Health

The last full week of April

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It’s hard to believe April is almost over already. The whole month seemed to go by in a blur. This was my first full week working in the ER shadowing other employees. So far so good, I haven’t been squeamish at all.

Paul and I spent my day off walking around the NFL draft area. Too bad I am not a sports fan, otherwise I would go all out. Paul loves football but he doesn’t get all decked out. I mainly wanted to check it out to people watch. We wanted to get some food from the food trucks but the line was a mile long and there was nowhere to sit.

The last two days have been cold and windy. Yesterday was downright miserable with highs in the upper 40’s with strong winds and rain at times. My son’s band was set up outside to play last night and we were absolutely freezing. I could see my breath it was so cold. Today it will get up to 60 and it will be sunny, so it should be a better afternoon and evening being outside to watch my son play in both the bands he is in. I am not driving so that is even better.

Absolutely everyone is sick, but somehow I managed to keep my head above water. For once my body has not failed me being around sick people at home and work. Arabella and I are the only ones who managed to stay healthy. Ever since Arabella got her tonsils out, she has not been getting sick every time a cold wind blows.

Angel and Dan made their way down to Georgia with their camper where Dan will be working the next week. They made the trek on Easter day. Dan drove the camper down in his truck while Angel followed him in her car. On the way, Dan’s truck broke down. He is driving a truck from the 1980’s. Dan’s dad is a mechanic who taught Dan everything about fixing vehicles. Thankfully they were able to make it to the campsite they are staying at. My daughter and her husband live a very frugal life which I am very proud of. But sometimes I just have to roll my eyes and laugh a little as they don’t have to live that way. Some of it is because I know we are the same way.

A couple things happened this past week that are worth noting. One day was particularly rough as I had an 8 hour day of reading policies for work. Over my lunch, I had a dentist appointment. They took my blood pressure before the cleaning and it was high. I have been checking it at home and it is still higher than it should be. I’ve also started getting headaches every day. Nothing major, but I never had headaches before. I am keeping an eye on things but I don’t have time for another problem. I’m too busy worrying about other things, like my mom’s blood pressure. Her doctor wanted her to come in and get tested as it has been running high lately.

Next week my mom has two doctor appointments. One is for a PET scan over two hours away from her house. My sister-in-law was going to take her but she backed out. Since it is on my day off next week, my husband and I will be taking her. I am not looking to 5+ hours of driving. I am really hoping to get some answers with this test as her MRI results were inconclusive. I still haven’t found anyone to take her to her other appointment yet.

The other notable thing that happened was that I got asked to be one of the comedians for a comedy show on Mother’s Day weekend. Patrons will need to pay to get in and I will be getting paid to be in the show. Not too bad for someone who just started doing stand up comedy a couple of months ago. Who would’ve guessed?

This weekend I am looking forward to my son playing in his bands. The biggest challenge will be finding a work/life balance trying to take care of my mom’s health without neglecting my own. I do have some fun things planned during the week such as trivia night and stand up comedy. I will plan on making time to do another update next week.

Spring’s new start

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I started my new job yesterday. For the rest of the week I will be working remotely doing a new employee orientation. There are 60 some other people in the class with me. This will be the biggest company I worked for. I never thought at 50 I would be starting a new job in the healthcare industry, but here I am.

Since I last wrote, I took my mom to two of her appointments. At the appointment with the psychiatric nurse, I requested my mom to be taken off a medication that is hard on the brain as requested by the neuropsychiatrist. The next appointment was the first appointment with the neurologist. The neurologist seemed very concerned about the condition my mother is in. She only answered 11 out of 30 questions correctly. She was unable to think of any current events. She told the doctor we were going out to eat afterwards as the current event. The appointment lasted close to two hours. It was stressful to see how poorly my mom answered most of the questions. The doctor also said my mom had a movement disorder typically seen in the later stages of Alzheimer’s. Then the doctor ordered another slew of tests starting with a MRI.

Afterwards, my mom took us out to eat. Paul picked the restaurant as a reward for helping her keep track of Matt’s financial records. I felt bittersweet in the moment. I tried to enjoy the time with my mom but the doctor’s words rang in my head to start looking at care options soon. Her condition is not going to improve. In fact, quite the opposite is true. After going out to eat, we visited Alex at work in the music store.

