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My Latest Adventure

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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.  

SassyBetsy

SassyBetsy

 

New Gifts

ok, so the pain hits at 5pm on time like a train. spasms too. so they give me the world's tiniest pill with the world's largest pill. That is my oxycodone paired with my glucophage. simply because it is before dinner and the nurse already must visit me twice in an hour. twice a day even because an hour after oxycode comes the oxymorphone.  Can this be spaced out a bit. Well in between comes lyrica at 2 and 10pm. but the 10pm actually comes at 8 with my bedtime insulin because I am freakkin wirh pain these days because a RFA is the real pain killer or perhaps the spinal drugs. Even they do not know. Is it electricity or it is pickling nerve spaces in drugs. But certain is that pretty pinkish...and the 3 pills are varying lipstick shades of pinky.orangish. kinda orchidytigerly brownish capsule. BUTthese in a timed daily regime cocktail only gives me a faint edge off screaming about the levels of pain I feel. Which aggrivates people who come running not because I a fellow hurt and not becauae I may wake napping neighbor BUTthat a state supervisor here for sweeps may hear me and pop out the timer on his cell while appearing to read a text for dinner plans and slowly answer But he really notates the response to scream time.Well I know that they ask people in the business office and physical therapists to answer the call lights only to turn them off. This is tricky they pop in and say may I help you Mother. I was here a while before I realized this was not an insult. They call everyone here Mother or Uncle out of Respect. So then I say have we met? I make small talk and then ask for whatever. And by then sometimes forgot...but they reply: I'll tell your CNA. By now my call light has been off an hour and I am engaged and not more needs with more call lights. So..this year I play a smarter game. I say I WAnt My CNA. That saves lots of time. No happy PR stunts for me.   Ok so a really nasty annoying obnoxious nurse that I just refused to say anything bad about because she would end a sentence with you can have the supervisor take care of you. And I would say naw yall doin jes fine. And so she had to deal with it. She  left today and we disagreed about my insulin as usual. But she gave me a bag of pretty hair bands clips and headbands and Bath soap and lotion from the best soapshop ever and included a mini tote bag to keep it in. I cried over the lovingly chosen personalized gifts that she told me she bought because she truly believed I would enjoy it and not because I was upset at her. Well I would not have pegged her as the type to bribe a hug and she caused me trouble again today and did not stop by to say goodbye. I showed it to others and they said oh so nice. Ok so yes it is nice to hear that she truly enjoyed taking care of me. But honestly I cannot say that she was best nurse. I never wrote her caught you caring. I looked forward to her days off. I cringed hearing her voice say my name to wake me if I fell asleep after being given my 6am then 7am pain pills. two things happen.I either get up in pain ask for hot morning drink to watch movies OR I am in bed passed out from the drugs then awakened suddenly out of sorts from a drug dream. like those vivid real ones. me exhausted. Saying no not ready to get up yet. Saying please do not ask me on the hour.let me sleep until my next dose unless you see me up assume I was not ready. No I am not lazy. Sometimes I was up until 5am pain dose because it felt like my leg was being cremated. NO she and I were never kindred spirits. We never shared That Laught That moment. I hardly knew her. See here I meet all sorts and a very few we share and I know it. What the heck is it to be given a gift from someone who says I know you are upset at me right now but I didnt want you to think I bought it because you were upset at me. Wait dont we do exactly that. And maybe wait for a better time. Maybe wait for the last day then. It felt incongruent to accept this gift. feel happiness.yet annoyance at her.the situation.  In fact I almost did not accept it. My immediate reaction was Oh 0no you did Not. I shook my head. She says I can donate it if you dont want it. I said No I am not going to be like that. I accept it and from what it means and I held out my arms. Her happy face showed me her sincerity. In a second she almost thought her kindness was refused. What kind of prideful fool dismisses such love. AND yet I am so happy she is gone. I will not miss her. I miss others like the one she replaced...and all I can feel is gratitude for the gesture...not really sure what it was. I feel guilt. Like I broke up with someone again who was not relieved like I was....or turned down scout cookies...no creepier. I feel like I uprooted flower beds  I feel like I am happy a nurse is leaving after she gives me really thoughtfully picked out gifts. And that others know her sweetness but I am that..... well maybe I do not understand her compassion that she had for me or her experience. Do we know our effect upon or how they live right around us sometimes.   I feel sad bad for not liking her not a bit. And I resent her even more. Some unreasonable wasteful part of me wanted to donate it even after I took it. But I like the stuff. Then I tried to give it away. Of course they not allowed to. But I even hate liking this summer lotion. expensive products.   Yes and resent that she goes away to live a life and mine stops here. I think that way. jealous of visitors who come in with new purses. One lady at bingo heard me say I have not shopped for a purse in ages. She said I wonder what that would be like. I said not like before. We shared a wistful sigh. yes her bag looked worn. Truth is I bought one online last year. Not the same. not that mother daughter powerlunch or dinner because we did not have dates. Finding a purse was a high for me. I would use it feeling euphoric for a long long time still proud of it. For some shoes. not me. A bit. Purses marked my life. Tell me a time and I know what purse. My friend never used one. She feels nothing about such things.   Ok so Mama said never look gift horse in the mouth...but what about the gift giver

SassyBetsy

SassyBetsy

 

