Jump to content


Stroke Survivor - female
  • Content count

  • Donations

  • Joined

  • Last visited

  • Country

    United States

Everything posted by SassyBetsy

  1. SassyBetsy

    Probably takes time to see the results. A So take some measurements so you can see productive results. Music makes time fly. Good for you. Live in hope.
  2. SassyBetsy

    William is fortunate his son is coming. I hope he is clear minded to enjoy that gift. I know a part of you will feel relief when Will passes because this is hard to endure. One can hardly prepare for grief. BUT your strength will somehow be there when you call it like a trusty stallion to help you.
  3. SassyBetsy


    PAM'S PAIN PRECEPTS 1. Never touch my leg. It burns next to the eternal yule log. I have been branded by the touch of others. But with permission all is well. 2. I feel stabbed in my leg, calf or foot. I walk slow because it seems like butcher knife follows me stabbing me in mý calf. 3. Wake me for pain pills or prepare for me to wail for for hours until the next dose. 4. Sometimes I just need to color all night. My symptoms hurt. 5. Sometimes the covers are too heavy and I call out for someone to remove them. My leg burns or electrical zaps consumes it. 6. I will want to get out of my pants as soon as I can. I love clothes but now I only harem pants or super soft material. 7. I will do PT according to what my body can tolerate tomorrow not today. My pain does not hurt much now but later I will pay. 8. Allow me to sleep until the pain subsides. Just save my food. 9. I need my pills on time or early if I previously too an earlier dose. 10. I am probably addicted to these pain pills but I have constantly been in pain since my stroke. This is chronic pain but complex regional pain syndrome is more than intermittent pain. It is CONSTANT.
  4. SassyBetsy

    8I hurt so much now as I wait for Oct RFA. But it barely lasts 12 weeks before pain burns. I suffer spasms too. I cry morning and evenings as the 12 hr extended pain pill And med for break thru become due. This morning a nurse appeared bedside and held my hands telling me just hold on the pill will work. She had Caribbean accent??? As I calmed down she wiped my cheek with back of her hand and said she will return. By the time she did I was up eating breakfast all smiles. I never had pain like CPS. I am Mrs. Hyde or just sobbing demolished. Then pills work. Dr. promises my hope is in electrode because RFA helps. He says my stroke was in unusual place to produce so much pain. oh. um. so I still need insurance co to pay before a trial can happen. I have PAM'S PAIN PRECEPTS. Some here know me but are not as kind as the nurse today.
  5. SassyBetsy

    I am going to pain support group on mondays soon. I am excited. It will not be people who have had strokes. I will be with Normies. Wonder how that will go....... But looking forward to hearing about how others live with pain.......
  6. SassyBetsy

    It is like me and my salad dressing. I love blue cheese and yet if they say I cannot get it them I get Thousand Island which is also good or wait ranch Russian vinaigrette or wait... raspberry vinegrete!!
  7. SassyBetsy

    I lose my train of thought, fumble around for words, make a funny sound when saying f words, and I swear I talk super slow. ok so maybe I talked too fast before, but I said yes speech group helps. Just sharing our stories helps, and chatting too. Just because I can talk, do not think my speech is what it used to be. But nothing is changing. But after they interrupt me,finish my sentence wrong,or twist my idea,and I get upset saying wait for me to say this right. I had a stroke. They say,no, you are fine. But how to fix these things. step one.be calm step two.be calm step three.be calm. once flustered, I bumblejumble my name and address. Or I smile nodding wthillbilliegoat, what does it matter let them think for me and so they go away feeling like a genius when they were stooooopedos hitting the wrong target. oh, those best ones are on the phone. they transfer me. I tell the script more times than an FBI fugitive, often really reading what i need to say. ..but people cut me off. transfer me. oh and those conference calls. they say please hold while i call that office to verify discuss report and speak when they come on the line. ok once,they were not doing what I needed and I was shouting listen to me,can you hear me,this is not helpful,you are messing things up, can you just stop and listen. and that was me being creative because my mama washed my mouth for shut ups and that is 4 letter word to me.SHUP. Anyway,the nursing staff came running to see if i was ok,what is ruckus going on. As I recall, I hung up just speechless in my state of mind. Gotta love it when they ignore me,like I speak martian. Especially when I say No. And the just keep asking. maybe a tad differently than first time maybe exactly the same. No. No. Can you hear me? Please listen to what I said. Can you respect me as a person who made her choice. No. Mama said No Means No Every Time. I loved that and use that on all kids,no matter their age. So they think my stroke ruined my mind, but then they expect me to be brilliant. Make up your mind.
  8. SassyBetsy