The doctor said I should make sure my mom is taking her medication correctly when we got back to her house. Her pills were a mess. She had only one pill container where she put both AM and PM pills into it. I tried to help her straighten everything out but this only made her angry. She yelled at me to just leave her alone, but later apologized. I called her doctor as well because she was taking a lot of supplements and I was concerned. The whole experience resulted in another trip over with a new pill sorter with AM and PM slots and the removal of some supplements she was taking way too much of.

The trips to the doctors and bad news really took an emotional toll on me. I felt more empathy towards my mom than usual once I realized how sick she was. At the same time I felt conflicted in my mind over how toxic and difficult our relationship has been. Not everyone has close relationships with family they need to caretake. Something to be mindful of when I work in the ER.

By Friday I was ready to get out of town and make the drive to Milwaukee to see Alex’s band perform at a brewery. The venue was packed, and not just with people. There were a lot of dogs inside, kids running around, and someone even brought their pet pig. A younger man even brought his puppy over to me to hold. They said animals were allowed in the brewery because they didn’t sell food inside. However, they had food trucks set up outside and you could bring food in.

Paul and I stayed in a German Inn. The building was a hundred years old. We ate German food there and each had a flight of German beer. Everything was excellent. Then we took an Uber to see our son’s band play. I am so blessed to have two children who are very talented musicians. It’s amazing to see an audience adore them. We had a great time watching the band. Then afterwards we went to the bar with the band. We didn’t get to bed until 2 AM. I felt bad in the morning because we were probably really loud coming back to our room as I could hear the other residents awake early in the morning. It was a nice little getaway before work started though.

This weekend we will be seeing Alex’s band again and going to a film festival. I only work half a day on Friday and then I am going to get my 7th tattoo. I am getting outrunning my demons tattooed on my leg. This is something I was planning on doing once I finished my memoir. (Although, at this point, I can’t guarantee it is 100% done). However, this Friday would’ve been my grandma’s 100th birthday. As the most positive influence in my childhood, and the reason why I am here today (both literally and figuratively) I am also getting a tattoo on her birthday in remembrance of her.

My grandma passed away 16 years ago already. I am going to throw her a party by lighting every candle in my house surrounding her pictures, watching old family videos, and just sharing stories and remembering the good times with her. I am going to make cookies using her recipe because every time anyone would visit a jar of cookies would be waiting for them to take home. I want to say I will be making her favorite foods, but I really don’t know what they were because she would always make my favorite foods.

This past week I experienced a lot of ups and downs. The sadness of my mom’s deteriorating health. The joy of watching my son play in the band. A small getaway. Starting a new job in a new career. Not having the time to care for others as much with the start of a full-time job. I’m not sure if this is good or bad yet. Arabella had her doctor appointment today. This was the first appointment I didn’t go with her to in over a year. The doctor switched up her meds a bit. He also put her on a weight loss drug as her anti-psychotic meds are making her gain a lot of weight. But guess what? She managed going without me. It’s going to be a lot harder with my mom. But maybe other people need to step up and worry about it, not just me.

April begins…

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I am scheduled to start working in less than a week and I still haven’t gotten my schedule yet. As a planner, it’s been driving me crazy. My mom and Arabella have doctor appointments the next couple weeks and I don’t know if I can take them. Tomorrow my mom has her appointment with the psychiatric nurse and the following day she has her first appointment with the neurologist. Thankfully, I will be around to take her to those appointments. Unfortunately, my mom doesn’t live all that close so just the driving to appointments takes 2 1/2 hours of my time. Hopefully we will be closer to answers on the type of dementia my mom has and closer to options for treatment.

My follow up appointment with the doctor went well to check on my thumb where a chunk of nail down to the base was removed to get out a sliver. No signs of infection. However, it is going to take months to heal if it ever does heal properly. I will still need to wear a Bandaid as there is a thin portion that remains which tends to get snagged on clothing.

I got the sliver while vacuuming against a wood railing. Last week after cleaning the house the switch on our well pump went out. Mind you this happened at 5 PM on Friday while I was rinsing veggies to make supper. We ended up without water for the weekend. It would work briefly if someone tapped on the switch. So just enough to hand wash the dishes but not enough to run the dishwasher. Ironically, after the water turned off inside it started pouring outside. We had heavy rains, thunderstorms, sleet, some snow, and an ice storm before the system left late Sunday night. Monday morning service people came out to do their magic and we have water. Today I cleaned the house again. Hopefully nothing bad happens. I’m starting to doubt a little cleanliness never hurt anyone.

