I think I'm getting the hang of this blogging every night again…

 Monday May 11 2026

Liberty came in, fed and toileted the dogs, then got me dressed and up in my chair. I had a follow-up visit with Dr. Nweale. It just so happened that the day before, I had blood in my urine, so it came at a perfect time. I called my urologist, and I told them, and they may have an appointment for tomorrow to see him. Of course, I asked GPT, and they dated a lot of horrible things that it could be; I should know better by now, but I ask anyway. 

I also had an appointment with Dr. Cheng, regarding my spinal cord injury, but I had to reschedule cause I wasn't feeling very well. I was going to see him to follow up on what I was having problems with, but it just so happened I was having bowel problems, so I rescheduled.

I took Kona for a 4-mile cruise up and down the street, then took Dude for 2 miles. It was a beautiful day, so I ended up sitting outside for a while and enjoying the sun with the puppies. I came back and played on the computer for a while until Ashlyn came in. She's in personal care, and she sent me up to my computer and went home. She's had a really bad toothache since Friday, and I feel so bad for her. She tried everything, but I had some original Listerine, the brown one, and I got to rinse out my CPAP machine. She tried some, and she said it worked better than anything else that she had tried. I hope she can get it fixed soon because she just looks miserable. She went home, and I did my usual relaxing and played on the computer.

Tuesday

Becky came in at 6 AM and took care of the dogs then got me some coffee at breakfast, we had a bunch of stuff that we brought in from the garage in the hallway outside by door so she put that away and cleaned up the counter in my bathroom. Liberty came in at seven it got me dressed up in my chair. Stanley took me to my urology appointment. There was no more blood in my urine, of course, so they told me that it just happened sometimes and not to worry about it, but they will schedule me for a bladder scope and some Botox for my bladder to hopefully stop it from leaking. Becca came in, and we did some meal planning. Since she only cooks for me, now I feel like we never have time to catch up at all, and so it was fun shopping with her. I get to survey what kind of things they have in the store for future meal planning. When we got back, I took Kona out for a 2-mile cruise up and down the street. We came back home, and Dude and I went for our slow and steady cruise up and down the street. I kicked back in the front, hung out with Stanley, and watched the kids on their new climbing-and-swinging toy. It was so hot outside I was burning up, it takes me a while to cool down when I get overheated because my thermostat is broken. I took a little nap, then woke up freezing; that's how it always worked for some reason. Ashlyn came in, and I got a hot, long, soaking bath, and it felt great. She put me to bed and then left. What's it again? I fell right to sleep.

Wednesday

Becky came in. I took care of the dogs, and they got me some coffee. How did it end up that the dogs get taken care of sooner? They are adorable, so I guess that's why! She got me some coffee, I love my body coffee! Yesterday, McKenzie red-shampooed the carpet in the living room. Somebody put a cream-colored carpet in there, and it's so plush. That's basically where the kids and the rest of the family hang out, so it gets pretty dirty. Also, I think a couple of dogs went to the bathroom in there, so now every dog that comes to the house has to go in there and christen it. I hope shampoo puts an ad for that.

Chris came over to work out the door to go outside from my room and the deck. I am so excited about this. The last couple of days I just lay here and watched the sunset and it's so beautiful. I can't wait to sit out on the deck and just enjoy the sunset with my tea and mini charcuterie board. TJ at Brooklyn came by, and they were going to shampoo the area rug, but I was a little nervous about having it shampooed while it's on the floor. I didn't want the floor to get wet and ruined, so we decided to wait till next week to power-wash it outside. I'll let the sun dry it. They took me to the store where they sell all the stuff that gets returned to Costco. They have some really cool stuff there, but for now, I've tried to hold myself back from buying anything. I did get a couple of things that I needed, and got Nori and Jude a couple of really cute outfits. After that, we went to another discount place, which was kind of small, and although we found a few things we would like to have, we didn't get anything. They came home, and I took Kona out for a dice 2-mile cruise. We left her hardness on her, and by the time Stanley came in for a doggie last call, she chewed it off from the front. I hung out in my bedroom until Ashley came in we did some personal care and she left, while I'm on my side I love watching movies and tonight I saw a really good one call the best of me, I watched it twice it was so good. I caught up with my blog and then went to sleep watching cops with body cams.

