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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. Thank you from my heart my friends. I talked to my doc who said he knows a d he is working on it and not to worry. I have a champion! He truly understands this pain. I am grateful they are so educated and will advocate for me. An attorney might be a good idea except I would need some group that would do this for free. I have to pay most of my money as a share of cost to the nursing home and medical insurance. I am not free to spend as I used to. Anyway I amd spoiled by friends and family for stuff I want but I hate to ask for this. Buy I am confident that in time this doc will be able to help me. Now I am not suffering I can research like some options for managed care. something. The love helps you guys. I laughed at the rainbow blaster!! I do not feel brave I feel relieved now and scared that pain will return before I knoow. They said this time Was the best time for me during the whole process. Last time they could not get the I V in so they say drink up to 2 hours before. Do not be dehydrated for this. But my fear and anxiety has decreased. It is drsired as before but a familiar. Acceptance. I am the dumb cattle just going in. They said it was quickest time getting on the bed. ah we went on new side. It was lower too. It can be an ordeal when in the past they want to put me on a guerny and transfer me. So I told them insostently where my best vein will be and she got it first stick. So that is why I was calm cool collected. The usual guy was absent so the circus did not come that day. He insists they want it in my hand. I have not had one in the hand since childbirth. So I probably looked less tortured as they have done wrists plus arms and all people have a turn. SO off to good start. Now they know how much sedation to give me to keep me still and quiet. This one nurse just marvels that it is different as night and day from the first couple of times. Oh well I reminded her some student guy has hesitated when I screamed stop. ok remember they celebrate they found the bundle and will work on it. do electricity. then do the meds. And for find the bundle I am not sedated. They give me the juice as step 2 while the electricity pulsates on that live nerve bundle then they soak it in liquid drugs. I know the drill. When the doc does it of course it goes smooth. I whimper rather than scream. I know this familiar pain. Know it will not get too much to bear and I am sedated into submission and can bear all things. Lots of trust involved. I know these people well now. I am amazed how this one nurse openly compares my performance. She said I got a gold star this time. a yes I gues s in the past I was more high maintenance. They encourage me to keep breathing...pain makes me hold my breath... now I was better. Well I am relieved now to get it. I know how many times I feel them twist and zapburn me. Then my time recovering is filled with shoulder pain . why? but ice or heat. music and rocking my bunny. finally they double my oxycodone. Sleep finally refreshes. Then here is the finale...during report the nurses dread to hear screams and my inconsolable pleas for helpl. But suddenly that pam is gone. They say oh she is alert. happy. smiling. pam smiling??? Hearing that I wondered about that lost smile. Yes I am a different version today. peaceful content. I got up and enjoyed bfast. I am doing things. puttering aroumd. but tired. that took 10 years off my life lol. I kinda teared up talked to my night nurse who wakes me for meds. I said I am not a cranky person. I love spontaneous fun adventures and I laugh too much too giggly especially when with loved ones or at work and school. I had to stop talking in class. They only know the Hyde side. That conversation was please see past the pain in me. I get this window of time. they ask if son and I will go somewhere. not this window. I have other medical appts. like to my dentist. O had good check up so I get simple cleaning. I leave with supplies for brushing flossing. I walk. I walk So easy l am tired. so awake but so tired. looking forward. lunch day with son. my big thrill. I want to try kfc pickle chicken. eh?cool? just sitting not so painful. but tingles. ok now to forums blogs
  2. You are a completely normal post stroke person. You are going through unnecessary disability hearing after losing your life your home your loved one and now in a situation where your one beloved...the cat...is being threatened to be taken away. I think your comment should be applauded. I know dear dad is unwell and going through his own hate the woelrld stuff but people in glass houses should not through stones Do you know better things are ahead? In time the intensity of these responses will decrease and you will learn to cover yourself or not amd fall apart less or not. But in our support group we all go through these response things. One reason is being caught off guard. we do not practice for everything. Sometimes I feel I am ambushed by someone something. Then looking back it was little thing but to me a giant thing I needed to be big. no apology. I survived so I get to write this. NOTHING is crazy especially me or you. Surviving is complex and look how we live..not walking or seeing right and the fatigue yes always this bone tired but I cannot sleep then adrift and cannot wake up and thrn my drems thete is so much and some feels real. I sort through my real life and memories or dreams and so I am always befuddled as I wake from some nap. But I continue to run my life from sidelines. Just as You are doing it quite well. All normal because we have all never counted on doing it this. I like how later you respond. Like me. Not till you are ready to speak. A wise counselor once told me that if she said it then it probably needed to be said but perhaps the timing was off. She was a hoot I try to channel. I really want confidence. But I can do Real in the meantime. I admire you and identify with your challenges. I believe you are going to find the way and find confidence all along thís journey.