Despite the lack of running water, the weekend went well. I finished writing my memoir. I know I’ve said that several times and then a lot of things happened. But I think this time I am really done.

This week I am looking forward to doing stand up comedy again. Then Paul and I are going out of town for the night to see Alex perform with his band. It’s one little last hurrah before I start working next week…if I start working next week. Hopefully I’ll get my schedule soon!!

Hopefully the next time you hear from me I’ll be complaining about my new job. Just kidding. I used to really get into April Fool’s Day jokes. But it really doesn’t interest me too much anymore. Maybe that’s a part of being a ‘mature’ woman.

February update

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I passed the proctored exam I needed to take to get to the next step of the hiring process.

It wasn’t an easy test and I was nervous about passing it. Starting a new career at 50 can be intimidating. Everything is so different now. I have yet to talk to an actual person about the position. Even taking the test was a whole new experience for me. The last time I took an important test was on paper with a number 2 pencil. I didn’t have a cell phone to lock up. I didn’t have to lift up my hair to show I wasn’t hiding any devices to cheat with. They even measured my wedding ring because if it was larger than a certain size, it would have to be removed.

I left the test site feeling out of touch. Most test takers were half my age. I had overdressed while the other test takers were wearing comfy clothes like oversized sweaters and jogging pants. My confidence dipped. Although I have a plethora of life experiences, I am not young and fresh with all the latest technology. But I have other things to offer. I keep telling myself that. It has been a month since I applied and I am still waiting. It’s been a week and a half since I filled out the background and credit check paperwork. I have no worries about that, but my patience is running thin as I check my email several times a day to see if I hear anything.

I just turned in all the paperwork to be my brother’s successor guardian. My mom’s functioning has continued to decline rather rapidly. She no longer makes a lot of sense when I talk to her. She has been forgetting to pay some of my brother’s bills on time. A week ago, Matt received a disconnect notice if his bills weren’t paid for his portion of the group home. It’s been stressful as my mom has been handling all of Matt’s finances and I don’t have any intentions of doing so. I would like to be more hands off. Matt’s roommates in the group home have a payee set up through the county and receive transportation for appointments. I would like to do that. He doesn’t live close by and with going back to work, I won’t be able to do everything.

Thankfully my mom has her neuropsychological evaluation next week. We have been waiting for months for this appointment. I wonder if there is still time for her to get treatment that would help her or if her dementia is too far advanced.

Meanwhile, Angel moved out to the east coast for the next couple months to be with her husband who is working there. Thankfully she is able to work remotely. They bought a camper to travel in for work. It’s an exciting adventure for them.

Alex got involved with a new band and he will be touring the west coast for a couple weeks this summer. He is planning on starting up a music studio and moving out. I wish I could travel coast to coast with my kids on their adventures. But it is not going to work out. That’s okay though. This is their time.

Arabella had her doctor appointment last week and she is on the road to recovery. She is still having some side effects from her meds, but continues not to suffer from symptoms of schizoaffective disorder. She still has her job and boyfriend. Life for her has been stable and that is all we are hoping for right now.

It has been very cold and snowy here as of late. I am ready for winter to end.

Handing over the baton

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A little over a month ago, I spent two full days in Wisconsin Dells at the waterparks. I told you about the trip, but I don’t think I mentioned how much pain I was in. After two full days of walking, I could barely walk. My foot was hurting a lot. I never really noticed how inactive I’ve gotten until I had to be active. So many times I chalked up my foot pain to bunions, arthritis, and fibromyalgia. But this time I felt something was really wrong because one foot was hurting much more than the other.

The following day I reached out to my doctor to get an appointment with a podiatrist. They questioned why I wanted a referral. I told them that I was still having foot pain like I mentioned at my last physical in November when they took X-rays of my foot. At the time, my doctor couldn’t find anything that would cause a lot of pain. It took me a month to get an appointment with the foot doctor.

By the time I got to my appointment, I was feeling a lot better. But I went in for another set of X-rays and waited over an hour to see the doctor who was behind schedule. I thought perhaps I was wasting his time. When the doctor came in, he told me I had a stress fracture. What??!?? How did that happen? I was going to have to wear a boot for 6 weeks and then come in for more X-rays to see if it was healing properly.

I have no idea how I fractured my foot. My feet started hurting when I was running long distance training for a 50k. But that was years ago. And aren’t your feet supposed to hurt if you are running 30 miles on them? The only other thing I could remember happening was having a large water bottle fall onto my foot. But again, that was years ago. How did I have a fractured foot and not even know about it?