    You are so right!!!! I needed that pep talk to remember that thinking is ok.accept all of me. It was not my stuff I picked. I accepted it with gratitude and graciousness. I assured her that giving us residents supplies of our own is life changing. We have an activity now.independent but yet we share looking at eachothers work or sitting together coloring. this is adult art. I color someone elses drawing....like an illustrator team thing lol. I am a color specialist lol. yes my hobby is all i can do to be productive. maybe their budget does not allow for what she said picknit out......I saw she genuinely wants me happy. I azsured her she brings good to us. she does make a difference. In fact she has not told us to share and in fact gave me another set. and more books. it is amazing we got all this .That I received some. I suppose the child in me is selfish stubborn. Anyway I get something so I am blessed.
  9. SassyBetsy

    we sure do!!! Before stroke I was right side up in this bottle. But now it has breen tossed into the sea. The social worker here has a standard reply .....sorry that is NOT in my department. THEN she comes in quarterly to ask how are things going...... suddenly i tell her something.... and yes she spits out the reply. oh and activity woman was there....said books came in.... hooray...but will it be the one i requested or another one? am i rude for resenting the gift?I am disappointed in false promises.
  10. SassyBetsy

    Well time to do nothing is ok too. you are the boss of you.
  11. SassyBetsy

    Connecting to Others

    So I want to make friends here again. I find people to play cards with to there are many personalities, many stages of dementia, mental illness. On the day a psychologist arrives, they wheel them in. I think to myself, this puts all ill folks together but a cna told me that different areas get the crazy ones because it would be too hard to care for 12 of them,so they spread it out. ok so that is why. But I went out of my room, shared my coloring stuff, cards,chinese food.And these folks were a toxic trio times three. One man buys pizzas for staff and select friends. pizza left me with upset stomach watching them argue, fuss, and leave one man out, whom I befriended...immediately that left me out. I am glad I showed her kindness. I tried to be nice to all. Watching this man stir the pot left me ill. Then the women.....pitting one against the other,jealousies, petty stuff. Like high school. childishness. Are we not adults with a shared painful history. I said I would go out and try again. After another day in common room under florescent lights,loud big screen, and over the top drama....woman in tears over some argument......left... ....more drama.... I am back in my room. happy to be alone. I went out there but I found it exhausting rather than the fun days I played bingo and enjoyed it. Now I got drawn in. hurt. yet detached enough to walk away knowing that these are not people I will continue to visit or go out in common room. I would rather color or watch movies. I told one lady, I do not even know the other lady so her snippy stuff is before I got here. The lady said does not matter,she is that way to all. I said of course. And I asked why she continued to hang out with people who frankly act like they hate her....she answered she was stilloo an inherent right. What kind of chaotic circle of hell was I visiting?? I took my toys and went home. After asking her if she needed any of the colored pencils she was borrowing. She said she had finished. We went our separate ways to bed. Later that night I was asleep in the bathroom.....no one checked on me. So the night shift cna was a girl who has taken care of me before. She took good care of me and told me gossip that these new staff had not kept the patients cleaned up. I said well this man bought pizza for them and his select crowd. she said they failed to change patients so next shift worked harder. My deal is I fall asleep in the chair. I not ready to sleep at midnight. And no staff looks for me for pain meds...just for glucose chek@
  12. SassyBetsy

    My eye lid twitches when I am stressed and loss of sleep. I also suffer from dry eyes and using a non medicated refreshing ointment at bedtime,along with permànent tear duct plugs, and gel tears has made my eyes feel pampered. My eyes strain easy now and I overwork them. I find that good sleep fixes many things.
  13. SassyBetsy

    I do the same! But I feel fine at thè time, then sleep,suffer,repeat.
  14. SassyBetsy

    Oops,our group is for TBI,Etc...some had brain tumors....I call it stroke support because it once was that and neurological injury group is long....lol,excuse my not being all inclusive. Maybe check out new person, ask why the switch, and tell them what you want. It is reasonable to not want to start all over with someone who may not get it, and some of us are complicated and picky about pur providers. But maybe it will be a good thing too. Hopefully you have a choice. I went today, went to PT, then took shuttle bus to bungalow where group meets. Very fun, but tiring. But nice others get me.
  15. SassyBetsy

    oh when I ask for help they say,oh you make your appts so you handle it. it is exhausting. 😅
  16. SassyBetsy

