I woke drenched in sweat,dripping in my eye,burning. Sheet soaked,gown soaked. Cold.
I hurt,felt odd,nausea waves,shakey. I felt afraid but familiar now as I pressed the call button. The cna came and I explained why I needed the nurse. She told me the nurse was on break and I was feeling the way I do because I take too many pain pills. I lost my cool and hollered an order to her to go get the nurse and dont stand there telling me ...and Here I stopped myself from cussing...but she had already left the room. Ah yes, I am once again the difficult patient at 2 am. This nurse and I have not gotten on previously she was always late with pain pilll. So now she bolted in the room saying whats wrong? I said I am on new med, but it is probably low blood sugar like I had last night. The nurse said how did I know. I said the nurse checked it. She said who checked it and why. She said you are not diabetic. I said yes I am, and I am insulin dependent. The nurse said to let her check. She came back and checked,and told me it was 70, and she would get me something. I said get me orange juice. The cna did bring it, with their graham crackers and over jellied PBJ. It all tasted gross,hard to get down,but I did it. I still sat wet and cold. I asked for a new gown and got one. I wonder why I have to do things for myself in this place of care.
Next morning I asked day nurse to notify doc because they increased my insulin from home routine and she said doc did not need to be called. Then next night I refused insulin they give me without food. I woke at midnight feeling ok but concerned and asked for nurse to check. I wondered if it would be high since I was not taking the night dose,but I felt like it was low and I was hungry. There was orange juice and the PPJ on my tray when I woke,so I was given the night snack without asking. I wanted a blood check before I ate too. The cna said I already had blood sugar check. I said yes,4 hours ago.get the nurse.
The infamous night nurse I have had dealings with stormed in with meter yapping about how she was not going to be checking my blood sugar every night unless I felt there is a problem,yelled at me to eat,and went on on on when meter read 117, disappeared when I said it was 2 hours earlier than last night low episode and I want doc to have readings.
My roomie witnesses this. Reassures me I Am not crazy one. She says they are lazy here and do not want to walk back to this section of the wing. She says there is racism,but I hope not. I listen to the nurses that argue with me do the same to others. I have my docs outside of this facility. The facility doc said to me that he will work with my docs.
So, my roomie has a son in law who is an
ER doc,and she goes to outside specialists too,like me. I witnesses a nurse here telling roomie that her family called wanting her to see an outside doc and that perhaps this was not the facility for her if she did not want to see the doc here. Nurse said roomie was responsible party,not family,so she had to decide. I saw this bully treatment with my own eyes. They do not hide. Who would I tell? Roomie said she didnt know anything. I know it sounded like she could lose her place here,and she has been here 4 years.
I stated to her that I had outside docs,my primary doc,my specialists, along with the facility doc,and it was coordinated care. I said I did not get the thing about this being the right facility if she just wanted to see her insurance doc for continuing care. I told her to check the rights handbook. Then I shut up because I know her doc in the family will handle it. I just hated to see her stressed out about this when she is already sick.
I see what has been done to me is also done to others,probably has been going on for years,and will go on and on. But for me, I wont be silenced or bullied.
I am reminded of a bumper sticker:
Forever I Walk Amongst The Ignorant.
Today a dementia guy who grabs women and is in a wheelchair came into our room. He doesnt speak english. I know this because he disrupts bingo out in the hall. I yelled for help. Cna came in saying no need to scream bloody murder. Well, I said the man was heading for roomie and she is in wheelchair powerless, and I said these guys are supposed to be supervised. Another example of how things go in this prestigious home in so cal 5 star rehab home. Where I do not get rehab. On my paperwork though there is a laundry list of billable diagnosis codes,so guess they are getting paid for me.
Ok gotta go eat now. Pluss I won bingo snack yay.
Daughter visited. Cant write about it. I love her so much. Son texts. I miss my old life so much. There is no support here. I am going to ask for therapy for support.
I received holy communion today. Quick prayer. But nice to keep in touch with spirituality. Grateful for visitations.
I continue to survive.
I needed yeast infection meds sisters. I had days of IV antibiotics and capsules. I told the nurse first thing in the morning. Then nurse said waiting on pharmacy. For hours and hours. So after dinner I was wtflowersbloominmad.
I called the pharmacy to ask what was going on..like insurance problem...the delivery driver...what?
The pharm informed me they did not have Any rx for it!! So I informed the nurses and they faxed it again they said. The next morning I still did not have any meds. But the nurse brought in some that had been discontinued. I went to the assistant head nurse with my latest med list. She looked up the list and said she would need to look up and verify my meds with my doctors.
Then she showed her real concern and asked if I had called the pharmacy. I said yes and explained why. She said she "asked me not to call the pharmacy." I said, why? I have a right to call when the nurses do not have time to follow up. Her voice raised and she said do you mean to tell me that my nurses are too busy for their patients? Her voice was Loud harsh. I told her I just came in to update my med list. I promised to always check in with the nurse first,like I always do.
I finally got medication.
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.
A few days per week, we play Bingo and sit at the same seats ususally. So we had just finished a game and we were waiting to collect our prizes. The staff was going through the shift change and the talking was loud in the common room next to the nurse's station. But I never mind because the air is coolest in this room and I ususally bring a scarf or wrap for when the air conditioning is too enthusiastic.One of the CNAs said, "I just want to fix her hair!" and she was looking at an Afrian American woman. Her name was made known to me one day in Bingo when everyone was calling her one name but she could say "nuhhuhhhh!" So Igave her pen and paper to see if she could write it. Stroke left her laughing all the time and unable to walk or speak. They said cognitive problems too, But she was able to understand what I said and wrote her name down. I did not see her for quite a while but then I met her husband when Iwent around walking like I do and saying hello on my way. Then there was a day that she came to bingo and a new CNA decided to brush her hair vigorously and viloently are words I use because she held her head and moved as far as she could away and moaned loudly. I sat at my place at a bingo table and I yelled hey stop that to the CNA who told me she knew how to take care of that kind of hair and I needed to mind my own. I spoke to the people at my table saying this is abuse and my friend said well report it and I know by the time bingo breaks up she will have forgotten if she won or if I saw abuse. My African American friend was silent but later said that she should have said something. The other CNAs I called to stop the hairbrushing just went about their business as if I was invisible. And we wonder if never forget is enough to remind us.
Of course I reported it to all the powers that be. But I was told that an adult must report her own abuse even if she cannot talk and that is out of the mouth of the ombudsman who is our protector and voice according to some office that be. Only her husband could report the abuse if he wanted to believe another inmate here that his wife was abused here but I could not be going around accusing staff willy nilly. Well how about a room full of silent witnessness? I do not know much about hair care period but I would know if someone's pet was being tormented. And I know someone would come out and rescue it. Interesting that here in this place the most incapable to speak for themselves and who is here to witness abuse? Will an inservice stop an abuser? Ironically this woman has a husband who is kind and visits weekly and he is as huge as a football player and so are her sons. I wonder how they would react to a video of their mother's new hairdresser. I was a fool to use miy words to call on others silenced. The witness today is the video. But I was already asked not to bring out my phone to take pictures of other residents without their permission. That is funny when previously the activities director asked me to email me the photos of the belly dancer that came for father's day. Residents were in the background of the belly dancer so they are in the pictures. I never emailed any of the pictures. Many of the residents have cell phones. In the future years all residents will have them and then the voiceless will have a chance perhaps.
I know my grandmother would be proud I spoke out just as sure as she would be saddened there is still room for no protection.
Ok so I am in the official 6 months since the stroke zone and I am pleased that I have made it here without another stroke and that I can see progress for real and not just some encouraged wishful thinking. I need that. I can walk across the room holding my travel coffee mug and go from the couch to the kitchen zooming to the keurig for a hot reward for my efforts AND without the walker at all! This is on a good day with lots of pain meds so I can walk on the evil leg (ok the misbehaving leg). Ok this isn't very far but for me it is a walk through the mojave in summer. I couldn't do that before. That is a phrase I live to say! I have just little victories like hey ma no hands at the bathroom sink, which makes fixing hair at a whole new level.
I am not waiting til the new year rings in to make the resolutions I need to make. I am struggling with many bad habits that want to return but I am focusing on the new life I have now and I want to make it the best I can because I know now that this ticket is time limited isn't it. I resolve to be kindest to myself most of all and not be stressed out worrying if I inconvenience anyone because I had my time of giving and giving and what does it hurt to be selfish right now when I need it right? No one else around me knows what it is like to be a prisoner in a body that can't just go and do whenever when I want to get out of the house so I don't have sympathy for them when they protest that I am too spontaneous. Who says I am the one needing to change? Perhaps an unplanned trip on a minute's notice is good for their soul as well as mine so I resolve to keep bugging everyone to take me out for a diet soda and a walk. I also resolve to keep speaking up when I want this or that from the doc or the therapist or anyone in the medical community because I believe I too have expertise in this even if it is a little bit and I need my voice to be heard because just that is a healing element in my life. I resolve to cry when I need to and laugh as much as I can because a cry washes it away and a laugh keeps it away. I also resolve to try and not keep worrying about what is going to get better or not and just enjoy this moment in time as much as possible because less stress is the best medicine for me anyhow.
