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tmciriani

Stroke Survivor - female
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Everything posted by tmciriani
 
 
  1. tmciriani

    😧 Oh my goodness...this hurts my heart. I never had the pleasure of meeting Denny but I have spoke with him so many times in chat and we are friends on Facebook. He was always so welcoming and helpful in any way he could be in the chat room. I know many have met him there. My prayers for his family and friends. 🙏 Denny will be missed so much.
  2. tmciriani

    Anyone else have increased cognitive issues after a small increase in Simvastatin or another Statin? The first week after I ached all over and had increased joint pain but that seems to have subsided. However, cognitively I feel worse...just forgetting more easily, forgetting what I'm doing, word searching increase. I simply feel out of sorts, in a fog, and more neurofatigue. I can't think of anything different when this started except that dose increase. It is still a relatively low dose...20mg.
  3. tmciriani

    Yes I've read some of the negative effects. I'm definitely talking to my Doctor.
  4. tmciriani

    Becky knowing that I am already diabetic makes me even more concerned.
  5. tmciriani

    That is something to talk about with my Dr. Becky...thank you.
  6. tmciriani

    I haven't tried that yet. My Neurologist says this is one medicine I have to stay on after my stroke. That and aspirin 325mg. My stroke was cryotogenic so no found cause. I see my PCP next month and it is on my list of concerns...the list is more essential than ever right now.
  7. tmciriani

    I understand that Heather. I may feel great after but during I feel every ache and knot. My therapist used to put a body heating pad on me for about 15 minutes before kneading into my muscles. 😰 Owww!! The use of the warmth loosened my muscles a bit before we started. It always hurt though. Massage is so connected to bliss...for me I can understand that afterwards.
  8. tmciriani

    Same here Benni...this is new to me. I sure hope you get an answer and let us know. I'm like you surely you aren't the only one...I wouldn't think.
  9. tmciriani

    Welcome Kris. Glad you are doing so well already. Please feel free to ask questions, tell your story, vent, check out the forums, blogs, gallery, stroke information and facts as well as new strides in medical field. Oh there is also a survivors and caregivers chat (the schedule should be under member dropdown menus). My name is Tracy (massive bilateral cerebellar infarction 7-5-2015) and I'm very glad to meet you.
  10. I know I do that. I find it the best way to see my strives and how far I have come. I also do that sorta by keeping a very detailed planner. My speech therapist spent many weeks helping me to build a habit. I can see where I made leaps of improvement and in more recent times overlooked improvement. It's all filled with good and bad. I am glad I have these.
  11. tmciriani

    Eh, I have the sequence issue quite often. Sometimes with stuff before the stroke. Many times with stuff after the stroke. It doesn't help that my memory (short and for the past 3.5 years) is not so good. I totally remember having the stroke but once I was in the ambulance it's all blank. 24 hrs later I can remember pieces. I don't have clear memory of all after that. Fleeting thoughts, random facts, moments. I can also forget what I went to another room for, an important thought in the blink of an eye, what day and date it is. I might spend a bit of time telling someone something with a very concrete point and the in the middle just say " Well that thought is gone" lol. It's also like it is all in there (my brain) but is stored in a secret file that only opens for so long. The brain is weird. I also tend to remember things out of place time wise. I catch myself sometimes in the middle of not realising which time is right. It's confusing for others and has caused arguments lol. So I mostly just say I don't know during those moments.
  12. tmciriani

    I couldn't drive for over a year I think. I don't know if I should have when I did. My balance, proprioception, plain dizzy feeling all the time, eye issues...but in Tennessee they don't suspend your license. I just tried one day. After that, Adian took me driving in empty parking lots for a while. Then rode with me for a while. I finally started driving on my own...scared the carp out of myself all the time. Over time it got better but I still am a bit swervy between the lines...especially at night. I think each state has their own laws about that. I'm glad I could try to drive when I wanted to but I'm not sure it was the safest thing to do.
  13. tmciriani

