Kristi Karnopp's Diary & Blog

I wish my caregivers would make up their minds at times. Now they want me to stay with Mercy dialysis for now since my care of dialysis is settled.  Ugh! So, now what! Well, I just got done with OT at Mercy rehabilitation center on Washington Street and waiting for my ride to arrive to take me to dialysis as I get hooked up to the machine by 11:45 AM.

Dialysis Update

I am glad the weekend has arrived. Dialysis went smoothly, and my catheter had to be reversed today to function properly for treatment. My blood is getting clean at 2 hours and 45 minutes 3 times a week. The only thing that is the downside is that my blood pressure going below 100/50 is turn the machine to clean only and not take any more fluid out of me. I believe I do not need fluid taken out of me that is not there, I guess. Feeling dizzy and cramped is no fun either. Today was one of those days where I felt dizzy and cramped at the same time in a long time, ugh! Waiting for time to pass so I can get out of here and get home for the weekend!

Once Again

My Microsoft program Word program once or twice lost its syncing process between iPad and phone, and today its syncing right again. I wish that it would work properly more often from now on, but I am not confident enough to believe its ongoing from now on.

I Want

I want to fire Jackie again. She got me very frustrated today. She doesn’t talk to me! She talks through Deb which frustrates me because I do r want that. I want her to talk to me period! If she doesn’t talk to me, I get so frustrated that I don’t want her to work for me anymore, but then I would be going to a nursing home. So I can’t because she is the best one I have had in two years. My other caregivers left due to either bad terms or had to find work elsewhere or had family issues at home. One caregiver. Dawn Kastenmeier Fry left on bad terms in 2020 saying she hopes I get Covid and die. Well, I got Covid in July 2022, and she became an administrator at a nursing home, and denied my admission to her nursing home. I ended up going to the nursing home in Evansville called Evansville Manor for three weeks and in September 2022 because of a hematoma and blood infection and another stint in the hospital for a month and and went home AMA, but with the means to get a Hoyer lift and sling because my primary doctor Dr. Hussli would not order one because she deemed it not safe! St. Elizabeth’s ordered one through their doctor there and I left Dr. Hussli immediately after that and haven’t spoken to her since November 2022! I even blocked bee on Facebook because it really isn’t right for her to be my friend there. I do miss the kids growing up, though. She has two sons and a daughter. 

Dialysis Update

Ok, no dialysis today. The catheter has to be replaced on Wednesday at 10:45 AM, a half an hour before dialysis at 11:45 AM. The whole catheter does not need to be replaced—thankfully—then I go to dialysis from there. Now, with this procedure, it’s simple and quick. I like this idea a lot better than replacing the whole thing which is more complex. I had this catheter replaced when I was in the hospital with my hematoma and founded blood infection in September 2022. That was a scary time! I am having a busy week, and my week has not begun in a good start. Already my week has begun a little rough. Not very happy start anyway.

With my iPad not working right yesterday to today’s catheter not running for dialysis today, and now I’m going to wait until Wednesday for catheter to get replaced.

iPad

Well, I will put it this way. It’s fine now! Jackie and Deb did surgery on it. It is not a funny manner because the charger cord broke and part of it was stuck inside the iPad! For how long, I don’t know! The charger was thrown out and I have a new charger for it. For how long, I have no idea the cord was like that, but I noticed that my cord was not always charging. The iPad was telling me it was not charging and it was frustrating for three to four months or so. I did not think that something was amiss with the charger cord. Jackie and Deb fixed my iPad. Yes, it is an Apple product, and I will not change my favorite brand even if I have a Chromebook laptop now as well. I got it for myself to use for Jackie to use while here if she needs to get on it since she is used to Android or Windows computers. She hates iOS—literally. She prefers android over iOS operating systems…shucks, right? I think everyone.