Thursday

Becky called in sick, another one of her migraines. I've never had a migraine, but I heard that it's like an ice cream headache that doesn't go away. She didn't text me, but she texted the dream team group text that she was going to take the dogs to Naomi's for me after Amy left.

I texted Naomi to let her know that the dogs would not be going to her place today,y and my text with Naomi is a group text with Stanley,y so he brought me some coffee. Amy came in to give me a massage. My shoulder has been really bothering me, but I had her do my legs because I'm afraid of getting my blankets and shirt messed up and then having to stay like that for the rest of the day.

After Amy left, Stanley brought me some egg casserole and half a bagel, my favorite breakfast. Brooklyn saw the post and came in to put me on my side, old reliable! She left, and after a while Stanley came back in to tell me he had made a fresh pot of coffee, so I had some coffee with celery and cashew butter. My spinal cord injury doctor told me to have two sticks of celery with each meal. 

I'm so glad to have the chicken salad and cashew butter because they're snacks I like. We only put half the mayonnaise in, and the other half is cottage cheese, so you don't even know the difference.

Brooklyn came by and put me on my side for the day. It was a long day, and starting to get a little uncomfortable staying on my side, I've been trying to get up every day. When I don't get up, I get really antsy and sorry. After I played games on the computer, watched some WebCam cop shows, deleted email, and shopped for something I can't buy, it was finally 9:30 PM, and Stanley came in to put on my CPAP mask, take up the dogs' water, and take the dogs out one final time before everybody goes to bed. I talked to ChatGPT a little bit, and then I fell asleep.

Friday

I usually wake up about 2 AM, and I'm super cold. I share a thermostat with my nephew, niece, and their baby in the next room. When I go to bed, I'm usually warmer than after I fall asleep. I wake up really cold. I have a heating pad that I wear on my chest, so I can turn it on when I get cold, but Dude sometimes decides that he needs some attention, and when he pushes on my arm, the remote falls off, and there's nothing I can do. A couple of times, when I couldn't stand it anymore, I called my brother and woke him up. He always has such a good attitude; he never makes me feel like I'm bothering him. I know things will probably change when he and his wife move out, and I am not looking forward to it. I'm hoping maybe I can find a caregiver, friend, or retired nurse to stay here and take care of me.

Becky came in, took care of the dogs, and then got myself some coffee. I noticed that the dogs are always first. I make them my first priority. I empathize with them and feel bad about the wait. That's not really true. I usually have her turn on my heating pad if it's not already on and heat me up a rice bag in the microwave. That is the best feeling in the morning, feeling the rice bag on my neck and my face too, but it only lasts for five or 10 minutes, and then we have to do it again. After coffee and breakfast, she got me dressed and up in my chair. I went to hang out with my family for a while. The kids are getting to the age where they're all talking, and some of the stuff that comes out of their mouths is so funny and precious! When I end up staying in bed, I feel like I miss a lot.

I took Kona for a 4 mile cruise up and down the street, down to the end of the street and back is almost 1 mile. I slept quite a few neighbors up and down the street, most of them older, and they are all very sweet. I came home, rested my arm for a bit, then took Dude out for his 2-mile cruise. I never thought I'd see the day, but he looks to me like he's lost too much weight. I sat outside for a while; it was so beautiful, and I could hear the waterfall and the birds chirping. I just lay back in my chair and took it all in. I always wanted a pond and a waterfall, and I bought a couple online, but this is amazing! I'm definitely going to push it back and make the pond bigger one of these days. If I ever sell that other house, I have a whole bunch of ideas that I want to do here; this is going to be my forever home!

I procrastinate way too much in the morning. It feels so good to be nice, toasty, and warm, and that's when I sleep best. I keep telling myself I'm going to have one cup of coffee, get dressed, get up, then eat breakfast. I'll have another cup, but I've yet to start that. I'm going to need to when it gets really hot because I can't stand this heat here. I'll need to get up early and get everything done so I can come back feeling great that I got everything I needed to do, and my dogs are exercised and happy. 

Ashlyn came in, took care of the dogs. We did some personal care, and she got me some tea and dinner. Ashlyn washed me up, set me up at my computer for the evening, got me a snack, and then went home.

