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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).

my stroke rehabilitation

Parasport, my my disability, my doubts.

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And if I am too healthy? (((;

shooting range comptetion shots Sometimes this question bugs me. Unbelievable. But only in the context of shooting.

I’ve been shooting in the sports club for a while now and it became my best hobby.

It is funny, astonishing and worrying at the same time.

I`ll explain to you what it is about.

Parasport (a so-called sport done by the disabled) is a category for the physically disabled. I hadn`t known about it until I started to fix papers for an international competition which was very important for me (I write about it here) – then I realized that parasport is a category for people without a leg, without a hand, with paresis, paralysis, spasms and so on and not for those who have problems w chronic tiredness, problems with reading or cognitive problems, with aphasia or mental impairment. Simply that.

And me?

Well, my physical disability expresses with subtlety – I don`t have a normal feeling in my left hand, I still have impairment of my left hand which is a stiff. My left foot toes still switch form spasms to bending upwards. Sometimes, when I don`t remember to remember I start to limp a little (grrrrrrrrrrrr).

Once, a friend from my club told me that you cannot see anything when you look at me. And it is true. Continue reading

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Well… I got a job. I lost a job. That’s life

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lefthandNot easy come, but easy go. I`ve lost my job.

Exactly 3 years and 5 months after the stroke I took my first job after the stroke. Almost exactly 3 years and 7 motnhsafter the strome I lost it. My 3-month contract for a trial period is not going to be renewed. So my first job after a stroke did not turn out to be such a success as I had counted for.

What went wrong?

Was it a false start or had I waited too long?

What was a obstacle – a hand or concentration?

Too many naps or maybe too few?

Was it me who failed?

I would like to have answers for even a few of these questions.

How do I feel?

Well, you may expect that not really good. I just feel that I disappointed myself. And that I did not manage. It may be true and false. I see a lot of fault in my failure on the firm`s side. But let`s be honest: if I had been a worker of the year, I would probably not have lost this job. If I hadn`t made mistakes, they would not ave written I made them. Simple things. I am analyzing everything and my head is unfortunately full of questions as well as reasons, arguments, words both comforting and blaming me, the firm and the whole world.

I have a sense of failure. I would have it after being fired from any job. It`s not something I could ignore by shrugging arms. It just isn`t.

I was obserinv my progress at work. And I am really glad with it.

It`s turned out that in my case job after the stroke is not impossible.

But it`s terribly difficult.

However, I had not been able to do more.

I hope I will not look for next job for another three and half years.

 

Uncategorized

I hate my birthday. But it’s a good time to wrap up the year

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rebirth, stroke anniversary, hospitalEvery year on 3rd of January I wake up in an extremely bad mood which doesn’t leave me until midnight. Typical birthday blues. I try to have a full agenda, but this year… I had a migraine again. Vomited in the medical laboratory, the world was more painful than usual.

However, my birthday is the perfect time to share with you successes and failures of 2017. I’m gonna use numbers.

My first hero is 2:

  • 2 amazing months: July and November, when I felt well. They were full of joy, warmth and peace. Sources of their awesomeness were very different from each other but in the end, I spent two months almost without pain and depression, cherishing normal life
  • For the past two months, I haven’t been rehabilitating myself and exercising. I can’t explain it. It’s about being extremely busy and extremely lazy.
  • I started doing two cool things. I opened my business an started volunteering for poor people and against food waste. Shop gave my unemployed life bit of meaning, work for less fortunate made my need of helping others less meaningless.
  • Two things I’m actually proud of: my Lewaczka.pl blog (this one too;p) and first money earned since the stroke.
  • Two job offers. Nothing worked out of it, I have no clue why, but still: someone believed in me enough to offer me a place in his team.
  • Two brilliant blog entries from a guest star:) In Polish only, sorry!;)

12:

  • Pills I’m taking daily,
  • months since last birthday blues,
  • months till my 30th birthday

3:

  • three new diagnoses. Lupus: most likely I’ve been living with it for the past 10-15 years, not knowing about it, carotid artery dissection – could be the cause of strokes. Lupus, dissection, hole in my heart, I have many things to choose from;)
  • three hospitals I was admitted. All three admissions were planned.
  • For the third time, I was guaranteed social security money. Yay. I’m kind of covered till September.
  • 3 amazing trips. Denmark with a friend, Cyprus with family, Emirates for NCD Alliance conference... All of them were really great. Denmark was like completing lifelong dream, Cyprus nice time with my beloved people, Emirates: oh wow, it was my blog-wise achievement. Big one. I can’t stress enough how I enjoyed the time there.

