SassyBetsy

Yes. Like it never happened.

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

On Nov 9th I will go in for the Electrode trial. I am tired of pain. Risky but I will bet all on table now. I live in agony in a world that sees only weakness in it not the strength it has taken to live since 2014 in pain. And I need pain pills on time. So the home has policy that pills given in room omly. I got stuck inthe showers and no pain pill given. Policy first. I need freedom.

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

Can I bea crazy cat too without a kitty?

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

It is temporary. While her roomie is treated for mersa. Now i said PLEASE DO NOT expose me to amything before my spinal procedure. The social worker said oh NEVER. No one would tell. Then 2 different cnas told us. So not air born so hopefully not contagious.

Time for a Ball Cinderella!!! Wowee, she had a do list all prepared ahead of time. So are you the Resident Slave, ok yes you are concerned,kind,and even advocating.... And I am so glad you are taking time to rest for yoirself.

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

Deserving. There is the greatest word. Thanks Tracy.

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.

THANK YOU for listening. Really. I am really flabbergasted. I did not jump on it as they say...For once I am innocent. It was a misunderstanding....BUT it touched and triggered and brought out all the times I was NOT. My son'S anger and that I hurt him are killing me. I wish we talked but it would dig a trench. He says for the past 4 years...but it is all my sins of his lifetime. He said this weekend he would come but I doubt it now. It will take a hurricane.

Thank you. It was a text he misumderstood about a subject matter he hates. I should have been wiser and not even brought it up. My best friend bought a new tombstone for her son on the 16th anniversary. He was 16 and died in car crash, he hit a tree,speeding no seatbelt thrown from car. They called her and so he died in her arms. Of course she suffered terribly, still does but healed due to other 3 kids and 2 grandkids. I sent a text to my son saying I would trade places. Ok strokehead. I meant like you say I would take her place in suffering,I love her as a sister,grew up together,but not in same state,I had met her boys but not her daughter who came later and anyway I would rather it be me suffering,ha it usually is, but i think sometimes harder to watch. As in her case she fell apart using drugs,alcohol,but she hada mom, kids,work and found a way back. Sje had lost s brother on car vrash a year after dad died from cancer unexpectedly he went quick after operation for stomach ulcer misdiagnosis. Anyway her son was on her words her troubled one, as families have,and she felt guilt that he was drinking as she had,and she found liquor under his bed. I spent all night literally on phone with her comforting,but she not recall,she was wasted,and she would say you do not know,your kids are home safe. Oh that hurt me. SO Then my son sent me a text saying i had sent him a text wishing he was traded with a dead woman's son who died in her arms Oh and i had texted that my daughter was MIA so I now knew what never again seeing them means...to which he said well she is not dead.and my grandkids picture can be seen somewhere online. And I was wonderimg why he was saying WTbeejeegees Ok sure sometimes I blurt before thinking, and I wish my kids would be close again and daughter close to me and not keep grandkid away because she blamed me for her trouble with brother. There I saved counseling fees...... So I sent him text saying i did not want you traded,It was a saying I would spare my friend and take her place meaning suffering. Is that even clear. I feel like everything is a twitter catastrophy. When I told THE best friend,she got confused thinking i would trade with her my stroke for her life and she said understandable. I at least kept my mouth shut and did not say I woyld not trade my work and loves and travels for her troubles...and honestly said I never wish stroke on anyone. I believe I have never made a real enemy in my life. Oh I have been disliked...differwnt views,jealousies, misunderstanding like my daughter believing she was not the favorite.. Oh wait,the wording on that will haunt me. I am happy for my girl,but son was a joy too. My exes will blab what exes do, deadbeats read from a script,and women can be caddy. I have done what I thought was right all my personal and professional life I have been ruled by eth>love for helping others, but my own children not standing for me is stab.

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.

Yes true Grit! We just walk through that obstacle course like a TV ninja warrior trying not to slip off into the water. What a great think tank on a saturday afternoon. Actually when we started meeting as young moms group and now reunion I realize oh kids grow no matter what we do or not but we do have the power to shape behavior. At least I am conditioned to think so.

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.

Thank you Sue. Being heard is healing. Sue, one month is early. Slowly you will improve or adjust. You survived for a reason. God bless you.

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.

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.

THANKS!!! I need it tatooed..hmmmm....put do not touch on the leg..... but no one looks. They fail to look at me or read any signs. I wonder at how preoccupied people are...into thieir break.their phone. Themselves. But yes Tracy it is necessary to know these things are3 not what I choose but here they are. I wish others would see I havw not designed my life to be this. And be helpful to me. Thank you ladies for kindness. You both inspire me too.

