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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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  1. SassyBetsy

    I did it!

    8XyM.*I now am battery operated! I got a chance to speak to the rep from the company ,. He was there helping the doc. It was not that bad. The doc said he thot they would have to stop. My bp went to 200. Ya. Hurt a bit. But I did it! So I had to reposition 3 times. I did push ups! Not easy on a op bed thing. But they finally got the right angle. The curve in my back was in his way. Then too flat. Ok. Took experimenting. One more time they said. But my anxiety and pain elevated. I was exhausted. The total time was 2 hours on the table. They assure me now they have a map to work from and the permanent procedure will be easier. So then arthritis in my back made it hard to thread. Arthritis? Stenosis? Bone spur. My doc said everyone has arthritis so nothing to be concerned about. He did say to me "You really powered through there at the end and I really appreciated that!" Well after all that you bet I wanted success!!! But nice someone recognized the sacrifice,the effort,the courage. I felt a surge of pride,childlike,those words were needed. Bless my doc for the recognition and not taking all the credit. But he is heroic,he never gave up,he tried even though he thought he went overtime. And they kept me going with the IV courage juice. So I have just 1 lead in the epidural spaces threaded in the ladder of the spine. 8 electrodes are on the lead, impacting different nerve bundle stuffs of lower back, lower right leg and foot. The second one is backup and not needed really. Right away I felt my foot tingle with needles and pins. So I was taught to use the remote and tune signal down. Success!!! I am a responder!!! They said it went perfect!!! Praise and Thanks!! But...... The transport driver arrived and we rolled out only to find a van without access to the seats from ramp. I could not step up. I had to go back inside,call for another,wait. 2 hours they guessed. So I was put back in reclining chair, hooked to decices,BP cuff,O2 finger thing, and quite exhausted & happy, I drifted off a pain pill that was sure to help. Then I WAS AWAKE. Two nurses were saying Ok Shes back, numbers improving, call the doctors from a close by department,call my neurologist. Wait.wait.wait. wait.wait. It All went well.send me home! Two doctors asking me about did you fall asleep? Stoopid Q. I said I already know I have apnea but they want study before they send me around on oxygen. The doc asked nurses how did they notice my level drop. One nurse behind desk was grinning and said "Her Snoring. How could you miss it?" That is all it took for me to dissolve. I accused her Is this funny? Sure she thinks so,she is laughing about it. Hilarious! Thanks? Is this about saving me? And I swear the nurse covered her mouth and face with both hands and they all got a huge chuckle saying no its what we look for...... So there was that annoying sensitivity of mine...but cmon, saying THAT was unprofessional and cruel when it was obviously going to embarrass me. And I had already repeatedly told those 3 nurses that I had trouble with things moving fast ,multi tasking...like them buzzing around me caused nervous chaos vibrating around. Another kind nurse said comforting things,buzzed too but not annoying...softer buzzing yet still hurrying me. Every move hurt me. Breathing hurt. I had told that to my doc. She put it down to my weirdness. Then they explained how risky living with apnea could be. Hearing someone say in your ear, You could pass away,or have another stroke.......tears broke,my soul broke, why had I endured so much to just stop breathing. That funny sound was me choking gasping in a final breath obstructed. What is there to giggle over? Each doc made a speech...and both curiously reached out touch my hand. Interesting gesture that failed to comfort. Why? I just said that it was terrifying to have all the fuss...in the event something went wrong I did not dream of This Way..... And I felt guilty they called my doc to come back..... There he was as I emerged from the Loo...saying just go to rule things out,get what you need.... I could not hear or listen any more. For once I understand the worldview of the autistic.... I was overwhelmed...like the kid at an unwanted birthday party. I am THE brat. The obstinate one. Unknowable. Unlikeable. Yet I suspected the ER would send me back to the nursing home for my doc there to treat my sleep apnea. So I said Of course I agree to go to the ER BUT I said I already have appointment with sleep study.....ok my doc arrived and the medics were there..... So in the interest of urgency and decency....I climbed on another tiny bed. And then the truly OUTRAGEOUSLY HILLARIOUS moments of the entire saga of the day unfolded.....as they loaded me into the ambulance, the medic says "We are only driving over to the next building. The outpatient pavilion is actually at the ER. They could have pushed you in a wheelchair there. My Insurance WILL be thrilled! The triage nurse said I was not going strait to a bed......as if the ambulance fiasco was discovered....she put me in the waiting room....said the wait was estimated at 3 hours. I wore a mask and lamented at every coughing contagiousness surrounding me. And then they gave me that famous turkey sandwich,banana,graham crackers, and the npo fast ended. That was all I needed to feel normal again. And I dozed off in the waiting room where no one was watching. And if no one had noticed,I had a thing shoved up my spine, threaded,pounded.....the numbness wore off. I begged for pillows to sit on,lean against. Somewhere in there they went in same arm same place as the earlier IV but unsuccessful at getting blood. A second try was a fool wanting to use that same arm, I was not drinking water, so I heard myself screaming rather than arguing. He left and I felt they were disgusted. No comfort. I mean the whole day was tortured. Every hour. I scream and no one says sorry. They want an apology from me for not providing them blood. So then they wanted me to sit in the bed reclining on my back. I sat in the chair padded all around sleep overtaking nodding flopping over and then begging for my pain medications.....as expected to need them....in the beginning.....and the doc sent me away saying,well you have had it for a while,so just go see your primary doc, you know it is sleep apnea. By midnight this Cinderella was removing her shoes and sitting in the chair,then sleeping in the bed. Without oxygen. Even though I gave the papers, told the tale. We will call the doc. That is a broken response,and today Between napping,totally day passed unnoticed, but tonight I was adamant. I finally said then return me to the hospital, and then oxygen tank came in for me to use while sleeping. The medic said he had sleep apnea. He was looking fit. That encouraged me to resist despairing I am on the oxygen. I wonder if lack of O2 is making me the irritable person I am. Or maybe 4 years of continuous pain. Or maybe sick of people Who are just annoying. Oh the old roomie who said I made it impossible for her to remain well she sent well wishes. I ignored it.
  2. SassyBetsy

