Jump to content
  • entries
    245
  • comments
    905
  • views
    41,408

About this blog

My Latest Adventure

Entries in this blog

 

She's like a Rainbow

I am with a roommate like my twin. We watch movies together , talk during a thunder storm the other night, and talk about how I got diagnosed with stroke pain.   I see her problems that are similar to mine,similar to CPS. But she calls it neuropathy. She is not diabetic. I asked how did you get neuropathy and she said after her stroke, but she never heard of stroke pain.   I

SassyBetsy

SassyBetsy

 

Love you forever,like you for always....

This is our book. I read it to both my kids,chanted those lines as long as I remember,meant them with every fiber and will always.   I recall when the kids became the adults caretaking their mother. It seems impossible the anger bitterness hurt that festered to a head.  Truly Once my daughter's pediatrician when she was a teen gave her acne med saying our closeness was evident so she trusted My daughter would confide problems that arose. Well we had typical stuff. My son pulled away to grown into a man. I respected his decisions. I am proud of him. He hid when his marriage failed but I cried for him.  Honestly we were so close as a family.    Then stroke.   Then then then   None of that matters. Forgiveness matters. I wish the kids were close again but he will not talk to his sister so she blames me and no one talks now,years lost. My son said well you can watch grandson grow from afar, I can send you a picture I found online.   I texted the truth to my son. My jealous daughter said I took away her brother so she withheld the baby so I would feel like she did. She was angry that son and I went on roadtrip, it was xmas,she just gave birth,could not go,cmon...... Nothing big..   Nothing small Now we are torn apart Like all those jealous of our closeness before...let them rejoice, we are strangers now.  

SassyBetsy

SassyBetsy

 

Tomorrow and Tomorrow and Tomorrow

I am sad I not hear from my son He not text and say he understands the misunderstanding on my text or explain his emotional outburst I  was not expecting. I hurt and miss him dreadfully. Is he so mad he will cut off paying for my cell phone which not only gives me netflix but also enables me to schedule my medical appointments and transportation. Our phone jacks in room do not work and and I would need to use phone at nurses station. I appreciate he says to me that it is his turn. How sweet. But my children do not owe me. They gave me a gift of love.   My days are like the poem thing tomorrow and tomorrpow and tomorrow and tomorrow.....they blend in, some goodness is my hobby. I just got new books,pencils,Hooray. I have care. I have had pain everyday for 4 years. 1 year was at home, 3.5 here. I have survived and I recall lots of help I gave after my stroke as well as what I took from those who loved me. Yes I feel alone and I would never trade places, would never wish this on my worst nor best friend,I had a beautiful life I was blessed, but yes young I lost my life freedom and I call home this snf which will soon have new administration.   I am happy today. I missed support group for stroke,tbi,bcause it hurts to walk. I did not want to shower, get ready. Pain is exhausting. I stayed in bed this morning.    

SassyBetsy

SassyBetsy

 

