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Stroke Survivor - female
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Everything posted by tmciriani

  1. Just keep your Dr. aware of any worries or concerns. That way he/she can monitor the changeable risks associated with stroke. It's pretty common for me anyway to worry of having another stroke. I am sure having a TIA could cause the same anxieties. There are certain risks you can lower and some you can't. It may help with peace of mind to work side by side with your Dr. to know your risks and is there anything you can do to lower them. I also recommend meditation to calm your mind. Worrying less about stroke will help you to really live life and enjoy it without fear and hesitance. I wish you all the best.
  2. Talk to your Dr. about your anxiety. It is a factor that should be watched and/or treated. There are many kinds of treatment. Anxiety can make that blood pressure climb high and other things as well. Ask if you should maybe see a Psychiatrist. Then be brutally honest of your symptoms...no sugar coating...it's important. I hope you feel better soon.
  3. Anyone here have any experience taking Nuedexta for PBA? I have been placed on a trial of this med. which ran out last Wednesday and the Dr. gave me his last sample. I contacted the manufacturer to see if the had some sort of patient assistance program and they do because it's really expensive. So they said for a little bit get samples from my Dr. and soon it will be processed but he is out. So I never started the therapeutic dose of twice per day....yet. Just curious. Thanks
  4. tmciriani

    Yay I did find out today that the manufacturer is providing this med for me free of charge. I go back to my Psychiatrist Wednesday and hopefully he has samples or maybe he receives the med. The lady said it was in the process phase so it would reach my Dr. In 24-48 hours. I'm excited about its possibilities. It could help a lot.
  5. tmciriani

    Kelli! Great big hugs, I have been thinking about you all week. Sounds like you are coming up with a good plan to help you transition. I am so proud of you!!!! May you get much needed rest and recuperation before this next week. You've Got This!!!
  6. tmciriani

    Pam so you are doing an electrode trial? I think you have said you do feel improvement. Have you found that it always lasts a certain amount of time? What are the future plans for yourself do you think about? Does your Dr. intend on continuing the treatment? I'm sorry for so many questions, I honestly am just curious. I also hope that you will find some lasting relief! This could help so many people! I don't know everyone it could help but I do know you. I think about you all the time and if this is something that continues to help you and even gets better I scream "Yesssss!".
  7. tmciriani

    I say keep talking and following your Medical team. I say the same to any survivor. Also do your part to better your chances for a long, blessed life whatever it may be. I never want to judge another's decision, I only hope and encourage you always be proactive in your quest. I agree with you, do your own research and know what you put into your body and what the side effects are or can be. Informed. ๐Ÿ™‚ Hugs to everyone and have a great weekend!
  8. tmciriani

    Pam...have it printed and laminated then place it on a background of one of your beautiful collages. I said this yesterday...I am my own best advocate period. Your boundaries are very valuable. I say put up your electric fence. May your day and your next be peaceful. ๐Ÿ™‚ Just keep hearing me say that last sentence in repeat every day.
  9. tmciriani

    Ruth I read your post with tears. I see you as so strong...Not many could feel your shoes. I pray that peace finds you both and your family. As a survivor, I can only hope that if in a similar situation that I have the love and support that you have been for William. I hope that sends a message of peace...I know I would be truly blessed and held (when I need it the most). I have you both in my thoughts and prayers. I'm so glad you are thinking about the future. I bet William is too. Hugs friend.
  10. BTW your son is 16...they're not always saying the brightest of answers yet. ๐Ÿ˜‰ He hasn't accepted the notion that his Dad is probably pretty wise yet. Typical! My daughter is 22 and she's still smarter than me...and she never calls me! I have to call her and pray that's she'll answer...then when she does answer I have to pray again that she is actually in a conversation with me and not the game she is playing, her cat, or her weird boyfriend. Yes, he is weird...dont judge lol. Also the dumb ex well he cheated on me with a 24 year old bimbo <---- I know I am a little judgey I suppose. He'd been working on that for a good two months. Not that any of my scenario is any worse than yours just saying...many of us have been through some pretty smelly crap. Now let's dance!
  11. Ed I really hate that you have experienced these things. One thing I do know is that when a loved one...a husband, a dad, a mom, a brother, a sister has a stroke it affects everyone they love and who love them. Not saying at all that certain things are acceptable, just know the reality of it is truly tough. I hear many times too "Its all about you!". I have run through the ringer of emotions about this statement. I have made a point to listen to myself and what I share with my family, etc. I figured out that I do talk about it all the time...probably every day. It sorta is all about me because I am living it everyday...like a slap in the face. The people I share my "things" with hear me over and over. I know it's nothing compared to feeling it over and over. I lost a 10 year relationship (ok so it was the best thing for me), all of my former friends and co-workers have all but disappeared from my life, my daughter who now treats me nice most days moved out because she was tired of me and her bumping heads, my dad is a jerk (dear God I love him but he says cruel, uncaring, demeaning things to me and I live in his house for now...so I feel like Cinderella before she became beautiful), my biggest support is my mom and even she gets angry with me for reacting to something I can't control so she keeps things from me. I sometimes don't feel like I belong at all. You just remember that those around you who have not had a stroke themselves can not understand. Sometimes it makes them angry, grouchy, mean, distant, and many more things. I again have sorta stepped back from what causes me pain. Anti social...I own it. I don't like it really...I've always loved people. I feel lonely. Surround yourself with positive people for you in your life. You can't fix how others deal or grieve or react but you can control how you receive it. It's painful, giving someone space that you need so much is so hard. Surround yourself with positive people. Join group therapy stroke support (I love it), online support like here, a local YMCA, foster friendships with other stroke survivors its healthy and can lift your spirit. I understand and I know so many here do too. It feels so unfair...maybe it is I don't know. I do know that it gets better over time. Time is the key, and like so many of us we are impatient...but I see it in others who have been survivors for a good while. They are more than their stroke and so are we. We just need time to heal the loss...it's a very big loss. Keep your chin up, smile, laugh, allow yourself to feel the good things around you. We are doing the same! Tracy
  12. tmciriani