I resolve to do the things I always wanted and was always too timid to do like this new haircut that is the shortest haircut I have ever had in my life sorta twenties style kind I saw on a show and decided to get it. I remind myself of my grandma who put those clips in at night to get a wave in LOL only I haven't got the wave clips yet. Plus I refuse to go grey just yet so I did a dramatic color change which I absolutely love. I also kinda like how no one recognizes me at first LOL and this new controlled change in my life is just what my soul needed and hopefully a good make over for the holidays will be just what my new years resolution list needs to get it going. I need some confidence back because I am literally knocked off my feet just now and I really don't need to be just like I used to be, i need to be better. I need to be a better person, I resolve to try and be a better person and with all that goes with that because I want to be more patient, more adventurous and confident, more intuitive and insightful, more able to negotiate, and more content in each moment no matter what is happening. I want to chanel John Luke Picard just with some great hair though. I want to be calm and say things like "make it so" in my life LOL. I resolve to at least try.
They asked me. They is the Ca Dept of health. I said I complain. They said yes you must. The lady said I think I worked with you before. Yes. Then I said what I called to say. And said Yes I told everyone. I go to everyone. Who can do more than listen? And yes thank you for acknowledging I have valid concerns. Then I was told I may not get what I want. ok here the waters go choppy. In my mind acceptance is only when all options run dry. Sure it may not go my way even if I have a valid concern but I Never GO GENTLY. It is because I was a resource for others. Now for myself.
Never be silenced. Keep on doing.
I am tired and ill. I got 2 hours of sleep because roomie said she wanted coffee or to eat every 30 seconds for hours. She is angry and yells. Dementia is too cruel.
My doc pointed out that I may put off people because I smile less often appropriately. At the time I heard this, I dismissed it like I do when I don't like what I hear...without smiling of course. But sometimes when someone is talking and grinning, I wonder: Should I be showing my teeth too?? I truly often feel like a Podperson. Who is this in my place? When I no longer had
most possessions, my identity plunged and I used clothes, my art, minimal ways to feel like myself. Who is this sitting in a gown in a nursing home? I wonder if I keep asking what can I do about...blank...will an answer appear.
Horror week: I was told my friend that I had just bought a card for died,and another was on the hospital with pneumonia.
But then a miracle: I learned that my friend was alive and received my card and it meant alot to him.Some rumor here we were angry about and thankfully my friend went to see with her own eyes.
My other friend is back, clinging to life, but weak.
In August I will go go to Yosemite and Lake Tahoe with my son. I am excited and ans axious too. I have not been up high since stroke. We are driving again. He is going to be my caregiver. He said bring the wheelchair and he will push me at the accessible sites. We have accessible rooms with bathrooms reserved guaranteed. hooray not navigating a tub shower again may be nice. Visually I look fone but....
so my wide brimmed hat awaits with my semmer scarf with tassles. my answer to hiding from the sun. I keep light fingerless hand warmers to hide hands but use them.
I bought a wardrobe just to go.
Son said go light. He means not extra bags. so i will take a clothing toiletry bag that zips. With a toiletry bag I purchased online that is round and I filled with travel sized fav 65. And my tote from a window display last year stuff from a sunny caliya vacay. Sunny simple
2 other blogs missing. mystery. now what did i do.
Ok, so the morning nurse talks about how she worked at a haunted nursing home,talks about seeing ghosts in the old empty rooms.
She is interesting...
I am not a big fan of the breakfast menu. I eat cereal and fruit in tiny portions. My blood sugar has been around 86 to 90 something. Yesterday morning after my breakfast, and insulins,I got a sweaty hot flash,felt faint with that darkening around the edges feeling, and I felt short of breath, so I cried out for help,and pushed call button. The nurse with second sight ran in and put that thing on my finger,then hurried out saying my oxygen level was fine.
I had finished the food, was reading a magazine when I started feeling strange. I was waiting to make a phone call,was chatting with roomie,nothing different from any morning. But the sick feeling bore down on me. I said how I felț and reclined on the bed so my head was lower, and breathed slower more effort to fill lungs completely. But the black was threatening, the sick nausea overwheming, and the something is not right weighed me down. Tears flowed,hands shook, and I pleaded for help, I said I am so scared. So alone. WHY dont you people help me. Ok so that desperation scared me too.who says that? I laid back and gave me permission to faint,rest,give in to black. Then I heard roomie's voice saying my name and telling me I was not alone,do not be afraid. She said I had low blood sugar and I should eat. My disengaged mind creaked a gear!of course! I asked cna to get nurse,chek blood sugar. Then I heard irritated spirit- seerer nurse voice saing my blood sugar was fine and that I was having an anxiety attack. I said: Is that what you think this is? Aggravated nurse voice said: I am positive it is. My mind had relinquished for a moment there but the lack of concern or compassion in that nurse-voice snapped me back. She had left the room when I opened my eyes. The room spun and nausea continued. I tried to recall what was going on before this. Nothing anxiety provoking specifically more than usual here. The faint feeling so severe before the terror.
I asked for orange juice. The cna brought me two tiny glasses of sour orange juice. I gulped the first and sipped the second. Nurse gave me a dissolving tablet for nausea.
As I recovered,roomie told me her hubbie was diabetic and had low blood sugar sometimes. She said he would feel sick and faint,not even be able to speak his mind so jumbled, and get irritable mean or be frightened just terrified with anxiety. She would get him sugar and he would be alright. So that is how she was so calm with me. She knew what it was.
Or was it a panic attack. I have earned one. But I am newly on insulin. I also take glucophage. I handle my shots differently than they do in here.
Did I have an anxiety attack or a hypoglycemia event?
All I know is it was different from anything I ever experienced in my life. I was groggy and absolutely terrorized in what definately started as a faint feeling.
But what triggered it and what was it really?
I wish she had tested me.
I do not know what that was all about.
I do not like everything just attributed to anxiety attacks like I am just hysterical woman.
But I feel like Alice in the Twilight Zone, so maybe I am flipping out occasionally. But so if I am, the best they do is yell at me to be quiet,relax.
I am not sure why sipping juice helped. I know it took a while to be able to go about my day. I felt weak and shaky. I felt weak emotionally and humiliated.
Was it that the nurse should not have covered me with so much insulin or am I having a nervous break down?
In any case, a glass of orange juice and the compassionate confidence of roomie rather than the nurse voice, did the trick to set me right.
It has been a month since I left lost my home of 15 years. On a positive note, the place needed a cleaning so a move was needed. I parted with things that were "my precious" and painful. The saying is so true that be it ever so humble,there is no place like home. I miss my castle in my eyes.
It help to talk about it. Forget living in the moment for a minute.
I have an angel of a roommate right now. We immediately hit it off with things in common. We shared memories,losses, and she pointed out we grieve similar things. It seems each day we talk about ourselves,share,in a therapy not possible in any other arena. When she says me too I am not ashamed,not invisible. I know she feels the same so I have a purpose now.to listen. We are sharing experiences now.what a great gift. We have more in common than illness.
I have my pain pills on routine now so they wake me to take them. ***One thing I know about my pain is that when I wake up, the pain intensifies as time goes by. I hurt at max between wak up and up to 30 min. And now that I take it around the clock on time,there is no wearing off,waiting for pill to kick in. Everyone sees the difference in my disposition from having good pain management.
Ok everyone sing "At last..."
So my angel roommate, wheeled down the hall to get the med nurse, when she knew it was over the time for my next pill. I was overcome with gratitude because she rarely leaves the room, has a manual chair she walks with her feet. I joked I am a monster so she must avoid a late pain pill,but she has been watching over me and taking care of little things by advocating for me. This is huge because she hesitates to bother anyone on her own behalf. So I advocate for a grilled cheese for her when she hates lunch and doesnt like to bother anyone. I am a constant bother,so why stop.
It is the small things too that make me feel less invisible,along with the big thing like pain relief.
I use my water pitcher to make iced tea bedside. Just dump hot sweetened cup of tea with 2 tea bags into the pitcher of lots of ice and a little water. Yay. A huge mug of iced tea to sip is nicer than water.
I am spoiled by some cnas now. I know when some are working,I will get perks like hot tea before trays arrive, a stash of linens even if it isnt shower day, a late nite ppj without even asking just put on my table while i slept, a lunch tray ordered early like my roommate,A hot or cold wash cloth offered at the right time,And those things little personal touches that scream: you matter. I see you. I accept you.