Setting Aside The Doctors Orders

I am swelling so badly, my edema is not pitting but walking is painful,like on rocks on the bottom of my foot. I cried. I wear a circaid juxta support stocking thing,but it still swells. The cardiologist changed my diuretics from lasix to bumex and spironolactone.  And so then she said nothing can help me because too much diuretics can hurt kidneys. Yes I elevate,but sometimes I sit with legs down because I get up and down. Then I lie down elevating, which puts my leg to sleep,foot tingling. Only 1 foot,the one on painful leg is numb.   So, the doc here at the home put me back on lasix,and I will not be taking what the cardiologist prescribed. Ok, so I was on lasix for a while and wanted something better,and look now I need the lasix again. I will report this to my primary again. See what she says,but the doc here sees the problem and just set aside the doctors order. How can I put my trust in any of this.   I worry not following the advice of a cardiologist. But according to her no cardiac problem now. *Plus I am on a no salt diet right? but I am taking processed ham off the chef salad, ask for a fruit plate when the food served is ham or something salty like sausages.   Sigh. So back to Drawing board.

SassyBetsy

SassyBetsy

 

Is Anybody Listening??

I went to my cardiologist today because I called last week telling them since she cut my diuretic, I am swelling,so then when doc got message,she had her nurse tell me on Wed to get lab work Thurs and come to clinic on Friday at 8:40 for evaluation. So I luckily could have my blood drawn at the home, but unfortunately they never sent the results to the doctor so during the exam they did... But the story starts with this:   BUT when I arrived to the office I was so tired and had leg pain so I sat down in waiting area and asked if I was at the correct place because the nurse had given my transportation the wrong address...another story....and the office clerk came over to me saying no they did not find any appointment  for me...   SO I told the story of being called and instructed to come in for this 8:40 appointment, so please try and find the nurse or the doctor....
....then the office clerk said, well if you will let me finish, you do have an appointment in August.
...I said did you hear what I said about the nurse calling me telling me to
 arrive today at 8:40?? I said wait I will write it down. And I did. I said please take this and help me. She said There is no appointment today.And she told me I could keep the paper I wrote out.   When I am stressed out, I breathe shallow, my chest hurts, I get dizzy, there is a rolling vision and sensation, I find it impossible to choose the right way to get my thoughts across, I feel physically ill. No, this is not a panic attack. This is a stroke attack. All my deficits become more pronounced. This is not a mental state you can avoid,this is another stroke by product. And once here, now I have the crisis that stressed me PLUS my stroke stuff. And then it is all about coping. So do not think I am weak getting all flustered. I am handling war of the worlds in 3D one handed blindfold. But it hurts, I start to cry and I hate the universe for all of it.

So I felt devastated that she was not hearing that this appt was made 2 days earlier by a nurse there. I mean, can someone go check with someone? Can they believe me. Can they listen to me saying that I did not just decide to come see the doctor. But that leaves the rest even more interesting If I was an insane or utterly confused person because what I did was instinctual. I called over to the front desk and asked if the other two women could help me, and I explained. So one came over who asked me to lower my voice. oh yeah, strokeything for me, I do not even realize how loud I am, or maybe I had to be heard when she was over 6 feet away in a huge echoey room with other front desks for procedures. But she did not stay to talk, she just said she would look into it. I was satisfied to wait until they discovered the doctor requested my presence.

 But then she announced Nope No Appointment. Ok, I think we established the computer did not show my appointment. I said,Please ask. But then a familiar nurse came out calling for a patient. I asked her if she had called me,isnt she my cardio's nurse? She said sorry we rotate.I do not know.
 I could not even thank her because the second clerk waved the nurse away sayong they were handling it and telling me to not disrupt the office. Excuse me, that nurse took me in last time,processed my vitals,etc...and I can tell you about her family...and I assumed the doctors had particular nurses...but it was my plea, an alert that I was out here needing help. I told the clerks they were being rude and asked why they ignored me, and it was 8:50 and I wanted the doctor to know I was there.
And a third clerk said loudly, when can I get in on this?? The other one said not to, but she lit into me calling me rude for calling the staff rude. ok now, nothing like a crowd to egg you on, and the third clerk  was a crowd of 1 who was an instigator.Not to jump in and help talk to someone, but to tell me off, insist I have no appointment.

So frustrated and tearing up, I called the phone number to the cardiologist and explained I was there as instructed by the doctor's nurse,but the clerks said I did not have an appointment, and it was past my appointment and pleaded for help. She said you have reached the call center, but let me try and help you by calling someone. I waited, hearing one of the clerks mumble that I was on the phone right now, and I was expecting one of the clerks to spoil it...   but then a nurse came up talked to the clerk,looked at computer...and I sat demure, honestly desperate to see the doc....and a smiling  nurse,an office supervisor came to me telling me a miscommunication had occurred....ya think...and there was no problem with me being seen,in fact someone was coming to get me. I silently absorbed the I told you so moment and said a simple thank you, then called my medical office's "we listen"line and Talked until I was called to walk in the back, then asked to be allowed to finish that call before they did the vital thing. The woman on the other end is suppose to be compassionate and settle you down, but I said I was making a complaint and I did not want someone to say nice things to me. I wanted to hear that an action was taken,people talked to because I am a disabled person who was treated horribly. And I said all I wanted was someone to come talk to me and believe me, and I wrote that and the clerk never took the paper telling me oh you hang on to that.
The person on complaint line said she will follow up. Do I care?Do I believe they actually do anything. Is that just to make patients believe someone listens.       But most important, I saw my cardiologist, no word mentioned about that stuff, she examined me,reviewed labs, and said heart failure was not reason for my swelling,and no I cannot increase diuretics due to kidney caution.  I got good news. But I need a sleep study next.   Maybe they blew me off....
but I live in a home,use transportation....a fine oiled machine is that process of getting me off to a doc appointment.

