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Stroke Survivor - female
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About Tarina

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  • Birthday 01/27/1975

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  1. Hello everyone! Recovering from the Holiday, stroke makes holiday fatigue much worse! Luckily the kids are playing and occupied and I am cozy in my leg warmers and huge sweater, drinking tea and watching the rain fall. Everyone in my warring family decided that my house equaled Switzerland so.... they all came here. Mind you I have a tiny apartment while everyone else lives in an ACTUAL HOUSE! But whatever, it turned out nicely and they went home in a few hours... but I still have a mess to clean up. I'll wait till the kids go to their dad and I can do it without kid noise and needs. So yeah, for now, and for today, its warm soft clothes and tea....ALL DAY!
  2. Yes and to you too. Stoke fatigue makes holidays more taxing that is for sure! This is my first Christmas post stroke. I will do some things differently next year...that is for sure.
  3. Tarina

    Greetings Peter, I don't have any answers. My stroke was in October of 2018, so I'm new to all this. But just know this is a great site with a lot of support as we all make this journey. I have found so much information from reading past posts by the members here. Things that I thoughts were "just me" since the stroke, I find out other members have similar symptoms, most of which are "invisible" or sensory in nature. I encourage you to read the past posts...very informative. At least they have been for me.
  4. Tarina

    I echo what Janelle says. I don't know how old your kids are, but mine are 8 (boy) and 10 (girl). They are adjusting to the stroke for me and right now feel sad for me- (my daughter says she wishes it happened to grandma) (my son has said, HA, now you can't catch me for time out... or.... at least I don't walk with a walker.... or.... you can't remember anything anymore, because your just a grandma). But yes, I'm right there with you, how my stroke is affecting THEM and the differences in me as a parent IS THE NUMBER ONE HARDEST THING for me to deal with. You are not alone. We love our kids. And kids are kids and say what they feel with no filter at all when they are mad. He probably did feel that right when he said it, but when he is even a little bit logical he will regret it. Janelle is right about a little "come to Jesus" meeting about the reality of living with a stroke. Depending on the age this can be a full on lecture (or being required to watch certain You Tube videos about neuro-fatigue- and then a talk).... or even a fun activity about electrical currents and interrupting circuits- while he has to work to get the light bulb to come on by rewiring around the circuit.. how much more time, and hard work, it takes when something isn't working as it was designed to do (you can get a lemon light bulb kit at any craft store like Hobby Lobby). Or make him wear 10 pound wrist and ankle weights for an entire weekend and see where he ends up after 12 hours- bet you its the couch! But even if you make it fun...there should be a stern warning about how words are painful and once they come out you can't take them back,no matter how much you want to. Its always best when your mad to say your piece in writing so you get it out, can review it before you give it to the person your upset with, that sort of thing. I suspect that your son is feeling some of the tension between you and your wife as well, and echoing feelings or thoughts that are in the "air" in your home right now. So maybe this is a whole family conversation, a "full and frank" discussion, not just between the two grown ups but also the kids involved. And as far as the post goes, this is exactly the type of thing I am talking about- and what I want you to talk about too! Being a mom (especially a mom without a partner) is sooooooo hard post stroke, it is the number one thing that makes me feel disabled. When I don't live up to my own standards of parenthood, its just me...its all on me...I don't have someone to pick up where I can't...so my kids are the ones who suffer along with me. It makes me feel like less than dirt and I'm only a few months into this, unlike you. This IS THE ISSUE that made me get case management at the local mental health center so that someone comes and checks on me every other week to evaluate my mental health. I know I am going to be right where you are in a year and a half! So my heart goes out to you. The people that we love the most can hurt us the most, even when they are just children. While they "should know better" they often don't have the self control developed yet to be sensitive to other people when they are upset (heck, lots of grownups haven't mastered that one either). This got long, because I am emotional right along with you. While we feel the reality of the disability in the range of deficits the stroke granted us, our loved ones only see a small portion of them, they aren't feeling what you are feeling, they don't "get it". They only see the outside behavior...what is and is not possible to accomplish at any given moment. In my opinion two things need to happen. We need to educate our families about how we are feeling without sounding like whiners (I'm not really sure how to do that yet) and they need to develop the sympathy to give us grace when things aren't going well, and celebrate with us when things are (not sure exactly how to to that either)...but you can be creative and come up with some visual representation of your energy levels (maybe an old fashioned sand timer?- introduce "spoon theory" and then set up a jar on the coffee table that you add and remove spoons from so that everyone knows where your at?) so that without "complaining" people can choose to be kind and gracious.
  5. Tarina

