourself.
That what my great husband is for me. He is helping me be myself: it's just priceless. He gives me the opportunity to do things I've never been able to do. Like for example simple thing: when I was a kid I was dreaming about big excitement. Like let's say roller coasters were just out of my reach always. Because my physical condition I just couldn't do that childish thing :)
So that trim to Orlando Disney world was kind of revenge for me :) I was with my husband what could stop me from doing that? Nothing. So I got so much adrenalin in my blood - the amount I supposed to get from all childhood I guess :) And another thing: I was so happy to be able to walk around ALL DAY long. OMG it was unbelievable. Really, because 20-30 minutes for me usually is about all I could do; because of my fatigue. But being able to enjoy myself all day long is priceless.
I do have one dream though nobody (even my great husband) can do for me. Since I was a little child I was dreaming about it. Like I was wearing “princess” dress with lots of layers that it goes almost a trapezium from my waist. Wearing hills (I can never wear a hills in million years, I can’t even stand in them) and dancing waltz with nice violin on background with my great husband as a partner. It’s a just a dream which can never be a reality, but hey having a dream means I’m still alive and well :)
That what my great husband is for me. He is helping me be myself: it's just priceless. He gives me the opportunity to do things I've never been able to do. Like for example simple thing: when I was a kid I was dreaming about big excitement. Like let's say roller coasters were just out of my reach always. Because my physical condition I just couldn't do that childish thing :)
So that trim to Orlando Disney world was kind of revenge for me :) I was with my husband what could stop me from doing that? Nothing. So I got so much adrenalin in my blood - the amount I supposed to get from all childhood I guess :) And another thing: I was so happy to be able to walk around ALL DAY long. OMG it was unbelievable. Really, because 20-30 minutes for me usually is about all I could do; because of my fatigue. But being able to enjoy myself all day long is priceless.
I do have one dream though nobody (even my great husband) can do for me. Since I was a little child I was dreaming about it. Like I was wearing “princess” dress with lots of layers that it goes almost a trapezium from my waist. Wearing hills (I can never wear a hills in million years, I can’t even stand in them) and dancing waltz with nice violin on background with my great husband as a partner. It’s a just a dream which can never be a reality, but hey having a dream means I’m still alive and well :)
Wednesday, July 1, 2009
philosophical
I was thinking about people, about life.
Sometimes I feel real sorry for people because mostly they don't appreciate what they have before something major would happen. It's really sad because I' know it I really believe that despite life isn't tied with the bow it's till a gift. Real big gift. Life is too fragile for not to love for it is. Love every day and it will come back to you with the same. Everything in life has a price and you're suffering you will be rewarded. Bad days worse surviving just because there are a good days. And they always waiting for being discovered.
All people, every one of them are getting a chance, sometimes several of them during lifetime. The deal is that are you ready for that? First of all emotionally; I really believe that if you really badly want something - you are going to get it. One way or another. If you really want something you work on it.
Everybody around you could say "What a lucky guy! He just won a lottery!" and only you will know for sure what price you paid for this. Success is not a lottery the size of it depends on amount of effort you put in it.
I do love life, very much; but I was wondering though if I would be like all "ordinary" people if I would be one of them?
On the other hand I don't really want to think about it. Life is too short to spent it on "what if".
Sometimes I feel real sorry for people because mostly they don't appreciate what they have before something major would happen. It's really sad because I' know it I really believe that despite life isn't tied with the bow it's till a gift. Real big gift. Life is too fragile for not to love for it is. Love every day and it will come back to you with the same. Everything in life has a price and you're suffering you will be rewarded. Bad days worse surviving just because there are a good days. And they always waiting for being discovered.
All people, every one of them are getting a chance, sometimes several of them during lifetime. The deal is that are you ready for that? First of all emotionally; I really believe that if you really badly want something - you are going to get it. One way or another. If you really want something you work on it.
Everybody around you could say "What a lucky guy! He just won a lottery!" and only you will know for sure what price you paid for this. Success is not a lottery the size of it depends on amount of effort you put in it.
