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Old 05-05-2011, 01:13 PM   #16
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Re: I had a stroke and need to talk about it

Linda,

I thank you very much for your kind words. I am happy to answer all your questions, although I have only a brief time today here. My dad has just had surgery this morning and I am off to sit with him at the hospital. I will return to carefully go through your questions, and share my feelings with you.

Your friend...Janet

 
Old 05-05-2011, 01:44 PM   #17
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Re: I had a stroke and need to talk about it

No problems Janet I understand...I hope your dad soon recovers from his surgery and I wish him the best...Take care and bye for now.

Linda

 
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Old 05-05-2011, 02:37 PM   #18
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Re: I had a stroke and need to talk about it

Linda,

My dad is sleeping for a few hours, so I have come back to answer your questions, as best as I can.

As far as the migraines, I did not ever suffer them. I only had the two or three horrible headaches in the days before my strokes. I took them as a warning sign that my blood pressure was terribly out of control. As it turns out, when I arrived at the hospital my BP was 265/165, the highest I ever had. I did have BP's in the 240/150 range previously, and my doctors were scrambling to get some control over it for months and years prior to the strokes.

As far as your question about the 3 episodes that you had in the 20 minutes, I am at a loss about that. I have spoken to so many survivors who have had no concrete answer to what constituted their strokes, so many doctors do not have the answers either. In my case, my strokes showed up clearly on my MRI and Cat Scans and still do. 4 white areas.

To be honest, I did not have the where with all to ask any hard questions following my strokes, as I was unable to think straight for 4 years. I have no idea of what was told to me at the time.

My strokes were clearly a result of my high blood pressure, as evidenced by my kidney failure, and ocular strokes. It has taken years to finally get my BP into the safe zone, although we are all at risk of future strokes simply by having them already.

I understand how scary all this is, and I only hope that you can trust the words we share about time being needed for recovery. It does get better, although it does take lots of time and patience with yourself. The more you can rest and keep yourself free of stress, the better. Acceptance is a very difficult, but necessary part of recovery. It is in this time that you can adopt new ways of thinking that will best help your future self...as positive as possible. And that takes some thinking out of the box, as I know currently things don't seem positive at all.

I am so happy that you have jumped in with both feet and are getting so much support from our wonderful friends here. I can't say enough about the importance of keeping connected to the group. The understanding that is shared here is a godsend. I look forward to many more conversations with you, as we all do our best to help each other through this life changing event.

Love Janet

 
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Old 05-05-2011, 05:34 PM   #19
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Re: I had a stroke and need to talk about it

Thanks Janet for all your precious help and infos...I love this place and all the people are so nice and I'm blessed to have all of yous. I feel less alone and I feel like the people understand what I'm going through...Thanks everyone for everything

Linda

 
Old 05-05-2011, 10:37 PM   #20
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Re: I had a stroke and need to talk about it

Linda,

Strokes can leave us feeling so misplaced! When what had become your daily patterns and movements are suddenly disrupted completely it is shocking and confusing. When all the movements you have used to perform your daily tasks have become either clumsy or impossible...it is terrifying.

Everything in that picture we have had in our minds of our lives are shattered, and the new picture is completely unclear, that is very overwhelming. One day we are one person, with a lifetime of experience being that person. The next we are another person in the same body, but we cannot make it work! We have to create another model of ourselves that combines both parts of us, and re-learn how to operate once again. It takes compromising between the old and new. We have to give up things against our choosing. We also have to create new things to fill the spots of all that we lost. We have to regain a balance to ourselves, and that takes time.

While we are in the earlier stages of recovery, we are still reckoning with our losses, and finding our new goals..not a seamless task. The physical recovery and the mental recovery are two different things, in my opinion. The sooner our mental recovery gets started, the better. Our bodies are on their own agenda. We can only do our best to offer our bodies what is needs most, and that is good nutrition, rest, stress free living, and distancing ourselves from our risk factors. After we have done that, it is up to our bodies to heal.

If you can separate your needs of your body, from the needs of you mind, you can work on both at the same time.

Protect your body from over exertion to encourage healing. Give your healing body what it needs first, so many of us feel the need to rush through this time consuming process, with "priorities" very confusing. The first priority is you. This event is a major call to attention, not to be taken lightly. We are stoke survivors because others loose their lives to stroke. Being able to put some words together is a blessing for us, as so many others do not get to do that. Being alive is being lucky, something I try to never forget.

