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CagedBird

had a stroke? dont end up like me

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one of my co-workers has been out of town taking care of her sister post heart surgery and the other day we found out her sister had a stroke. Another lady I work with came in my office and told this other lady I work with. She said while our co worker was visiting her sister, she watched her having the stroke and they immediately got her to the hospital. A few days later we got an update that they were transferring her to a mini-stroke hospital so she could get the treatment she needs. She had a left side stroke. At first I felt for her and wanted to get in touch with my coworker so I could remind her that I am a stroke survivor too and I can relate with her sister right now. but then I started to get upset. The 2 ladies at work talk about it right in front of me like its nothing. I guess it shouldnt bother me but it does. While the 2 ladies I work with discuss the updates on my co worker's sister, it makes me feel horrible. They say things like oh yeah hopefully they gave her the clot buster thing so she wont come out bad, yeh her sister has been exercising her hand for her so it wont get worse, she doesn't want it to get worse, you have to catch a stroke in time because it moves quick, you got to keep moving that side, etc. The other day I had to just get up and go to the bathroom to get away from them. When they talk about her having the stroke all I can think is A) why couldnt I have gotten that treatment when I had the stroke? B) why do they make it sound like if she doesnt get better right away her life will be over? Do I make being a strokee for the rest of your life look that unappealing to them? C) Why am I envious of this woman I don't even know? It makes me feel even worse that instead of trying to reach out and help her, I am jealous of her because she got the treatment I never got. My docs were too busy operating on my brain to deal with my stroke. My parents never exercised my left side at all for me. I didnt even start getting therapy until a month after my stroke. It's not fair and I feel so bad for feeling this way. Am I wrong for feeling this way? Hsve you ever felt a bit of envy when meeting a stroke survivor who came out better than you? Should I say something to the ladies I work with about how they address the issue? I mean sometimes I literally just want to blurt out "yeah cause we wouldnt want her to end up like me right! That would be such a travesty right."

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Ok, let me start by saying I agree - I absolutely hate it when people who have no experience with stroke talk all about it with such knowledge and spew information that isn't accurate and give their opinions with such attitude. I get very frustrated and find myself getting angry and usually just walk away.

HOWEVER, (by no means in defense of them) I'm wondering if, even with the AFO and hand issues, maybe they see you in a good light. You have accomplished so much and made great strides in your life -maybe, honey, they think of you as doing great, and not the way you are seeing yourself right now. I know from recent posts that you feel very discouraged and of course I understand that - but you are truly an inspiration to all survivors of what can be accomplished. Perhaps they view you that way, and so feel free to discuss this other woman with the hope that she will be able to recover as well. When you are discouraged and depressed it's so hard to remember and know that others do not see your situation the same way you do. I'm not minimizing your feelings, just reminding you how we all see you - and that's as an accomplished, determined, lovely young woman who has overcome so much and has so much to offer. Please don't lose sight of that!

Sheila :You-Rock:

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katryn,

If it bothers you, why don't you speak to one or both of them privately and tell her/ them about it?

Honestly, some people are so insensitive that they genuinely dont have the empathy to figure the impact of their words/ actions

Also, we survivors are sometimessometimes prone to the spotlight effect where we are overly preoccupied by our situation as perceived by others, when the fact is most of the timethey are not thinking about us.

Don't lose sight of how far you've come and get discouraged.

love,

anna

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cagy bird you must remember that i do feel very envious of the stroke surviver that seems to be doing alot better that i was in a shorter time that is probably more normal than you may think but there is alot of varivles that may exist that didnn"t exist when you had your stroke like for instance maybe hshe had a milder stroke or maybe the stroke hit her brain in a differentplace you know stroke is like a snowflake no two strokes is alike so i try not to comparemuch to many varibles to consider in having a stroke i am very happy to be here and to get as much recovery as i possibly can just continue to do the best that you can and try to leave the gee she is doing so munch better than i you are better than that and you can just try harder to get even better if you spend to munch time comparing how the stroke survivors is doing base on how you are doing , it will make you sad lots of stress if you are going to compare make sure that you know all the varibles other wise it is like comparing apples to cherry and knowing you you are to good to do that

