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Stroke Survivor - female
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  1. 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.
  2. 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.
  3. 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...
  4. Tarina

    Thank you for being honest and opening up about your struggles. I was married for 25 years, so I know how hard it is to work through issues, even without "stroke brain". I can't imagine having to do it now. Personally, I love being single now. It took me a while to get here, though. My ex became (life threateningly) abusive after the birth of our kids, due to a serious mental illness which started as a head injury on 9/11- when he responded there as a firefighter. And I stayed with him all those years as his illness progressed until.... it came to a choice between him or me and we had a 5 year old and a 3 year old at the time. So I chose THEM, to make sure that they had a functioning parent. At the time I couldn't even choose me, I was too far beaten down! Post stroke...there is no way I function well enough to be part of a healthy relationship *right now*. I just want to COMMEND BOTH OF YOU, for trying to work through the additional issues that stroke brings, with compassion for each other (which I can see from your posts). Would you be comfortable with some couples therapy? A good therapist is really hard to find, but they are out there.....I know...more therapy right, not something any of us want. But....if it saves your marriage, even if it only PROVES your trying (and that goes a long way to a spouse) it might be worth it.
  5. Tarina

    I'd be jumping up and down for you right now....if that were a possibility!!!!!!!! I can however get down on my knees with you and thank the Creator with you! SO AWESOME!!!!! SO HAPPY for you, I know this has been a major struggle!!!!!!
  6. I like all of your suggestions! My hand isn't completely curled up yet, just starting to stiffen and be even less cooperative then right after the stroke. I don't want it to get to the point that it bites into my hand, and if I don't do something about that now...it likely will. I wish it weren't icy, snowy and below freezing here with a wind chill...id be out walking if I could. I bought a little home exercise elliptical thingy-ma-jig that I can hold onto my walker and I'm going to place it in a corner to help stabilize myself (like Ill fall into the wall behind me and on both sides before I fall all the way down). We will see how it works with dizziness and balance issues...hmmmmm
  7. Tarina

    I'm so sorry. I wish I could just be there and color with you. No talking, just be there with you but I know there is no substitute for your own children being by your side. You have been through so much already and this is just one more thing. I wish they could keep the pain management going for you while they do all they need to do to make sure that you don't need further treatment, it seems only humane! And it boils my blood that someone (especially in health care who has obviously seen this reaction before!) would be so insensitive! Hang in there lady! Ya know what? I'm going to color a picture in the adult coloring book tonight...and the whole hour or so it takes to do it...I'm gonna send healing and comforting thoughts your way.... call it a prayer to the universe for you if you want. Keep us posted on your journey.
  8. Tarina

    I'm a redhead....so....when I get mad it might be on a whole other scale then all "you" non-alien people. LOL But luckily it doesn't happen often. I described the two instances in the last 6 weeks and that is more than normal, because I am frustrated to a MUCH LARGER degree daily, post stroke. But yeah, watch out for fiery red-headed girls when they get mad.... Pele the Volcano goddess couldn't compare! I especially hate it when people think its cute when I get mad, because I'm little and ornery, as though that makes my point any less valid!!!!
  9. Tarina

    Wow! I'm glad I read this thread. For one thing I got angry with my ex last week, and all of a sudden I could speak clearly! I was as surprised by it as maybe he was, but then he told me I was faking it the rest of the time and a liar, didn't do enough google research to fake it well enough...blah blah blah....Hes a A**, most of the time....hence EX! But it did get me wondering. And then today, I had one of those days when the challenges and difficulties of everyday life....I just couldn't meet head on with a positive attitude...and I got frustrated with myself. My friend called so I was ranting at her about thinking a basket in my yard was a chicken--for 6 minutes (my vision said it was moving.. and I know it was 6 minutes because i was microwaving water for my coffee.), and being stopped dead in my tracks while trying to take my sons clothes out the drier because a sock that was my daughters was in there too...and it was purple...and it doesn't belong with my sons clothes...but where does it go?, and what do I do with it?. response (BLANK STARE). And the fact that I had a two page document that I needed to make two copies of and I totally screwed up making the copies, running several just totally blank sheets of paper, then trying to put them all back together (just 2 pages mind you!) and I couldn't figure out why I had 3 pages of each thing....duh...original?!? and then were each of those documents were supposed to go...This was an hour long ordeal (for someone whose job depends on being able to organize hundreds of pages of information and get it to differing areas, getting supporting documents for each part...blah blah.. feeling like a looser). Anyway, when my friend called I was telling her all of this, at first I was halting, stuttering and monotone as usual (sometimes I breathe in when I say a word?!, or hiccup?)..then as I got more frustrated and mad....my speech became clearer and clearer...eventually she said "hey...keep getting mad..you talk better that way". LOL which made both of us laugh. Anyway, I thought it was just me.... good to know it happens to other people too.... thank you so much for sharing your life- all of you-it makes it more bearable for us newbies, and less confusing. Oh yes. and I can sing too...but not talk (very well). Well...I mean...sing as well as a "shower singer" ever has sung before 🙂 Now I do it more and more because it just feels good to be fluid in SOMETHING! Walking and talking like a broken robot and having the logical and sequential capacities of a chipmunk on crack the rest of the time....Singing makes me feel alive again.
  10. Tarina