These little thing blot out the other times when I was feeling invisible,inconvevient,overlooked,insignificient.
But I also need to give back,pay it forward too. My roomie said she has been scolded for getting into people's business. I said she had permission and gratitude.then we lsughed that some staff just wanted to get away with things assuming no one sees it. Sometimes it is unintentional,like the med nurse that only brought half my meds to me at breakfast and roomie warned me she was flakehead.
I say hello to everyone. I believe even those who do not talk or have obvious dementia, deserve,need,and understand on some level what eye contact with a hello conveys. I dislike it when staff comes in,fails to look at me,calls me mama. One 95 yr old told a staff: I am not your mama,so dont call me that. Call me by my name!
I love the cna who calls me "madame."
I am talking about pooping all the time in public too. I was at bingo and the cna came up and asked if I had had a BM yesterday. I felt my face turn red but thought whatever, and then admitted to it with as much enthusiasm as an AA speaker. I confess. I didvit. And I'll do it again.
I havent talked about poop so much since I had infants.
There are times I want to not be so visible.
Wow,i now sit up in bed without make up, with my grey sprouting, eyebrows growing unchecked, and dare I say I am as braless as a hippie in national geographic,but i do wear my fav costume ring, And I WAVE to people scooting down the hall and strike up a conversation. I walk daily too and chat with people sitting. Just sitting there.where are they?Somewhere happier.
We all want to be seen.
So today My Doc said right lung sounds like it is not filling up all the way prob due to the edema problem. This year I am really suffering with edema stuff. So up diuretics and hope kidneys still function well in 2 weeks. Then it took me 4 hours to be transported home. The man who dropped me off is a bully. Everyone at the home heard him telling my cna that in 10 minutes he would leave without me. Well I was waiting for help getting in my wheel chair and hang my bag on it. I have a tote I got in the gift store window with matching cosmetic bags and a contrasting scarf on it. I always have it along. But today I failed to bring my charger and my tablet. I failed to put my supportive boot on my foot in the rush to leave. All of the drivers usually wait until I am actually late...it has happened. No one left. But this one was loud. I wanted to leave a friend a pack of cards on my way out. I did because I had that time. Then he went in the busy street loading me instead of the safer parking lot. I was afraid but he said he was in a hurry and parking there was easy. He was quick and rough. I said the belt was too high up I will slip under. There was no over the shoulder. I questioned him about it. He said I needed to relax and be quiet. I did...I called my insurance to make complaint on this driver and this driving company because he was arguing at me for stuff even saying I was not nice to my cna...oh the one I rushed for his sake?? He said I was not a nice person. So I just called someone to make sure he did not pick me up. He got lost...took me to a place way out of the way. LOL!!! He called dispatch saying I refused to tell him the right address. Well it sounded like it but who was listening. I told it to him...while the rep was on phone hearing it all. I could hear her apologize for what was going on but then we got on the right Road and we were there and so I needed him to bring me inside wheel me in and he kept saying he didn't have time to bring me in and I said what are you going to do leave me outside the door and he said that's all he had to do so there was a valet parking there in the valet guy was listening all this so the guy ended up Wheeling me into my doctors check in place like he was supposed to just because other people were there looking at it and he says okay here I said this is fine and he just left not have a good day. So I continue to talk with the insurance lady and she apologized over and over and said that that was really so unprofessional and that she did not want me to be alone with him so she had stayed on the line with me and I appreciate it so much because she could hear all that is going on and I think that the guy was sort of oblivious to it I think he thought that I was just talking to a friend and maybe because I don't think he knew that I was making a report. So then after my appointment was over I needed to go over and get a chest x-ray so I asked the office girls if she could call so that my driving company could take me right over because on the paperwork and also what the doctor had verbally told me was that I was to go directly over to get a chest x-ray. So then the transportation company was saying no there was no same-day appointments and I said ask to speak to a supervisor because if it's urgent then they will allow it so here we go. So they want three days notice and that's fine but it's not always possible. So anyway they said they would do it so I sat waiting. So here comes that driver that had been such a nasty bully and got me lost and I did not want to get in the same vehicle with him again and I said no no no no I'm not going with you. So he left and I saw him drive away and I told the girl at the desk need to get another driver to come out and she was just too busy so I grabbed my phone and I called and tried to make the reservation myself and I said why did you send out that driver when I was assured that I would not have to go with that driver again. So anyway all it did was punish me because they said that it would be an hour or two before somebody could come and take me across the street to the Radiology. If only somebody could have just reeled me across the street. So I sat there for not 1 not 2 not 3 but 4 hours. I kept calling are the people in the office ended up giving me a bottle of juice and a bag of chips so I had a lunch. I had asked someone if they are going on their lunch break if I could give the money and they could bring you back something but they made an excuse and so I figured that wasn't allowed. Unfortunately when it's first it happened one of the girls at the desk at offered to drive me over but I said no because that was against the rules didn't want to put her in jeopardy so she was really nice but I just didn't think that that was something that she needed to do and I was so confident that the driving company would come. so anyway I filed a grievance but all that does is they're going to figure out some way to spin it that it was my fault for not wanting to get in the car with the bully man. Anyway hopefully the sky will not be sent out you see I had already filed so that he would not be my driver but they sent him again and I was in a hurry to get there so this is what they do to me. So I decided that I couldn't go get my chest x-ray because it was time for my pain pill now I had brought enough to stay there for a couple of hours but I never expected that I would be gone like that I wish I could take all my medications for the day because you never know when you are going to be gone But anyway I had to skip this chest x-ray. So I called to see if I could go tomorrow. So here we go. That's when whoever was scheduling said that the doctor always says go to Radiology today and at that doesn't necessarily mean that it's a stat or an urgent okay so in my world when somebody says proceed directly to Radiology today that sounds like that's what I should do. And now I've been told that it was not so important it means that I just sat waiting around to go there for nothing I should have just had them bring me home so anyway but it wasn't just the problem with getting another driver to come out you see they sent that driver to the wrong address again and then they actually sent somebody to the nursing home to pick me up thinking that I needed to be picked up there and more than one driver came in instead oh you're in a wheelchair I can't take the wheelchair. So it was a comedy as I just sat there waiting now I find out that it was for nothing. anyway it's not like I would have gotten home any sooner. but I wanted to find out about getting the chest x-ray and so the final verdict was that I could go next week and that was fine. and I'm actually grateful because I'm so exhausted and sore it's hard to sit in a wheelchair like that. I mean really my back is aching my legs are aching. Well it's because I ended up climbing into a vehicle I had to get out of the wheelchair and climb into a little mini SUV. so my muscles are really sore too. So anyway I just said okay forget it I don't want to talk to any more people about this whole thing I just want to watch some movie and up my dinner and just forget about it and then I fell asleep.
so now I'm up in the middle of the night kind of restless and wide awake. okay so here's the new thing
I have been diagnosed with sleep apnea. And always one to do something spectacularly I have the worst sleep apnea that my doctor has ever seen he told me. so he wanted to show me the chart he said over 30 is considered severe. He showed me the chart which showed 2in of nearly all the blue filled in. he said that I had a hundred and six. he told me that I should never even nap And that I should always have one of those oxygen readers on my finger to check the saturation. So okay now about my CPAP machine well I didn't get the run-of-the-mill CPAP machine I got a BiPAP machine not only does it blow air in my mouth when I'm inhaling it blows air when I'm exhaling!!!
anyway I feel like I'm in a tunnel now they do give you 30 minutes where it's not blowing As hard as it will be blowing later when you're sleeping. So it's actually tolerable at first not pleasant but tolerable. Okay so when I wake up in the middle of the night to take a pill and that thing is blowing like crazy Thankfully I go back to sleep pretty quickly most of the time but when I don't then I just take the thing off. there's a lot of times that I wake up and I've taken it off in my sleep. I feel like I'm suffocating because of all the air blowing in not because of the Mask. I tried the new nasal pillows and the nasal mask but it feels like the air is scraping off the inside of my nasal cavity maybe even blowing my brains out. So I didn't use it for a good six months it just sat there. And yes I asked if I could get the pressure lowered and I even ask if I could try the full face mask. The answer was always the same this is what your doctor ordered because this is what you need. well it wasn't that I just didn't want to use it it was that I physically could not wear the thing. And then a couple of things happened
first of all I signed up for a study called overlap study and they look at why people don't use their CPAP machine and how to help. so I was randomized and I was put into the group that would do some online activities and watch online videos that would tell me all about it and I would be able to speak with the coach. so anyway there were seven big chapters with each having between 3 to 7 modules inside that talked about the benefits how to use it how to clean it Stuff like that. So rather than go with the scare tactic sleep or die there's was supposed to educate you and convince you and support you that this was the greatest thing since sliced bread. So then the coach called a couple times that were inconvenient. Imagine that. I have the most free time than anybody I know but we had to reschedule. so we did and when we were talking I had already finished all the modules. so he said do you still want to talk to me since you're finished. I said that's why I wanted to do this so that I could talk to somebody that somebody is holding me accountable And somebody understands what I'm going through. The first time I talked with someone it was a respiratory therapist he was very knowledgeable and he's the one that said with the high-pressure you have you should not be using those nasal pillows because I know how uncomfortable that can be. Finally somebody that actually understood that I wasn't just setting it aside saying I don't care if I die in my sleep that I'm really having problems using this real problems in fact now I now have another album I'm falling asleep in my chair and I'm sleeping there rather than getting to bed and put the mask on. but it could put the mask on while I'm sitting in the chair but of course I tell myself I'm not going to go to sleep right now I'm going to finish my tea I'm going to finish coloring I'm going to finish watching a movie all these reasons I'm still eating.