    Oh Pam...I feel for you friend. I needed round the clock protection right after the stroke but then things seemed to act "right". Up until I had a cold. Coughing, sneezing, OMG just seeing the toilet has got me several times. I was hospitalized about a year ago for 4-5 days and on oxygen, had a blinding headache, couldn't sleep. It was awful and I begged for a sleeping pill. Which they did give me. I slept (once I got to sleep at 4 am) until the next day at about 6pm. When my daughter came in to visit. I had been unconscious the whole day, no food, no drink, as far as I know no vitals (I know that is not true). Either way, I woke up with my hair wet on the back of my head. 😱 I had peed a bazillion times through the diaper thingy. My whole bed was wet, my back, my clothes, yes I took a bath in pee. How do i come out of that with a little dignity. Thankfully, I don't remember a whole lot right after the stroke in the hospital. I do remember this (ok fellas this may be too much tmi...just saying. Pop out now if you wanna skip). I could not communicate but for a few single words not thoughts. I lay in that bed unable to walk without having someone on both sides to just the bedside potty in my room. Each time I cried and said "blood". No one understood, and they didn't see any blood until day 2. I went potty and the nurse was like oh my goodness did you start your period. I just started crying and said "blood". You see I had been having female issues and a month long period. 😑 I had a 2 day old tampon still there. I couldn't even fetch it myself. I was given these mesh hospital panties with an enormous pad insert. Hell I just prayed I'd make it back to bed, much less pull anything up or down or replace the inner diaper. So many times I got back in bed with those mesh panties falling off my butt because no one would help me and I couldn't do it. There was no dignity to be had...I was too unable to do more than cry about it. Anyways, I wasn't too exhausted to let the nurse go fish out the old tampon...I was thinking you need a little gross to touch your day. I still have to keep a supply of protection for the occasional need. I'm glad I can complete the needed steps needed to accomplish this. I've been there though...and it doesn't feel good. Dignity loses. It never feels quite right when you need precaution. Being women it is common after childbirth and after years but it still never feels right. Add in what stroke managed to weaken and well...their is no good follow up here. I hope you get it sorted and help when needed. Pam I think I have a little monster in me...I'm just like well no one wants to help me...let's see what happens. 😡 That is lack of dignity talking. (((Hugs)))
  14. Giggles leave it to me to write a dramatic book. Love all your quick to the point posts and I feel they are a big help. What they said Prommie 😁! Spoon theory...that is a good thought. Try reading about the spoon theory Prommie...it explains some things that are difficult to explain. Especially for us who have a limited amount of spoons way after stroke onset. Let us know how it goes. 🙂
  15. tmciriani

    Yes! It's that filter that we all have that weakens after a stroke. It usually will happen to me if I get truly angry, startled, caught off guard. LOL I can curse way better during those moments...without stuttering. This reaction comes from a different place in the brain so it can be quite fluent. I don't mean to be rude or intentionally want to hurt another's feelings. I have blurted (shut up! That's stupid! S&$t, d$@n, and yes even the f word. LOL all in one sentence a few times. If I am communicating with another person I have had to excuse myself when I feel that heat rising on my face. I have embarrassed myself a multitude of times. Thankfully, my family forgives me and sorta overlooks those moments and I have been apologetic to others and explain why and I haven't come across someone who doesn't accept that. I'm grateful!
  16. tmciriani

    Very wise words Pam. Each day is a renewed appreciation for life. 💖
  17. Hi Prommie, I hear how frustrated you are. I am a survivor and thought of a few things. So it's been 9 years since your husband's stroke? I know others with even more years behind their belt. Things change in the years past...journals are good ways to remember. Some of my friends still have deficits after 9 or even 20 years. It's especially hard when physically your body has improved and now people may not see that you have had this life altering event. When you say "It's literally all in his head." ...how does that feel and affect him? Do you know? Probably not because most people who have never had a stroke can not relate. How is your husband's stroke fatigue-neurofatigue? What has your husband lost over the years? Deficits? Anxiety? Depression? No motivation? Would like to travel but is expected to be a physically active tourist so not enough reason for that? Was he the bread winner before the stroke? What about today? Was he the protector and provider before the stroke? What about now? Do you know if he is capable of doing these things but just has no motivation? or Is he not capable to fill some of the positions in life he once did? How does this make him feel? Is he social? Is he happy to see, be with, and excited about others and other loved ones? Does he really not notice his actual excessive weight gain. Do you share with him that you do? Does your husband feel helpless or hopeless (all of which can lead to lack of motivation). Does he have a Psychiatrist or Therapist? Have you suggested this to him or his doctor? I'm 3 years past but I had a unique stroke. It affected many cognitive and psychological issues. People have no idea I have had a stroke usually. What I try to keep inside is that I'm always, always exhausted. I have weakness and exhaustion. I also have insomnia. I also sleep to late according to others when I do finally get to sleep. I get out of breath a lot. I have real difficulty handling temperature extremes. Too many people around me can make me feel like an alien from so much overstimulation. Noises bother me. I crave serene relaxation (it keeps me calm inside) and I love to be in a different than usual place or room. Different smells, different surroundings, just different. I forego these things because it makes others uncomfortable...to just be. I know I can't meet their expectations. Life is sometimes really hard for me, I miss being able to do what I used to do and my family doesn't understand why I don't. I sure look like I could bit I know the truth even if no one sees it. You know what? It's depressing. Sometimes I feel depressed...sometimes I just remove myself or mind from the scene. You know what? I don't want to be around people...anti-social...never was like that before. I don't dislike people but I feel my best when nothing or no one is there to judge my lack of something. I need quiet, calm, a lot of rest....I know it bothers my family. I have no idea how to not bother them. It's all in my head but I am not the same Tracy I once was...I may never be...I've accepted this. My goals now are to be self protective even around those I love. It's to find solice in my today. Tomorrow is usually different and differently difficult. I get depressed on and off...sometimes by the day. My saving grace is that a few of my family allow me to be me that day even when they don't understand. My mom says "it's ok to be you right now and I love you". I am forever thankful for her and know I'm blessed. Ask yourself "How can I support my husband today and let him know he is loved.". Can his PCP suggest a Psychiatrist or Therapist? I hear the epitome of depression or simply not being able to work through deficits...depressing in itself. Unfortunately, just being different or snapping out of it may not be a possibility at all. A stroke changes you...many for the rest of their lives. Improvement does happen the longer you are here after a stroke. But I can promise you...it is doubtful that your husband will become like he used to be, or how others feel he should be, and he knows it. God bless your family.
  18. tmciriani