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katrina, you need to remember that when you had your stroke so young, stroke treatment was not where it is now, like the drug they can give (tpa) which is only for clot strokes and not bleeding(hemorrhagic) strokes. if your drs were doing surgery on you, you probably were having a bleeding stroke. also therapy has advanced alot too since then. as the others have said, you have recovered more than alot of other survivors and have come so far. you have alot of knowledge and experience about stroke. maybe when the co-workers start talking about it in front of you, maybe you can add to their conversation, which would remind them that you too had a stroke and let them know how far you have come. your young age at the time of your stroke, probably helped you in your recovery, you were still growing and your brain was still developing. i feel as humans its normal to feel envious of other survivors who did not have the deficits we had from our strokes. each stroke is different, just like people are different. some of us never regain full function of our arm/leg after a stroke but others do and i feel so happy for them, not angry because i can't get mine back yet or maybe never will but i still have hope. rejoice in your recovery and let others see that. a stroke is not a death sentence anymore like they used to be years ago. i hope the coworkers sister makes a good recovery. pray for her and hopefully it will make you feel better and resolve your anger issues about your situation at work with the co-workers.

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Katrina,

People are ignorant. They may not even realize that you are a survivor because you are doing to well. As Kim said the TPA may not have beem available or it may not have been for your type of stroke. I was upset because they did not use the merci retrieval system on Wm when he had his clot. But, that was not being utilized at the hospital that we ended up in. He did get TPA...but how knows how much that actually helped.

 

The therapy for the arm.....They all say the sooner the better. But, even in the hospital the theraptist did not help Wm's hand/arm because of the swelling..

 

But, now I work on it. You are doing fabulously well. Just keep it up. You know that progress is an ongoing thing for suriviors. Just keep working at your recovery. It is just that it is soooooo slooow. I hate to wait and be patient. But that is how is works.

 

Ruth

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Hi Katrina ~

 

So sorry you have had to go through these feeling at work. I have to agree with Sheila's reply to you the last 2

sentences.I look at your speech on the video from graduation and applaud you even now. You have come so far

and have achieved so much in your life! :Clap-Hands: even after having a stroke...You have been an

inspiration to us all!!! I can understand your sensitive feelings. But if you can go back to your

original thoughts of contacting your co-worker and sharing with her your loving thoughts. (just a

thought) I get very sensitive at times about what others say, but I know they don't mean to hurt me.

I'll always remember what my physical therapist said the morning I was leaving in-patient re-hab.

She said "Nancy always remember your family will always see you as normal even if you walk w/ a cane

& brace" It didn't hit me but as the years have gone by the statement is very true. When people say

you look so good, when inside I'm hurting & some days not feeling on top of my game due to inability

to exercise & do the things I use to be able to do. But there is a reason I survived! "We do not choose

to be born. We do not choose our parents, or our country of our birth. We do not, most of us, choose to

die; nor do we choose the time and conditions of our death. But within this realm of choicelessness,

we do choose how we live."By JOseph Epstein

The treatment you never got maybe was due to being so young and they were not as adavanced as now.

When my AVM hemoraged they had a surgery called "embolization" out. When they had diagnosed it 15 yrs.

prior the surgery did not exist. My AVM was too deep to take care of it at the time. Katina you are

such a light & encouragement to all! Take heart my friend, we are on a journey that's temporary

preparing us for eternity(if i may say that to you, that's what I believe anyway) It gives me hope,

faith & love. You are amazing! Thanks for your honesty, we all have our struggles, and without my

friends that can relate like you, let's just say it lightens my burdens. Take care & never lose sight

of the reason for the journey we are all on. i know you'll do or say the right thing....

 

Have a good weekend!

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one of my co-workers has been out of town taking care of her sister post heart surgery and the other day we found out her sister had a stroke. Another lady I work with came in my office and told this other lady I work with. She said while our co worker was visiting her sister, she watched her having the stroke and they immediately got her to the hospital. A few days later we got an update that they were transferring her to a mini-stroke hospital so she could get the treatment she needs. She had a left side stroke. At first I felt for her and wanted to get in touch with my coworker so I could remind her that I am a stroke survivor too and I can relate with her sister right now. but then I started to get upset. The 2 ladies at work talk about it right in front of me like its nothing. I guess it shouldnt bother me but it does. While the 2 ladies I work with discuss the updates on my co worker's sister, it makes me feel horrible. They say things like oh yeah hopefully they gave her the clot buster thing so she wont come out bad, yeh her sister has been exercising her hand for her so it wont get worse, she doesn't want it to get worse, you have to catch a stroke in time because it moves quick, you got to keep moving that side, etc. The other day I had to just get up and go to the bathroom to get away from them. When they talk about her having the stroke all I can think is A) why couldnt I have gotten that treatment when I had the stroke? B) why do they make it sound like if she doesnt get better right away her life will be over? Do I make being a strokee for the rest of your life look that unappealing to them? C) Why am I envious of this woman I don't even know? It makes me feel even worse that instead of trying to reach out and help her, I am jealous of her because she got the treatment I never got. My docs were too busy operating on my brain to deal with my stroke. My parents never exercised my left side at all for me. I didnt even start getting therapy until a month after my stroke. It's not fair and I feel so bad for feeling this way. Am I wrong for feeling this way? Hsve you ever felt a bit of envy when meeting a stroke survivor who came out better than you? Should I say something to the ladies I work with about how they address the issue? I mean sometimes I literally just want to blurt out "yeah cause we wouldnt want her to end up like me right! That would be such a travesty right."