so I am short of breath for real. so I'm using oxygen. so right now the oxygen is not hooked up to the mask and I said I think that I want my oxygen hooked up to the mask but the doctor needs to check out all these things I've got to sleep overnight with some monitor thing he's got to look at there's all this stuff he has to do. Another excuse for me to just set the mask aside and wait till another day night.
when I met with the doctor I had been using the machine only because I had signed up for this study I was going to meet my goal and I was going to meet my goal of using it for 4 hours at night. That was supposed to build up some kind of Tolerance get used to it and maybe I'd actually sleep through more than 4 hours but I have to take a pain pill so that's not happening. I'll get back to the pill thing in a minute. so the doctor says I see that in the last 30 days you've only used it 30%. Ben mind for the last six months I hadn't touched the thing. so I said to the doctor well that's 30% more than I've ever used it before. But the doctor ask to do his job so he had to say a lot of scary things to try to convince me I need to use this. the problem is knowing I need to use it and that it's dangerous if I don't is not helping me to breathe Against the Wind Tunnel.
so I told the doctor that when I had been in the hospital for 7 days that the respiratory therapist had come in and surprised me and said would you like your CPAP machine hooked up now. and I was so surprised because I never used it I said no I can't use that and she gently said well why and I told her why and she said well why don't you just give it a try and so I said okay I would she put a full face mask on me and I tried it and there was no big puffs of air no wind tunnel it was just a gentle steady stream and and I didn't notice that I was being suffocated and I wore it every night for 7 days. So I suspected that it wasn't on the setting I usually get and the doctor said probably not and so he looked it up and apparently the setting I was getting in the hospital was a v and the thing that I'm getting right now is 16. So I'm getting a little bit discouraged because I'm really not using it more I'm just feeling a little bit more depressed and when I take their little how are you doing today surveys it's like the more I don't use it the worse I feel Yet even that doesn't make me want to use it. I know I'm being very immature and irrational like a child that doesn't want to take her medicine but breathing is something I do comfortably without it. yes it is scary that if I stop breathing I may not start up again. I wonder if all those little episode things that they're saying have anything to do with the fact that I'm in constant pain. so there's that so because everything has been harder to breathe lately with this fluid from the edema and between the sleep apnea I really wanted to get that chest x-ray. plus I need a TB screening I was exposed to TB but apparently I just had to take the medicine it never went active but I had the Little Dipper kules floating around and so for 10 months I took various medications. I'm sure all is well. But right now I don't know when I'm going to get that chest x-ray because it looks like it will be next week. I really look like I'm always not complying and I know that the doctors will think it's ridiculous and I'm also have my legs wrapped up again because they're trying to prevent another bout of cellulitis I've had two bouts of them on both my legs so now I have to wear those little balloon support pump things and at first they said do it twice a day morning and night for 1 hour well again I have to do something spectacularly awful so that didn't work at all on me.
so the doctor told me to put them on three times a day and perhaps leave them on for 4 hours per session. So where does the living happen in between putting my legs and knees boots made out of bouncy material and fills up with are supposedly fixing my lymphedema problem. so I'm out of them constantly at my legs hurt and I am just swollen but I'm wrapped up so I've had to take the wraps off twice on one Leg . Right now it may not be wrapped sufficiently to prevent the swelling. but I had to take it off because my leg was red and had striations on it. So tomorrow we must take it up and look and see if the skin looks better because it shouldn't be red like that then I'll have to be on antibiotics
so until my wound is completely healed on my heel the pressure sore I cannot get the spinal to relieve my pain that's why I'm taking the extra dose of pain medicine instead of taking it every 6 hours I'm doing every 4.
the end of last year I have that spinal electrode trial and I was going to get the electrode put in permanently which would enable me to go back to therapy walk more get stronger work on my vestibular problems and most of all not have to take the drugs maybe even Beyond cutting back maybe I could cut one of them out even maybe I wouldn't have to take the Lyrica. I was ambushed with these darn swollen legs and kneading to take antibiotics for the infections and then to get a pressure sore on my heel. So right now I never go out and play cards. I miss my friend I wanted to give her a new pack of cards so I did. but she was sleeping so we left it on the table I hope she knows it's from me I never could play Bingo I'm just not my usual bubbly self either I'm tired and fatigued I don't seem to get enough air ever I'm not struggling for air when I'm awake because I do move I guess I'm not breathing at night. the one thing that upset me was when I was in the hospital one of the neurologist from the pain clinic came over and told me that I shouldn't worry about the surgery to put the electrode in right now because I'm not healthy enough to get the surgery and they have to get me healthy enough to get that implant put in. no it's an outpatient procedure but there is incisions that open the spine and that's risky. so I can get to think about this anymore I just put it on the back burner
then I got a message left that I need to come pick up the shoes I ordered you see every year I get a pair of shoes that have diabetic orthotics in them and so I went and had a fitting and pick the shoes and he said my feet were so swollen that he wasn't sure that that was going to be a good fit and I said well this is the feet that I've got to work with I've got to order the shoes now time will go by and I've already waited for a couple months to do it so I just have to order the shoes right now so I ordered them but right now I wouldn't be able to get my foot in a shoe they're too swollen and all I do is wear socks so anyway I'm going to go pick up the shoes and I'll put them with the other shoes and pray every night that I'll be able to wear them someday.
So I can't believe that June is almost over I don't know where the months have gone I don't know where the time is called 6 months I have just disappeared and I can't even imagine what is going on I've missed six months of doing the things that I usually do I'm always in a wheelchair now and it's a horrible and then they yell at me because I get up out of the bed and I walk around and my legs laying down in the chair and I'm thinking I just want to sit in the chair. They need to get me a footstool right now I'm using a box with the pillow on it.
I'm waiting for the home to purchase a proper foot stool or a chair that has a reclining thing. Plus they took away the foam at that was around my bed. they said that they were cleaning it and that was in early May and it laid outside and it got rained on for over six weeks I've been saying you're not cleaning it you're leaving it in the rain why would you do that. So I hope that I get my phone at you know they don't worry about me falling I guess well I'm pretty good at not falling nevertheless I have nystagmus and double vision and I also slide off the bed and I also get the shakes sometimes the jerking and I really am a fall risk. because I haven't had a full lately is because I am very careful and I always ask for somebody to come in and help supervise me getting out of the bed and into the chair so if I do feel shaky there there and I think it helps me go slower and pay attention
SO with all of this dreary nudes I must say that I still call my friend did I grew up with constantly and we talked she supports me and we talked about when she gets retired and she's going to come out here and put her feet in the beach. she says I need to get ready to go on some road trips with her. she keeps my spirits up but I'm afraid I'm going to disappoint her because it seems like it's just one health problem follows the next and I'm not getting healthier I seem to be doing the opposite and I really feel horrible so I just rest a lot.
it is unimaginable to most normal human Minds I think about being in constant pain at the 8 and 9 of their ridiculous scale because no one not even a woman in labor is experiencing the most pain possible but I always say well according to the scale of the worst pain I've ever had this is between 7 and 9 because I actually get to the point of screaming that I need my pain medicine. and every time there's a new nurse I have to go over the protocol of how to manage my pain medicine it's like they say oh whoops sorry I didn't remember to wake you up whoops sorry
so all I can do is wash my hair in the sink in the bathroom and do a bed bath kind of thing in the bathroom because my two legs are wrapped up and must not ever get wet. The bandages are changed once a week. It's just like I have done this twice before but this time I don't have the infection they want to keep compression on so I don't get an infection. so sometimes I'm so happy just to have a nice washed hair and then I'll put a little makeup on just so I don't look so pale and washed out. before I would sit out in the sun not too much not getting a burner to tan just sent out just to get the vitamin D and just to get the sun on my face. So I opted to keep my nails polished this makes me happy to have pretty nails And I love to change the colors. But now I have a nail fungus again so I've had two keep them trimmed way down and also I've lost parts of the nails due to the fungus so part of them will have to grow back again and I'm just thinking please God notice me.