Through My Eyes

I was visited by Health Department regsrding a complaint I made againt a nurse for being an abusive bully insulting me and interfering with me getting to urgent care...where they called an ambulance to escort me to the ER and then I was admitted to the hospital.....so now that nurse still cares for me but cannot contact me so someone else brings my meds....... This was a complaint I made last year....so the HD said I got the name wrong...oops well lets recall who told me a wrong name around here.....   So the HD said it cannot be proven. I said I know. HD said well still complain because then if many complain......   OH I just zoned to my happy you cannot follow me here place. ........no one can prove what another does........   Then I admitted I took a picture when the 2 nurses were standing hands on hips in front of me....cannot prove...but to my memory issues it reminds me it was real not a dream...and I have hospital discharge sheet. But who can prove another's bad behavior.... Oh interviewing others? Some code of silence.   So HD asked if I was afraid. I said well this nurse takes care of me but not in my room. She parks her cart outside my door because that is where plug is.......I just do not like the nurses who are on some power trip......that are lvn anyway. But I deal..... it is history     My real problem Is that I got a text from my son who says for the last 4 years I complain I am alone and ........ok I do not recall exactly but the gist is I am wrong,selfish...and my inner voice chimed in...undeserving, ungrateful....you get the train here.   I was stunned. His opinion of me is priceless. I want his love and respect, yes still. How dare he address his mother this way. And I thought all was well. Ok he never visits and it has been months since he took me on outing...which was a 2 hr limit store excursion. Yes he has busy life. I want him to use his off time for his social life, not mine, of course.   But I do expect him to be there.for fun times visit,talk,eat. I am grateful for time he makes for me.    Where did this come from? I think it comes from his friend and that mom who hate caring for grandma.   So I am that now? Someone warehoused to die? And I have the nerve to want to be taken into live,society.   Well, lets see..I have never been invited out with any of his friends for some occasion, just like in real life,ones mom is not included. So how do I interfere?I do not. I do not expect much. I text. But most of the time I am misunderstood....that I have said something bad against him or hurtful. But he never calls. He prefers text. Great. But somehow I say one thing that becomes a disaster. He loves me. I hurt him. This situation. He helped, but he young, not expected to be able to do more. But then I read that and think wait, he is 29 now and looking back, I had 2 kids,took care of my mom...... Maybe root is something else. Families have bitter jealousys I do not have time for.   NEWSFLASH here, I have CPS. For the last 4 years. While I have been whining, needing reassurance I am not alone when I really actually am alone, I have had daily Pain,hourly Pain and constant unrelentless pain that actually honestly and in 4 dimensions of reality hurts.   I have endured losses. I do not need that laundry list again.   So if I am a pain in the ass, excuse me but I am not some sweet granny that grew old into an inconvenience and wants a call.   No, am I needy on my only son? Well I am in a SNF for life so how much more can I disappear? Well MY son said to put my phone away until I take a pain pill.   To me that translation is Hurry up and die already you old bore.   Oh and he is upset, still upset I may add, from a statement I made when I got home from hospital,had no filter or emotional control, which no one was expecting and I said something like I wish I had not had them. Now let me tell you about my struggle with infertility,miscarriages,and 2 high risk, one even told to abort but I did Not. SO everyone knew my children were wanted and my ex lost parental rights, so I devoted my life to both....and that could fill a book... ....yes one sentence kills a relationship I have apologized, and we traveled around we spent time....but now I see oh sure he went along,but nothing was forgiven or understood. Did he read ? I feel heartsick. I feel all that but then I feel I survive for myself. No not really It is always about my kids. I go on dreaming for it, that happy ending.   I am not going to the support group meeting tomorrow. I hurt. I should go,want to,but my leg burns,hurts to stand,buckles in pain.   But good news. There is always one piece somewhere. My electrode trial was approved so I will schedule that. I am ready.   And I have new coloring books from my fav author. Plus new set of good pencils. MY HAPPY BIRTHDAY!  I finally got what I never got after I ordered this with activies director. She gave substitutes. Ok nice.But... How did you ask? Well I did a survey and earned $$! I am doin another next week for Amazon gift card. In the meantime I will wait for pain thing to be done.   And being selfish feels good, i finally spent money on myself.  