    She is cute and handsome couple so baby wull be doll baby!! Fun travel day! God bless!!
  3. SassyBetsy

    Spinal Electrode in the Morning

    I go in the morning to try the thing. I am scared. I must shower tonite. Now this is a problem as usual. I have new roommate. I have not seen her yet. My admirer brought me a veggie drink that is horrid. Thought counts. He said old witch former roomie told him I had surgery tomorrow. I said No I did not. It is a procedure I will be awake. I will endure pain. I will feel the nerve bundle awake as tūhey thread wire leads into my spine with a local shot only while everyone is there. I said her name should never be rmentioned again. I told him she was jealous. I said she was Awful to me. She said Hurtful things to me. I said I was glad she was gone and I will never see her. There. Whew. I said to him. Do you even understand me? I know there was an audience. No one offered to translate. I heard my voice hoarse from talking all night to my friend. I was sleeping. He woke me. He said were you sleeping??? I just blurted. Emotion was there. On the verge of tears. I was screaming Inside. I am WOUNDED. Stupid. If I had thought first. Here it is phoney cheerfulness. He not speak my language. He said he not play bingo with me for candies. He gets candies at the store. He says he plays to see me. He said Only You I play Bingo with. OMG. OMG.OMG. I feel childish. Silly. There is misunderstanding here. Yes I know I say.Thank you. I say again that I do not like our mutual acquaintance. She is a terrible person to me. I say Yes thank you for the gift. Thank you for coming. I tell him how to get out of the room. He says I only want good things for your life. I feel now like I should have pretended. Shut up. Then I hear him call for housekeeper who brought him up. I hear talking...then in English I hear Yes I know you did not do anything. I listen to that and think I cannot look at him and not recall how she mimicked his calling my name and said blahblyblah. I needed him to know it all but the words were lost uselessly not there. He was worried about surgery for me. I was angry she mentioned that to him. She stole something. Fake concern. And no he is so innocent. Just came to visit us. But 2 women cannot share. I knew she was angry when she heard him call me that day. She resented that he returned calling my name not hers. Petty Stuff. But I feel violated as people come in the room saying you have your room back. WT? And then the nurse is there that I despise. She makes trouble for me. I shoo her off like a fly. Now today I am selfish. I already gave it all. I was nice.I shared food.nail polish. My life stories. I feel that it may be true that no one likes me. I am odd here.out of place. Pain makes me need.Ask.Demand. They only see that. Not tears.not alone. Not ME. I wanted him to see it. Pain. No one ever does. They walk away just always saying it is not their fault or problem. I always show it to them. Stoopid. I told the nurse I reported her so stay away from me. I say Report that to your supervisor. Tonite my cna says she is too busy to get me into shower. No one told her early. I was sleeping. I said I informed them.reminded them. I need a packed up breakfast too. And a mug with tea and fixings. I will eat at 6am. Then NPO until dinner prob. Just water. When it is ok. I will hurt. It does for spinals. Then relief. Will this be so? Ok. Well I want to just survive. I do not want to lash out. I thot I gave from the heart. I was shot at by all sides. I speak up. I may be snotty. But I am good. Better than some who speak behind the back saying oh they are trash then 2 nurses came to speak support to me about that mean nurse. They dislike her. They dislike what happened to me left in shower without pain meds. There is decency out there. But silent. God sees me. Please keep watching. I am speaking up.
  4. SassyBetsy