once again I have my days and nights mixed up and I'm just sitting here dictating this because I haven't made a posting in a long time. I kept thinking well maybe tomorrow I'll have a better mood or have better news but it seems that the status quo settling in.
thing that is most painful to me is when people talk about their outside lives things that they're doing and I realize I'm not doing anything. I literally do nothing except occupy space. So the lady that came to give me communion told me to pray about my purpose and what I can do here for others. and that has always been what I've tried to do since I'm here might as well. so it warms my heart when one of the CNAs came to me and ask me some advice and he said see that's why I came to talk to you. he even got pen and paper out and wrote some things down he said something that has been making my soul soar. He I said you always know something about it no matter what I ask you you always have a story and good advice. wow now my own children have never said that to me okay so maybe they have at some point in their lives when they were much younger I didn't know everything about everything. well all I did was just share my own life experience and give them some resources and this young man was wise enough to know good advice when he heard it! So anyway I was so happy that I was good for something that day. now there's this lady that pops in to visit with me and she usually wants to tell me the same story and say the same stuff and I listen and I try my best. anyway this young man who's been my CNA this past week keeps calling me Mom and I know he means well but it makes me want to cry because I miss my kids. so my son he text me and yet it's not the same I say I want a phone call but I never get one and of course he's endlessly busy and I know that but I also know that there comes a point where people withdraw and they don't keep up the pace anymore except for my really good friend who always sends me a box every month and it's really nice they have a token because it means I'm not forgotten.
I can't believe it it's already 3 a.m. and I'm noticing how hungry I am I guess because I skipped my lunch and I only had a little salad for dinner because I didn't like the dinner and I didn't have any snacks. I was supposed to stop at the pharmacy and pick up stuff and then I would have picked up some soup and supplies that I need but that didn't happen today oh I got to find out when my next appointment is and then try to go later. Okay well I have to stop now
. If you made it all the way to the end I thank you from the very bottom of my heart for listening and caring.
Maybe I walked around too much when I went to my OT appointment at the hospital and walked back to my room. The pain has98mawakened me. My foot feels like it is being stabbed. My leg burn and aches. Every so often it feels like a hot branding iron is on my calf or behind my knee. My foot tingles hard unpleasant.
I was sleeping so well. Every time I was up,roomie called for a diaper change. She had a milk of magnesia cocktail before bedtime. She has a fascination with asking questions about her bm. She also fails to call the cna right away so there is quite a mess and cna says why didn't you call me. It is like groundhog day,every time the same. And I pull out my scented lotion no matter how sleepy I am. The screams of other residents down the hall. Linen carts roll in. It is still too early to request hot beverages. Roomie sleeps making a puff sound that sounds like " puuu" and I giggle. She will not put tv on before 7 am.
My mind racing because I got my hearing date set for 3 months away.That is early.
I had a quarterly meeting that was strange. One staff member came in to chat with me and she focused on what was my pain level number. I said it was a 7. I am dealing with the staff not giving me the pain meds on time and they lie about leaving it on my table instead of waking me up. I photographed the med cup with the pill in it and showed supervisor the picture with the time on the detail page. They are so concerned with the pain number that another woman followed and she wanted to discuss it more even though I was in the bathroom. I told her that I was not going to change the number from a 7 because that was the first number that came to mind when I was asked. Then I went on about how meaningless the numbers are because the criteria of what makes a painnumber is always changing. for me the 7 gives room for more pain and leaves room forgiving it a huge this hurts badly message. Now Ido not know why I said it was a 5 before. Was I really in less pain or did I give it an equal chance to be better or worse. But even
I went around giving the caught you caring forms to my neighbors in the home so they can vote for their favorite staff. I found many bedridden neighbors anxious to have a visit
I spend time watching time with my bingo buddy. I enjoy her company. She is alumni of Spellman University.
Roomie is going to daughters home so I get a break from her.
Cannot wait to go have some fun this afternoon.
Merry Christmas Eve Everyone.
I miss Christmas Past so badly. Here we all do. But we have christmas present.
I sat a center table near the big screen one day talking to a man on the couch,when 3 men pulled up in wheelchairs and said the table was reserved for them. I said may I join you but they made it clear it was a no. I mobed to a window seat. I did not go back to the dining room because being served in a room reeking of urine was preferable to reliving high school seating fun.
Well my med made me restless. I went walking and visiting. I ate lunch and dinner in the dining room celebrating I could walk there at last. Well my protector was sitting at the prestige table all alone and asked me to join him. Those men were at another table..talking smack and yet not confronting a big black man even without his legs. I sat down deliciously enjoying the AC vent above and no speaker squeeking bad tunes. A line of chairs separated the wheat from the chaff. Other friends joined us. It was lovely. Every now and then protector would tell them it was not their table and it belongs to all residents. Later protector got me watching the big screen to see my shows. There were a couple of men watching Masterpiece Theater. One kept saying he was at the high school and had to Get to class.
Then in the morning Roomie stunk up the stale aired room so I walked to the lobby,took the key reserved for visitors only,and freshened up in a sweet cherry scented room. I thought of bringing the Scent thing to my room but I was told it was not allowed before. Then I went and sat at the prized table to have a coffee and watch Tv with another woman sitting on a couch eating a cuponoodles. The nice man who watched tv with me sat with me for breakfast.
After breakfast I sat there making phone calls for insurance problems and dr appts. Then a woman from bingo came in and we played uno as I taught her. The activities director brought us cards.
Then the kitchen staff told me to move. She rolled the man away. I said no I an staying put. Then they set up tables for those men and one wife. Right next to me. Then served them while cna came and told me to move. I said no. They took away the second table my friend was at. She said tough *beep* that those men wanted us to move but cant be understood well. Then I told the men they were awful and dang it i cried saying how can you do this to me. I said to get the director. The social worker came ashing if i had issue with the men. I said no i have issue with staff. Then I went to director office to talk. More tears but I told it. She said ok go back and walked me there. I saw the table cleared bare. My coffee gone and friend gone. One empty table covered with a cloth. It was too much. I sobbed from my soul saying it is all gone. You took it all away. The dishes,friends,dignity,respect,belonging,fun,my identity,me,injured,violated,control and choice taken. I could not go eat a meal sitting alone next to the tables set up for those angry men. I broke down. My spirit left. I said you all win. It is all yours. Enjoy it. But I heaved it out in sobs. All eyes of the dining room on me. Then I walked faster than ever sobbing blinded by anguish so deep dizzy but determined. Staff saying lying what is wrong. Really.
I stopped hugging a woman who was kind to me. Told story. She said go to room and eat. I stopped at nurse begging for pain pill for my leg. She thought I wanted anxiety pill. I told staring cpas to get away and nurse took me to room while I gave in to emotion pain anger loss fear invisibility. The nurse said you know how men are. Dont let this take ahold of you. I let go. Drained.
A spectacle in a cage as I screamed inside and politely asked for privacy. Must the breaking of a soul be stared upon with cold curious eyes.
For the next hours questioned,Management damage control. Staff excuses reasons blurry meaningless petty. No reason ever good enough for why because no remorse. Discrimination in a veiled form lingering in my vertigo. They ask what can they do to make it right.
Then the offending cna brings a food tray to Roomie. I let reason dissolve and yell directing blame, and showing my ripped out heart. I scream do not let her near me. I accuse her recalling her face eyes as she told me to move immediately. She mouths off. Wawawawawa. I lose myself in a watershed.
Time for bingo a voice sweetly announces. Kidding right. I am a carcass picked by vultures for hours. I refuse lunch dinner and eat milk and cookies I earned at bingo.
I told Them I need to think process talk to others for advice. Talk to who said with now interested eyes. Now I might be a nuisance. They have meetings. They ponder over my response. Why did I not follow orders,be "nice" ???
They say go to dinner. I say it will never be safe in there again. They say that is my choice. Now they offer me choice to return to the scene. All in order now. I ask if the men have been restored to their table ? They ask dont I like a nice window seat.
I am now back in my cell with a dying woman wasting like a gypsy curse. The urine drenched woman consoles me like a friend. I despise her smell,her dialogue that replays on loop as she directs her diaper changes like a script. She claims she is always dry.
I am in a mad house. I beg for release.
Bossy nurse reports I have prescription face creams,solutions so head nurse comes to collect them but says they got a doctor order so I can keep them. They will bring a locked box in the morning.
The Dept of Health is coming to talk to me. They need to cross the t's now. I need to wwait and consult before I make any official statements. I need to get an advocate.