It’s been 3 years since I ran. Gradually I stopped going on walks too because it hurt and I was having GI issues. I went from thinking I was wasting the doctor’s time to being angry with myself for not going in sooner. Hopefully now it will finally be able to heal and I can get on with life.

I stopped running right after Angel moved back home and started running. We enjoyed running together for several months. This weekend she will be running her first marathon and I will be supporting her every step of the way. I was instrumental in starting the fire that ignited her passion, and now I will be handing over the baton.

Safe for now

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I feel like I got my daughter back. The daughter I had before everything started. Before the suicide attempts, the cutting, sneaking out late at night to meet up with strangers, the delusions, the depression, the mania, hospitalizations, jail, and all the other struggles I’ve been writing about the past 4+ years. We are getting along better than we have before.

Everything changed once she was on the right medication. At her last hospitalization, they put her on a mega dose of the powerful anti-psychotic Haldol. The doctor has been slowly trying to taper her off the medication. In the beginning her doctor also put her on Lithium as a mood stabilizer. She has been diagnosed with Schizoaffective Disorder which is a mix of schizophrenia and bipolar. After several months, her doctor tried to take her off of Lithium thinking an anti-psychotic would be enough to manage her symptoms. After a week off of Lithium, she started to hear voices telling her to kill herself. Thankfully she communicated what was happening to her with me. I called the doctor’s office and they put her back on Lithium. Once again she was stable.

At the last appointment, the doctor tried to reduce her Haldol. He wants her off of the medication altogether. I asked the doctor if the hospital made a mistake by putting her on Haldol in the first place. He said when Arabella was admitted to the hospital she was very, very psychotic. If a psychiatrist says that it must mean a lot more than usual. They had her on ten times the average dose. That’s why when we visited her in the hospital, we were traumatized to see her because she was shaking and couldn’t talk right. Her jaw was tremoring and her words were slurred. They put her on another medication for side effects of Haldol and that caused her to have vision changes.

At the last appointment, the doctor tried to taper Arabella down to a high dose within the normal range. She didn’t respond well. She started to have intrusive violent thoughts. He decided to put her back on her dose previous to her last appointment. And once again, she is stable and enjoyable to be around. If it was up to me right now, I would like to keep her on the medication she is on now for the rest of her life. But the doctor said that after being on Haldol long term she will very likely have irreversible side effects similar to the ones she had before on the mega high dose. By age 30, the medication that is saving her now will cause her to be physically disabled by her condition.

Is it worth it? We might not have another choice. The doctor said it’s going to be a very long process to get her where she needs to be. But as for right now, it’s wonderful to have my daughter back.

What to write

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I haven’t been feeling very motivated to write since I finished my book. I say finished loosely because it is going to need more work. Nothing major though. I hope to have it ready to publish by early next year.

I think I need to revisit my goals. What do I want to do next? Try my hand at fiction? Or am I happy to keep writing on a personal blog although with my book it seems like I told everything I wanted to tell. I think I want to keep writing in some capacity, but what?

There are always things going on in my life to write about. I guess I wasn’t meant for a life of mediocrity. Sometimes I am jealous of people who live an ordinary average life who can join groups on Facebook called the dull women’s club. True story, I looked at some of their posts and some people just sit around watching their garden grow. I could only post about watching my plants slowly die.

I figured part of my problem is that I was never shown how to care for plants. My mom got rid of all our houseplants when she went on a kick that my brother Matt was allergic to them all. Last summer I bought a banana plant and the only way it lived over winter was because a friend showed me basic plant care 101.

My grandpa had a nursery when I was young. One day, he pulled out a dying shrub he was going to get rid of. I decided I was going to ‘rescue’ the shrub. So I planted it in my backyard and watered it everyday. One day I went out to water it, and it was no longer dying. It even looked twice its size, green and healthy. It was a miracle, I saved it. But now as I am older I realize my grandpa probably had something to do with my unrealistic expectations about plant rescue.

This is totally going in an unanticipated path. I do have a lot of stories to tell, but we’ll save them for another rainy day. There have been a lot of rainy days as of late. The arthritis in my knee has been acting up for the last week or so. I may soon be able to predict the weather like my relatives of old. My arthritis is acting up, it’s going to rain. How time changes things. Five years ago I would be trying to get in a run before the storm. Now I sit around and complain about how hard it is to walk because my joints can feel the rain coming. It’s hard to think I will never be able to do something again I used to enjoy so much.