  3. I always prefer to have something to look forward to...like even a day trip is fine...something! And just when someone says I cannot do something, I feel restricted. I should not fly as well. I do not fly by choice anyway. Suddenly I long to fly overnight or something. But I have survived by now just going by car or boat. But I do not go far. Maybe short trips can be longer more exploratory ones filled with new memories. Do not worry, time will provide you plenty to keep you occupied. I love it how you are so full of love for people even for thosr you have not met yet. You are so wonderful. You are the world's caretaker. I wish you could have companionship with all the strangers you meet during all of your travels beginning right from your door step to that 4 hour limit. There are plenty of people to love and I bet some unexplored places in that small slice of the earth. Please never leave here. Your love adds fuel. Your ability to comfort with words is appreciated. And there is comfort wisdom inspiration even in your venting. I hope you know you are never alone. But the loneliness you feel is for your Ray. I truly pray you can meet a special companion to enjoy doing things together. I bet there is someone around you wishing for same thing.
  4. Some friends you miss they are gone,others you celebrate they are. Always their loss. Always replaceable, never doubt that there are more where they came from...better models hopefully.
  5. oh I forgot to say it is my 4th one that I worked on in 2016. wow. I finally glued on my pictures from the bag. I hope to get it hung on the wall. my last one I will not make any more.
  6. New collage

    I finished my collage.
  7. You are a wonderful son! Your time is now. Your parents will always stay close and guide you and pray for you.
  8. RFA tomorrow

    I get it done thank heavens. I pray all goes well with sedation and spinal. I trust. I trust it will go like before. I hope there is not some student there that freaks out when I yell stop. It just comes out....I yelled get this done and it seems it took that guy forever but he was told by doc to continue numerous times. It is painful procedure. I take sedation in IV, they put airhose with tiny things in nostrils. All is well. I climb on table which is scary for me. I feel like I will fall and I go slow. Tomorrow I am going in the chair. The promise of relief gives me courage. I will see son this weekend.But just to bring my stuff. He is always busy. Of course. When alone I cry for my daughter and my grandchild I have been denied knowing because my daughter thinks I failed her,failed to love her. I ask son. he was there too. he sees another story. Anyway I wonder how much hate does she have to stay away. But maybe she cannot phone me my number is different now I am in new area. But wait she knows where I am could google call me here. wow. she never misses me. hard to take. I feel shame humiliation. being a good mom is something i was proud of worked at. guess she is busy being mom to sick baby. I try live in moment. but I miss who she is. our closeness before i had the stroke. some days i think why did they bring me back when i stopped breathing then feel ashamed bcuz my son has loved me well and I love him. I cannot believe she will never be my daughter again...then I am furious for putting me through this. I never chose stroke. I never chose stroke. my life was not made better by any law suit or thing. I never see now as good as then ever. U suffer. I am not just inconvenienced. My family was torn apart over stuff. now years later i cannot even recall it. seriously. i just miss what good times i do recall. when i was proud grateful. but wgat was more real. I just want her. oh well. I opened the gift bag for grandson. she said I gave too many stuffed animals. funny. my mom said I bought too many for her. there is pattern here. and not my compulsive bunny buying. not much. so this tiny lilac grey with grey scarf will not be regifted. I keep it in my bag. i sleep with it. not grown up enough? I color all day. lol. small funs. living being. that is all. ok. I have a gratitude list. I am glad of things. small pleasures are big ones. My body seriously is damaged. my mind follow it. but still not enough help. temp help. no hope for something more.
  9. My doc says this is the best help they can offer me. Right now I get RFA every 3 months and I take a literally mind boggling cocktail of lyrica and 2 different oxythings throughout the day. I STILL feel pain. It takes the edge off because I have seen the screaming Banshee I become when I have been deprived of my specific medication for example when I was hospitalized. They did not carry Or deal with Oxymorphone so the pain management team was called in finally to figure it out after I was in excruciating pain. So there is no doubt what I am off meds. So on meds I get some functioning but my leg burns and has notorious pains throughout the day and impedes my ability to stand or walk sometimes. It also changes me. my mood. my being me. me in pain is not me comfortable. I will spare details of Mrs. Hyde but at best I cry and distract myself with music or movies. Lets stay at the best. Obiously. I have gone into detail before. Now I want to talk about how they help me. And so I get RFA and now we put it at 3 month intervals. So far I know suffering is at 4 months so we will try to see how 3 months goes. So the doc recommends spinal stim. I agreed to do a trial. nothing is inserted perm, just a wire put in spine with battery thing taped outside. I talked to a pain psychologist. What did I hope, what is my life, supports,etc.... I had a brain MRI and had to get anesthesia. I just want to try it. what harm in trying this??? maybe it will not even help. Does RFA help or is it meds they put in. Maybe a pain pump is better. So I decided to say yes to the trial. There is time to assess and decide about the perm thing....help? how much? etc..... ok so timing is important. I need to be in max pain when they do the trial so then I can evaluate daily in diary to know....... And that is now at end of the RFA