I do love life, very much; but I was wondering though if I would be like all "ordinary" people if I would be one of them?
On the other hand I don't really want to think about it. Life is too short to spent it on "what if".
Friday, June 26, 2009
some thoughts
I was thinking.
I thought I was really fortunate in a weird way probably. But I could only imagine that if somebody had a life of “ordinary” people - normal moving, eating, everything and all of a sudden he got a disease. It's terrible; I think it's where people start taking drugs. They just know how it could've been and they are trying to get in this state again. I guess it's a way where people could start even abusing drugs; and as a result their own body.
Those people often don't accept the fact that they are just different.
I'm a different story I just don't know how to be a "regular kid". So for me accepting the fact that I was different wasn't a problem. I was different all my life.
I became a philosopher here :) Everybody is different so I'm really just a part of this society. I'm in fact in many ways like everybody else. I need to be loved. I need to be needed.
Just hope I could manage being helpful to the society for a long-long time.
I thought I was really fortunate in a weird way probably. But I could only imagine that if somebody had a life of “ordinary” people - normal moving, eating, everything and all of a sudden he got a disease. It's terrible; I think it's where people start taking drugs. They just know how it could've been and they are trying to get in this state again. I guess it's a way where people could start even abusing drugs; and as a result their own body.
Those people often don't accept the fact that they are just different.
I'm a different story I just don't know how to be a "regular kid". So for me accepting the fact that I was different wasn't a problem. I was different all my life.
I became a philosopher here :) Everybody is different so I'm really just a part of this society. I'm in fact in many ways like everybody else. I need to be loved. I need to be needed.
Just hope I could manage being helpful to the society for a long-long time.
Thursday, June 25, 2009
my body
My body knows very well when it's time to decompress. If I'm getting too much information my vision becoming blurry. The problem here that what if I'm on the meeting or something. Right now I'm just pushing myself to the limits here. If my vision getting blurry and I'm still physically able to soak information I would focus. Well, trying to. I'm not sure though that it's a way. I could go overwhelmed easly and just drive myself to fatigue. I'm getting this condition anyway often enough but I don't want to volunteer to that. How manage this? I don't know. I don't want any medications because it always goes like treatment for one thing and at the same time absolute damaging for another. I'm really afraid of this. You never really know whatv thing would get damaged.
Fortunately I have my MAN who is taking care of me really good. And right now I'm able to unstress in the evening. Every evening. Compare to my early ages it's a huge deal. Because back then I only collected and add all the stress in me. Which could easly lead to insanity or something even worse.
I've got this relief just in time, it just couldn't wait any longer, I'm not getting any younger :) And then everybody could go like "why?"
Today we are going to walk (well, my beloved husband is willing to do phisical here :) I do only enjoying part) The sun is out finally and we are going to be there too :)
My perfect husband doing even very basic things for me like I never do the dishes, never do gardening, never do cleaning (well I do it a little but just for a change, to have some fun).
I feel like I'm in paradise :)
Fortunately I have my MAN who is taking care of me really good. And right now I'm able to unstress in the evening. Every evening. Compare to my early ages it's a huge deal. Because back then I only collected and add all the stress in me. Which could easly lead to insanity or something even worse.
I've got this relief just in time, it just couldn't wait any longer, I'm not getting any younger :) And then everybody could go like "why?"
Today we are going to walk (well, my beloved husband is willing to do phisical here :) I do only enjoying part) The sun is out finally and we are going to be there too :)
My perfect husband doing even very basic things for me like I never do the dishes, never do gardening, never do cleaning (well I do it a little but just for a change, to have some fun).
I feel like I'm in paradise :)
Wednesday, June 24, 2009
one more great day
As they tell "Every day is a great day if you think not try missing one".
I'm not going to try that I just believe it no questions asked.
it is a great day in fact, the day is looking good already :) Yesterday it was not that good. I've got my bad fatigue I'm always getting but there are good days and bad days for it. And thanks God I have more of a good days then bad ones. There is always a reason to survive a bad day anyway. Because after a bad one comes a good day. I love it.