 

Katrina, I feel bad for you because it looks like you have not reached acceptance yet. You will never be happy if you don`t. What is in the past is gone, tomorrow doesn`t belong to us. All you have is the present. You should educate the ladies at work about stroke. Tell them how you feel when they talk about the stroke in front of you. Coming back to acceptance now... If you dont like where you are, do something about it. Try to get more therapy as recovery never ends. You can still get better. If you don`t want to do that then accept where you are and where you will always be. Sorry if this sounds a bit harsh but you have come such a long way in your recovery and you have accomplished so much, you should be happy about yourself. You sound very depressed. Do something about that too. See a therapist, get antidepressants, change the way you think, look at the positives in your life. All the best to you Katrina. Take care Sweetie,

 

mc

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Katrina, You are a huge inspiration to us here. "One of our own" has beaten the beast! I understand your not wanting to seem different, or more in need than anyone else. I've done it myself. But, truth is, you are different...your little pinky toenail knows more about life's journey now than thet will know their whole lives. So hold your head high, smile that radiant smile of yours, and walk away. Then call your co0worker and sister and tell them about SN.(((HUGS)))Becky

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Katrina,

 

First, I agree with Shelia then let me say stroke support is great however some people have no idea what that is all about. They speak without knowing what they say, they just don't know. At times doctor don't know, each case is not the same so their predictions don't come true, not even close! Anybody can speak or talk without knowing what they say. Guys can talk about how cars are made and never been inside an assembly plant in their life, not even read a book but if you didn't know better you would think they know a lot about how cars are made!

 

Your co-works probably know very little about strokes or treatments. Do your job pay them little or no attention or you will upset yourself for nothing! JMO! :Clap-Hands: :happydance:

Fred!

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I think you are being hard on yourself. You are doing great! and your coworkers are just trying to stay positive and they obviously want the best outcome. Its not to say that "her life will be over" unless she receives treatment, but they wish her the best. I have never envied another stroke survivor but I do see women my age and I often become jealous. But then I realize that im only putting myself down when I should be focused on the positives. I look at how far I have came and that always makes me feel better. When im feeling low and I need a pick me up I will re read my story from the hospital archives and feel amazed and so thankful that I didnt a) die or b)end up a vegetable.

 

I know its cliche, but try to stay positive and remember you are an amazing young women and such an inspiration. :)

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Katrina, your post brought tears to my eyes; please know I'm sending you a cyber hug. If these women start talking in front of you again; perhaps you need to remind them you've also had a stroke and educate them. You could also share this site with your co-worker's sister.

 

You asked: Why couldn't I have gotten that treatment when I had the stroke? - You said it yourself; your docs were too busy operating on your brain.

 

You asked: Why do they make it sound like if she doesnt get better right away her life will be over? - I attribute this to ignorance; again, perhaps you could educate them.

 

You asked: Do I make being a strokee for the rest of your life look that unappealing to them? - This comment hurts me the most as I find you so inspiring.

 

You asked: Why am I envious of this woman I don't even know? It makes me feel even worse that instead of trying to reach out and help her, I am jealous of her because she got the treatment I never got. - In my opinion, feelings of envy are normal and short-lived.

 

You said: I didnt even start getting therapy until a month after my stroke. It's not fair and I feel so bad for feeling this way. Am I wrong for feeling this way? - No Katrina, in my opinion; you're not.

 

You asked: Have you ever felt a bit of envy when meeting a stroke survivor who came out better than you? - Whenever I meet a child who has accomplished so much, I'm happy for them and look at them as an inspiration; they give me hope.