As I have gathered friends here over the last years, I have been able to find a way that I can contribute to something I believe in. I had been so lost, as I wasn't able to do anything for so long. I was out for a bit over the last weeks, and I found that without writing to others, I felt pretty empty. The daily exchanges are an important part of my day. I keep coming back for that sense of belonging.

The actual writing itself is healing, both in content and in the act itself. Getting that brain to fingers wiring hot everyday for a bit keeps the lines open.

Before this gets too long, as I tend to do...I will close. Wishing you and all our friends here a good nights sleep and a good day tomorrow.

Janet

 
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Old 05-06-2011, 11:49 AM   #21
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Re: I had a stroke and need to talk about it

Hi Linda,
You have sure been here writing a lot That is wonderful and I am happy you feel like you met some new friends. About 4-5 months after my stroke and I could start to read and write a little, I spent a lot of time on this board and it was actually a good part of my continuing recovery. I can be honest that I don't think that my writing and thought processes would not be as far as they are now, because it is hard to write to yourself and you feel so alone. Here you know that some one is all ways listening and we are all having the same feelings, though our strokes are all very different. But the emotional side from a stroke is something that is never talked to us by the doctors of hospital. The emotional part is just as important than the physical side. To be honest, I don't think the doctors know what to say about your emotional state, so they just ignore it. It is not their fault. There is no blueprint on emotional recovery like there is on trying to walk on your walking recovery, for instance.

But seriously, this board is like an oasis with friends that understand me. We all have to "get back in the world" again at some point. Most of my casual friends pre-stroke are long gone. The close friends I still have try to understand as much as possible, but I am different now and they cannot understand that, and I don't expect them to. I am happy they stayed with me, but it is just not the same, though we all try. But that is why this forum is so good for all of us survivors here.

I may be in a situation social that I just don't feel comfortable. A year ago I would never even go out of the house, but I have been a few places, restaraunts and or bars or whatever to try and get back, but it just doesn't do it for me anymore. It is not a bad thing at all. It is just a new life for me now and every other stroke survivor understands that.

That is why, when the few times I go "out" again with friends, I just tolerate it for my wife's and friends sake. About an hour is good enough for me. But my point is, I always come back here over and over, because I can release the pressure of a social sitution and everyone knows what I am talking about. I know my friends don't like me to say the word "stroke". so I get my frustration out here on the forum. so I wish you well my friend and you are a very good person and I read every one of your posts, though I don't respond to everyone, but I read them and I bet thousands of others that may not be able to respond but read your good positive attitude. We all give each other hope here, it is so cool

So anyway I really wanted to respond to you earlier, but got busy with my new life and wanted to write sooner. I see there are a lot of new stroke survivors here and want to respond to each one in time.

For those that are "newbies" here... I want you to know that there is a good core of stroke survivors that read every post, but we cannot get there as soon as we want to - obviously -

So anyway Linda, that is my welcome I wanted to write about a week ago. You will be fine, I promise. It just takes a little time (actually a lot of time), but just you reacting and asking questions is a very good sign. Keep up the good work you are doing for yourself and to all of us.

God Bless,
Tim

Last edited by Positive Cynic; 05-06-2011 at 03:27 PM.

 
Old 05-06-2011, 06:16 PM   #22
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Re: I had a stroke and need to talk about it

Thanks Janet/Tim/all.

I had a relatively minor stroke but it was a stroke all the same. Actually it was in the brain stem and very uncomfortably close to the part that controls vital organs like heart rate. Different set of circumstances and I could very well not be around to write this. That plays on you.

I am 45yr and 4 weeks ago I felt like a 35yr old. Not I feel more like an old man. But it has helped learning that there are others my age who get strokes. I mean I smoked and had high bp. What did I think would happen?

Well, enough of that. Whats done is done. The fear of another one - a worse one is with me. Some fear I guess is good so it keeps me from risk factors. But I do miss my old self.

Last edited by max55; 05-06-2011 at 06:21 PM.

 
Old 05-06-2011, 06:48 PM   #23
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Re: I had a stroke and need to talk about it

hi max,
I am tim, (postive cynic). I don't want you to worry. In my thought. There is not a "little stroke" What ever your position is that your brain was altered no matter how big or small. I doesn't matter. though you may think that it is small, I promise you your brain has been altered at some point from your stroke.