But what if I had been there on the wrong day..

and confused,worried. And then the clerk sighs,rolls her eyes and says can I finish.
Is that what you say. not me. I would say oh no, lets see,lets ask, and if you need to come back,do you have transportation home now,can I get you some water because I know this can be stessful.
Nah,that is too humane for this TrumpeterTwitter Era of those workers there for a break not a career.

oh so I went on a rant.
pour me a drink.

SassyBetsy

SassyBetsy

 

Is Anybody Listening??

I went to my cardiologist today because I called last week telling them since she cut my diuretic, I am swelling,so then when doc got message,she had her nurse tell me on Wed to get lab work Thurs and come to clinic on Friday at 8:40 for evaluation. So I luckily could have my blood drawn at the home, but unfortunately they never sent the results to the doctor so during the exam they did... But the story starts with this:   BUT when I arrived to the office I was so tired and had leg pain so I sat down in waiting area and asked if I was at the correct place because the nurse had given my transportation the wrong address...another story....and the office clerk came over to me saying no they did not find any appointment  for me...   SO I told the story of being called and instructed to come in for this 8:40 appointment, so please try and find the nurse or the doctor....
....then the office clerk said, well if you will let me finish, you do have an appointment in August.
...I said did you hear what I said about the nurse calling me telling me to
 arrive today at 8:40?? I said wait I will write it down. And I did. I said please take this and help me. She said There is no appointment today.And she told me I could keep the paper I wrote out.   When I am stressed out, I breathe shallow, my chest hurts, I get dizzy, there is a rolling vision and sensation, I find it impossible to choose the right way to get my thoughts across, I feel physically ill. No, this is not a panic attack. This is a stroke attack. All my deficits become more pronounced. This is not a mental state you can avoid,this is another stroke by product. And once here, now I have the crisis that stressed me PLUS my stroke stuff. And then it is all about coping. So do not think I am weak getting all flustered. I am handling war of the worlds in 3D one handed blindfold. But it hurts, I start to cry and I hate the universe for all of it.

So I felt devastated that she was not hearing that this appt was made 2 days earlier by a nurse there. I mean, can someone go check with someone? Can they believe me. Can they listen to me saying that I did not just decide to come see the doctor. But that leaves the rest even more interesting If I was an insane or utterly confused person because what I did was instinctual. I called over to the front desk and asked if the other two women could help me, and I explained. So one came over who asked me to lower my voice. oh yeah, strokeything for me, I do not even realize how loud I am, or maybe I had to be heard when she was over 6 feet away in a huge echoey room with other front desks for procedures. But she did not stay to talk, she just said she would look into it. I was satisfied to wait until they discovered the doctor requested my presence.

 But then she announced Nope No Appointment. Ok, I think we established the computer did not show my appointment. I said,Please ask. But then a familiar nurse came out calling for a patient. I asked her if she had called me,isnt she my cardio's nurse? She said sorry we rotate.I do not know.
 I could not even thank her because the second clerk waved the nurse away sayong they were handling it and telling me to not disrupt the office. Excuse me, that nurse took me in last time,processed my vitals,etc...and I can tell you about her family...and I assumed the doctors had particular nurses...but it was my plea, an alert that I was out here needing help. I told the clerks they were being rude and asked why they ignored me, and it was 8:50 and I wanted the doctor to know I was there.
And a third clerk said loudly, when can I get in on this?? The other one said not to, but she lit into me calling me rude for calling the staff rude. ok now, nothing like a crowd to egg you on, and the third clerk  was a crowd of 1 who was an instigator.Not to jump in and help talk to someone, but to tell me off, insist I have no appointment.

So frustrated and tearing up, I called the phone number to the cardiologist and explained I was there as instructed by the doctor's nurse,but the clerks said I did not have an appointment, and it was past my appointment and pleaded for help. She said you have reached the call center, but let me try and help you by calling someone. I waited, hearing one of the clerks mumble that I was on the phone right now, and I was expecting one of the clerks to spoil it...   but then a nurse came up talked to the clerk,looked at computer...and I sat demure, honestly desperate to see the doc....and a smiling  nurse,an office supervisor came to me telling me a miscommunication had occurred....ya think...and there was no problem with me being seen,in fact someone was coming to get me. I silently absorbed the I told you so moment and said a simple thank you, then called my medical office's "we listen"line and Talked until I was called to walk in the back, then asked to be allowed to finish that call before they did the vital thing. The woman on the other end is suppose to be compassionate and settle you down, but I said I was making a complaint and I did not want someone to say nice things to me. I wanted to hear that an action was taken,people talked to because I am a disabled person who was treated horribly. And I said all I wanted was someone to come talk to me and believe me, and I wrote that and the clerk never took the paper telling me oh you hang on to that.
The person on complaint line said she will follow up. Do I care?Do I believe they actually do anything. Is that just to make patients believe someone listens.       But most important, I saw my cardiologist, no word mentioned about that stuff, she examined me,reviewed labs, and said heart failure was not reason for my swelling,and no I cannot increase diuretics due to kidney caution.  I got good news. But I need a sleep study next.   Maybe they blew me off....
but I live in a home,use transportation....a fine oiled machine is that process of getting me off to a doc appointment.