I ask them to let me rest. They want my bp tested. I am in a drained shell now. M leg ignores any pain meds and reflects the pain in my soul with a physical pain to match. I wish to close my eyes now. Drift to oblivion where I do not recall this me that clung to Bossy nurse when she said she was truly sorry to see me cry.
Why is everyone bewildered to witness the real response to discrimination and bullying?
Shame on those silencing me with their PR crap. I want out of here I said. How can they talk about how there will be no retaliation when their lies and denials are already the beginning of my punishment. My break down is proof I am unstable,not a woman engulfed by a brain damaged by a stroke.
They have always been immune. We are room numbers. Occasionally we are bodies to be collected or personalities to deal with.
Roomie watches another rerun. I decline to share in the joy of watching Sister Act for the umteenth time since I have been confined to her world. She tells me I do not like anything or anyone. Later she thanks me for letting her watch it without turning on my tv,which sits six inches away from hers.
She never lets anything interfere with tv.
I upset the universe here with a minor ripple. The wheels turn on.
I sleep then awakened by nightmare that is about my time here. I was ill prepared for this place,this replica of Zimbardo. The Irish in me cannot Heed the friend who struggled to get out the words No Fighting.
But my fight was with card games, conversations with those poorly understood,and &elping my neighbors. Why am I broadsided by people who say they never expected I would get so upset. Really?
Has not anyone here heard of Rosa Parks?
Apparently not since management still came in and said they had to come up with a plan for seating in the dining room. All Rosa needed was more buses to alleviate overcrowding?
A friend kindly wisely invited me to dine with her at her table. She said forget it,let it go. Come play cards.
I could not. I needed to sob more,relive it in the retelling. Tormenting myself with the zeal of insisting I am not an untouchable. Reach out to my tormentors for them to bare witness. Not about a table. They are clueless?
I feel violated,yes abused. Intentionally. And now I will suffer involuntary isolation as a result of this trauma. They say no one intentionally upset me,no one insisted I move they requested, people were finished at my table,not moved against their will. They say the dining hall is first come,not bullying,but accommodations. The men in big wheel chairs can only sit right in that secluded spot away from the rest of the diners. No exceptions to first comers intruding highjacking their turf.
The staff protected Who?
Now I will not play nice.
My fallen trees are fuel.
This is not nothing. This is not all a misunderstanding.This is not forgiven nor forgotten. This is not over.
I am alone. No staff or resident stands with me or for me.
I said to the heads of the brainless that I blamed management that the cna's and kitchen staff believed they could get away with treating me this way and would be supported in denials and lies. I made it clear I would regroup and Seek support elsewhere outside when I talked to the social worker. Wolf in goat skin. Reeking. They almost have me convinced to doubt myself.
Thank heavens for my cell phone. The computer in the dining room does not work. I used the social worker' laptop for asking for a medical review for the hand splint.
They say a sign of being crazy is denying you are.
I missed my radiofrequency ablation appointmenton August 1st because I have been ill for all this time. I was told it is a virus back in early July. I took 2 rounds of Z pak, cough syrup, an inhaler, logenzes, steamy showers on shower days, and whatever other thing I could do such as order from a local ethnic restaurant because I cannot get chicken soup from our kitchen in the nursing home. I hope to get some canned foods to keep in a drawer. So this virus and any bacteria seem to either be lingering or reinvading and as time goes by I am discouraged and anxious to be well again and get on the way toward recovery work. I hope visiting with an ENT will prove no other explanation besides a virus is going on. My PCP was most unhappy to do medicine this way and wrote on the referral that patient refused to leave without a referral. Sheesh made it sound like I handcuffed my walker to a chair. I am sort of freaking out about not being able to get this second RFA because I feel that the first one helped and that it may wear off or something needing a second zapping to keep away pain. Plus I tired of feeling like I have a sore baseball in my throat. I know it is viral but I am not kidding when I say this a two month thing here.
In the meantime there is more about the updating me than spending the majority of the summer ill. I am completely off Effexor. I weaned off without a hitch. The pain never increased even though this was supposed to be part of a super cocktail. Opana is working well now with using a long acting plus an immediate release booster. This seems to be the opiate puzzle piece of choice to my pain receptors. Unfortunatly I continue to suffer from hand tremors but I fear I need Lyrica or Gabba. I never figured out which is better at lifting the fog while stopping that electrical style pain. I changed one BP med thanks to an insurance sudden refusal to fund the old med. I wonder if these new changes could help me get back some mind along with health and relief. So far at the end of the 2 year long opiate trial that my now fired pain doc sweared the insurance company insisted upon, Opana is the one providing relief. That pain doc was pessimistic that higher dose of opana would help and insisted I get the RFA otherwise be left without pain relief. Hence my anxiety that round two may be put off even longer due to illness which I warned could land me in the ICU if I do not take the precaution to get a doctor's clearance plus wait 7 days from the day I feel absolutely back to normal fine to call to schedule the procedure. That means at least another week before I will be in like
Flynn. If I have a virus to wait out any longer then I may discover if Opana is any good alone with Lyrica.
I also was discharged my my vestibular physical therapist until a reevaluation at the end of the year. My PT went off to her wedding and honeymoon while I went off to my neurologist who ordered my PT to ask him if he agreed I would benefit from a homestudy plan doing assigned tasks until the end of the year. He asked if there was an insurance problem and I said I did not know what my PT records were all about and he simplified it by saying well lets order some more PT. I was given another 7 sessions and one session was a reevaluation. The usual so apparently the insurance is not bucking. I asked my therapist if I could benefit from working more with some visual stuff PT while I am on this time will tell sort of thing she wants me to do and she got me in with her associate. wow. I mean did I almost miss this opportunity? This other therapist has checkerboards and stripes in high contrast black and while all over the wall. I also used to have this one exercise at the outpatient rehap hospital immediately after stroke that used a bouy on rope and I stretched the rope out and shot the bouy out and watched it tracking it back. So I need these things.
I am really lucky to have a neurologist that agrees more is more and that all a break would be is a break. I also get out the day of an appointment which is therapy itself. So what if insurance does not look at that. Someone should. I wondered why my therapist was so gungho for me to disappear. She always says never let someone tell you how much you will recover but she did not think I would not let someone tell me how much therapy I need. So I will put on my gym clothes and go off to the rehab at the hospital and enjoy a day out too. Lucky me that my nursing home decided I did not need therapy and so I go get it from the hospital rehab. This is logical because I get so much more. Other residents have asked me about it. Well this time I want to get those wall things to have to do my homework.Some new project for me to work on.
I will be a grandma anytime now. I ache with longing and emotion at this version of grandma me. My ideal version bakes, drives, rocks,babysits and does everything I do not do. In fact with my history of nodding off and falling off a chair on my head, I will only hold a baby with supervision and spotting. Now that is another loss but all I do is remind me I am here alive. I can no longer do but I can be. There is still value in that.
My friend and roommate passed away. I do not have a new roommate yet but she is due to arrive here soon. I miss my friend and there is not any support here for death of roommates. This is a new life for me all this death and loss
and being supportive of those in their 80s. I have a friend and we are into coloring books and work together spend time together.
I have not felt like blogging much but I feel better now that I spoke of new changes and challenges.
I usually pay attention to what meds they give me, but the time I did not, they msde a mistake. I know my med schedule changes,but I figured that the nurse that made the change would get it right.
I first noticed I felt ultra drowsie. Roomie called out to me and I jerked awake and she told me I was leaning over toward the metal safety bar and did not want me to hit my head. Wow,I was sitting up on the bed,at my table, and I continued to nod off. I was afraid I would fall off the bed so I sat back. I felt really funny. I called for the nurse and asked her if she had given me a methadone pill at breakfast because she gave me a med cup full of morning pills and hurried off. I gulped them down. That pill looks like others and she had not said what was in the cup like nurses usually do or stand making sure they are taken. I reminded her that the schedule changed and I took it earlier in the morning. I told her I felt really groggy. That nurse told me she gave me whatever came up on the computer and said it was anxiety and to relax. I said I am nodding off unconscious nearly falling off the bed and could she please check and see if it came on the computer. She said she was really busy and she would do it later. I said well get the supervisor nurse because I feel something is very wrong. My CNA came in and we laughed because he teased me about wanting to be even more sedated and he went off to get me a second cup of coffee I asked for. The nurse went to check the computer after I said I needed to tell my doctor and speak to supervisor I felt odd because I was a stroke patient. She returned with the verdict I expected. She admitted to me that she had not checked the computer and gave me the methadone from memory and missed the schedule change. She actually laughed it off saying it proved she was human. I did not laugh at that. I was feeling afraid to fall asleep and fighting the overwhelming slipping away feeling pulling me under. I asked her what to do. She said she had meds to pass out and she would come back later. I asked for a third cup of coffee,and tried to continue watching a movie. I successfully stayed awake all morning,ate lunch,and went off to bingo. Then I walked past nursing cart and she had my 2pm gabba ready and I said I wanted to skip the 2pm methadone. I told her I was not in any pain. The next nurse was there coming on the next shift and my nurse smiled saying she had overdosed me. I walked back to my room and decided to give in to a nap. I slept for 2 hours and by then I was feeling pain. I called the nurse,the new evening shift nurse, and related the story. I was surprised she knew nothing about it. But she did reveal to me that it happened to another man. She also told me that her notes said I took methadone on schedule at the 2pm dose. I said No! I demanded a supervisor. It took hours for one to come in and the story was tell the day shift supervisor. The problem was I had been in pain 4 hours before the next methadone was scheduled and I had not taken the previous dose because I still felt no pain and drowsy enough to immediately nap. But I woke up to pain. I had no other choice than to take a norco to see me through. Then I took methadone at scheduled bedtime dose.
