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my stroke rehabilitation stroke survivors Uncategorized

Expenses of chronically sick people

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Inspired by an article from themighty.com I decided to write about the expences of chronically sick people in Poland. The situation is quite different from the American, so I think its worth to write, even though the topic was the same. Poland is different. Europe is different. Basically everywhere you have a public health care, better or worse, and, well, for better and worse.

This text doesn’t describe strokies’ expenses, I’m going wider. So:

what affects the wallet of an ill person?

  1. No work – many of chronically sick people do not work or work for a limited time. Or need to take days off  (hours off) to go to plenty of appointments. The loss of income seems to be basically the biggest factor that decreases one’s economic position.
  2. Cost of meds – in Poland they are partly refunded. Not all, not for every disease. So, for example, you can pay like 30% of the price, but on other meds go normal 100%. And, from my experience, these are the most expensive ones. For example my meds for lupus. No refunds, 100% of the price of the most expensive drugs i am taking. Another thing in Poland is that often only older generation drugs are refunded or even available. About availability: i go to Germany to buy one of my lupus drugs. they are simply not allowed to be sold in Poland. But they are way less harmful to me. The choice is quite simple. So each time I need a refill, my parent need to go over 50 km to German pharmacy (I don’t drive). Good that at least that’s the occasion to buy better washing detergents.
  3. Physiotherapy – it can be surprising, how often you need rehabilitation. So many not obvious diseases demand rehabilitation to keep patients in a decent state. Sure, rehabilitation is sometimes refunded. Sometimes. At least in Poland, access to physiotherapy is bad. That means that you pay. If you’re lucky, you pay after using the hours you’re entitled to. If not – you just pay. If you’re in a bad position, you’d just don’t have the physiotherapy at all. That means you are sicker than you should be. You could be healthier. But you’re not.
    At the moment I don’t have any kind of rehabilitation. I can’t afford it and I don’t want to ask my parents for more money.
  4. Seeing doctors – that’s tricky here. In theory, you have access to every kind of specialist for free. And sometimes it’s fairly easy to see them for the first time. for a visit to the office of random (really random, I found one that I didn’t have to wait for months) I waited for less for 2 weeks. But a first visit at the rheumatologist was scheduled in more than… 2 years. Yay! Guess what I did? I paid the same doctor and I went to her after a few months. Huge difference. There are many kinds of specialists that don’t have free spots for months, years ahead. Even when you pay.
  5. Travelling – I live in a big city, so most of medical procedures are here, within a few kilometres, but there are people who need to travel far. and people, who need to travel with a carer. I know one history of a woman who travels more than 500 km with her daughter to have her baclofen pump refilled. For me, it was quite complicated. Strokes happened out of my city, so whole treatment took place out of Szczecin as well. For me, little change, for my parents – huge expenses. Huge.
  6. Equipment, both mobility and adaptive. Again, in Poland, they are partly refunded, but if you want to have something more advanced, you need to pay out of your own pocket. for example, I’ve heard the legends of having the bathrooms adapted for the wheelchair, but I consider them real legends. But on the other hand, the cheapest wheelchair for my grandpa was refunded. Good, that we didn’t need much more.
  7. Higher bills. Do you use more water or electricity? You pay. Simple.
  8. Nursing and caring – Woah, that’s a huge one. especially that the expenses are big, refunds small  (or there are no). Usually, severely sick people here are taken care of family members. So it can limit also their income. But it’s not really only about full time caring. Sometimes sick people need help in cleaning, shopping or going outside with someone who would assist them. Expensive, expensive, hard.

Maybe there are more points, but to tell the truth, these are main. I struggle with some of them (or maybe… my parents do, because its them who pay for most of my medical bills).

in my opinion Uncategorized

I, Daniel Blake – human vs. bureaucracy

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When I saw first minutes of the movie I smiled saying ‚oh wow, film about ZUS*’, but I didn’t really believe that the ZUS part will be that big.

*ZUS – Zakład Ubezpieczeń Społecznych, eng. Social Insurance Institution

I, Daniel BlakeSoon I found out that I was right and wrong at the same time. This movie is something more than a story of a guy  who doesn’t want to be broken by institution. It’s also about the guy who is just good person with warm, honest heart. And about a woman, who has bad luck and many troubles and tries to handle the best way she can. And about the fact that good people are going to spread the good no matter what.

Of course it’s gonna sound like a biggest cliché but I have to say that, the film consists of many Kafkaesque elements. Institutions are often Kafkaesque. Think about that.

Daniel  ismore or less 5o year old guy after severe heart attack. His doctor strongly forbids him to work, but the fact that he can walk 50 meters and take something out from the pocket disqualify him in the eyes of insurance company. He lacks sufficient points from silly questions which disqualifies him in the eyes of The Institution. As there are strict procedures, he can’t appeal as long as he doesn’t receive a phone call confirming the letter he got. Going to The Institution himself  makes him even more frustrated.