I don't give any advice, but only support. But I have been on the board for quite awhile. And I hate to see people get back to work just after a stroke. The stroke surivors understand and others don't. I sure would not tell you what to do, but I also don't wont' yyou to get back to work too. this is a hard issue. You have to do what you need to do, but I have found that going back too soon to your work after a stroke. It really doesn't help you or the company, I hope this makes sense to you. sometimes I don't write what I mean to say. so god bless you max.
I can tell you that you have friends here that understand what you are going through
Tim

 
Old 05-07-2011, 08:26 AM   #24
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Re: I had a stroke and need to talk about it

Thanks Tim. Work has been going pretty well. I could have used a few more days off but its nice to get back to normal again. I have been able to leave early and mix in working from home so it's not been too overwhelming.

It has been a challenge at times trying to fight through my paranoia. The other day my left leg sort of fell asleep ( non stroke side ) and I was like "oh my god". Things like that. I notice all the small little things now.

Last edited by max55; 05-07-2011 at 08:28 AM.

 
Old 05-07-2011, 04:56 PM   #25
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Re: I had a stroke and need to talk about it

Wow Tim,

That last piece you wrote to Linda (11:49) was beautiful! I loved every word. Tim's writing has certainly shown his recovery. Although he did not have the words at the beginning, he was still quite able to get whatever he wanted to say loud and clear to me. I was another one who came here to learn how to type again. I have never gone back and read those first years, or any others for that matter.

There is no doubt that whole process of reading and relating to others here can be almost life changing to certain people, and I am one of them. I can only speak for myself, but it is more than just typing better, or making less typos now, it is about all that has come to light while doing so. Talk about "AHA" moments! I wish I could count them all!

Max, I also would like to introduce myself properly to you, and will have to do it when you start your thread (I hope I have not missed it, if you have already please forgive me). I will go back to the list after I finish here with Linda to check for sure. Anyway here is my first crack at saying hello, and welcome from me to you. We have a great group here, which I imagine you have already learned, and we are so happy to have you. I am looking forward to learning more about your story.

Janet

Max, I noticed you have not yet started your own thread. We want to have a place where we can all go to introduce ourselves and learn more about your personal story. All you need to do is hit the blue button "New Thread" above, next to the "Post Reply" button. Thanks! It cuts down on the confusion when we are talking about one person at once.

Of course anytime you want to write on any thread, feel free to do so...we love to know what you are thinking on any subject.

Last edited by writeleft; 05-07-2011 at 05:24 PM.

 
Old 05-07-2011, 06:34 PM   #26
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Re: I had a stroke and need to talk about it

Linda,

I would like to thank you..with a bit of explanation. I had tried to take some time off from the boards to work on a project. My days just did not flow well without my typical daily routine going. I thought taking the time I usually spend writing could give me enough extra time to do something else.

It didn't take me long to want to get back to my writing. When I did come back, I had several people who had noticed I was gone and were waiting for me to come back, you being one of them. That was so touching, and I want to make a point of letting you know how sweet that was to me...It really made me feel good, and was the perfect reminder of why I come here.

Of course, we all have times that we do not have much to say as well as times where daily life has all of our attention. But, when it comes to my daily dose of inspiration and comfort, I simply have to come here. I hope you find your own sense of comfort here too. It fits me like and old shoe, and I wish that feeling on everyone who comes here. I understand that everyone won't, that's just fine too.

It is now family time..and that is a another good story.

Janet

 
Old 05-08-2011, 07:15 AM   #27
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Re: I had a stroke and need to talk about it

Hi Janet, Tim, Max and all the other sweethearts of this big stroke family...After being absent for a few days I came back and read all of your posts and I'm overwhelmed by the kindness that I receive from each and everyone of you. You are all very nice and comprehensive and believe me YOU PEOPLE are the ONLY ones that I can discuss about anything related to STROKES (except my doctors) here's why I'm saying this...

-2 weeks after my stroke I had a panic attack that was caused by a more than I can handle degree of chronic anxiety that I have problems controlling since my stroke. That panic attack sent me right to the ER because it gave me sudden numbness on my OK side (numbness that lasted 20 minutes only) and made me think that I was having another stroke...All of this caused by all the anxiety and fear of having another stroke. My boyfriend (I have children with him and live with him) came with me at the ER and the doctor at the ER (general doctor) said that I had a panic attack caused by anxiety since anxiety can cause sudden numbness and sent me home...Now...since then my boyfriend is mad at me and thinks that I'm faking the stroke I had and that all the stroke symptoms I have right now is caused by anxiety BTW my stroke was confirmed by a CT SCAN and a Neurologist and my boyfriend was also present when the neurologist told me that I suffered a mild stroke. Since the panic attack my boyfriend is being very unkind and uncomprehensive and wants me to be the same person and forces me to do the same things I was able to do before my stroke. Every time I tell him that I can't do this or that, feel sick, feel down and cry or when I want to talk about it he gets all fired up at me and blames me of being a facker. He told all my children that and now I live with 5 people here that have absolutely no consideration for me and whatever I'm going through. I said to my boyfriend that I would bring him to my next Neurologist appointment with my new CT SCAN (the one I had 1 week ago) and that I would have the Neurologist confirm to him that I'm not facking..!!!