1:

  • neurolupus, new kind of lupus thrown into my face. It’s about to be confirmed, now I imagine it as a little worm eating my brain and leaving me with depression, dementia and meaningless life,
  • one participation in an event of a big importance;)  well, at least for sick people,
  • new, brilliant psychotherapist,
  • one physiotherapist who has left me for the man. But I can’t be upset about it. I wish her best of luck with him, they deserve perfect life:)
  • One pronouncement saying that I’m disabled. It’s official. It’s good. It gives me a discount for a train. Twice a year;)
  • One magazine cover my face was on. I’m a cover girl;p
  • One sport I started to practice. I’m lousy. But Olympic games are once every 4 years, no worries here;)
  • Foreigner, I’m helping in settling here. He’s a friend and we are very happy to see his life easier from time to time.
  • Epilepsy attack. unexpected. Adding two years to my auto-ban;) (do not mistake with autobahn;p I mean I’m banned from driving for 2 additional years).
  • Website about spasticity I’ve consulted,
  • Day of the retired people I was celebrating,
  • the brother whom I love. But my love starts to be conditional. I don’t love him that much when he puts glass full of water on my back.

15:

  • kilos I’ve lost,

million:

  • of series that I completed,
  • hours in bed,
  • smiles and pleasant things that happened to me,
  • litres of water I drunk,
  • hours of not moving while I should move,
  • interviews I gave. It feels like a million anyway.
  • Minutes of escaping the reality.
  • of good, kind people I have around and I’ve met.

115:

  • texts for my polish blog (!!!). Only…

26

  • texts for an English version of my strokie blog. Poor result.

Zero:

  • of new strokes! None!
  • plans for that years. Many dreams though;)

It was a weird year. Horrible in many ways, but still kept finding reasons to smile. But dear my 29. and dear 2018:

by the way… one of the first songs I learned to play on a guitar. very bad. But for now it’d be perfect. Gotta try!:)

my stroke Uncategorized

My third rebirthday. Annual entry for stroke anniversary:)

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Today I have my third rebirthday.

on 21st Dec 3 years ago I had a brain stroke. That means that I’m at the same time 28-year-old, 63-year-old and 3 years old.

rebirth, stroke anniversary, hospitalEach year I feel very weird on this day. I really feel that this date is important to me, even more than my birthday. celebrating the day you were born, its something natural, but I didn’t choose the way of my growth, right? My mom says that I didn’t say ‚no’ to food, but it’s not like I was choosing it. After my brain stroke, I conducted my life consciously to the point that I could. From the diaper to the place I’m in.

Last year was a bit peculiar to me. It cant be related in few words, so I’ll leave it until the new years eve;)

Today I’m gonna be traditional. I’m gonna tell you the ways my life changed in a good way. Areas that are better now.

As you know, the life of a strokie isn’t that great. Frequently it seems to be hopeless and horrible. But there can be found things that changed for better. I truly believe that each and every one of us can find at least one such thing, even if his or her life is miserable.

Well, I have to admit, that few things changed for worse last year. surprisingly I feel weaker than last before. Strange. This year I haven’t had a stroke, the year before I did. how to explain that?:o

so many things are going for worse, I’m not gonna focus on them because there are plenty which changed my life for better. Since last year I’ve noticed a big growth. I’m letting the list expand, even if it grows that big, that it’s too long to read.

so.