    Pam I love how you think things out. Oh the inner child...call her to come play often. Sometimes she is stubborn but she only knows to bring with her the good feels. I like my inner child ๐Ÿ‘‘ she brings bravery with the simple gift of freedom to feel joy. It's pure, it comes from the heart. So I say bring out the colors and make beautiful art until your heart is replenished!!
  13. I washed my car (SUV) today. I bought things at Dollar Tree 3 months ago...like a car cleaning kit. I have just been too worried to use it. So this morning bright and early at like 9 am I started. First, I couldn't reach the top so I had my step mom bring down a small step stool. I climbed up 2 rungs and held on to my bars across the top for dear life. I had placed a small container or car wash water on top and used my micro fiber mitt. Three adjustments on each side to reach the whole thing. Like 2 hours later I barely made it inside to take a rest. Top done and rinsed. My heart was pumping so hard I thought it'd just come out of my chest. So an hour of recup. I went back outside and started on one side at a time. Another hour and I sat in my car with the AC on until I could breathe and move. It was another 2 hours before I finished, hobbled myself into the house, changed out of wet clothes, and now lying on my bed barely able to move. What have I done. Like really, what have I done. A bad extra is that I bbq'd my face. It's going to be a long couple of days.
  14. tmciriani


    This is poetry I wrote this morning. It is dark and not beautiful but this is how I express my heartache. Inspired by something happening in my life right now. Please close if you are bothered I will speak sunshine another day. Prey Round and round and round we go, A cursed circle with no control. Weaving a web as it moves around, Looking for trusting hearts and souls to be found. It spins with no effort and catches its' prey, Waiting and lying and hiding each day. Then it spins its' catch in a safe, warm cocoon, Laughing as he relishes the next meal coming soon. You lie helpless and warm not a worry not a care, Because you have no idea that you are deep in his lair. There he nourishes you and feeds you his warm meal of lies, Keeping you safe and well serviced...His own plan he denies. Building and growing a bond and a trust, Filling your dreams with what seems magical dust. Soon there is movement and the circle speeds up, As he spins his web to catch a new unknowing pup. He gingerly tucks her neat and trusting in a new fluffy bed, Not knowing behind her the innocence will shed. It's now that I open my eyes to peer out, To see the light fading quickly, And there is no way out. He rises and pierces the heart of his prey, Excruciating, awareness no words can convey. He devours every trust every dream and all that is good, leaving you desperate for salvation but no one could. Discarding the shell of who you once were, He tip toes back and whispers to her. Tracy Miller 4-23-2017
  15. tmciriani

    "Fire" poem by Tracy Miller

    FIRE Peering out from the darkness, the light grows stronger. Reaching out to feel it's warmth. My skin begins to glow. First, my my arm like a golden diamond with a fire in it's belly. The velvet light and warmth creeps further up my body until it envelopes all of me. I feel weightless, like my body is lifted by the sun's arms. Lifting my head, I drink in all of it's energy. I can take a clear deep breath and the light fills every crevice of my being. Slowly rising, burning brighter. Higher and higher. I feel the rays beaming back out into the light. My mouth falls open to release the glorious energy. I am the diamond with my belly burning bright with fire. Reaching out to lighten all the shady corners. This is my blessing. Tracy Miller 05/30/2017
  16. Ok so Russ, are you saying you had your first dream since your stroke or something that has just flew right over my head lol? That happens. I actually have had the most vivid, realistic dreams ever since my stroke. Definitely weird ones too! I find myself still thinking I'm in my dream when I wake up. Sometimes can take a few minutes to come back to reality. Well that is my after stroke dream experience...it may be totally invalid to your statement but now you know. ๐Ÿ˜„
  17. tmciriani