 

You asked: Should I say something to the ladies I work with about how they address the issue? I mean sometimes I literally just want to blurt out "yeah cause we wouldnt want her to end up like me right! That would be such a travesty right. - If possible, I believe you should address the issue when they're not talking about it; just remind them you are a survivor and would love to offer support.

 

Katrina, I ask that you please reflect on where you've been and where you are now; wishing you continued success on your journey.

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Katrina:

 

I used to feel the same wat till I reached my peaceful state of acceptance. for first 2 years I was envious of every other human being who were doing better than me in "my mind" till I realize & accepted my life as today as a best present for me & my family. I realized as a human being every one is carrying their crosses in life & I am fortunate to have so much help to carry my burdens in life. I also wondered & cried about not getting tpa, though today I m greatful for doctors decisions since I am still here & enjoying raising our son to best of my ability.

 

Asha

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Katrina I know what U feel and as a youngster U sit uncomfortably & listen 2 it getting mad - by 60 U mightpolitely sayeexcuse me but in this case U forgot this is an area in which I have experience -- a nd the facts are more like " such & such.

 

I try hard not to be selfish and I never wish my situation on anyone else but it is hard to be upbeat after 9 yrs still can't go toilet alone if notcorrect assist bar total paralysis in left limbs How csn I exercise what I can't move? the 9 yrs of true paralysis not just weakness - no movement has caused the muscles on my left leg to atropy( die out & not do their supporting job any more thst I am still unable to walk alone beause of my knee & cannot get myself up to pee at night cuz my ankle is so weak it turns over without AFO for ankle support mentallyI have either improved or lrarned to utilize necesary coping skills

 

so Katrina to be honest -- even though I love the successes I can't help but think why did I get hit so hard and still after 9 yrs struggle like many do after a month or so

 

 

as U know it is tough to stay positive with so little so slow.

 

Susan

 

 

We as humans a

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Katrina I know what U feel and as a youngster U sit uncomfortably & listen 2 it getting mad - by 60 U mipolitely say eexcuse me but in case U forgot this is an area in which I have experience -- a nd the facts are more like " such & such.

 

I try hard not to be se;fish and I never wish my situation on anyone else but it is hard to be ypbeat after 9 yrs still can't go toilet alone if not assist bar total paralysis in left limbs How csn I exercise what I cant move? the 9 yrs of true paralysis not just weakness - no movement has caused the muscles on mt left leg to atropy( die out & not do their supporting job any more thst I am still unable to walk alone beause of my knee & cannot get myself up to pee at night cuz my ankleis so weak it turns over without AFO for ankle support mentallyI have either improved or lrarned to utilize necesary coping skills

 

so Katrina to be honest -- even though I love the success I can't help but think why did I get hit so hard and still after 9 yrs struggle like many do after a month or so

 

 

as U know it is tough to stay positive with so little so slow.

 

 

We as humans often believe the grass is greener elsewhere

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Katrina: the one thing we all agree on here is that every stroke is different. We share experiences and what has worked for us, hoping that information, if individualized, will help someone else. I remember Lenny's description as to how to get pants on and how many of us caregivers said "Hey, that may work for us!"

 

As for your co-workers, I agree with all the advice you got from here already. People are in their own worlds. They have no clue who is listening and who they are offending. Most talk just to impress the one they are talking to. And people just love gossip. The worst it is for someone, is somehow just so exciting! Somehow I think it is a venting of the "there, but for the grace of God, go I." Do you know how many people have walked into this house-and we are talking friends and loved ones, not just co-worker-who have said you need new furniture? I was just appalled in the early days and often cried that that was my life now. But my stock answer lately is "OK, you stay and take care of Bruce and I will go out furniture shopping. Oh, and it may take me some time, so please make sure he is toiletted and fed!"