what has changed in my life for better after stroke?
    1. I take better care of myself,
    2. I’ve met few new, nice people,
    3. I’ve let go few people, who were bringing me pain. emotionally it’s a great thing for me,
    4. I’m less stressed with small things,
    5. I don’t have a stressful and horrible job anymore,
    6. I’ve learned knitting,
    7. I quit smoking,
    8. sometimes I’m rested,
    9. the card ‚you know, I’ve had a stroke’ still works for me,
    10. I know why I’m oversensitive to sun,
    11. I have a PFO fixed,
    12. I’ve I’ve found a new, great psychologist and i feel that she’s the one,
    13. i’m fixing, one by one, everything that’s broken in me,
    14. i have the first thing in my life that i’m proud of. I mean my blogs.
    15.  My blogs give me satisfaction. It’s a really nice, previously known feeling.
    16. I have the energy to learn new things,
    17. I’m overcoming my boundaries and things I’m scared of,
    18. I’m more peaceful than before. I feel less irritated,
    19. I’ve learned Spanish. I can communicate in this language. And I learned it by myself,
    20. I’ve lost 15 kilos,
    21. I don’t have to give my granny rides to shops. Not being able to drive sucks, but on the other hand, I love this excuse,
    22. I see that I’m helping people,
    23. My hair fall out less,
    24. i’m thinking about myself more,
    25. I started dating,
    26. I have a small collection of figures of goats,
    27. I understand people better,
    28. I’m not that worried about money. I know its very horrible, as my parents are providing for me, but on the other hand, before I was counting each zloty with a fear, and now I’m still counting, but without fear,
    29. I get long depressive states less frequently,
    30. I get rid of stuff rather than I collect them,
    31. I’m learning to have an order around myself,
    32. If its even possible, I’m closer to my brother than anytime before,
    33. again I appreciate being outside,
    34. I have the hammock!
    35. I can do things in WordPress better and better,
    36. I have ‚my own’ business. It goes badly, but it’ll be better. one day.
    37. I have a feeling that I’m more active.

Comparing to the Polish version this list is shorter for two points;)

But still it’s impressive, isn’t it?

I like the points about being proud of myself, as for the first time I really feel pride and satisfaction. It’s a new, great feeling to think about yourself well. For a change;)

Maybe you should try to think about such list yourself? Even in despair, we can find something. For me, the first thing was realising in a hospital that I have nicer skin.

It started with one. Now list is that long!:)

my stroke

Sharjah, NCD Alliance Gobal Forum, day 1 (noon;))

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konferencjaAs I was informing you on a stroketales facebook page, I was attending the NCD Alliance Global Forum 2017.

This is the translation of my polish text with some small amendments. Keep in mind that I wrote this text on a first day of the conference, after a whole day spent in planes, now it’s a week later.

My question is: do you even know what NCD is? Well, until I was invited to this conference, I had no clue what this term means.

NCD is an acronym for non-communicable disease. What is it? It’s an illness which you can’t catch someone or something. So stroke, lupus and depression fit the term, but AIDS, plague and flu don’t.

Actually, even Wikipedia doesn’t say ow wide this term is – it can be used only to chronic diseases, but it doesn’t have to;) But, for the sake of this blog let’sBut basically, that’s it. (by the way in polish we have term ‚choroby niezakaźne’. But it’s rather used only because we use term ‚communicable or infectious diseases’. ‚non-communicable ‚ is just waaaaaaaaaaaaaaaaaaaaaaaaaaaay to wide. But who I am to judge all of it;)

Let me go back to the main translation ( text from Dec 9th)

As you can suspect being a part of NCD Alliance Forum 2017 is, on one side an honour, on the other adventure, both for personal and ‚professional’ (stroke survivor’s;) causes. My blogs are the most precious thing for me, therefore being recognised for them is rewarding. Continue reading

loosing weight loosing weight project my stroke Uncategorized

Lose that weight, Kasia! I’m 15 kilos smaller:)

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I would do (almost) everything to have a better recovery. As we know, there is no ‚magic cure’ for regrowing brain (fingers crossed for stem cells therapy!), we have to just take the best care of what’s remaining and work hard to regain/improve what’s left.

For me, big weight isn’t simply an aesthetic issue, its connected to health and preventing next diseases.

I mean: by obesity may not affect many things, but sooner or later it will.’

So i’m losing weight. 15 kilos so far!:)))))))

you can sing with me. Wow! Wow! Wow!