But what if I had been there on the wrong day..

and confused,worried. And then the clerk sighs,rolls her eyes and says can I finish.
Is that what you say. not me. I would say oh no, lets see,lets ask, and if you need to come back,do you have transportation home now,can I get you some water because I know this can be stessful.
Nah,that is too humane for this TrumpeterTwitter Era of those workers there for a break not a career.

oh so I went on a rant.
pour me a drink.

SassyBetsy

SassyBetsy

 

On Being Appreciated

Sometimes it is hard to accept compliments,but they feel good, but do you believe them or consider them deserved.  There is a nurse who always always admires my coloring. One time she asked if I colored people,so I put a lady with a peacock up on my wall.  So she looks at my books, tells me that choosing just the right colors is my passion. She says I am an artist.....always saying she is a fan, saying she boasts about me to her family.
she is my age, very nice med nurse who works overnights.  So I gave her the lady picture. She wanted me to dedicate it to her, so I wrote to linda with love from my name. and she said she appreciated it and wanted to frame it. she was...the word is overjoyed. wow.
unexpected. but she said she is a fan. wow.
I appreciate her noticing and enjoying.
In fact, it was honest. that lady was one of my best ones,
reminded me. so best I gave it. what a nice flattering surprise.🤗   I must admit I think coloring is fun therapeutic, but I do not take it seriously, I take it for granted, just a way to pass my useless time, never dreaming in a million years that someone,anyone would want it. It seems embarrassing to show my book).  And I must admit I am tickled pink!🤗   Now I guess this wonderful moment is a soothing healing balm on my soul for a "wronged" thing. The activities director here gave me a beautiful coloring book once, then she invited me into her office and allowed me to go online and choose books for myself and another lady, along with new pencils, sharpeners,erasers. Excitedly I waited for them to arrive. The other lady, said, I'll believe it when I see it. I explained we received activity things here as part of the program. I frequently checked in to see if the gifts arrived, so the director told me to just wait until she notified me. Yup, that day never came. When my son heard of this, he offered to buy our supplies. So the other lady learned that some people do thing for others even when they do not know them, and there is such thing as Free. When she passed, my son reminded me that I had brought some joy into her final days.I think he did that for both of us. I have one of her pictures on my wall. The one she was so proud of.  So, now nearly 2 years later, after seeing new people get coloring supplies, I went to her and asked for one of the books from my favorite author and a set of new pencils. She popped out her tablet and generously offered to buy me 2 books. So the very next day she brought me a smaller set of pencils,but still nice that she found when she went to Costco to buy supplies for a party that day. She assured me that the coloring books would be delivered overnight. That was two months ago.  I have seen and talked to her since,but I never ask about the books. I try not to choke when I hear her say,I am good for my word.   Thankfully I do not rely on her for my art supplies. I buy things and I receive gift boxes with books and all kinds of pens, most of them I give away since I prefer pencils and pass the word. I tend to use up my favorite colors from multiple sets.   Oh well now this is not being appreciated.she has never looked at my work,books or commented on my wall art. She is nice,friendly, they use her for things, I like her But, she is not my fan. I cannot believe she would do this to me twice....  

SassyBetsy

SassyBetsy

 