SassyBetsy

SassyBetsy

CARDS MISSING

I play cards with a 96 yr old WWII vet who exercised women on base. She won a silver medal in diving at olympics. The local papers toot her praise. She is athlete and scholar with phD. She now is hard of hearing and losing sight but she is sharp. She plays cards always. Before meals....she plays Solitaire or plays Rummy with others. She counts cards and knows when one is missing at end od play. She could catch a cheater.  She taught me to play double solitaire. When we see eachother we both smile. And go play. For hours. Until mealtime.   I talk about her often. She is alone.Her husband passed. No children. But friends come visiting. Bring fruit or desserts.   Decks of cards go missing. For years i am here. Samne thing..Where is her cards.   She comes to my room wanting new cards. My purple set is worn out old but goood. I WONDER. And I ask activities to give her cards. Sometimes yes others they say no cannot keep giving herr cards. I get it.   So my friend and son give me cards for her. I even gave her a card box. Gone. Then a drawstring bag with 2 new packs. Her name everywhere. GONE NOW. in a month.  You should see her face. A lost soul. So sad. Misery. And she comes to my room. I give her new cards. One or 2 packs. Ok some get worn out. She tells me. I get it. But the lost ones. We never see others using cards. No one else here is. But i say ok I feed the thieves and then she happy she gets to play.   My son bought another box of cards again at Costco. 12 packs. Ok one year. New cards every month. I showed her a photo and said do not worry. I have cards for us. Her happy smile said it all. Then she pointed at her opponet. Back to the game. She tells me when the deck was missing 2 of hearts. I said save the pack for scraps. Here is new box of cards. I understand. ALL cards count.   Who is stealing cards here. Ok she may toss an old pack. But not all new things and cards. No one cares or knows otr sees evidence   Ok seriously the police went to her room. Her friend reported that her clothes and stuff went missing. She always wears a watch that winds. They replaced it a few times. Frustrated at theft here and lack  Of reverence.  I lock my stuff. Carry tot bags. Laugh but I not lose much. Some yes. But all replaceable   My son promises you will always have cards to play with.   This time i  will keep receipt and write it on a possessions intake. I will give them away if needed but if all gone then someone will replace it.   Ok social worker say if you give or loan to her then no not replace the box of cards. I furious. Injustice. But aI give her a new box. My son says cards are cheap.he will buy more. So a couple of times I play each week as I feel good.   My son bought a new box of 12.he sent a text photo.I showed it around. I never see otherds with cards   A mystery. Buy my son is a saint. When i see him he will give to me. I have 1 pack left of last box. Red and blue are for her. I assure her. Never worry. You will not suffer nor be without. I pray for the thieves.  Even police reports do not protect us.   Ok my cell phone is safe but not our cards.   Dumb. But she is happy playing cards. I get anggry. So I help.    

SassyBetsy

SassyBetsy

 

Being Taken Seriously

111I told my driving company do not send me a lift because I have vertigo. I guess when I topple off when I get dizzy they will take me seriously.   I fall asleep. Whenever. In public. While eating. So after passing out in my bathroom they need to watch over me.   They are saying it is the drugs making me sleepy. Plus I need more rest. SO I climb in bed and nap. But then I am lazy right? Cmon.   I need my pain med on time. Yes I am on SO much. I go a bit batty calling out in pain. They need to wake me. It hurts. So wake me so it not hurt later. I need that. It not make sense. They not take it seriously. Like ok just behave. Be nice. Be good.   I cry. I hurt. I pray. Over and over. Same thing. So tired.

SassyBetsy

SassyBetsy

 

PAM'S PAIN PRECEPTS

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

SassyBetsy

SassyBetsy

 

Connecting to Others

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

SassyBetsy

SassyBetsy

 

Another Blog

I spent 5 days in hospital for cellulitis in my good left leg brought on by lymphedema and other swelling stuff.  They do not have oxymorphone in hospital so I took oxycontin. It did not work as well plus they did not wake me up around the clock for my meds even though the doc told the nurses. I suffered. But I got treatment. Then released to thehome. Only to find they discontinued all meds after 3 day absence. So think this would be easy to get its all back again? They did not order my meds and they ran out. And no one could fix the code the pharmacy needed except my doctor that was MIA. Then all fixed by a traveling nurse who took charge.   So I have to heal. I hurt. I have fluid  now congestive heart failure. I got through it. Healing   Pain management clinic is only for clinic time now.wow. Last time the fellows were so nice but hey things change.    I just ask for help. Sheesh Always CPS. and I try to get rest. I felt alone but then son is busy and ill. I was just me. I feel ill still but I enjoy painfree times. coloring.

SassyBetsy

SassyBetsy

 

Playing Double Solitaire

My son gets me cards regularly to share with another lady who plays solitaire 27/7. She is 93 And hard of hearing. No words needed. When we get together to play we go for 2 full hours until the next meal. She is a serious player. I get distracted chatting with others sometimes. And others come begging to be dealt in a hand of Rumy. That is what they play with her when I am not around....and I have not been in a while....And my son had my tote bag with cards for safe keeping the last couple of weeks while I did procedures.....So TODAY we played cards. There are some strange people here that are pure toxic....3 that are at eachother....like kids.....I never know if they enemies or friends.......and their common bonding is a woman with dementia that they parent..protect...common thing unites a band like that....   and today they were going on about how they did not have any cards to play with...because me and the card shark were doubling down on double solitaire. Oh no cards around here or games of any kind....   So we played on she taught me and I havə a passion for it  I love this game    

SassyBetsy

SassyBetsy

 

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.    
 

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,    
 

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.  
 

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. 
 

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?
 

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.
 

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
 

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.
×