my stroke

My first visit in the office for disabled

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lefthandLuckily, there are two or three benches outside.  Some of us are sitting, rest is treading water.

I’m  just in front of the office for disabled people. Sitting and watching people. Having a place to rest, I’m one of more fortunate. Everyone who came later isn’t that lucky. There is the small crowd, louder and more nervous every minute. People standing seem to be even more upset.

Suddenly, doors are opening and the fresh face rush towards them. „Excuse ma’am, we are all waiting!”, people are protesting. „Well, we all just want the forms!”

But yelling doesn’t seem to be finishing. The woman who succeeded in unleashing anger still wants to keep her sense of dignity. She yells a bit, insulting others. Insulting us on her way out. I’m sure that if she could, she would slam the door. To elevator.

I’m still sitting and I’m scared. Disabled in front of my face change, they come into and out the small cabinet. Some them by „taking the forms” really meant „taking the forms”. It’s my turn. I’m scared to death and become numb. Being unable to speak, I can only look and try to spell out words and feel like a hunted small animal. I regret not taking my mum. I really do.

But lady helps me. That’s the first time I hear the friendly voice in this building. After our common effort, we find out what I need. It’s not that easy! But I’m happy to be left safe and as silent as it’s possible.

On my way out I can let my doubts out. In the end, it wasn’t that bad. But I spot something extremely weird. None of the people looks disabled. No visual signs of disability in front of the bureau for disabled.

We just want to be sick officially to lead bit easier life. Absurd of need of giving the title to the disease is, at least there and then, huge. In some time I will meet these people who are going to decide whether I’m sick enough to make my life of strokie bit easier. That’s quite ridiculous.

So far I don’t have the paper proving that I’m not fully healthy in my wallet. Like others in this narrow corridor, I look very healthy. Tired, maybe, but healthy. My disability is sill to come.

my stroke stroke survivors Uncategorized

Happy Easter!

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Easter is coming. I want to wish you everything which is good, but that later. If i tell you now, you will not read the important part (( ;

Lately I’ve been spending hours a day talking to one guy;)  Sometimes it even sounds feels like a confession – well, since i don’t go to the church, maybe it’s needed. I talk about problems that I’ve been discussing here for past two years too.

Of course I’m being cautious, why deter someone right away, but still. Strokes, spasticity, hormones, epilepsy, Rheumatology issues, many things in general. Shortages in abilities too.

And after confessing all of it i hear what? ‚It’s ok, you are more than that’.

At first I was left in deep shock. Because 99 percent of reactions are entirely different.

It’s so rare to hear something like that from person who isn’t that involved into your problems for, at least months.

Typical reactions are rather like this:

uno: uncomfortable curiosity. Tell me more, how did you earn that, why don’t you get a job?  

Two: astonishment. So young? Whaaaat? Does it even happen?  

Three: being snooty. Come on, you are healthy already. You are all right. I told you before that you should lead healthier lifestyle.  

There are some more, but come on. These reactions make it difficult to talk about illnesses in general, and make it hard to meet new people.

But sometimes unexpected happens. You are more than this.  

I know i was writing about all these things on my polish blog in the context of working of our wellbeing. But now I see, that there are people who can see us not by separate components, but the sum of them. thats why I’m in the perfect mood, and I’m having great Easter. And my mood affects my family in a really good way.

Now my wishes:

I wish you the happiest Easter time. i wish you that all the cakes would end up on taste buds, not in adipose tissue. I wish you dry Wet Monday (i hate changing clothes several times a day) and good people around, who see the sum, not components. 

my stroke

The cause of my strokes is found! Carotid artery dissection. So happy!

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Another 4 days in hospital and… The cause of my stroke is found. Carotid artery dissection. Hooray!

As you may know, I’ve had millions of checkups of millions of things, I’ve been visiting doctors patiently for the past two years and increased my actions in this field after second stroke. And finally! FINALLY! Some doctors decided to send me to angiography.

And angiography showed a problem. It was conducted by brilliant specialist in the best Polish hospital (I have to thank my friends and my luck here)… But I didn’t expect much. Really I didn’t. I had just slight evidence that this procedure is needed.

My first angio CT scan didn’t small aneurysm or something like that. Something to be controlled, not to be removed.

Now we know that the problem has been bigger.

Actually this dissection is too small to have stent or some kind of balloon angioplasty. The procedure in the neck is very dangerous itself. I got better meds. Bye bye, aspirin!

Angiography is a procedure in which your arteries are the road for a cable with some kind of camera to watch my own arteries!  and they weren’t well enough. It could have been the reason of my two strokes. I’m happy that we found out this. The day I had answer has been the happiest one for the past 2 years. I mean it.