Maybe I’m just having another mid-life crisis. I will be 50 in less than a month. It’s hard kissing my 40’s good-bye. Fifty is old. I’ve gained weight. I can’t see worth a crap. Some days I have a hard time getting around. Arthritis. Grey hair. I don’t look or feel young anymore. I’m at an all time low, but it’s not going to get any better. But I’m trying not to complain about it too much because those people are just a drag to be around.

Otherwise, things are going okay. Arabella is stable on her medicine. On Monday, she has a goal planning appointment with her new case manager to help her gain independence. She literally hasn’t visited with friends for weeks and spends her day following me around. I don’t mind all that much. I’m trying to enjoy what time I have with her. She never liked me before so in that way it is kind of nice. I know I’m cool and all, but I want much more for her than that.

My other two kids, Angel and Alex, are not getting along. That has been stressful because I hate feeling like I am in the middle especially with a holiday weekend coming up. Not to mention dealing with the extended family. Then having a party and turning 50 right after that.

I have been feeling pensive and melancholy lately. Maybe I just need a little sunshine.

On caring

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It’s been four years ago today since my daughter Arabella’s first suicide attempt. In this I am rejoicing because she is still alive. It’s been a long hard road, but here we are.

Yesterday, in the early morning hours of Valentine’s day, Arabella had her tonsils removed. So far nothing crazy has happened, unless you count the nurse splattering blood all over the floor with her second attempt to start an IV. All of that makes me quite queasy, along with the thought of anyone I care about being in pain.

I was asked this week if I considered getting medical training to care for my parents in their home. Nope, that thought never crossed my mind. Then I felt the guilt of maybe that thought should’ve crossed my mind. I just don’t think I could do it.

I’ve been a caregiver since the beginning of my time, while I myself was still in the need of care. The earliest (traumatic) memory of that is of watching my three younger brothers by myself in the lake when I was six. My youngest brother almost drowned. I was always the ‘second mother’ since I can remember. I was my mom’s ‘best friend’ and I had to take care of her and make sure she was okay while I went uncomforted.

As a teenager, I was providing care for my autistic brother Matt who was less than two years younger than me. I was also helping with showering and personal care. My mom relied on me more than she relied on my dad when I was yet a child. Starting at age 12, I started working as a babysitter for about a dozen neighborhood families.

In college, I worked as…you guessed it, a caregiver. I was still a caregiver for my brother Matt along with a man with schizophrenia and a woman with dementia. Two months after college graduation, I got married, and two months after that I was pregnant. I never questioned whether or not I would be a good mother. I was actively parenting my own three kids from 1998 through 2021. While actively parenting, I became a babysitter to several other children, one of whom was in a wheelchair. I also provided care for my Great Aunt Grace who had dementia which also included bathing and personal care.

Then in 2020, exactly 4 years ago today, my daughter developed a serious mental illness. Even though she turned 18 in 2021, I will probably have to provide care for her in some capacity for the rest of my life. I will also become the guardian of my brother Matt when my parents can no longer do it. Last week we had the conversation of putting me on my brother’s account so I can write checks if my parents are unable to so he can continue to stay in his group home without disruption.

Right now my mom seems to be slipping into dementia, but physically she is in great shape. My dad is of sound mind but in horrible condition physically. The only thing normal about my parents is that they both want to stay in their home as long as they can. They don’t want any caregivers to come out to the house because they don’t trust that people won’t steal from them. I have been helping them check what their options are. I am totally fine helping them manage their care and making sure they are in a good place, but I don’t think I would be willing to be their caregiver.

Some may say it’s selfish, but I have my own life and my own problems. This week I started a new medicine for ulcerative colitis. I have my own health issues. But even if I didn’t, I still wouldn’t want to do it. I can’t recall one single good memory with my dad. He was abusive and his issues with addiction pushed most of the family away. If he was a great dad, I would bend over backwards to help him. There is truth to the old saying of you reap what you sow. When I was younger I hungered and thirst for justice. But not any longer as I see it playing out before me just as it was meant to be.

There is a reason why some old people are sitting alone with no visitors at the nursing home. No doubt, it is incredibly sad. I wish it wasn’t that way either. But if you never put any money in the bank, how are you supposed to take any money out?

I try to put everything I can into my relationships that are meaningful. Everything else can take the back burner.