Brokenhearted

A couple was in snf here and the husband died. They both could not have found the parking lot between them, they were both in chairs,but he walked wandered. I saw her having melt downs,I even tried to help her do bingo once but as they said she did not stay to play. But she hung out in a chair with her pillow, which for sanitary reasons are not allowed in common areas.  So one day I went to play bingo, and she had her head on bingo table with pillow. I sat next to my friend and asked if they were going to move her as usual...but a man stroked her head saying lie down baby and the woman across the way held her hand looking at me like I was a traitor and shouted at me,"Don't you have any relations?" and it took me a sec to see she meant relatives type relations...and I said of course I do........And then they said her husband died....they married happily 100 years.....and I wondered who put them here 6 months ago.....but  anyway the woman woke up and happily ate the candy from all those who suffered on her behalf, she was happy in an ignorant state,probably sedated. I took my winnings home between hiss and boos. So She goes up and down corridor, looking for away outside as always.     And I was upset that woman said that to me,as if I was heartless or clueless. I did not know her husband died, no one explained or announced and I wanted the seat by my friend.  I moved over.    But I got nightmares about all the loss,all the heartache, and just because I will not parade visitors around this smelly old ugly dirty place with junk furniture...well I have had love and people before.    I think.  I got angry at stroke. I should be visiting my relatives in a place like this, no wait, they all died fast, did not linger growing old, but I was sandwiched, cared for mom and kids too, while working.   I was judged for how I lived, criticized for going to school late in life, for marrying young...although those fit didn't they. I raised my kids and they did all they wanted to do for me because they were in early 20s and it would be unthinkable for them to be saddled.   But I am heartbroken every day because my daughter and son fought, then he stopped talking to her, she stopped talking to me. I have not heard for a year how my grandson is.  So on top of loss after loss, I was robbed of being a grandmother. I gag hearing others gush on about grandkids.  Son says I was a great mother, but I ruined my daughters life by the stroke that put her out of our home and lifestyle. She basically ran off with a man who was married,had a sick baby, and moved out of state and out of my life.   And can I relate to heartbreak. Well those at the table talked about when their spouses died after being married for longer than I have been alive on this Earth. But pain is pain .....and maybe those are nice tea party stories with non of the ugliness this life knows like divorces,illnesses, estrangements,and I would not complain if I was in here 40 years from now having lived a charmed life.   I have a good child,but I pin for the missing one, dying a thousand thousand deaths, like my whole life was for my kids and how can one see it was good and the other have grievances jealousy...   I am supposed to be planning weddings, babysitting grandkids like my friends I cannot bear to communicate with. I survived to see my life,career,home,and relationships fall apart,cease, and I take drugs that cannot ease my physical or emotional pain.   and I wonder why I survived when my kids go to the other mothers where it is life because I live in death,and like the others here I scream when is it my turn, but Gods silence says no quite yet......   how much more will I suffer. yes I am ungrateful because one fun day in the normal world is not enough,    And the old woman asked if I had relations as if I could never know pain. And I ask if anyone besides Job,and I dont mean Jobs, has suffered...and I do not know if I have held my cursing in the pain like he did.forgive me Lord.   My pain is inside and out. Supposedly this is why venting can bring each other down. grief is contagios.   But I will sleep this off, and cope to live another day and vice versa.    

SassyBetsy

SassyBetsy

 

Sitting at Hair Salon

Well, I did it!!! I got my new highlights...I am blondie!!! I feel like myself. I feel pretty!  My hair has thinned so I wondered what this would end in... But I am getting so many compliments.     I get short of breath, I walked too far outside on the way to luncheon at a coastal restaurant. I pigged out. So, I came back and slept through dinner. I took selfies by the coast to send friend who sent me money to get my new tank tops. I have a blue striped scarf that has one orange stripe...this is my new signature.    My nurse tonight was saying this is perfect look for me ..and she said It Is,        All About The Hair.        ok maybe a big chunk is.   Sitting in the beauty shop was hard, the lighting, the checkered floor, and I got through it, just to be normal....get hair style I want. The hairdresser at the home...ah no. Today, I feel wonderful.   But it was hard,and people looking just see oh look she can go get her hair...then complain...diminishes ..like a person living with pain does not care about appearance...and I had not done anything.....just weird double edge. folks here ...shoot that supervisor came by at said oh you not in bed...i smiled,said did/ you come to see my hair, joking. I slept 7 hours. now my sleep pattern is messed up. But...good hair😊🎶🎑🎊🌻🕊   Also wearing my bracelet for Memorial Day..myred,white,blue,flag,anchor,boat,    

SassyBetsy

SassyBetsy

 

My sinus Infection.

I am ill. recovering. I will get the antibiotics tomorrow. I saw my own doc at urgent care, I was not taken seriously by this home, not ill according to them....but news flash...my pain meds fight fever just like acetaminophen.   And my sinuses are clogged, sometimes nose is clear Hot cocoa,hot tea, apple juice. Hot helps, and sleep. Will I feel good for memorial day? Please.  

SassyBetsy

SassyBetsy

 

The Princess and The Pea

Today I went for a shoe fitting, and I needed the insole adjustments made too because they were not done properly.  I walked in telling  the guy that I felt like I walking on a pebble in my shoe but it was only the insert and maybe I was like the princess and the pea. So he took out in insole and he found a tiny thing in the seam.  I said Seriously?? And he said well you called it!  Oh we laughed, but then he took the insert back to make it thinner so my shoe will be more comfortable.   I love my shoes now and they fit with plenty of room now that the insert has been made thinner.  And the best part is that I get the shoes and inserts free.  And I found out that if you are VA then you get two per year. wowee. But  I am happy with my new shoes now and no one will be saying these are not the right size to me or else this princess is going to thow a pea.   And then when I got back, there was my admirer waiting for me by my room. He was  He is blind and so the housekeepers take him to my room.  There he was asking the activities woman if he could have two mini candybars, one for himself and one for me.  And suprisingly she gave them to him, and I hesitated before I chose on from his open hand. It was time for me to get ready to eat lunch.  Well Iam ready for a nap and a movie.   I am going to hold onto my nice day. 

SassyBetsy

SassyBetsy

 

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?

SassyBetsy

SassyBetsy

 

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.

SassyBetsy

SassyBetsy

 

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

SassyBetsy

SassyBetsy

 

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.