Ruth you are an exceptional woman and you helped facilitate the bounty of Williams life. You were blessed to have each other. I am glad you had enough help. I am profoundly grateful when someone gets to have choices. I hope you enjoy your freedom now. Go fly. As you come and go know that William is by your side still in spirit and it is a tribute to him to go and go live to the fullest now. Life will open to you now and I am thrilled you àre here to share with us your remarkable relationship with a stroke survivor. Thank you. Please be comforted. I know you miss him.

Tracy you are a good perzon or you would not have any self reflection so please see the beautiful soul in your mirror. For me as stroke took my life it took my identity. I worked hard to become and be and do but stroke made me evaporate like I was nuked. This was different from any caregiver role I had done in my life. This is not a loss of power or an inconvenience. This surviving rendered me a shadow or some clone who looked like me but my props that were familiar went missing. But not just a loss of home car job friends but I struggled to identify who am I without those things. I felt truly unwanted and unloveable and on the fringe of human existence. Honestly I still do. I suppose this makes me constantly scream See Me because I want someone to just relate to me. I got lost in watching movies. There are many about some lost soul overcoming and then happy ending. That is easier for me to stomach than listening to some blab about how their physical ailment was like winning the lottery. I clap for their good fortune to have a catastrophe pay off in money or in guilt stricken peoples loyalty. Those are usually the ones without the ability to see the pain in others because for some reason they cannot face their own inner pain. Sometimes as I look at certain people in our group at our hospital....I am ashamed to admit... I honestly wonder if certain people would not have been anything except for the stroke coming along and they struck oil and are milking it for all its worth. They annoy me. Am I the harsh one or do I recognize the dishonest self proclaimed ones from the rest.I am a judge now quickly able to see phonies. Yet realizing they are even more lost than I so I do not expose anyone and just nod smile but do not get in my way. Tracy you have every right to claim your place . Wherever you choose that place to be. You have a right to be treated with respect and dignity. You came to Fathers home as his child an adult but his child needing help. You are not Cinderella. If she needs a bunch of junk or prized possessions or slimy soap to define her then let it be. But do not feel like you owe it to anyone to be their custodian. If it was me I would offer to help her pack it to donate it but otherwise I would have a place like a room to keep up after myself . I would clean up the kitchen. It would make it clean for us all. If it helps your dad to wash or make his bed then I would say Yes. But let her hire people if she wants someone to follow lists and be micromanaging. You are right. YOU are fighting for your life. It is not selfish. YOU must do whatever you need and I am so sorry that you are not supported better. But you are doing great things to take excellent care of yourself. You went through a big loss but emerged. You are the heroin. You are not getting what you want from others so you can take care of yourself. You need you now. But nevertheless I know Tracy as a warm caring very empathetic woman. I think we as woman have a strong nurture instinct and we feel guilt when we feel selfish. But that word is wrong. We must self care. I do things to carve out new identity. But my days are spent coloring. Not much to show for the time I spend just surviving pain. What is the measure of my worth now. I feel warehoused. But I have a purpose when just 1 person loves me. Then that is my purpose.to be loved. I love the book The Little Prince. SUch rich texts. We are not selfish cruel though. We are in many ways starting over with identity development. It makes my head spin. I feel useless but Yet...... I guess it depends on how much of yourself you considers lost different. I guess we would not be on here if we did not care about helping others so we are an empathetic group. Yet we all are seeking support. So what a blessing as we help eachother we are helped. Tracy you are in a one way over there. The next time you hear those words..it is all about you.....think of what you have been doing compared to receiving. And I do not mean shelter in your Fathers home. Yes he is good man for helping his child and he loves you. So he does not want you stressed by this or ashamed. No need for shame. It was not your goal for this. Ok so for overstim around the house all I can say is have a space in your room that is comfy to you to relieve when you are in busy spaces. Clear a pathway and if needed use a walker. My walker lets others know I am not steady so beware. Also it carries my tote bags. I have a 3 wheel so it folds and is light. It helps me look down at it rather than at clutteredness. Bright lights put me in a bad mood That is it.end of story. Dim those lights when I just cannot endure or when possible. I am high maintenance now. No apologies.

THANK YOU !!!!! stroke took all from .me. too Not often do I see another person angry...authentic. I feel better screaming I hate stroke into a pillow and no it is not a waste of energy. We fight back tooth and nail. we share we teach we )isten.

William is fortunate his son is coming. I hope he is clear minded to enjoy that gift. I know a part of you will feel relief when Will passes because this is hard to endure. One can hardly prepare for grief. BUT your strength will somehow be there when you call it like a trusty stallion to help you.

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.