    I used to speak in public, sometimes not easy, sometimes very easy. Now I do not talk fine,I am slow on my feet. I lost my train of thought mid sentence,or I retell a story in 5 minutes. I hate it when people try and rush me by guessing what I might be saying. I have said Do you want to try and guess again? or I have honestly been so distracted that I said oh boy, now that confused me so I need to start over. It annoys me that they do not listen properly. I get shy to speak in group now,afraid I cannot say what i mean. for the doc, o make a list of things. I interupt people.. I try wait,then jump in ,it cut someone off. oh well I jumpeç. better this way. But I find it challenging to not stand up for myself and often I am insistent? Do I sound rude ??? I need to tell them. End of story. How else can I be in real world.
  17. SassyBetsy

    I envy you. You will be back in the living world. Get all those ADA things to make your life better. It will be a challenge but this your second chance. I hope you like what you will do and you make new buds, wear great clothes, have fun with it. Vestibular challenges are daily fun house events, just walking down the hall. You are strong and able to do everything tossed your way. And when it overwhelms, make them understand. 💅
  18. SassyBetsy

    oops, Peder Helland
  19. SassyBetsy

    oh tracy and when i cannot sleep i put on peter helland music and i lie down with my arms over my head like i am floating on water something relaxing about the arms that way.
  20. SassyBetsy

  21. SassyBetsy

    Lol all of my posts are me on drugs now, at first it scared people.....what is so funny is that we think we are normal on the drugs lol who knows! Glad your adventure went well. you were so brave. I hope you feel better soon and go swimming again.
  22. SassyBetsy

    Tracy, sleep is a mischievous monkey in a nightcap. When I do not want him around he appears and chases me down, but when I want him,I run run run after him until properly exhausted but the more I run, the more anxious I feel. noise irritates me. I find using earphones plugged into my phone and watching a movie silences my own thoughts and gives me a focus,a distraction. I suffer from nightmares. side effect from all the cocktails of drugs. vivid real like. painful content personal. I wake sobbing,missing people,feeling horribly anxious. But anxiety is a signal only. that is all. triggers signals and conclusions. for me I must engage my mind fully to block out the noisy chatter in my head. If I fall asleep then good. If not, then I know I will nap later. Stress can backfire and make me sleepy later and perhaps I only slept too much earlier. BTW I am going to sleep study as soon as they schedule. I understand insomnia and anxiety well. They are Pain's cousins. Tracy I try and read your posts always, they are never boring.just the opposite. you are honest and insightful. I usually relate. Thank you for blogging.
  23. SassyBetsy

    Ruth, yes William feels loved and safe with you, not just caretaker, but you are his wife,his life long partner,his love. And you have shown him your love for him, through it all, your love shows. William knows. He may wait for you or he may be sneaky and go, but William is peaceful. I hope you are proud of the years you were caretaker. I hope this process will be a memory that you will find meaning in. A death watch is an experience we fail to discuss. You are brave to do this at home,another blessing for Will to be at home. I hope you will feel joy to be alive and not grief but celebration of your life and great love William.
  24. SassyBetsy

    No,it is closed for the 8 weeks, meaning same people continue ..but I can do another group later...if they give me notice. But I do go to an open stroke support group. No about pain but we talk about things. it is not like being taught...but guests come. I go once per ?month. nice but not enough. but nice in person.
  25. SassyBetsy

    Sue, Although I have never met you in person, I feel you have listened and know my secrets,and shared your life in a transparent and inspirational way,and with so much love and wisdom in your blogs. The greatest gift to us bloggers has been that you give the gift of your time to read our lives and even summarize so each of us cpuld learn about each other. Living on angel time is a quotable classic Sue. I will quote you often. One friend told me as I grappled with my unfinished goals in life...we are not guaranteed life. I heard this with shock, because I expected to live. I failed to accept that my life,each moment is a gift, and not on my time at all. I stammered but I need to finish this or that.I planned plotted schemed ...ah the plans of mice and men. But we are promised peace,and we are promised that we are never alone,we have been wrapped in God's loving arms. Thank you Sue for showing me how to graciously accept the difficult, the unknown You are brave and strong. But when you search for those attributes, yes you have an angel. When I had a stroke, I was so calm, I did feel angels around me. We are never alone. And you have Ray waiting for you Sue. You are so lucky to be a loved beautiful person. Be fearless. Be free. I pray you will always be comfortable,and that your angel will keep a tight hold because we need you, I need you.