thing. But instead, this procedure was denied because it is not medically necessary. And so I requested an independent revew thing. They had all my records, saw the dr arguments documentations,my wishes. All of it. Again not medically necessary. no appeals allowed. so the doc must ask someone else or maybe I am out of luck. I cannot pay what this trial could cost so I rely on insurance. What does this mean? It does not keep me alive kind of med necessity.....but it is more than high tech comfort care.....or is it...all the same. Is my physical health impacted by constant pain. Do they understand constant...this chronic does not describe this....it is not more often than not...CONSTANT. Pain is the background music of my life. some burn,some stab,some cold,some ache,some tingle that kills me...could be killing me softly..my BP is ok because I am drugged up, hr ok but what can show them this pain? I need to show them. This determination says what? Is being comfortable now a luxury? painfree is not medically necessary? since when??? I challenge this!!!! Is there some alternative...please do tell. Will this one not help me? Or will it help but buy this comfort yourself. How can I not be so bad off yet that we consider this? perhaps this is hogwash thing not to be considered? Anyway...time for me to explore other things... I like my doc so I will ask if we can explore something else..... But RFA is proven to me.... I go from agony cannot move well to comfortably walking around Wmart. That is the measure ya know!! If I can do a good heeltoe to my chipsnsalsa then Pop, then I am a believer. But is it electricity or just the spinal meds. And is this study stuff I go in and insist I get RFA but it is not on the paperwork but doc knows so he does it. Is it that? Do my records not show I do it and it helps so we increase it??? Time for chat with the docs. For now, tomorrow I go get the guided spinal Things and I will fold up the wheelchair for a few months, maybe walk in a place to eat on my son's arm. I never decrease drugs. The pain relief is 50% maybe more, yes I will say 75...more than half better than before but No not enough to stop but I an not begging for it 2 hours early waitng another 2 for it to work. I can go 1 or 2 hours after due time and still be ok next dose too. And I move normal as I get to. Then dizzy impedes it,not leg pain. I can live like this but wish I could try a pump now. I want to see if my reviewers like this idea. I am finally ready to stop this after 4 years. I need a better solution.
  10. I finally went to Sabothing webthing and I saw the brochure page gone but there was info page then there was a live chat thing but I did not sign up to try. I says you try 30 days risk free so if you are not happy then return it. I wonder how sturdy it is and if your foot really can be lifted by hooks and wire. It looks cool. I would wear it instead of the other brace if it worked. I do not have drop foot so I not know about it but I was curious. It looks like a nice product but I did not see reviews. Maybe you9 know where those can be seen. please keep us in touch.
  11. So happy there is good news about Dad. He has loving support to get him through this. perhaps he too would like a support group. It is not easy road. But we take strength and hope in some positive news.🍾
  12. Oh ueah Heather the vinegar at the local fish and chips( fries) place is addicting. I smother my plate! And tartar sauce is another good one!! Ok so J in the B has my vote for best nuggets and sweet n sour sauce. I could probably eat 100 if left alone! Plus their fries have this crunch to them that is irresistible. Sure Sue it does not take much to think about food! Congrats on your A1 Tracy. Yep I get the celebrate thing! hehe I do the same. And right! When I be good and pass on something then I become obsessed! Right now my guilty P is that I ate Milano cookie. one. good eh? Then I had to go eat a handful. Thankfully I finished them off Quick. My sweet friend sends me Orange sugar gummies too. I ration them
  13. Hi edkel I ALWAYS relate to your complaining. I do not believe it is shameful to complain. If no one wrote their truth on here I would think I am a freak. I would believe I should always be on a Polyanna High so grateful I had a stroke and recommending it to one and all. Truth is that when I read how others ezperience things everyday then I felt validated,informed,and shame left me. I need to hear about how others really feel please or I would believe I was insane and a rotten person. BUT I agree that gratitude is essential in life. It is a coping skill and spiritual experience in which I try and accept God's will and count my blessings, and view my life as worthy and meaningful. Without it I would believe the lie that I am worthless and that my experiences were selfish indulgences rather than real needs. I believe in a balanced accounting sheet. I keep track of withdrawals and deposits. I make sure I dust in the corners and express the feelings before they become unmanageable. Then I make sure my jar is full of powerful words to soothe and empower and move forward. And I need shared experiences so I can see the world through the eyes of another. My perspective is limited biased lopsided. I need to really feel what I am feeling. I get permission from my gatekeeper to bring out these things and then I am not dissolving. There is no pity involved. It goes beyond sorryness to the level of agony. Wondering how I am endur ing what I feel and knowing it is the strength of others honestly pointing the way to where I am. Thanks to the stories on this site empowering me and information that consoles me. My tears are not weakness. It takes courage to feel. It is a hard path to truth. I need not apologize for venting because maybe it is a story for someone else to gain strength. Everyday I feel the agony of living. It is fine to be nobody. especially online. or to express something else. Hopefully here we are all seen heard and empowered.
  14. Sorry Steve my food blog got too long and should not be here!
  15. Sorry Tracy I got excited looking at fries right?