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Stroke Survivor - female
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About SassyBetsy

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    Chief Mentor
  • Birthday 10/10/1963

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  • Stroke Anniversary (first stroke)
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  1. Sharing my story, self advocating

    Recently I had to speak up about how my diabetes is treated, I told the nurse I had dr. permission to administer my insulin and I knew how to take care of myself and then she said AND YET YOU ARE HERE IN A NURSING HOME....and I suggested since she is new does not know me can she go get the supervisor who could advise her, she insisted we do it her way which was with holding insulin and that was wrong. And in the end The next day, my endocrinologist called them with specific instuctions which I had been self advocating all along. No one said that nurse got it wrong.... I cried because I have reasons for being here, and that sounds benign but it was insulting. And all my doctors, therapists say self advocate, educate about stroke,about pain syndrome, about what I need,who I am. So today that lovely woman brought me communion. I cherish her. I talked about my appt yesterday with pain clinic. I shared about my possible upcoming electrode surgery. She helped by saying she knew knew 3 that worked well,1 that did not. But I shared my story about stroke and getting pain, and how I came to be here, my disability denied then established, my inability to live alone. Well she asked me what to pray for and I told it all. I noticed she looked at her watch. I apologized for burdening her with all that including talking about my lost career being early retirement, but I missed my work dearly. She said if we help 1 person we are successful. I wonder if anyone listens. A new worker here replied this is a nursing job,pays the bills. I doubt either one of those statements about being a CNA is entirely true. And I am more horrified at her statement to a patient. I worked in schools, I would never told that well it was a job.......well perhaps for that unfortunate soul, maybe this is first job she gets or keeps...but we here in a nursing home are not afforded any dignity. I feel sorry for the employees here because I had successful job and life and I knew how to behave professionally, even when I had challenges, but I am regarded now as a vegetable, but even though, I have broken body and mind, my soul my soul is here requiring nuturing and dignity. So that visitor brought me a reading along with communion. It said to be humble...lots of stuff about humility and blessings. I feel bad for my pride, yet rebellious because hey I earned that...but in the end are we not all damaged, are we not all the same in that we got where we got with help, and that we pray for those who do not understand. I realize I am one who does not understand maybe. I just feel violated, treated disrespectfully, but I must trust them because of the surgery I need. All this self advocating is exhausting. Thinking is exhausting too. I have unseen disabilities that is difficult to deal with. I have pain which is crazy to talk about. But can my future change with an electrode?
  2. Your post makes perfect sense to me. I am sorry you are enduring this. I have been on this blissful ride where pain is indeed stopped but life is suspended because like sleeping beauty I survived only to miss it. Right now they say it is not meds, but maybe sleep apnea. The thought of wearing that mask terrifies me, but I need test first to see. I may get electrode in spine to curb pain in my leg, but I need to do a trial first, but wow just to eliminate need for all the painkillers inspires me and gives me courage for this terrifying procedure. I never thought of stroke making pain. I am grateful no paralysis, I think.......what did I just say? All the ways you describe the pain is true for me too. I have lived for 4 years now with this absurd pain. Hang tight and try everything, physical therapy, splints, etc... and never be ashamed to speak about this pain because we need to educate them about CPS.
  3. A tangerine.

    I spotted an orange thing on a little bush out here in the secret garden that my room has a patio on. I thought oh wow, and asked the housekeeper to go out there and pick it for me, recalling how I would go fruit picking in the past. It was a tangerine. It was delicious, forbidden fruit..Small unusual amazing things happen to me once in a while.
  4. Really not surprising since he adores American Actresses and she was digging for this a long time but love??? only they know and I hope it is not another show like Diana's Kate and William seem happy with 3 under 5! Or too busy!! Honestly I believe all the wealth in the world not make up for lonliness and a regular life is what some chose just to have love, which teaches us so much. I am caught up in the I wanna see and just imagine wandering the halls of those castles at dusk in my nightgown and slippers looking for hot tea it is not easy being the foreigner
  5. New Shoes and Swelling

    I am so happy with new pretty shoes, athletic,supportive custom made orthotic,all paid for from diabetic medicare program but I need to break them in,and my feet swell off and on I wanted some pretty ones, I looked through catalogs, got what I liked, bought matching socks and tank tops So I asked for help putting them on and the cna says why do you keep buying these shoes? ok,these were fitted,measured, but i swell, but i cannot wear slippers always I go now to cardiologist again to address swelling next week i go back to have fitting with shoes prob is i get blisters sometimes when shoes loose my feet are numb so i need to be careful all this post stroke meds made swelling, numbness but I need for pain I miss my Sandals Bye guys Pray for my happy feet because I love these new shoes I want a normal shoe they said this is size,but maybe i need a wider one,seems like my size is right but foot is balloon I expected her to like my new shoes, not complain about type of shoe they said tie was ok just as flexible as velcro ones i had before
  6. I try and just deal with the doc and this PA has attitude with me, prob just in general with life yes I always speak up, no profanity, try to be polite not show my disdain, but the professionals never even try to hide their feelings and label me as difficult.. after a month like this, I cannot believe I did not let Turrets just go She is PA for all endo clinic, I have tried to avoid her I think she will play up refusal with the doc I hope he knows this is the limit If they could just make something decent..then they act like oh yeah this drug just does this.....like it is tolerable thank you guys for having my back,makes me feel better😁🕊
  7. Gift of colored pencils