    I'm beginning to realize that this stroke thing isn't like other "hard" things where you throw 100% at it and you push through the barrier faster. Such as a hard class, where you study your bleep off and you pass and can congratulate yourself in 6 months. Or a relationship hurtle, where you go to therapy, work really hard at whatever the problem was, grow (painfully) and overcome it and realize a few months later how far you have come. I used to lift heavy (weights- that is). I loved to go to the gym and push myself so hard, until my body just wouldn't do it anymore. I was in the free weight room with the guys, sweatn' and grunting through the lifts like the rest of them...LOL. Point is these things are "push as hard as you can-for as long as you can" and gains happen. Stroke seems to be a different kind of "try". Its a paced and measured "push through and try". More like yoga, where the stretch gets breathed through and released, and gains are slow and steady, more flexible with time and practice, more balanced emotions as you learn to breathe through difficulty. With yoga (which is what I was doing when I had my stroke) its a practice of the mind 80% and a practice of the body 20%. This seems to be what I need to understand more about this recovery process. I'm not going to beat any of this with the weight lifting approach- I will only beat myself down. I need to use the yoga approach, and stretch myself just past comfort and relax into it, to see gains over time, recognizing that those will be almost imperceptible week by week, and accepting that as part of the recovery. The emotional part of me is screaming right now as I write that. I'm having an internal temper tantrum that is not at all calm and serene and "yoga-like". I don't want to wait! I want to feel whole again! Breathe.
  6. Scott, Tell me about "being the duck"......please?
  7. Tarina

    Nika, Sorry I didn't write directly after the nuero appointment like I said I would. I was just too tired. Anyway, I don't have much to report. When I asked about vision therapy or a nuero-ophthalmologist, my neurologist said no...not yet. His response makes sense but it wasn't what I wanted to hear. He said my stroke is too new, (It was the Oct 28) and that if we correct my vision problems now, my brain will not make new pathways to deal with the issues. It would be like stopping healing. He told me to wait about a year and ask again. This is discouraging, because the vision/balance issues are some of the most troublesome and limiting of the stroke deficits....of course, I WANT to heal correctly, but I also want a life back, one in which I am not stuck inside all the time because I can't balance, even in the yard, or go for a walk, or drive my car, and all the freedom that driving brings. I don't know if emotionally I can wait a year!
  8. Tarina

    Today....I definitely feel DISABLED. Why are some days so much harder than others? I wore myself out the last week and pushed myself on Saturday, and have been basically dysfunctional for the last two days. I took my final exam for one of my classes last week. BTW, I got an 80%!!!!!! I was so happy, but this is one of those "fluff" classes that they make you take where your opinion and personal growth matter. I saw the neurologist for the first time- which went ok...I guess. Despite all the phone calls, no one seems to have sent my hospital records to the new neuro, so they weren't able to tell me much. And I went and applied for some assistance from the state- which I found out today, I was rejected for, but still don't know why. Then Saturday, it was finally sunny and somewhat warm and i just wanted to take my kids to the park. I would never think of driving in my condition, especially not with my kids in the car, and the park is close....I used to walk there all the time. In fact, pre-stroke, I rarely used my car in town, just walked everywhere. Well, I made it there....cried while my children played..because I knew I was so worn out. Rested and tried to make it home, and ended up sobbing and not making it. I had my daughter run and get a neighbor who came and got me in a car. I miss being a mom that can cook for her kids, and take them to the park, and be part of their lives in a meaningful way. My sons birthday present is still sitting there, because he needs someone who can help him put a robot together, and I can't read it or figure it out, and my left hand is not functional enough to manipulate the pieces. They have been at school all day, and I can't seem to manage folding a load of clothes or doing dishes, I'm just to damn tired! I'm capable of sitting in the sun that is coming through the glass door, closing my eyes and soaking in the warmth and occasionally typing on the computer....and that's it. So today, yes, today I am disabled......
  9. Tarina

    I'm so sorry all of this is coming at you at once. I have had cysts rupture on my ovaries on and off through my twenties and thirties, the pain is excruciating and folds you up like a sandwich! I can't imagine trying to do therapy while in that kind of pain. Praying all goes well, that they remove the growth and it is benign and you can get back to recovery from the other stroke issues. I do remember the feeling of "I just want this thing out of me!" Feeling like your carrying something toxic inside that has the potential for further serious harm is hard emotionally and anxiety producing, even if it turns out just fine in the end. I wish doctors understood that and scheduled surgery sooner rather than later.
  10. I'm so sorry if I said something that upset you. That never would have been my intention. I fully understand how hard it is to feel dismissed when something is really bothering you, and if you felt I did that, please accept my sincere apologies.
  11. Tarina