SassyBetsy

SassyBetsy

 

My spinal stimulator trial was denied

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 

SassyBetsy

SassyBetsy

 

Invisible, and Ice cream, and other I's

Dear Blog, Yesterday was Ice cream social day, so they brought waffle cones and your choice of 3 kinds of ice cream. The rocky road order never came so we were short. I picked butter pecan and coffee. I was so appreciative because I was coming off a fast that ended at lunchtime when I got back from a stress test at the hospital. And I wished outloud to the activity director who served the waffle cone that whipped topping would make it perfect. The director was inspired and said she would buy the waffle bowls instead of cones and bring whipped cream with a cherry on top next time!! I wish it was ice cream day more than once a month, but I bit my lip.löl   I have been radio active, well, I went through a chemical stress test. I was exhausted functioning on few hours of sleep, so I did not catch it that I was dropped off at the wrong building. So I tried to walk over, got half way, then I was calling for help, and a passerby also walking near me paused asking how can I help, which got the attention of security when a few people paused to look at me. A blessed hospital volunteer came with a wheelchair. I was thankful the Calvary arrived but I was ashamed I was short of breath, dizzy,and not steady on my feet. I am good for short walks only. And anxiety will increase the rest of symptoms. Another trigger is being outside. They kept asking if someone was with me. This is unusual I said, and cursed myself for not paying attention to my driver's mistake.   I doze off in the scanner for 15 minutes, grateful that an I V light made getting an IV quick and painless on my usually hard stick rolling veins that look closer than they appear. I have horror stories about that,.but not today. Getting up on the scanner was hard because I was reeling in that room, bright lights,which they dimmed for me,and I still had symptoms,lack of sleep, I had involuntary hand shake so they said hold still, but my body would do a jerk. I peeed a little from the ordeal of climbing on the scanner. I had to ask for step stool, I cannot climb, it feels like I am really high off ground.   Then I walked to another room for the doc to administer the the dye stuff. Weird feeling a minute just like they warned, but I was able to walk to cafe to get ice for the coke I brought. But when I walked out, the room was spinning, my leg was cutting out, and I had chest pains radiating shoulder pains,and a feeling of panic, as I cried out oh I need help, can someone help me. I was exiting the cafe at lunch time to the main corridor of the hospital, so people looked at me, and heard me, and ignored me. I presented them a problem they never thought about before, and in a culture where people walk and talk on some device, I was just ordinary sight. So I sat quickly, was able to pour the caffeine drink they said was antidote into my sipper, and I called out for someone to help me because my chest pain burned and every breath was stuck inside. Did they think I needed help pouring the coke? So then I waved and tried to make eye contact.  People look off into space. Even people sitting and standing around me did not notice a grown woman holding her sipper and her chest, teary eyed saying can someone please help me. WTI? Another white coat was passing so I gave it my all, and after I explained he said do you want to go to the ER??   So after I sent him to look for the nuclear med stress test room and staff, he came back saying he had wandered around,even asked about, and he could not locate anyone. I thanked him and he said what is your plan, and when I said when the 45 min lunch eating time for me is done and I do not show up, then perhaps they will return to get me. He wisely determined that was not a very good plan he gently advised. I complained how I was keeping him from the food in his hand, had sent him walking the halls and I hated to be more of a bother, but inside the fear and pain was evident to him even while I thanked him. He walked down the hall to info desk, and eventually he brougt the familiar nurse and technician with a wheelchair.  God bless that man named Kit, that is all I got when looking at his badge. He wore a white coat, so was he a doc or another staff in white? He is a good samaritan that at least came over and listened and would not quit until he got me help. You know, I feel safe going to the hospiital, but being invisible was unexpected. BUT then the words are you here with someone crush me, and am THAT woman. But I am not that woman, only this time.again. And so I am rescued. I climb the scanner again. I did not pee this time. I dozed, dreaming in seconds, how long was I there, no even aware that my breathing was painlessly normal, and by the time I was home watching my soaps, my shoulder hardly ached.   Please, not a real heart attack. They put me back in because they worried the heart was causing the pain. They did not give me anything, but they said to drink caffeine to help as antidote. Good to remember, if radiation is involved, keep a thermos handy. They never explained and I never asked why I felt all that pain and terror like I was really having a heart attack in public. I missed sitting in that lovely cafe.    The ordeal takes a toll on me. Symptoms are amplified. Hands jerk, eyes bouncy even closed. I figure the cardiologist will try to talk to me, because others talk loud and simply as if ...   I know something is wrong I wonder, honestly wonder if I will fight to heal my heart with any surgery or    or something like another pill or maybe know I have a train ticket waiting for a journey to a wonderful place. a pain free zone. maybe this is my escape. But I feel there is more to do, I want to live the life taken away already, a life that no longer exists, opportunities and time passed. I look in the mirror and marvel my hair grew again. Years passed and I thought what? that one day I would not still be dealing ....yet life,even a corner of it, just to keep being,if not doing,just being me,no matter...but I cannot mask dissappointment, I curse this blueprint and never signed off on this plan,but I will do His will.    And today, I turn my mind to doing a manicure tomorrow after I rest up, and what I will wear to visit with son Sunday. We have planned a day trip to drive to a restaurant. My stamina has dwindled. Showering is a day's event because It wears me out.    Speaking of nails,what is this ridges thing and splitting? my dermatologist ordered Biotin. I used to take it and she wants me to take it again. yep if my nails look good, then all is well.  One woman wears press on nails. I never tried those. Hmmmmm....      