In the early morning, I took the methadone pill. So at breakfast, I looked in the med cup carefully and told that nurse mby previous morning adventure. He assured me that it was scheduled properly and he did not know anything about my overdose. I said I wanted to speak with the supervisor. So I told my story again,and she repeatedly asked if I took a 2pm dose and I emphatically said No! I was groggy and not in pain ! I asked her if she could check what the record shows. She said she would and make sure it would be correct in the computer,talk to that nurse.
I never did find out much. I still feel too drowsy but not like that. I hate taking a norco that overlaps with a methadone. I have become a zombie. I go to pain clinic tomorrow so perhaps something can change.
It feels like forever which is almost 5 months of waiting for outpatient PT at the hospital rehab center at the same hospital I was in for two weeks with the stroke. The delay is riidiculous but what can you do? They sent me home with a therapist coming to my home to give me PT rather than put me in the rehab center for some policy reason and the first week I was home and the first time the home PT person came he said I needed vestibular therapy which he couldn't provide. I said the PT therapist in the hospital said it was vestibular so I wonder why they sent me home therapy when I need outpatient. So then we went on the road to get the outpatient. The insurance wanted me to go to some other place that didn't have a vestibular therapist and they said they wouldn't take me. So then it just didn't happen. I had to file a complaint and then they said oh yeah we approved it all just tell us where you want to go and I did and it took another couple of months for them to coordinate the endless approval paperwork stuff and then to finally squeeze me into an appointment after another evaluation to see if I need vestibular therapy. I wish the insurance company could have successfully willed away my need for vestibular therapy because it certainly seemed they tried hard but alas it was not to be. I am finally going but not the twice a week they suggested because I am told that they are overbooked as it is and squeezing me in once per week in a particular time slot so take it or leave it. When I was in the hospital they said that I needed to be able to do 3 hours of therapy per day and then they said I was too functioning to go. So I don't know if I was too weak or too strong but I didn't get the super therapy treatment. I asked what the difference would be between the inpatient and the outpatient therapy and I expected them to say time spent in therapy doing this or that but the physical therapist said well inpatient is like a hotel that has to be paid for and outpatient you go home. LOL sorry perhaps it is just me but the word "inpatient" doesn't immediately associate with "hotel" for me, but just give me a minute. Ok so my hospital did have good food. Ok nice sheets. It stops there. Anyway I have worried over the missed window of opportunity that I may have benefited from intensive therapy. The docs say it isn't true and that the brain does what it does with or without therapy. What else can they say? There is not enough vestibular therapists around and therapy is a rare commodity around here then? I hope it was worth the wait since I am not getting the hotel version.
I also didn't realize I could get some in home services. Wow. I left my hospital pretty ignorant of what kind of services are available out in the community like access to public transportation on a little shuttle that comes right to my doorstep. I just found out and so I gave the paperwork to my docs and now I play leave the reminder call game trying to get them to fill out forms. So far I have marked off 30 days of waiting and weekly calls. I am now probably marked as a nuisance but hey I have nothing but time on my hands now so I keep calling. I had a case manager for a minute in the hospital and when I left I called her and she said she just worked for while in the hospital and I said well what about for things that should have been done while I was in the hospital? Is it too late for those things now? The answer was a curt "yes." I have learned about things online or from waiting room chats with other people.
Otherwise I am hopeful that therapy is the magic I need. I am in such pain and some is probably from this swelling in my legs and in my feet. I have been hospitalized for and all the tests come back good and the doc says it is the meds but he doesn't change them. In the meantime I have ankles the size of my thighs almost and my feet look and feel like they will explode at any moment. The doc said it isn't so bad while I explain that I had to buy these adorable shoes I am wearing in a size larger than normal to get out of slippers. They tell me that most of my meds cause swelling. Joy. So which one are they going to change first? So far in a couple of months they just listen to me complain about my swollen body and then have the nerve to remind me to watch my weight because I have put on pounds. Hello? I am a spongebob right now with a full load and what about this weight thing? My feet look like flintstone feet. There are swollen lumpy spots on my feet that are not normal. I don't know what else to do because I am going to the docs and the hospital and they give me a diuretic that doesn't work and then nothing. Do they not know what else to do or am I not complaining enough yet? I hope the therapist will have some suggestions or can raise some alarm to get them to do something. I soak my feet for some relief but that isn't doing anything for more than a minute. Everyone that looks at me says I am swollen, legs, feet, belly, face too but not the arms. I have asked to see a cardiologist but here we go again with the referrals game so good luck with that right. I may get one after the holidays maybe. The wheels move so slow. Ok as drugged as I am on Gaba and Norco 10s and I still feel like my feet are going to explode.
I am still making it to class and it is unbelievable to me that I am able to do it. I worry that I won't be able to continue especially since I am on so much meds now. Speaking of meds as I keep taking more I worry about tolerance or is the pain really increasing over time? I tried to wean off the meds and it hurts so bad. So I need the meds and I don't believe in suffering. I want to keep on with finishing my dissertation and finish school. I had my stroke finals week but I returned a month and a half later and took the finals I missed and started in summer school. Now I am in the fall session and taking lighter load of classes in the middle of all this pain, pain meds, and physical things going on like weak and numb right side, vertigo, dizziness, and not walking or driving. I want my normal life back so I just sort of pretended I am not a stroke victim and just carried on. I was in denial and perhaps I still am and what is wrong with that if I can pull it off. I couldn't read right so I got some prism glasses which help off and on. When I am fatigued it will start in the eyes first. I read all I could in the hospital and when I came home. Reading is my life so I had to do it. I hope it helped. I also wrote weird in the hospital but I started a diary and I wrote in it constantly. I can see how my handwriting evolved back to normal almost but not quite the lovely script I had when young but it is better than the scrawling scratch after the stroke. I was really upset at the loss of my handwriting which is silly eh since I can't walk either. In the hospital I couldn't sit up either. I leaned to the side without being aware of it. I had to be propped with a pillow but that didn't last. I had trouble when i first came home but I kept sitting in a chair and on the computer reading and typing and then one day I didn't need a pillow. I can sit up on my own and balance now. I wish I could walk up and down my stairs and i am impatient for that to be something I can say is accomplished. When I woke in the hospital not walking or sitting up straight it was a shock. I came in with symptoms of listing to the left when I was walking. The ambulance came and I was admitted but I was not given that magic stroke medicine but I was put in ICU and then I was in a room. I guess I slept a whole day away in the room because the nurse came in and said she hadn't heard a peep from me to use the restroom and I slept through them coming in to do vitals. So I got up hungry of course. And then there I was not sitting up right and double vision not tracking couldn't look at a face even. That happens now when I get emotional. So I have improved. I am grateful but I want more.
The emotional is the worst part of all. At first every little thing made me cry. I would be confused and cry. It still happens but not like the early days. No one was very understanding of the fact that I was in an alien body that didn't walk or sit up and was numb on one side as if a line had been drawn down the middle head to toe. And I was looking at a world that was spinning most of the time and I couldn't stand without falling to the left or when I did stand I would just get close to the bed to sit down and I would fall to the left even though I wasn't thinking of sitting yet. I would look to the left and just fall to the left. I was not the master of my own body. My vision made it much worse and still is contributing to the horror of this experience. if only I could see right and not be dizzy. When something is funny it is unusually funny to me and it physically hurts and the same is sad things. My emotional regulation is off and it physically hurts in the gut and head when I feel strong emotions. I can't handle the little bumps I usually handled. Forget about big ticket stress because I am unglued and sob. I sob when I think of how much I love my family and I sob when they screw up my prescription once again. Ok then they say this is normal post stroke and for my stroke location but hey no one in the rest of the real world knows this and I look like I just went bonkers poor dear. OR that I am some unstable crazy because I am constantly advocating for myself and that usually reduces me to tears but hey why can't they get it right? I had some help in the beginning but who wants to deal with this at the 5 month mark we are still dealing with insurance authorizations, appointment screw ups and this seems just to be a way of life in the medical world. They got sick of it. I can't escape it though. I often bargain and say look if you just let me walk and drive again and give me some other illness that at least I would have some control over my life and to be able to see so I can at least deal with the problems. All problems are overwhelming. I have someone in the insurance co and she is helpful sometimes.. I hear that all social workers are just over stretched and so there isn't much help really. My family helps but they have lives and mine is a bore now with the same problems over and over and it isn't even half a year and we are all screaming Uncle!