    Love the emoji...lol Nope. Having an argument with myself out loud in front of others hasn't happened yet. I've just always been an introspective, connected and reflective person. So I have always had ongoing debates and conversations with myself about everything from the origins of words in the English language and what makes Cheez Wiz-cheese, to the symmetry of the universe. Thank you for the answer to the application question. I will need to see more doctors it looks like, and probably pay for them out of pocket 😞 . My first neurology appointment is this week, so all I have is hospital records at this point.
  11. 6 weeks post stoke, my left hand and fingers, especially my last three digits are losing flexibility. I do not get PT or any therapy. What I am wanting to do is "splint" them open while I sleep, in a comfortable way of course, so I CAN sleep. I want to use them as much as possible during the day, so I'm only looking for night time ideas at this point. Any ideas on something I can make at home with common stuff, like whats in my recycling box? I know there has to be a simple answer to this, but right now I'm not coming up with something that seems sensible. (and no super glue Deigh!...lol)
  12. Tarina

    Thank you all for your input and words of advice and encouragement. I will discuss this further with myself (hey...admit it! I'm not the only one with a continual mental conversation going on with myself! lol). and see what I come up with, in the mean time, I am taking some practical steps to get things in order for a solid application for disability. I used to be a paralegal, so when my brain is functioning (5% of the time), I know how to jump through hoops and add information where it might be important. I may have to ask some questions of you all (OMG...REALLY?!? I just said that, I really did move to the Mid-West!) in the process. Like, and here is the big one....is a lawyer necessary from the get go? or just wait for the first denial and get one then? On the definition of disability and re-defining of myself as a mom, as a woman, and as a person....well, the conversation in my head continues....
  13. I'm struggling with this question. I know I'm so different than my previous way of living and what I love to do, i can't. Where my goals were set or future looked like before,need to be re-written and assessed. In fact, EVERYTHING I do is different, and more difficult, and some things I can't do at all.....BUT... Does "disabled" mean "not-abled"? Because I AM able....I am able to do things differently than I did before. I am doing my best to work around my deficits, using my creativity to stay positive and trying new things, that I never thought I would need to try because of my different abilities post stroke. Am I just being stubborn? I don't want to apply for disability, even though I know my finances are in dire straights as I can no longer work (like keeping a roof over my head and the heat on are serious issues!). I dread the signature at the bottom of the application that agrees with the idea that I am "not-able". Even though I am frustrated on a daily basis with everyday tasks, and my world has shrunk to the walls of my apartment, I only feel "dis/not abled" when there is something I previously did for my kids that is now impossible (try as I might, there is no work around) for me to do. I can get VERY upset when this happens. I can let go of so many things that I can't do right now, but in the months and years to come....I'm determined to regain those things that I enjoy doing. But, its non-negotiable to me not to be able to do things that my children need me to do- this is my emotional Achelies(sp?) Heel. Part of me- the logical part- says my children NEED me to apply for disability, because they/I need the financial security and...lol....well a place to live...duh. But the other part of me doesn't want to agree to the definition....and doesn't want to be stuck with that internal identity. Have any of you experienced this internal struggle?
  14. Tarina

    I use hemp oil, (but I'm a "hippy" so you can discount this if you want...lol) In fact all I am taking, and want to take, is CBD/hemp and aspirin, and a good diet. A doctor would have to be pretty darn convincing to make me take synthetic manufactured in a lab drugs, play into the "pharmaceutical industrial complex" and pay out my you know what for something that is going to make me sicker (side effects)...... I usually use about 1000mg, and yes that's a lot...about 10am and again about 430pm (I started at 200mg, then up to 500mg, and now at 10000mg- before I felt like it was really working). It does NOT make me sleepy, but does slowly and gently help with nausea, anxiety or an overstimulated brain. From my experience it doesn't "feel" like a medicine, you don't notice a difference the same as a pharmaceutical drug (so some people say it doesn't work). Its more like 20 minutes later, you realize that your not nauseous anymore, or that your mind isn't acting like a wild rabbit being chased by a bobcat! and headache and fatigue are reduced, not gone, but reduced. I'm ok with slight improvements to bring things to "tolerable". level While other medicines may remove the pain, make you sleep, or whatever.... the side effects of all of them are usually more than I want to take on. If I don't know that my body is in pain at all, or that I'm overstimulated I won't changed the environment or make choices the help me to heal. That being said: I don't work and can't drive anymore I don't have high blood pressure, or cholesterol I was close to the limit of being diagnosed as Type 2 diabetic, but changed that pre-stroke completely with diet, and didn't loose any weight- which is what I wanted, because I am already considered pretty skinny. My stroke was caused by chiropractic manipulation, not by a medical condition.... Also, I choose to source my CBD/Hemp oil ONLY from sources in the USA, from companies who are organically grown and that test potency (a few dollars more per bottle is worth it for me). It is a pain to order it every single week, because they will only sell it in 30ml bottles, but that is ok. I think the argument about it being unregulated (great!-keep your laws to your body and let me make my own choices!) or being untested is sorta silly. You put a lot of faith in the pharmaceutical companies and the government (and doctors)to decide what is safe and what isn't, and THEY have a vested monetary interest in telling you what they want you to hear. Just my two cents. So, for all of you with medical conditions, like Tracy said, don't take this as an endorsement of CBD or Hemp. I am simply sharing my experience...and why I choose this for myself,
  15. I wish being nude was a cure for all this suffering! I'd be totally healed by now! Getting dressed is a pain and it takes a really long time...just to figure out what to wear, and not in the way most girls say that! Nude Dexta sounds like an awesome therapy! LOL