    Deigh I love your butterfly updates. Sorry about Archibald...sometimes we do all that we can and still the bad thing happens. Life is so hard...even for caterpillars.
  19. tmciriani

    I'm so glad they helped you Mike. I completely agree...big pharma is all about the money. Honestly, there usually is a generic of a similar medication that works equally as well usually. Doctors get incentives to promote new Pharmaceuticals. Do research and question the Doctor about a safe alternative that is affordable. Granted some medications have no competitors and that is when I will always call the manufacturer. I'm broke people...and I don't want something to happen to me. 😡
  20. tmciriani

    Heather I hear you!!! I live in the southeast of US...😰 weather/climate is just one of those things very disagreeable with me here. Winters are typically semi mild and above freezing but we get those severe northern dips in the jet stream that bring freezing rain, sleet, ice, snow, or just plain freezing temperatures. OUCH my fingers, toes, and joints. Spring and Fall are usually really nice...bright warming sunlight, flowers, a burst of green everywhere in the spring and crisp (usually bright days), mild everything, gentle breeze, sometimes chilly nights, and a spectacular view of trees bursting into reds, oranges, yellows, and browns as they get ready to shed their leaves in the fall. Then dreary winter...damp, windy, grey, empty, dead vegetation, less daylight, and cold snaps (southern talk lol) with to me dreadfully cold temperatures (sometimes winter precipitation) and tons more rain. On the opposite side...summer starts with typical 80 something degree weather, blue skies, green and lush...it then gets hotter and hotter and dryer and dryer. Typical July-August temperatures are in the 90's and almost every year there are moments of 100 degree heat. We also have crazy humidity during the really hot summer months. No typical southerner gets up without the use of their choice of deodorant/antiperspirant. You're gonna sweat here.😓 It's one of those "I feel like writing days 😁... hence the long post.
  21. tmciriani

    Oh Pam I am so happy for you. (Catching my breath) May the blessings begin!!!!! 🙋🎇
  22. tmciriani

    I absolutely agree with you. Actually my medication, Nuedexta, is a combination of dextromethorphan and quinidine. 😡 Yep that's right...OTC cough suppressant and a cheap generic for a heart condition. If you bought both of these separate it would be below $50. The quinidine potentiates the dextromethorphan so that the body does not break it down and dispose of it. At 90 days of 2x/day dosage you are at optimal therapeutic dose. It is about 20x the OTC dose of dextromethorphan. I get that it is a "new" combination drug but the reality makes me scratch my head. Thankfully, the manufacturer is providing this med free of charge to me. I hope your application for a similar program for your med is approved. Fingers crossed!
  23. tmciriani

    I am truly blessed that I maintained both sides due to my type of stroke and that it is bilateral. I do have weakness on both. The biggest issues have been getting things to move together with purpose and smoothly. A funny example would be my rhythm now. Turn on a good beat and my pre stroke self would dance and undulate away. Today turn on a good beat and you can join me in the "stroke dance"...stiff, clumsy, angular, and far from rhythmic. I've cried about it and I have belly laughed at it. 😁 That scenario is true for the majority of my movement.
  24. tmciriani

    Tranquil...Auspicious... Aspire Ok...three words. I am open-grateful-look forward-feeling inner peace (even if at moments). 🙏
  25. 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
 
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