 

Ignore it honey. It is not about you. They have no clue what you are feeling and obviously do not care. Let it go and focus on the wonderful achievements you have made. Debbie

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Thanks everyone for the advice. It just makes my ears bleed when my co-workers ask about her sister having the STROKE. I know they are only showing concern but hearing that word is like hearing nails scratching a chalkboard. One day one of my co-workers finally remembered I had a stroke so she told my co-worker (with the sister) to ask me about a question she had about therapy. I had been reading everyone's replies to my post about educating her so I took this as an opportunity. I didn't want to be mean so I told her everything I know about stroke. I told her the age I had my stroke and circumstances that kept me out of therapy. I told her about the emotional affects it has (including PBA cause she said her sister cries all the time.) I told her how people see whats on the outside for us stroke survivors but they never realize we have been brain damaged which affects our emotions too. (Maybe she will take that as a hint to be more sensitive around me.) She said her sister has progressed a lot only 2 weeks after the stroke but her hand hasn't came back yet. I told her to make sure she keeps it in the brace so it will stretch out (and won't end up like mine.) She seemed enlightened and appreciative by my knowledge about stroke. She went back to visit her sister so I have been feeling okay but Im sure when she comes back I will have to sit through the stroke talk again but like I said maybe everyone will be more sensitive to my condition and talk about it outside of my office. I hope so.

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Thanks everyone for the advice. It just makes my ears bleed when my co-workers ask about her sister having the STROKE. I know they are only showing concern but hearing that word is like hearing nails scratching a chalkboard. One day one of my co-workers finally remembered I had a stroke so she told my co-worker (with the sister) to ask me about a question she had about therapy. I had been reading everyone's replies to my post about educating her so I took this as an opportunity. I didn't want to be mean so I told her everything I know about stroke. I told her the age I had my stroke and circumstances that kept me out of therapy. I told her about the emotional affects it has (including PBA cause she said her sister cries all the time.) I told her how people see whats on the outside for us stroke survivors but they never realize we have been brain damaged which affects our emotions too. (Maybe she will take that as a hint to be more sensitive around me.) She said her sister has progressed a lot only 2 weeks after the stroke but her hand hasn't came back yet. I told her to make sure she keeps it in the brace so it will stretch out (and won't end up like mine.) She seemed enlightened and appreciative by my knowledge about stroke. She went back to visit her sister so I have been feeling okay but Im sure when she comes back I will have to sit through the stroke talk again but like I said maybe everyone will be more sensitive to my condition and talk about it outside of my office. I hope so.

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I would hate people talking around me of somebody else's stroke "with so much knowledge" without asking me the STROKE SURVIVOR hello-o! about it! thankfully that has been taken care of and I think being the authority on stroke, giving all your inside info, will definitely help your co-worker's sister! good for you! :)

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There was this commercial that played for about a year after my brain lesion/strokes that infuriated me. It talked about "time lost is brain death." I did everything right. I called 911 and had an ambulance take me to the hospital. Nothing showed up on the CT scan. It was a week later when the lesion showed up on the MRI scans. It was an inflammation. The two tiny strokes that could be just scarring didn't show up until almost a year later after the lesion shrank. Strokes don't typically hide themselves on the MRI scans. I am fortunate that I recovered all of my bodily functions. I still have aftereffects that are subtle and not visible. I did have brain damage from the lesion, but what could have I done differently? Nothing. I did all the right things.

 

I understand how you feel. We all get different cards in our hands. It isn't always fair. It's how we deal with our situations that would make a difference. Don't believe in the adage that life is over when you have a stroke because that is totally false. You can have a life, even if you're permanently locked-in.

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Katrina,

Sometimes you need to take it from where it comes. Very early on when I was in the hospital and mentioned to my husband that I had had a stroke, he insisted that I had not. I actually argued with him and solicited the clarification from a nurse that I did in fact have a stroke.

 

Of course he knew I had one, but his refusal to call it that was in part due to his perception of what a stroke is. He kept insisting I was only 41 so it was ridiculous that I'd had a stroke. He'd had an elderly uncle who had a stroke who was left unable to speak and beyond recovery, especially given the many years ago it had happened. To him, I was sitting there alert, talking, arguing with him, able to move, and given a good prognosis. I looked nothing like the stroke that ended his uncle's ability to live life, so it couldn't possibly be the same.

 

This is why it is so very important to raise stroke awareness. Everyone needs to lose that image of the elderly person alone. People need to know it happens to kids like you and people in the prime of their lives like me. The image needs to be replaced with who we really are; people who suffered a pretty tough blow and have some challenges as a result, but are still capable of functioning and being part of society.

 

We often just think of stroke awareness as trying to make others aware of what to do in the event of one, while that is extremely important in helping to prevent others from suffering this life altering event. Raising awareness of us to change that image to one which better reflects who we are is equally important.

 

Don't let it bother you, chances are the image of "stroke" doesn't even come to their head when they think of you.

 

(((((((hugs)))))))

 

Maria

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