SassyBetsy

SassyBetsy

 

Wow people record their lives on the phone

I took pictures,made albums, used cam corder for events, but I wonder what life would be like if I posted life to the public. And who watches strangers, or even friends when they record stuff. I watched a you tube with adorable kid. ok sweet fummy, but then there were other videos, going on for years, about the kid,the family, and suddenly half an hour later, I had watched,birth, vacations, and this child growing over the years,and I felt like it was some movie,and hey I cant wait for the next one, and whatade looking through this key hole so entertaining. And it felt weird that this child took selfies and talked to camera.    I interacted with my kids, sang,drove,without being on camera all the time. I worried about perverts. They were in plays, public dance shows,so that was public, but not people seeing us in pajamas cooking breakfast.This is weird world to me. Live streaming, blog influencers, what??? It is gossip tv gone wild. Do I care, do I have time? What does it do to us,to children,   this is a strange world I will be leaving.    

SassyBetsy

SassyBetsy

 

This blog is for you Sue

My dearest blogger, I thank the stars that I may use words to reach out to others for support because otherwise I would be suffering in silence without the companionship of peers, brothers and sisters who have survived stroke, learned much,and can comfort me only by understanding. How blessed I am that someone out there cares enough to send a beacon out in the universe and then put a guide to read my innermost thoughts,my progress through my years of survival. And no matter what I write, venting dumb stuff, maybe confessions to myself, there is encouragement and acceptance with gentle words and I never feel alone. Thankfully, anything I write is given value by some one reading even when it is blabbering. Thank you for giving me a place to make sure others learn about what happened to me.....  and I see other bloggers who validate similar experiences.. And healing from ranting, from gratefulness, from info and friendship. No judging,no fading away invisible.   It is hard to pour out my soul It is hard to keep it bottled up I thank the caregiver role models who show me  reality  I thank all stroke survivors who bravely share stories, accounts of their life, and sharehope,pain,love. You show me what to do to survive, how to go on. Blogging let me reveal what I am now, a stroke survivor, someone terrified and brave, because I can write out my life,me,and someone will see me, and it is ok. I was caged before I found support.   Thank you Sue, for continuing to be a super caregiver.

SassyBetsy

SassyBetsy

 

Only my body is broken

I am still in shock that my body is changed. I know it is true but my mind, heart,and soul is alive,alive,and growing. I am surprised again, oh I cannot do this or that, and I wonder why is my mind so stubbornly hanging on to the idea I can wake,pop up out of bed quickly, and run around the room, dress, tidy, and go. When every movement hurts, needs to be calculated, wait for pills to kick in, take careful steps, ask for help. Welcome the new me every day. Congratulate myself. I am up for the task.

SassyBetsy

SassyBetsy

 

New Adventures

I went to Cardiologist yesterday. First time the echocardiogram showed a problem. But my body has been swollen, still swelling, and I have a rash on my left good leg from swelling irritation, according to my dermatologist. So, now I am waiting to be scheduled for sleep study to check for sleep apnea and an appointment to have a stress test at nuclear medicine lab. My leg pain will make doing real physical exertion impossible. I often get short of breath, especially when upset, and all this time I thought it was panicking thing. The pressure on one side of my heart is high. Don't you just love it when they say it could be from many things, and we now play rule out.  One thing is the gabba, lyrica caused swelling, but I need it so no one says stop it. My feet are numb from swelling. At last, after my squealing, they changed diuretics to for new drug trial.   I will need to get labs, which is not fun with my porcelain arms without veins. They get an ultrasound machine,spot one, three inches deep, and it rolled away, and they guy wants to jab around for it. My scream was heard in Nepal. They now hate me every time I go for my spinal. However, the lab folks could find my vein in a power outage blindfolded with only thumbs.   This is serious stuff, and scary. I felt like I was in Principal's office, while waiting then listening to cardio doc. She wanted me on the exam table, and here we go.....makes me wonder if they read the whole chart or just the referral email. Sorry, but stepping up on things like that little tray and climbing up on to this mattress that does not even have any handles, not one safety bar. And no sorry but I do not think holding on to your thin wobbly arm will make me feel safer. No I would rather not try, because my visualizations show me either over shooting and falling or having vertigo once I am successfully up there and falling off, or last not least, how am I going to get down using that pullout tin tray.  So I was examined in a chair.  But hey, not my problem because some offices there have exam tables I can walk over to and sit, keeping my feet on the ground.    I do not want to do this or have this, says the woman who had a stroke. I want health restored. I want it the old fashioned way with a miracle.   Yeah, better early detection. But when they come over asking me to sign off on risks, I will hear myself telling me, lets wait and see, or my favorite...lets pretend it is positive,skip the test,treat. Ok just one morning right.And the other one I will sleep through.   Pleading for prayers.        