We had a week of fall in the summer. But now - sun's coming up and we are getting our summer back :) Great!
I'm not going to try that I just believe it no questions asked.
it is a great day in fact, the day is looking good already :) Yesterday it was not that good. I've got my bad fatigue I'm always getting but there are good days and bad days for it. And thanks God I have more of a good days then bad ones. There is always a reason to survive a bad day anyway. Because after a bad one comes a good day. I love it.
We had a week of fall in the summer. But now - sun's coming up and we are getting our summer back :) Great!
Tuesday, June 23, 2009
routine
Everyday (actually every evening) my perfect husband giving me a massage on my feet.
You know, there are nervous connections there to every part of your body. There is even foot map provided by some scientists.
By the end of the day I always have headache migraine type. It's a not a severe migraine like a lot of people have but bad enough to drive me crazy. I actually have lots of bad things: they cal it symptoms of my disorder. But all of them not that severe like if person has only one. For example if the person has migraine as a disease he usually has it big. Like you want to taker your head off you or something, I have that as well but not that bad.
But reason I started talk about things here - my husband. He help me manage all that without medications. My neurologist was ready to give me a list (whole list!) of prescriptions. Strong ones, like some kind of antidepredssants or even narcotics. But I'm fortunate enough to be able to avoid all this. Great!
Love him for just existing in this world!
You know, there are nervous connections there to every part of your body. There is even foot map provided by some scientists.
By the end of the day I always have headache migraine type. It's a not a severe migraine like a lot of people have but bad enough to drive me crazy. I actually have lots of bad things: they cal it symptoms of my disorder. But all of them not that severe like if person has only one. For example if the person has migraine as a disease he usually has it big. Like you want to taker your head off you or something, I have that as well but not that bad.
But reason I started talk about things here - my husband. He help me manage all that without medications. My neurologist was ready to give me a list (whole list!) of prescriptions. Strong ones, like some kind of antidepredssants or even narcotics. But I'm fortunate enough to be able to avoid all this. Great!
Love him for just existing in this world!
everyday things
If I do walking or something I need to think about what I'm doing: exactly what my next step would be and so on. Not philosophically but very particular where I put my foot next what would be possible thing to stop me from doing that. I did all that thinking for so long that it became automatic and not taking real big time so other people becoming too inpatient with me. So I’m not multitasking person at all but I just everything quickly.
But the thing is that I can't enjoy forest and walk at the same time. Well not by foot but anyway we found an answer to that. Great!
Another example would be my handwriting. It really difficult for me. Well, I can't do handwriting (if I do I often can't understand later what I wrote myself :) so computer came to my rescue here :)
My being alone in the past and not having the real choice of what to do had led to my today's great specialty in work. I was a programmer (not a bad one I think) and all those skills came together very good now. I am an Analyst right now, I love working with data love playing with them and trying to pull out of it something useful or just curious. And I love being able to give people back all the information I have, put in real use all the skills I've got.
I really believe that all experience I've got in life good and bad turned out kind of good anyway. One thing led me to be good specialist another led to have this philosophical way thinking.
I hate buttons on clothes though, I’ll tell you that! :) Sometimes I wanna torture those who invented it :)
But the thing is that I can't enjoy forest and walk at the same time. Well not by foot but anyway we found an answer to that. Great!
Another example would be my handwriting. It really difficult for me. Well, I can't do handwriting (if I do I often can't understand later what I wrote myself :) so computer came to my rescue here :)
My being alone in the past and not having the real choice of what to do had led to my today's great specialty in work. I was a programmer (not a bad one I think) and all those skills came together very good now. I am an Analyst right now, I love working with data love playing with them and trying to pull out of it something useful or just curious. And I love being able to give people back all the information I have, put in real use all the skills I've got.
I really believe that all experience I've got in life good and bad turned out kind of good anyway. One thing led me to be good specialist another led to have this philosophical way thinking.
I hate buttons on clothes though, I’ll tell you that! :) Sometimes I wanna torture those who invented it :)
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