The word stroke and everything related to it or how I feel is something that I'm not allowed to talk about at home.....Sorry people I had to let it all out......

Linda

 
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Old 05-08-2011, 10:43 AM   #28
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Re: I had a stroke and need to talk about it

Linda,

Terribly sorry for what you are going through at home. We have to find a way to re-educate your companion. None of this nonsense will be helpful to you as you recover. I wish I could say I have never heard of anything like this before, but it is all too common.

I would first like to address the anxiety. I went through the same thing, I imagine we all do. When something happens that we NEVER imagined could happen, it naturally makes us realize that we are not immune to catastrophe, and if it has happened once, it can happen again. You were smart to go in, as you must stay vigilant with your new set of circumstances.

I lived with the anxiety for years before it took one of my doctors to point it out to me, and start me on treatment. I have also been back to the ER several times when things did not appear to be right with me. I am so sorry this has happened Linda, I understand how terrifying this all is for you.

What has happened to your companion is all to familiar. He needs to take a step back and learn about your new self. If he would agree to come here, we would be happy to very gently explain how stroke changes our lives, especially the first year. We all need some form of stable support, and your "family" that you live with are very important parts of that team.

I am happier than ever that you have this place to share your feelings and concerns, we understand completely and have your back when it comes to supporting all the changes that have occurred. It is not too late for him to learn the truth about stroke, if he will listen.

Your friend, Janet

 
Old 05-08-2011, 10:44 AM   #29
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Re: I had a stroke and need to talk about it

Linda,
I'm sure in his heart of hearts, your boyfriend believes that you've had a stroke. But that truth can be so scary, and the future is so unknown that it's easier to believe that you're faking. (Although why anyone would WANT to fake a stroke is beyond me.)

I too have had panic attacks after my strokes. Maybe not as serious as the one you described, but they were "for real" panic attacks that caused shaking and shortness of breath. During the cold snap we had last winter, I was out walking the dog when suddenly my head felt really big on the left side...just in the area where the stroke occured. I was so sure I was having stroke that I was unable to continue the walk and had to lean against a tree. Fortunately my husband was with me but I can tell you he thought I was a bit crazy. There was nothing physically wrong with me. Nothing.

I really hope that your boyfriend and your children and you can get to a more caring and sheltered place emotionally that will make it easier for all of you. On tv and in the movies, families rally around the person who has an illness or stroke, but in real life, sometimes it doesn't happen quite that way. Hopefully, you will be able to calm down a little and your family will be able to calm down a little and you'll meet in the middle.

Until then...and this is just my suggestion to you...why not try to get back to doing some of your pre-stroke activities? Even if you can't do them as well or you have to do them slowly...the idea is to do them and get the S word out of your head for chunks of time.

That worked for me and I hope it works for you. I needed to stop thinking so much about how I was feeling and start doing things again. The simplest things at first...shopping, walking the dog, hula-hooping (I was really bad at it but it's so good for your core!) Even watching cheesy movies. I hope you find some activities that take your mind off that awful S word, even if it's just for a few minutes at a time.

Happy Mother's Day!

Caasey

 
Old 05-08-2011, 12:25 PM   #30
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Re: I had a stroke and need to talk about it

Linda,

Resentment by the "significant other" is considered normal. Nobody but someone who has survived a stroke knows how difficult/impossible it is to be your old self. It's a constant struggle. The other person in your life has had a major life-change, too. It may be one they don't like. Where, once two people made all the decisions, and took action, now there is only one. It may be the same on the financial end of things, too. Caring for someone who incapable to some degree is tiring, and frustrating. It can also be rewarding.

The best thing you can do, is try your hardest, and do the most that you are currently capable. Things may/may not change. There is no concrete solution that I know of. Sorry!

I do know that you will recover the most, and the fastest, with people who show care, and understanding.

If your caregiver/spouse (whatever) becomes uncivil towards you, look for other living arrangements. It may come from a sibling, friend, or parent. The other person needs to know that you need to put your own recovery first, and if you leave, they won't be around to see all your progress.

Just do your best. Nobody can ask for more than that.

Lee

 
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