It’s a hard work, it’s a daily struggle, but the reward is huge. I’m not going to complain then:)

 

Life’s been crazy recently, so I’m bit absent. I think i’m going to be back with you soon.

My Polish blog is doing well, but it’s hard to find time to translate things… Ill try harder. I promise!:)

Uncategorized

Gallery of the faces: I called. It was marvelous!

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I have a friend who is a fellow strokie. I might have mentioned him before, but I’m no sure. He’s a young French guy who suffered the stroke in Poland.

His stroke caused a big number of problems, such as aphasia, troubles with moving, spasticity… But this guy is determined to get better and gradually improves his health. Moreover, he does good things to the disabled community. He even plans his own blog:)

When we speak on Skype, he seems to be like me. My first impression was like: if I didn’t know, i would have thought that he had stroke problem. Normal boy, maybe looks for English words bit longer than a normal, fluent speaker, but you know stereotypes about French people & English;) my small experience shows that in France it’s easier to find a Polish speaker than English speaker. Anyway;) Continue reading

my stroke rehabilitation spasticity Uncategorized

Finally! Website about spasticity is here!

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With slight delay I may present you website with complex knowledge about spasticity:

http://lifewithspasticity.com

Right now only in English, but the website is going to be translated to other languages (including Polish, that’s great news for my Polish readers;) The morethe better i guess. I think the site will be available for more than English speakers:)

THE WEBSITE HAD IT’S LAUNCH, BUT WILL BE UPDATED.

For example next questions are waiting to be answered. You may remember that we (me and you, my readers) submitted some questions too.

To tell the truth I’m certain that the website will do many good things researches show people know about spasticity less than they should. Often they don’t even know what they are suffering from. This website is a first place online (I’m certain for like 99,99999999%) that collected important all basic and lot of non-basic data about spasticity. Actually it helped also me, and even before i wouldn’t call myself ignorant in this matter. Continue reading

loosing weight project my stroke rehabilitation Uncategorized

If you want laugh your head off, go for zumba class after stroke

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One psychologist told me once „go to zumba class or play instrument. It’s so useful for synchronising your cerebral  hemispheres”.

Finally I went for this Zumba thing. And once a week I’m synchronising myself.

What is this synchronising thing about? 

As we all know our cerebral hemispheres are responsible for different things (we call it leteralization) Right one is more creative and intuitive, left is more logical and analytic side, it is said. And it is said that our brains function best, we are the smartest, most creative and we fan focus best when our hemispheres are cooperating flawlessly.

even if it’s not an miracle medicine for my issues I think that trying to synchronising my brain can’t do any harm. That’s why I play piano every other day and…. I signed for zumba class 

That is the moment where you can fell from your chair from laughter. Because I feel like that:
mis

when I should feel like that:

balet

Zumba is kind of fitness dance. Energetic and fun. But. While my group goes three steps right, I manage only one and I don’t have time to move arms;p It’s so hilarious. Frequently I must stop and laugh at myself.:D But I hope that it will get better. Remember, practice makes a champion. Step by step. Poco a poco. Maybe finally I will use my hips one day, because so far I’m just one walking (dancing?) stiffness which can’t move two body parts at the same time:)

But I hope it will get better, both my grace and my brain and one day I will be able to work normally, full time. And I will be able to focus on something and dance like this man:

Of course classes are tough for me and for whole day I’m preparing to them by taking rest and obligatory nap just right before class. And after Zumba I don’t do anything, this coordination trening is in a way more demanding for my brain than for body. I rest, watch something and go to sleep. It’s all so tiring. Add the noise (some call it music;p), people and training and you will get the nightmare of every stroke survivor. But this pain brings me joy:)

And you know what? Me, mom and the friend are laughing and have un. We aren’t skinny type (rather opposite) and I’m proud. Of each and every of us. For me it’s because literally month ago I was learning to walk like a human being not a little penguin penguin and had to focus on balance very much. And now I try to dance! And I almost understand Spanish lyrics:))

PS

Of course that i would love zumba help me to loose weight, but i have very little faith that anything except doctor can help me…