    Update on Life

    Things are finally calming down after my brother's death. Still no full answers yet from autopsy but hopefully not too long now. Tomorrow his daughter gives birth to his 3rd grandchild (a boy). It may freshen some raw feelings but all in all it will be a really wonderful day. My dad is actually doing really great during his radiation and chemotherapy...no sickness or really bad side effects. He is just over half way through. I'm so glad he's doing well. Me...I am finally calming a bit from when I wrote last time. I have seen all my Dr.s in the past month...Neurologist, Psychiatrist, and PCP. The lump on my neck is not seen on the ultrasound so my Dr. says that is good and not to worry. My Neurologist says I am doing well...She acknowledged the Cerebellar Cognitive Affective Syndrome and that Neurology would not treat it because there is not really a cure but my Psychiatrist and Psychologist would treat my side effects. My Psychiatrist had the privilege of seeing my anxiety attack for the first time in his office. Caused by a stroke of lightening and a very loud clap of thunder at the same time. It happened in a matter of seconds and he just was quiet and let me calm down before asking if I experienced this often. YES ALL THE TIME. He left the room and came back giving me a bottle of Nuedexta. He said when this works it works really well let me know in 2 weeks if you can tolerate it and if so then you will start taking these 2x a day. It will not help certain issues you are having but if it helps and is the right path then it will make a significant impact. The rest we will work on...but 1st this. It was a trial bottle of 13 pills. I am pretty sure I could feel a difference but then realized it is over 1000 per month. Crazy...undoable. So I contacted the manufacturer after about 7-8 days and found out they do have a patient assistance program. I am pretty sure I will receive the medication free. I have since finished my trial bottle and the Dr. office informed me that I had gotten the last sample but they are working on getting more. So for now I am not taking them. Still pretty bad emotional lability but calmer now...no more hallucinations, no panic attack in a few days. Just trying to stay calm. Tonight my ex Narcissist boyfriend sent me a text message asking how I am. This is a common pattern for him. Not sure what he wants this time. I keep emotional distance...and just look and think forward.
  18. tmciriani

    Thank you truly Nancy. ๐Ÿ™‚
  19. I can say I have done both...exclude and learned to smile, nod play the quiet part. As much crap I get from my dad (yes he is not nice) I am living with him and his wife for right now (disability hearing next month say a prayer for me). So I have to put walls up and truly be a anti social quiet warrior lol. Last time I lost it I pointed to the lower back of my head and said "See brain? DEAD!!! DEAD!!! DEAD!!! B R A I N D A M A G E!!!". Oh Lord I am glad I can laugh about it today. That was maybe a month ago...I would have rather taken my shoe off and bopped him over the head but I am civilized. I too have experienced the nagging, fussing, I don't want to hear about it, you're making excuses, something is wrong with your thinking, you are fine, blah, blah, blah. For my own sanity I have done both. Taken myself out of the dynamic or basically appeased who I needed to with deaf ears. Neither always work but they do enough where I am more in control of my own thoughts and actions. Both done out of necessity for my own sanity. I understand you both.
  20. tmciriani

    I used to just get so overwhelmed and lose it during these kind of moments. Now I really have become pretty good at smiling, nodding...passive. I'm totally good with it...I am calmer inside. I get the nags too from my dad of all people. He can cut me down in a moment and then fuss at me for being anti social or passive. Weird. ๐Ÿ™„ I just tell him I don't want to be around people, I don't want to "talk" to people, I really like being alone now...get off my back. He fusses and I walk away. ๏ฟผYassss I have worked so hard at learning the art of anti social!
  21. Thank you Paul. ๐Ÿ˜€ I'm feeling it! Got the proudsies. This is a check off my bucket list. ๐Ÿ™ŒThat's my story and I'm sticking to it.
  22. tmciriani

    Janelle different time different reason but I have been there talking to my eye lid or whatever area that is twitching. Even before stroke. I tell it to stop, put my finger on it, try to will it to stop, look at it wondering how noticeable it may be or is it just me. The twitch pays me no attention! ๐Ÿ˜ซ
  23. tmciriani

    Pam I know it may feel rude. I don't feel that it is rude "to think". We as survivors usually know when people are genuine and have empathy and understanding...care. Resentment is something we all have felt. My best answer is don't let resentment bring out all the negative. Try to focus on positive. Realize how you feel, accept it (which is the really hard part), and then file it away and feel your inner validation. I'm a believer in changing a circumstance that elicits my negative side...that sometimes may make others feel uncomfortable but you have to advocate for you. So I sing "Let it go! Let it go!!!". Nothing is important enough to compromise your inner happiness.
  24. tmciriani

    Yes it is a healthy bit of assertiveness. I have never been hugely assertive but I always wanted to embrace that because you are listened to a little bit different. I've seen it move mountains. I want to move mountains. Sometimes now I feel like I do. I think that it is good for me...others look at me kinda unsure of what to think. I own it more and more every day. Kicker is I am still truly nice...assertive doesn't = mean.