SassyBetsy

SassyBetsy

 

Look where I am at

Next month is my survival anniversary number 4! I wonder why I survived. As you know, I have had pain every day since the stroke. A variety of numbers on the pain scale, a variety of descriptor words, a variety of coping,treatments,including topical cream with gabbapentin in it, spinal stuff, biofeedback, opiates, therapy, relaxation, spiritual belief,and of course last but not least ice cream. I was advised to think of this as my purgatory. Is this a punishment? How can I believe that, it does not fit my beliefs.   On any anniversary, I take stock, think about what changes, how far have I come, how does reality meet expectations, what do I celebrate? What do I strive for, do I still hope? That is too much to think about, I simply continue ahead. I bless my doctors now that help me. I know it is in God's hands.   I talk to my best friend about it all. girl talk. heart open wide. one day, I was very positive and grateful , looking at it all with a hopeful spin, and my bestie dealt me a blow that floored me. She said, and I quote, "who would want to be you,look at where you live, you can't even take care of yourself."   Looking at that quote chars my soul.   I burst into tears, no it was more like a primal sob that resounded through me into the universe.   It is all true.  Honestly even I do not want to be me. But who I am makes a difference even now I believe.    I have deficits, but I have abilities. I miss the original me, of course. I hide now, ashamed of what has become of me. I rejoice in recovery, but know I am now  always battling to survive. I have health problems that hound me.    I packed up all I owned and gave away everything before going into long term care. It was heart breaking. But it helped me survive in my circumstances. I felt betrayed by life itself. No one should have to pack up a whole life, as if I was deseased, except I was doing the work of eliminating all that was my life. But yes, I am no longer able to support, work, take care of myself.  God spared my cognition. I wondered why. But it left me as me. Thank you. I am not alone in shouting inside in a rage of pity party. I read stories here and know I got off easy.   But I know the truth. I celebrate the positive. but to the others in my old life, yet untouched, it looks like nothing to celebrate. While others have miracles, maybe better off than before their injury in health, well that is not me.But I am not a worthless Being now. I am still a Person. I still Cry, still love, still live. I lost my life. I lost people,places,and things. But I am strong in my faith that says I am now blessed,reborn.   I do not know if blocking contact with this long friendship is over reacting as I do since stroke. It seems no one stops to think how telling me what is true, is also not true. And my physical pain is nothing compared to my heartache.    I am avoided, but I hid too because awkward interactions, not belonging any more, isolated in a crowd, stranger to my own family, alone in an institution but granted compassion from strangers sometimes.   They send a normal person to engage in therapeutic talk. How can anyone normal possibly know. I think of families that lost homes in fire. They say at least we have our health, each other. And my friends with illness or death that struck, say at least they could be home.  I am grateful for living where I am supposed to be now,for the help I recieve, for the lives I meet, for those who comfort me,try to keep me comfortable and alive.   I decided to give my body to science. I enrolled in the body donation program at my hospital. I like what they do for science,for people, and so I figure I can contribute rather than wasting the chance when there is a need for donors. I was going to donate organs, but illness changed me, so I changed how I will give myself away. I accept that someday I will die, which gives me the power,will,joy to live,be alive fully.   my days may seem futile, but they are my days. I rest, enjoy hobby, talking to people. I wonder.   strokeland is not on the map. our culture is strange,unique,variety of ways, unknown even to those who study it.  Some who study it, eventually live it,nd can speak to us,help us understand a new planet.   I still am horrified at it all, and usually I spare others from speaking of unpleasantries. Yet others will come this way and need a guide,a role model, a path. Someone else may be a me. I know I have used this site to follow others who have lived any form of this.   I am sick of feeling ashamed of pain, of disability, of unlucky. The worst is when they say, you so young, why it happen, if only you had prevented it, .......all thos innocent,ignorant true horrible things.   I am pressured to be silent,to be positive,to never show weak, which is pain.  well, pain is not for the weak. we, who hurt constantly,not chronically, are strong.   But I am me, and sometimes I am not loving this version, but it is not a version, it is me. And I am incredibly proud of me. And I know I am loved and waited for.              

SassyBetsy

SassyBetsy

 

Dear Blog

Dear Blog,  It has been a while since I wrote anything. I use my phone now for internet stuff since my tablet with keyboard is never charged up. I have held things inside. I was wrestling with myself. I was too tired, or in too much pain to think. And people get tired of hearing it...and I get tired of thinking it.   I am grateful I recovered from that awful flu, which turned sinus infection. It postponed the spinal RFA until I was off antibiotics and all well. 2 months late, I did get it, thank God! But that proves how much it works and helps me.   I am grateful I joined a live stroke support group. It is for both stroke and TBI, only 5 people, but fun. Not anything new, but for me a chance to be around peers. They were shocked I live at long term care, but I am grateful for the help I get.   I advocated loudly for better nursing care and got it, but the ombudsman cautioned me that they can evict, then I just buttoned up. But not for long. I talked to my social worker who said I give constructive criticism. I said, all I want is a nurse who brings meds on time. So, I stopped complaining to them. Lately now if any probs, I call my doctors and ask them to call here. They have straightened out things because they monitor me on the meds. That has worked. Little things are worse when I hurt and I need help. I am grateful.   Do not make fun of my mint green bunny with pink rosary beads, mother of pearl rosary beeds, and evil eye beads around her neck. This is comfort central. I hug it, pray, and sure it helps.  I was months with only drugs that hardly help, and I sat crying,hugging,praying.  Do not shame what you do not understand. My inner child, my painful body, this CPS thing that any biofeedback thing may help.....if I would get to a biofeedback clinic....well my home remedy would be pray, music, because as anyone with this knows, screaming, upset, just increases the pain stuff. Now I must say I have full adult cognitive powers intact. Why are stuffed animals just for kids.....so I bought my adult son a small one for his desk...it is tiny dark blue.   So I am having a blessed year so far. 

SassyBetsy

SassyBetsy

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