    Today the activities director gave me a set from costco and she ordered 2 book from an author I adore. This is special since there are other pencils there to share. This is all mine. I feel grateful, happy, and loved. It is a miracle gift. I cannot wait for t*he books, especially since onc e it was promised before, but budget excuse ruined it. Getting new pencils is a miracle to me, with a sharpener and canvas pouch. Kindness rocks. I have to pay it forward too. I regift books I do not want that are sent to me.
  8. This is once per week shot, lowered my blood sugar numbers well, decreased appetite as hoped I ate less too. I took it 5 times. I lived on zofran and immodium the whole time. I woke in the morning with messy accident, I threw up projectile style, and suffered royally. So I called doc office and the PA said, so your numbers were really good,and if you ate less then that was the goal. I paused, repeated why I quit now, maybe poor connection. She said, ok sure I know, but you are saying then you refuse to take your medication, a little pause I said is there something else...she says yes, but your insurance does not cover it,but we can try....ok I said...thank you...I have to uy sit for salon day I joked. seriously no joke. silence, then she says it will take a while so we can do the paperwork. Ok I said I can recover. she said goodbye, hung up. why do I feel I failed them?? I hate vomitting even if I loose weight. And oh believe me I have become anorexic due to this drug. It was brutal. I am weak, and I was told to eat more on it. Anyone else tried this?
  9. chase that rabbit.
  10. Bring a detailed log,daily diary to next doctor appt and get a neurologist immediately to watch over these changes. He will probably get an MRI to examine the brain and diagnose any strokes or not. It depends where the compromise is in the brain because every stroke has specific individual deficits. Be a strong advocate because your power is before the stroke occurrs, so seek medical advice from specialists now rather than later. Yep, with stroke recovery, every day is different, but look out for tell tale warning signs,go early to hospital and find out what will be signals there is more trouble,or what will be on the list of recovery stuff. And live life. Worry is stress and unproductive. Make appts,keep appt, do my homework exercises, keep my diet on weekdays, and be as spiritual as I can. A neurologist during the first year of my stroke when I was scared, said to me: Just go live. And I am.
  11. You are a blessed mother Asha, one child here you raised and are so proud watching him grow to manhood, and one child,who is with you in spirit and waits to hold you some day in the future. You were spared to live this life to bring joy and knowledge to your family, and to allow them to continue to love and hug you. And you are valuable contributer here full of practical and spiritual advice. Yes we are prepared now in new ways, if we are called by the siriens again. Glad you had special day doing your idea of fun day. my idea too.
  12. you can ask for neuropsych testing which will examine your wife's processing strengths and weaknesses. Medication also impacts our brains but for me, while I have no cognitive impairment according to my neurologist, my memory is influenced by medication. I also have slower processing. I wish people would realize I did not get dummer just because I ask for clarification because asking for repetition gives me time to sort it out. If she has cognitive deficits, she will need extreme help, but she is still aware she is a grown up, and this is problematic. It sounds like marital problems,relationship issues, expectations. Some marriages this is a deal breaker. This sounds like torture to live this way. I hope you will seek assistance and allow your wife a chance to trust you will be committed to growing together even in these difficult times. Also stroke fatigue is real. It is not laziness or disinterest. But there is grief too, that takes lots of time to adjust to. I suggest talking to your wife even if it is slow and maybe marital counselling may help. Baby steps. And reading here hopefully will show you our perspective and how we live as survivors. If you look for what was before, you will not be looking ahead where life is happening.
  13. Yes,it is in the hands of the doctor now who is wondering how my CPS diagnosis was confused with Tummy Pain and so it will be sorted out. I get so many letters saying everything is not on formulary. so annoying
  14. So maybe I will or maybe I won't, but the flippin insurance world is deciding my medical treatment. The denial letter said we were told you have tummy pain. Ok so after my eyes bugged out of my spinning head, I was laughing like a leprechaun with a new pot o gold. Guuuuuulllllllllllleeeee Sarge, but why caneyt aye ave a spinal stimulator for my tummy? After a quick call, I had insurance insisting tummy was listed in the diagnosis, and then the girl answering the phones at the pain management clinic at the world renowned Strokeplace was searching to find any mention of tummy in the doctor notes. Wow I thought maybe I was Alice dreaming, or that maybe THC got in my food off the cook's apron, because in what universe is a doctor using a oversophistocated,ultratechnical medical jargon terminology such as TUMMY. Sheesh I disconnect at the moment the insurance agent...they still call them agents now or are they guidance guides...telling me that if I want to appeal then it will require them to send me papers to sign so I should ask the doctor to send more information. Do I sound like an alligator lunched on my arms at the
  15. 4th anniversary

    This year is more about acceptance,coping, and building a life around what I have.