I am a bit upset because my iPad is down for a while. Deb is going to call You Break It We Fix it to see if someone can remedy the problem. My iPad won’t charge anymore and another charger will not fit in the space where the charger goes. Very frustrating and upsetting for me. I need my electronics to work properly and the internet has to be up and running well at all times as well. I guess we will go from there and use my cell phone for now as my means of communication until I get my iPad fixed or replaced. I am very upset, people! I am wondering what happened to it is questionable at this point.

Occupational Therapy

I had my first meeting with a occupational therapist today. It was to initiate what we had planned to do to get me going to more independent by getting in and out of bed alone and make it to the bathroom and back myself, transfer from the shower. My life feels like someone else’s life right now. It isn’t my life anyway. I have been very unhappy lately.

Dialysis Update

I will not argue how dialysis went today. I am now getting on the scale to weigh like everyone else. I stand on the scale after my walker gets me on it, then the walker is taken off the scale to weigh me and me alone. When I leave, I take my power chair close to the scale and stand up to weigh after taking the walker off the scale to weight myself alone then the walker is placed in front of me so I can walk backwards to the power chair and sit down and get ready to head to my ride downstairs. You see, I am trying to find a happy medium to get on the scale safely without my confidence being dropped to the floor. I fail at confidence right now.

Good Night

It is late and I need to say good night for now. Time to turn the sign to closed and lock up shop for the night. The weekend has begun and now I have two days at home and not worry about dialysis and appointments for my health. Good night, everyone.

I do wonder who reads my journal…

Today was not a bad day for me. With one more dialysis day left for the week—tomorrow, I am doing nothing today. I have watched Unsolved Mysteries, Dark Shadows, and Midsomer Murders all day. I did watch a movie titled The Swing, and that movie made sense in the description, but watching the movie, I couldn’t follow it very well. This movie wasn’t for me.

Jackie was here from 9:30 AM to 3:30 PM today. We watched TV together for a while, but we rested and did our own thing. I called Mercy Options back because I had rescheduled my appointment with the with the nurse prescriber regarding a mental health drug for me outside of Prozac I am already taking and being weaned off Seroquel with my primary doctor at SSM Health/St. Mary’s Clinic. I am leaving MercyHealth after finding a nephrologist there through Dr. C Taylor’s help talking to someone. My next appointment will be on February 1, 2024. That is my goal, anyway. I have been very unhappy with MercyHealth in the past two years now.

Nursing Home

For the past year and a half now, I have been afraid I am going to a nursing home because Dr. Hussli was going to keep me in St. Elizabeth’s Nursing Home because she wanted me to have 24-hour care. I don’t need 24-hour nursing care. I need care in the home. She was not and did not allow me to have a Hoyer in the home. She deemed it unsafe in the home when my caregiver Jackie knew how to use one in case a client had one. They are not deemed unsafe. Many people have them in her home. Jackie said I did not need 24-hour care in my home. I need time for myself, and I would never get out of bed with the aid of my caregivers anyway. We will be working towards getting to and from bed in my occupational therapy time at the rehab building on N Washington Street in the next few weeks so I have more confidence in myself. Right now, my confidence is very low. Occupational therapy starts tomorrow after evaluation.

Time to Say Good Night

Well, it’s time to close shop and lock up. It is going on to bedtime here shortly. I have had my supper, a turkey pot pie tonight, Millie kitty has a good nose for food, lol, and we had supper together. Been watching Dark Shadows and now watching Midsomer Murders on Tubi. I like John Nettles as Tom Barnaby. Watched shows with Neil Dudgeon as John Barnaby who happens to portray Tom Barnaby’s cousin in season 13 and is the last season for John Nettles. 😭👍🏻. I think Neil Dudgeon does a great job, though. The show has been on for 24 years or so. Anyway, time to say good night. Good night and God bless.