Daniel tries to make his way in the reality of absurd in which he is forced to seek for a job he can’t really do, just to have any kind of allowance. He is forced to use computer which he can’t use, he is struggling with office workers who have to follow strict rules that don’t match reality. Our protagonist has to be fighter, but he doesn’t want to be one. He just wants to be treated fair and with respect as he is honest for others.

It’s just one of the aspects of the movie, I’m not even sure that it’s the most important, but in his story I see my story (these months without any income!)  and people I know from internet. It’s hard to express. The movie triggered the discussion in the UK, many people say that they know this theme from their experience, others can see the cruelty of bureaucracy for the first time. In my opinion the picture in the movie is milder than in reality. It doesn’t depicts well the constant fear which accompanies people who struggle for living while being sick.

Fear is our companion. Fear of second (third in my case) stroke, another heart attack, financial security, fear of evil commission… I couldn’t sleep at nights when I was waiting for my commission. I knew that I’m not able to work. What should say my friend with multiple sclerosis and after stroke which found out that commission thinks that she is able to work in an office? 😮 I believe her that she can’t. and i really think that her commission was heartless. She is like Daniel Blake (and me) – doesn’t want benefits for life. She wants to go back to job, but it’s impossible now. And there is a fear.

what should say my another friend who after another stroke is more and more disoriented and can do simply less things? She can’t sleep at nights either. Every commission in Institutions which should be here to help is so stressful for her, because she was mistreated, misdiagnosed many times, she was also badly treated by members of commissions. She can fight but I see her loosing faith. Sadly you can’t buy faith. In every second message from her I see these words. „I’m afraid”.

This reality is so difficult for most of people in need, but especially for these with cognitive problems. I guess I should feel lucky as I was in hospital after second stroke at a date of my complementary commission. First one couldn’t decide. Able to work or not able? Well, my second stroke helped them judge.

In theory we shouldn’t feel as suppliants in front of the offices. It’s our money which is given back to us. Still one of the phrases that i find on my polish blog, people can find me in Google by this sentence…

boję się lekarza ZUS = I’m afraid of the doctor from ZUS

how horrible is that?

Daniel Blake is true not only for Great Britain. Details may vary, but will be true for all countries in which a person is a number in the system.

It’s also s true emotionally.

It took away something like 3 liters of my tears.

I recommend it to all of people who

a) like good cinema

b) want to find out the ugly truth

c) want to understand less fortunate ones

‚d) don’t want to feel alone with their problems.

PS

there is also moving, not less important!, Katie’s story. It’s also important. the friendship is important, everything about this movie is important.

in my opinion my stroke

I got an increase on my monthly income! Yay!

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Our caring government, or National Insurance Company took care of people like me and we got increase on our monthly payment.

Me myself i got

1,92 PLN

which gives me about

0,44 EUR, 0,59 USD, or 0,36 GBP

more of monthly income.

I can spend it in plenty of ways! For instance:

buy 6 bread rolls in a discount market,
buy 3-4 bread rolls in bakery
buy one cigarette (illegally, but still possible)
use 200 l more of tap water
Buy half price ticket for bus in my city for 15 min,
Buy half price ticket for Warsawian bus for 20 min,
buy one lemon in the beginning of the season
buy 3 pencils with a rubber
buy a donut
buy two zucchinis in the season for zucchinis
buy sesame cookies
change it to 192 coins and throw them to every fountain thinking wish of winning big money lottery
send few (even more) complaining texts to friends
Buy two cheap instant soups
Buy one normal instant soup
buy Ikea hot-dog
Buy the cheapest beer in Poland
Buy one kilo of potatoes
Buy one issue of famous Polish tabloid
buy a lighter
buy a roll of toilet paper
But if I’m patient enough I can save this money for a year and buy:

set 32: knucke with fries and pickled cucumber

or

set 34: Penne with salmon and creamy souce or penne Alfredo, with ripening ham , driend tomatos, rucola and creamy souce

or set 35: grilled chicken breast with blue cheese, with rice and veggies

(menu of this restaurant).

If I saved for 3 months more I could have bought more excellent food. And for the change I could but matches on art.

Possibilities are endless! With 192 coins I could coninue my physiothrapy like that:

fasolki

 

almost, because i would have to save for beans:P

I can’t see any reason to complain. In fact, I should be happy. We have deflation, so actually they should lower amount I get…

PS

My brother, the best guy I know, helped me a lot while writing. I asked for ideas my friends also, but their imagination doesnt get the importance of this topic, sorry.

PS2