And I didn’t eat anything till supper!;) So imagine how huge it is;)

I think i had slightest stroke after that (my face dropped bit more;p but now it’s ok).

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Stairs. So normal. So scary.

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Stairs.

When you are disable nothing can cause bigger frustration. I’m somehow certain.

If you don’t walk well, stairs are effective tool of keeping you from the world. They are barier bigger than kerbstones and, I’m somehow convinced,  they are boat problem of people worth disabiliTy in the movement area.  Living on the first floor without elevator can be disaster which doesn’t let you do anything outside. You can’t go to doctors,  for shopping or anywhere workout external help.  So simple and so tragic.

I remember learning to walk the stairs after first stroke.  There were few conditions under physiotheraposts were willing to take me to stairs.  One: I must have been  stable enough.  Second: I must have been asegúrate at all times.  Going alone was out of discussion.  And it’s good to ask for help.  Believe me, for own comfort and security,  it’s better to be assecurated.

probably that’s why my bones are still OK:)

I’m after 2,5 brain strokes and just found that I’m in a weird place.  Walking up is non problematic at all,  but going down the stairs suddenly became problematic.  I feel less balanced.  As if my leg was working bit worse.  As if I delayed the movement of my left limb. It makes me crazy.  Every step is like a threat. Two steps – one stair?  Its like disaster. My physiotherapist would scream on me – But working on  bad patterns is doing harm.

So I try to keep my balance and beat my fears, work on my feet and walk.  That’s why I don’t use elevator in hospital i’m at the moment.

To tell the truth I think it’s about my fears and psychological burden. Once in my life I was in the situation that stress and depressive thoughts were affecting my body.  Feeling that it’s similar problem is big.  So I just keep going. And it will improve:)

 

in my opinion stroke survivors

Just to remind you woman who took selfie during her stroke

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This video has been online for few years, but I’ve seen it just recently. Maybe someone else haven’t watched it:

You don’t need to listen to what she says to see her face dropping, understand that she is struggling with the hand. She talks about other things too. For example about feeling numb. Or about the fact, that she had been released from hospital just recently.

She recorded the video to show her doctors what was her problem before symptoms were gone. Quick reaction and taking the phone can seem bit funny, but it helped doctors to diagnose her with three TIAs. Without video they thought that she was feeling badly from being tired or something like that.

Stacey Yepes was driving home (i had TIA behind the wheel too). Now she says that she keeps receiving messages from friends and strangers, that this vid helped someone to recognize a stroke. 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.

As some of you remember, I was Polish member of a board that had a pleasure to consult this spasticity website. Now it’s not only pleasure, now I’m really proud.

I’m somehow convinced that many (not only strokies!) will benefit from this project. This site arms us with weapon necessary to fight this condition:) And I’m not (sadly;ppp) paid to tell this, I really mean it:)

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I’ve left another hospital

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I left neurology ward and I’m both happy (because it’s good to be back home) and unhappy, very, very, very unhappy, as nothing, again nothing is found. Nothing that can cause stroke(s).

Nothing. Healthy woman. I just keep stroking every two years. Does it really happen?

I feel like a patient who’s had the most diagnostic tests in Poland when it comes to brain strokes. Loads of money, many people we know in different useful places and bit of luck havent helped me to find the cause of my stroke.

There are few checkups I have in mind. we can conduct that. And visit at endycronologist and rheumatologist. And my blood was taken to check extremely rare genetic condition. There is a chance like 1 to milion(s).

But the fact is: when there is effect, there must be also the cause.

But it’s not that bad. My stay was actually all right. I heard few things that i should laugh about. Or cry, i’m not sure now. Anyway:

  • I know that does’t sound very medically, but right now you need to count a bit on providence
  • We are leaning to the possibility that all was just metabolic syndrome.Quick googling the term and… it’s just nicer name for being fat. I don’t really fit into whole description of metabolic syndrome, but who cares. It can be this. But there are two problems. First: i don’t believe that, second: that diagnosis doesn’t end my anxiety. there is no possibility to confirm that and I will have to fight my fear  in some other way.
  • Your instance is the one we are all discussing 🙂

There were better things:

  • Ward was beautiful and comfortable. Whole hospital not so much, but my place was just perfect.
  • Everything and everyone was so friendly there!
  • I wasn’t bored at all.
  • I had lumbar puncture. It ruled out some things in my case and still it’s a new experience.
  • I’ve been seing one of my best friends frequently. And I wouldn’t see my other friends if I didn’t go there!:)

Well, that’s basically it. I was dissapointed a bit, but now I’m better. I’m kind of weird one among my friends, reacting with sadness for informations like „all tests are ok, results are negative”.