    Miraculous Mary

    A supervisor that used to care for me still does and I gave him a run for the money headache when I first arrived here in agony. He went to Paris and brought back Miraculous Mary medallions in a laminated wallet card with a prayer on it. He saw my rosary and we chatted about Catholicism and he promised me one. Last week he appeared with it. I am so grateful for this gesture and I believe in the strength he has loaned to me. I also appreciate that some know me here understand me and this pain I live with. I have many who know me well here and yet they are employees and I am just a room number. But some of them well they give you a gift of love. And then days later my new roomie that I welcomed tried to make friends with staying up on a thunderstormy night sharing stories loaned my nail polish and then she woke up saying she was warned not to stay in the room with me when she had the chance that no one here liked me and she was tired of hearing me say I also needed help from the cna. Well there is one call light and that we share...I said I did not mind waiting.she can go first. Well she had simply collected info for ammo. She said everyone was sick of hearing me. It was cruel. When I tried to tell the nurse that I had no problem with her and did not provoke her she mocked me saing oh the little girl is gonna cry. I firmly stated I am not crying. Oh then it was considered argument. They told us to stop. So I have ignored her. No more chatting. They still give us 1 cna to share. When I need something I walk to the door. When the cna comes in she immediately says I pressed the light. Help me. So what if I also want a coffee too.or pain pill. Did I mention that a blind man here is my friend. He asked me to be his girlfriend. I said no. This was years ago when I met him. But I visit and accompany him to bingo. He invited me to his birthday. And so we are good friends. He gives roses and I get him stuffed animals. But there is no physical affection at all.None. I am positive it is forbidden and I do not even want to go there. He is 16 years my senior and his english is poor and my Spanish is worse so we are an unlikely pair but I take him to activities. So....he comes to the room. Calling my name. Unaware she is there! He is surprised! She says hello friend of 13 years. He is friendly back. He asks where I am and I chime in. He visits and I go to
  5. Tracy your writings help me think positively about loss of my home my belongings. Even now I enjoy things that are just senseless attachments. My friend sends me surprise boxes. I give away things I will never use. Our lives are not material. We are spiritual beings. I am happy that you may get your own place eventually. Alone is a good thing.
  6. SassyBetsy

    Yes. Like it never happened.
  7. SassyBetsy

    Sue the director of nursing said I needed to go to my room in a shower chair or wheel chair to get the pill. I was crying in pain not temper tantrum. I was polite. I never curse. I called ombudsman and the lady said be careful of complaining. They can say they cannot meet my needs. I have been here 3 years. They said that was policy. And no blood checks no insulin out of room. Nonononon. No one lives by that here before ever. They discouraged it in dining room. I would walk by nurses station and take insulin on way there. Hoping to get to food before it hit. The ombud said are they lying to me? I took a picture of it today. Ok so weekends are not mon fri but yes People first. It was not my fault to be in there. Another man went before me. We said ok.but he took longer than expected. And pain comes on harder sometimes. I am in a high priced affluent neighborhood close to the hospital. Inhumane treatment.
  8. SassyBetsy

    Spinal Trial.

    On Nov 9th I will go in for the Electrode trial. I am tired of pain. Risky but I will bet all on table now. I live in agony in a world that sees only weakness in it not the strength it has taken to live since 2014 in pain. And I need pain pills on time. So the home has policy that pills given in room omly. I got stuck inthe showers and no pain pill given. Policy first. I need freedom.
  9. I have said thing forever but now am going through saying odd things or opposite word I not want to say. Sure being tired brings on shakes and stroke stuff more. I find it frustrsting and I speak slow some say sounds normal but I know it not right. I derail and fake the ending clueless about what I am saying. People laugh. It is funny when I say hand me the zipper please but not when they ask me and I say no...then embarrassed I say of course. Brain stem.pons area
  10. SassyBetsy

    I also trade fatigue for relief. BEST wishes that you find solutions. This is awful to live like this isn't it.
  11. SassyBetsy

    Hi Welcome to my FUNHOUSE! I take meds for dizzy and vertigo. I wear prism glasses for my visual stuff. I use an eye patch sometimes. So I know what stress and just being in new place can do. I pray others will help by realizing I live in that house tilted sideways with funky mirrors. Good socks. Hope th= knew shoes are fun.
  12. SassyBetsy

    Tracy YOU have YOU! Belong to our group! Love yourself and do not be let down. Families are notorious for causing hurt sometimes so protect! Heal! Enjoy your life. Material things come and go. Don't worry about that old stuff. Someday you will. I am former smoker. It is a hard hard step to do. Congrats! You are strong and Beautiful!
  13. SassyBetsy

    Can I bea crazy cat too without a kitty?
  14. SassyBetsy

    Oh and the lady talks non stop about staying now haha, but she has lived in other room with a roomie for a decade, so she is torn. This is 2 beds not 3, the room has light and air, and I rarely run my tv since I watch netflix on phone. A gift from my son. And has me. So since she hates the lady in middle bed,that one will prob come here. Another dementia. I will explode. So we will see.....