    Yep. I second that. I have short periods with energy and the rest of the time feel very fatigued. Its my experience that I can't nap. But resting does help. Its the only time I can listen to music with words, because I block out all sight and light with a heavy rice pillow to help calm my headache and vertigo too. You can do this! I think its great your back to work, but just like with dieting and stopping smoking, taking care of getting enough rest to heal is important too. You have the right idea. 🙂
  12. I have found since the stroke, I am unable to make new complete memories, in fact, its like if something isn't right here, right now in front of me, its not in my mind at all. Its very ZEN in a weird way, that mindfulness that people are always talking about, living in the moment and all that. I used to meditate to try to reach a place like this...and GUESS WHAT?!? IT SUCKS!!! Even in meditation I had connection to the past, the last 7 weeks are just gone! I remember some of it, but none of it clearly. My little boy had a birthday last week, will I forget it completely? Will I only get glimpses of his 8 year old birthday for the rest of my life? I'm missing things! I remember almost none of what I was supposed to have learned over the last 7 weeks of my classes. My final is on Friday. I've just told myself to do the best that I can, but I remember almost none of my class. Going from the deans list every semester to failing all the tests is difficult. I still get 100% on all the papers that I do in real time. I work hard at it, but after the tests, that are weighted more heavily, I bet I barely pass the class. Its frustrating. Anyway, what bothers me is #1 missing my kids grow up....all the stupid silly things that kids do. #2 I've always been an intellectually curious person and researching all kinds of stuff all the time. I had a journal where I would write down a list of things that I wanted to know, and then research them, learning all the time about all kinds of weird stuff. I tried to read (well, have the stupid e-reader read to me) the Gnostic book of Thomas last night. All I remember from the forty-five minutes of "reading" are things that directly correlated to bible verses or parables that I already knew. By the way., I didn't even remember that I had "read" it until I was doing dishes and "looking" for something to think about, and remembered what I had done the night before, and then tried to recall what I "read". I DO remember enjoying "reading" it. So maybe I just hold on to the enjoyment of the experience of learning, without the expectation that I will retain any of it? Did I just suddenly hit the wall of individual intellectual growth? Will this be all there is? 43 years of learning and then...that's it? The physical limitations of the stroke have limited me socially, now i'm really realizing how much it has also affected my memory and that void just keeps growing the further I get from the stoke. Sure I have work-a-rounds, and write-it-downs and pictures that I take on my phone and all that..but if feels artificial, the words don't contain the full rich memories of before. If I can't learn, and I can't go anywhere, what else am I going to do with myself? Knit a bunch of socks I guess. I remember how to do that if my hand will work- I'll just have to do it "american" style instead of "European". Watch TV (bleck!)? Spend time with kids when they are with me, but honestly, they overstimulate me, and I find myself separating myself some of the time to get through the noise and movement- which makes me feel like an awful mom! Ok. I'm done ranting for the night. I hope this gets better.
  13. Tarina

    My appointment with the neurologist is tomorrow. Thanks to the people on this board, I am going to ask to see a nuero- ophthalmologist. I found out there is one connected to the university hospital (where my new neuro is), so hopefully they will let me do that. I guess my abnormal eye movements and vision issue isn't unusual with a brain stem stroke, but it sure does make me dizzy, off balance, and feel a little nauseous all the time. Couple that with fatigue and the weird sensation and hyper sensitivity throughout my body- mostly on the left- makes me feel like I have the flu ALL THE TIME! I hope they can help, even part of it so I can feel more normal and get some real exercise. I'll let you know what the nuero says about the eyes tomorrow night, if I'm not too tired from the travel.
  14. Tarina

    I understand your frustration and I'm sorry that this is a "damper" on your otherwise lovely vacation. (if my humor is too soon, I apologize.) I'm 43, so I get what your saying. I have decreased sensation, I can tell when I need to go, I can tell when I start to go, but I can't tell when its finished...so...sit there. I am thinking of using an adult pull up for my cycle, for the same reason, changing clothes just takes too long these days and I can't do it 3 times per day when "accidents" happen for a week or more each month. It is frustrating, but if it is situational, like traveling, try to think of it as a temporary inconvenience (I bet you aren't feeling the need as you are sitting, and your bladder is just getting over full...maybe stop on a schedule?) and that you'll return to your home and things will calm down. Do you know if you would feel it if you had a bladder infection? Sometimes that causes the area to be irritated and things to let loose when they shouldn't. Travelling can cause those. Just a thought. Don't let it get you down, darlin'.......none of this is fun, but just do what you need to to be comfortable and enjoy your ride home.
  15. Tarina

    Thank you for the advice. I think what I am worried about is my ability to organize all the information. Like I said before, I KNOW what to do....I used to be a paralegal after all. But being able to actually do it is something else. I tired to make two copies of a two page document and organize them into piles to file....it took...i don't remember how long...with so many mistakes, running blank sheets of paper...trying to stack things and making sure I had one of each sheet (mind you ..2 freaking pages!) in each stack (only 3 stacks!), it was a very defeating moment. I do have a friend, who used to work with me who might be able to help. And I know she would love to if she can find the time...