Talking About My Fears

I finally talked to Jackie about what was going on. I had my counseling session with my counselor Deb where we worked on finalizing my plans to get better emotionally. The fear that everyone wants me in a nursing home has been addressed to Jackie tonight. She said, ‘not everyone.’ I did not know who do not know who do not want me in a nursing home. Being at St. Elizabeth’s Nursing Home had me depressed and anxious, I cried a lot because my doctor Dr. Hussli would not let me go home to my emotional pet Magic. She wanted me to have 24-hour care and would not let me have a Hoyer lift at home. She said it would be unsafe to have a Hoyer lift at home which is not true. This is where Jackie, Julie M, and Mom decided to get me back home with the help of the nurses and staff at St. Elizabeth’s. Using a Hoyer lift in the home is not unsafe and one person can operate a manual Hoyer lift without it been unsafe. On November 14, 2022, I was home in my own bed. 

For the rest of 2022 and until November 2023, my bed was in the living room. Now since November 2023, my bed is back in my bedroom. I got a TV for my bedroom from Best Buy for $80. It’s a nice Amazon Fire TV! I love it!

Winter Storm Today

We have had another storm during the night. This time it was an ice storm, snow, and sleet. I hate this kind of storm in the winter. Although, I canceled and rescheduled my nail appointment, I did not cancel my counseling appointment. I could not even think of canceling unless my caregivers said to do so. I am glad that I didn’t have to cancel my appointment for counseling!

Counseling

I am at Mercy Options now for counseling. Today I had my second session. My counselor is named Deb. I can another Deb to my list of Deb names now, lol. We finished my assessment from three weeks ago, and my next appointment is February 6^th. A lot of emotions have been going on and I really do have something mental going on these days, and mental illness runs in my family on both sides. My Grandpa Clarence and Grandpa Karnopp both had Alzheimer’s disease in their lives. Scary! I am being weaned off of Seroquel because it hasn’t worked for me. The weight that I took off in the past 2 years now has been found. I am back to 186 pounds because in one month, Seroquel has put it back on. My primary doctor Dr. Taylor has me weaning off Seroquel for 14 days and put me Prozac for my depression. I am finally getting some sleep for the first time in very long time. I don’t remember my last good sleep. It has been a while—in the past year.

Even though I do not do New Year resolutions in the New Year anymore because I never follow through, I am conscious of my weight because of the kidney transplant and disease. My kidney lasted 31 years and I have been on dialysis since 2019. I go again tomorrow at 11:45 AM. Deb, my counselor will be working on some things. Mercy Options is the right place for me at this time even though I am having troubles with MercyHealth right now, and I will be filing some complaints in the near future. Dr. Taylor is at SSM Health, and I am transferring to SSM Health for my medical care once I am lined up with nephrologist there. Yes, I will be losing Dr. Anjum in the future. Jackie and I are not happy with Mercy Health. I will be sad for a while because I am leaving the only doctor I like at Mercy, my nephrologist. I have to do it, though. I have some complaints about the dialysis team/clinic as well. Mercy dialysis team and clinic may not like me after this, but I have to do what is necessary to be happy, and I’m not happy with Mercy Health. I don’t want to sue, but it’s possible I might. My mom is not happy with Mercy Health is areas either. Jackie lost her husband 9 days after she was told by Mercy Health to take her husband home to die when they would not let Jackie advocate for him to have an ankle and foot removed because it became black and blue from cancer. He died of cancer. She became my caregiver in 2022, the year I contracted Covid, got a hematoma, and ended up in nursing homes and AMA from St. Elizabeth’s Nursing Home on November 14, 2022, because Dr. Jennifer Hussli would not allow me to have a Hoyer lift at home, so the nurses at the nursing home ordered me one for the home, and I have been home since. Dr. Hussli said having a Hoyer lift at home is unsafe according to her, but nurses use one all the time for people who need them in the home. Caregivers can be single operators, but the nurses in homes would operate the lift together. Does that make sense? It is a rule in nursing homes that two nurses operate a Hoyer lift. It makes sense for me. Jackie, Julie M, and Deb learned to operate the Hoyer lift. Jackie was working for another company at the time while I was in the hospital and nursing homes, but she was let go because a client had lied about her sleeping in her spare room. An awful lie got Jackie fired! I guess some people are just not so nice. Jackie never slept in the client’s bedroom! Now, I allow Jackie to rest while working for me. So, I have some work to do for counseling therapy. I am looking forward to it to some point. I, personally think, why express my feeling to a stranger?