Ok so not all days are bad and maybe in my next blog I will be in a cheeryho mood. Right now I am just feeling appreciation for the pain and breathing through the experience of loss and disappointment and owning it because I have the right to acknowledge the unwanted changes in my life and own body. How violated I feel that my body has been taken away from me. I am not the same and yet I cling onto what remains and try and keep my life and identity. I don't want to learn any profound life lessons right now, I want to walk again but I guess that as I journey through this recovery or acceptance phase that I will personally grow if I can shut up and listen to my inner self for a minute. I am angry. I am so mad at all I lost and I miss all I had even though I complained ...how I wish to go back to every single bit I complained about before. And how I fear I will be saying that about this time when the next stroke sneaks up and robs me again. I keep thinking of the day before it happened. I was at a mall and walking. I was with my daughter and we got starbucks and carried shopping bags of some really lucky sales findings and we sat at the water fountain enjoying the nice day. I remember dodging the other shoppers and riding the escalator. Walking is such a joy. Carrying a purse on your shoulder or arm and it isn't the same holding it in a wheelchair. I have clothes made to walk in. the way the fabric moves, the cut or lace on a shirt with scarf edges. Shoes. These feet may never wear delicate straps again. Right now I wish I could wear my tennies. Oh that wonderful day the time before the stroke. I have had nice days since then but not really. I have ok moments when it doesnt matter but I have awful moments when I cry and rage and beg and bargain. I don't think I am out of denial that this is even happening. Maybe that is good. maybe I will pretend to be normal and carry on as if I was and wouldn't it be great if I could master that. But we will see if it comes crashing down. Reality.
Well my hands hurt from typing so much. Talking is the only thing left. I have never blogged before. I have done plenty of diary stuff so it shouldn't be so bad but this is hopefully for someone else besides me but I really need the support because I don't know how to do this really. What has ever prepared me for this? maybe someone else knows. I am lost in a foreign land and everything is strange and frightening and I don't like it. I want to find my way home again but I have a feeling I will never get back to Kansas or find Toto again.
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.
I have taken pain meds with me to two doc appts. Because by the time I get there,do the thing,get picked up again in an hour window, allow for traffic,getting in...it could go past med time,depending upon when I take the last dose. So they packaged up meds including pain pill for me to take on time. But not today. Transportation came but they said it was not allowed to send the pill with me. I knew I would be gone when the time came for a pill. The nursing supervisor said no. So I walked slowly but surely to the lobby and front admin office to speak to the director. The receptionist told me to go to my room but I dismissed her. She called nurse and cna who came and said I either be taken back to room or be escorted out to the van. Nurse told me no matter what,there was nothing I can ever do to get to take a pill with me and said I should just go to the appt. I repeated:nothing? Nurse said: Nothing!! So, I poked my head into admin office and said"excuse me" and she came out,sat with me in lobby and I showed her that paperwork for taking meds out of here so she went to nurse and then came back to me and said doc has to give an order so the other appointments I can take it with me. But she said the best thing is to schedule my appts close after I take a pill. Well I did that but some could not be done.
So I rescheduled neuro appt and I wait for dr permission to take meds with me.
Today I leave after taking pain med and will return in time for next dose.
When I returned to room, everyone had heard about my audacity. But hey,I got to speak with director.
This feels like prison with bingo.
Today I give thanks for Hope and the people around me who help me hold onto it with their love and kindness. Some are strangers come into my life briefly,but leave a huge power of positive energy that gives me healing.
Today I wear 2 patches to increase fentanyl dose. It took 2 months to make this happen. I hope this helps.
My night nurse told me that she sees Lyrica used more than Gabbapentin. She thinks there is a difference,that it works better for some patients.
I have to wait for a preauth,but it is on the formulary according to my insurance rep who explained my doctor's insistence that it is not covered as The possibility she has an outdated list. I am glad I called to check.Now peace of mind,however doc still must fill out a form justifying the use. I just do not understand why she insisted my insurance does not cover it when it is on the list of approved drugs.
The other thing I wonder about is why she says I have run out of pain killer options when there are more. And as far as addictions...ah hello,this pain never stops they tell me and is hard to manage,so why hesitate.
I feel pushed to do invasive stuff. I feel that I need to comply.
I met with the Ombudsman this morning. She had received a report but apparently not my side of the story. She asked why did they want me to move. I said because those men always sat at the two tables put together by the fireplace. But they told not asked me to move even after they put 2 other tables together and they sat at them. The director said one man in big wheelchair needed 2 tables together and my reply was that was not the only place for 2 tables.
I know bottom line was I could not be wheeled wway or silenced. I told ombudsman I was humiliated in front of a full dining room,They took away my dining companions. They served the men food while I was told to move by kitchen staff and cnas.
I said I felt that they want to drive me out. I do not feel safe,respected,cared for. I fear retaliation in those cant catch it ways.
I feel others think I am over reacting. Why didnt I just move to a nice window seat is what director said. And I wanted it reported which they acted like it was petty.
I said I must report this. And I begged for help finding a different place more suitable. Ombudsman said I may help prevent it from happening to another. I said I was traumatized by the events, no one supported me at the time, and directors made excuses not apologies. I want to report this to the state licensing to investigate. Even if the result is more excuses.
I do not go out of my room. I am upset when one of the people from that scene come near me. I tell them to get away firmly. None apologize. I miss the new friends I made here. It is nice they have visited but it is not the same as support. They want me to be ok. 3 staff people came to tell me bingo now. I say not today. Why the sudden notice and pressure to play bingo from staff.
I do not think I can be at home here. How dare staff involved now come to me saying bingo time. They spoil bingo for me. They betrayed me. That is how I see it.
I reported it to cleanse my soul of the anger and sadness. I have no expectations that anything will change. A report may not be a big deal. I may look crazy. But silence will violate me again and make me feel more helplessly insignificant.
I want to forgive but I believe we teach people how to treat us.
I do not know why it turned so ugly over a table. I dared to refuse. Now I am a nuisance. They want to report that all is well. For me it will not be while I am here.
I had one kind nurse that listened to me sob. She saw me talk to ombudsman and says she gets it. I gotta do something. Not pretend it was nothing. I feel better with one person support,approve,gets it.
I even feel better now reporting,telling story.
My stroke was May 2014. My PT said recovery goes on slowly so learning compensating strategies is important. She was not saying to abandon hope. She continues to teach me new ways to retrain the brain in ways that are new to me since my past experience with therapy has been limited. But she wants me to have a tool box of tricks to compensate that may help me daily.
I will share one simple strategy that has really worked for me. Most people move their eyes and head at the same time while turning their body. I never thought about it. But when I do that like I have all my life,then I feel spinning,dizzy,and lose sense of where I am in space because my eyes bounce around unfocused. So the deal is keep eyes still and fixed before I turn. So I move my eyes first and look at a target. A chair.A thing on the wall. Once my eyes are fixed, then I slowly turn toward the fixed spot. And amazingly, my turning feels normal,smooth. This trick is helping with my mobility. It takes conscious effort though.
I soothe my nerves from the overstimulation of noise in the nursing home. Can you imagine television going 7/24 with sitcoms?
My apologies if you enjoy that. I just do not. I put in earbuds and plug into some relaxing music to drown it out and sleep or look at a magazine. I find relief going through hygiene routine in the bathroom.
I notice that roomie does not ever brush her teeth and no cna comes in to assist her. Roomie says her teeth are already ruined. I cheerfully point out she still has them. I go brush mine.
A woman across the hall passed away in the night. The other occupant in that room keeps her tv volume extremely high all day and night. No she is not hard of hearing. Not yet. She will argue about turning it down so no roomies work out there usually. This one was very ill. Family was there. The tv blared away. I hear it across the hall. I hear that and staff and I sometimes feel like the bionic woman hearing overwhelming stuff. Music and movies drown it out in best buds on market like surround sound. I just felt sorry that the very ill woman died with an informercial blaring. I guess I think of being more respectful when someone is on death watch. But the woman in here is stuck listening to sitcoms. This tv is never shut off either.