I know that cause of stroke doesnt have to be found, but that doesn’t make me any happier. I’m going to search for the reasons more and more:)

my stroke rehabilitation Uncategorized

What happens to your brain when you exercise?

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This is truely comforting. It’s so important to get to know out brain and impact of exercises.

For these of you who can’t watch the video, i will just give a short resume.

This lady speaks about three great things:

  1. Exercising makes you happier. During working out grows level of for neurotransmiters  (or neurohormons) which are responsible for your mood. You generaly get happier:)
  2. Your attention and concentration improves! Well, many researches prove that.
  3. exercising stimulates producing new cells in hipocamp. Hipocamp is very, very important, as stimulating it is improving our long term memory.

So. Three things so useful for stroke survivors. I believe all of  these:)  If we want to be happy, feel better and focus better, and have better memory,  invite someone for a long walk. Well, tommorow I’m gonna start the day with my x-trainer;)

my stroke strokes Uncategorized

We’ve not known treatment for stroke yet. But there is hope… Listen.

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treatment for stroe?My new friends (usually from Internet) ask me frequently what is the treatment for stroke. I always tell them that we don’t know magical cure for brain stroke. There isn’t anything which can give us back damaged brain. The best treatments are, at least I think so, taking general care of yourself, exercises for both brain and body, physiotherapy… Anything which helps you to regain lost functions.

BUT! Look here!

„Researchers from the University of Manchester have developed a new treatment that could limit the damage caused by treatment for stroke and also promote repair in the affected area of the brain. What’s more, the drug they’re using has already been clinically approved”

Doesn’t it sound brilliant?

According to this article researchers notices quicker neurogenesis in areas damaged by post-stroke treatment, but also by stroke itself.

Some of lab mieces even regained motoric abilities! The question is then whether results of the research will be published in prestigious title& weather these will be confirmed.

So far the article and results of tests gave me a big smile for a day. I dream about cure for stroke. Not even for myself, my body&mind&life quality isn’t that bad, but if i had a chance I’d go for clinical trial;pBut there are people much sicker. without ability to walk, or talk, or smile, or sit, or grab, or see, or with huge spasticity… This med would be so greatfor our community!

my stroke Uncategorized

how much does my stroke cost me?

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I need money. as some time ago I wrote about on the topic how our National Health Fund cuts money for stroke treatment and I try to save for  new computer, I think about money quite frequently.

I decided the amounts I’m spending on treatment from my pocket. The information you need first is that I get about 750 zł a month(=ca. 170 EUR=ca.180 USD). It’s a minimal amount you can get from our National Insurance Company for  saving there for a lifetime.

I decided to count my  usual money spent on ‚aroundstroke’ things.

Well, here it goes.

  • My physiotherapist gets 70 zł/h=c.16 EUR=c.17 USD) She comes here twice a week. Not too much, but also not too little. Some physiotherapists in my city demand much more. In some cases hourly rate can be lower. As far as I know my neighbors pay much more for the therapist.

Lets count: 70*4,5(weeks in a month i think)*2= 630PLN=146EUR=157USD

  • my water massage for hand and leg. Both for 7 zł (with a discount. Normally it would cost 14 zł). I go there twice a week.

Lets count: 7*2*2*4,5=126 zł=29EUR=31USD

  • meds I can only estimate cause I  buy bigger cuantities at one time. I mean doctors perscribe sometimes for more than one month. That’s fair.

Lets count: it should be around 100 zł a month=23EUR=25USD

  • But lets count further. Some specialists i see for „free” (public health system), but some I see in private offices. There are nice surprises. Allergist and laryngologist were available publicly and in sensible terms. But there are specialists you have to pay. The waiting line or rheumatologist is just 2 years in my city in public clinic. Not everything is linked closely to strokes. But still, in some way for sure. Like last September I was sitting in hospital, but still i managed to pay for endocrinologist.
  • Lets count: average 130 zł/month i suppose=30EUR=32USD

 

  • and checkups. It’s easy to get referral from the doc for TSH and level of cholesterol once a year, and for tomography twice a year. But for some I have to pay myself.

Lets count: the averagely it would be around 30 zł per month=7EUR=7USD

Together is gives us 1136 zł/month=263 EUR=284. And i get only 750PLN=173 EUR=187USD. 

That sucks big time;) But there is nothing much i can do.

I could sell all my books, but i use my parents, struggling to provide for me. That sucks. And I haven’t counted cost of my brand new nutritionist. which will cost me like 400-500 zł per month. All of it is half of my mom’s salary.

Well, i guess you should be wondering why I don’t wait to get everything publicly. But believe me, it’s impossible. Some things would be possible for sure, but it would extend the time of my recovery or even make my condition worse. I want to go back to work and provide for myself. You know what I  mean.