Weather Forecast Seen by Me

It is after my appointment this afternoon when I feel the snow hitting my face. Yep, I was out for two to three minutes out while it was snowing. The prettiness is being taken over by the ice that has turned into a slushy mess because the temperatures have been a 30+ record this week. Driving my power chair in the slushy snow really drives me into a state of mind that is negative energy in my head. I haven’t liked winter for a few years now. At my age of 54, I go out when I need to these days, and canceling my nail appointment was worth it. I will not drive my power chair out in crummy wintry weather. Although I have to wait for the days of spring to arrive, I can’t wait until winter is finally over. This year’s winter has been the worst winter I have lived in my life this far. I hate this winter.

Ok, I am dealing with a lot of tears right now. I am feeling that everyone wants me in a nursing home, and I am burden to everyone. Why can’t people except me for who I am? I’m very stubborn and I am 53 years old and set in my ways. Why do people, my dad, tell me to grow up when I am now an adult myself? No one can tell me to grow up without me getting defensive! I hate it with a passion when my dad tells me to grow up. He doesn’t understand my disability and never really has.

I am having difficulty accepting what has happened to me when I got the hematoma and the blood infection in September 2022. I have been using a walker for a few years now and haven’t been able to walk a marathon for several years. It breaks my heart remembering walking across town from the south side of town to the north side of town to school the last two weeks of my senior year in high school and further to the Stop N Go store on E Milwaukee Street n my early 20s. I walked everywhere and rode the buses from time to time. My feet took me everywhere! Now my feet can go a few feet without feeling wore out and pushing a walker. I don’t like the one that is at dialysis very much. It’s not a four wheeled walker that can lock the back wheels. Ugh! I don’t feel stable with any other walker that is not a four wheeled walker. It’s frustrating.

Clearing Things Up

What happened yesterday in the hallway has been cleared up this morning. My ears are hurting, and I feel yucky. I think I am catching a cold from change of weather temperatures. My legs and feet, affected with cerebral palsy since I was born, do not work and they were not cooperating with me. I felt warm and my mouth was dry, and my legs would not move, I slid to the floor because I felt like I was falling off my new walker seat. Jackie was the one who said out loud for my neighbors in the lobby to hear that she knows what I am thinking, NO ONE KNOWS WHAT I’M THINKING! She said I slid to the floor on purpose, and NO I DIDN’T DO IT ON PURPOSE! Heck, no!

Not My Brain Now

All night long, my brain was screaming at me, and I was doing was not fine. I told Jackie she hurt my feelings, and I did not appreciate what she said. I have a dialysis treatment today, and my ears are bugging me, and they kept me awake all night plus my manic state was fighting with me all night. My manic side of me screams out hatred and I think people do not care. I get scared that I will not live at home with my babies anymore. My babies are my 3 ½ year old cat Magic, and my 6-month-old kitty Millie. I just got her in December 2023 on the 9^th when Jackie and Debbie went the humane society to find a sister for Magic. With me being a two cat household mommy now, I am definitely okay with it. I never expected it.m, though. Magic needed a sister, too.

When I go into my negative mood of thoughts, this world is cruel. Who wants to be in a cruel world? I surely wouldn’t. I see how cruel people can be in real life, but more so on TV. I read about how cruel people can be as Satan takes over in their lives in murder, killing, and maiming other people and animals alike. If I could, my home would be filled with dogs, cats, and birds who have been abandoned and damaged in some way and survived their ordeal. I love wild and domestic animals. 

Dialysis Update

Dialysis went okay. The nurse and technician put Cathflo in my catheter at the beginning of my treatment today because of some common clotting in the venous line. The line would not pull at all. After 30 minutes, the line pulled beautifully, and dialysis continued on until 2:30 PM. The weekend has arrived! I will be out of here very soon—15 to 30 minutes my weekend will begin.