Stanley came in at 9:30 p.m. And I decided not to wear my CPAP mask. I know I should wear it every day, but sometimes when I get annoyed, it just makes everything worse, and then it ends up leaking air, and I can't even be more frustrated. I don't see that out loud because I mean, there's a doctor-ordered thing, and everybody else that passed away, it seems to be OK with it, and I'm trying really hard. After a while, I fell asleep.

Saturday

Brooklyn came in, fed them, took the dogs out for a toilet break, fed them again, and gave them water. My bed was soaked. I'm so tired of having bowel and bladder problems. I am trying to just face the fact, and I'm getting older, and my body is slowing down, I can't believe that next month I am turning 65. Sometimes when I look in the mirror, I see my mom staring back at me, and I think, "What happened??"I was always told that I don't look my age, even though I put my body through hell in my life. Maybe this is just me overthinking. I feel like I started really noticing my age when I moved to Oregon in 2022, but then I see my friends from Santa Cruz, and they look just as old. I even went and got some lip filler, eye filler, and filler on the side of my mouth. I told the lady I did not want to have big duck lips; you can't hardly see my top lip, so I wanted it to show, and it also got rid of all of the wrinkles from all those years of smoking. Sure enough, I got out of there and took one look, and there were those duck lips, everything else looked the same…wrinkled and saggy. And I didn't realize it was gonna cost me $3000, when I first moved to one of my caregivers, who took me to a yearly event they have at the spa, and at that time I thought I had money to throw away, so I had about $5000 for hair removal, facelift, stuff like that from there. I thought I was doing really well until all of a sudden, my gift card was empty. I was so upset that I haven't gone back, and I don't know if I will. I cruised the dogs; actually, I had to take off my Sherpa because it was so hot. I've been waiting for these days. I do love being able to lie in my bed and watch the sunset to my left. There are a lot of windows in my room, and I love them! All the windows in my room are only half of one window opens. I don't understand how you could have all these beautiful windows and none of them open? The hallway, the library, and the living room are the same. I like to feel some breeze, so that's what they are definitely going to do: have a couple of the windows in each group of windows made so they can open. I guess one good thing out of it is that I haven't seen a fly, bug, or mosquito in my room. I have seen spiders. When we took down the drapes, there were so many spiders and spider eggs, I remember not sleeping for quite a few nights cause I was looking at the ceiling for spiders to descend on me. I remember seeing a couple of them coming at me, and I flapped my arms like a crazy woman and screamed, but I think it probably just piss them off.

Brooklyn came back in. She does double shifts on Saturday and Sunday. Once again, my chair and I were soaked, so we gave me a bath and put me back to bed. I should've called my urologist, even the fact that I have a urologist just makes me sound old? I didn't even think about it on Friday because I didn't have a problem, and then, of course, it started on Saturday, so now I have to wait until Monday. I went to bed, and she packed towels around me just in case. I just wanted to go to sleep and wake up in the morning without any problems. Eventually, I fell asleep.

Sunday

Brooklyn came in add breakfast, I LOVE blackbear diner especially for their sausage patties, I wish I could find the recipe somewhere I'd have them made right here at my house…I would eat them for breakfast, lunch, and dinner, and never get sick of them. But it was a really good breakfast. I usually get two poached eggs, an English muffin, sausage patties, and home fries. I eat half of it on Sunday morning, and then, to be honest, I put the other half in the refrigerator to eat the next morning, but I always forget, and it ends up getting thrown away a couple of days later. For a while, I was going to church with Stanley but my bed feels so comfortable in the morning. The people there are so nice and friendly that quiet place with all those people, I get such anxiety, and I either play Candy Crush or fall asleep. These days, when I fall asleep, I wake up with a big snort that's not making me any friends. TJ came over with Brooklyn, and they took me to a store that sells all the stuff people bring back to Costco at a discount…what?? How come I never do anything about this store? Before we head home, they took me to another discount store. Usually, I love to get out and shop, but until my house is sold and I have a little bit of money in the bank, I have to hold down my spending. We hung out outside by the waterfall for a while, and when they left, I took Kona out for a 4-mile cruise, and that took Dude for 2 miles. I thought it was getting pretty hot, I was glad to get inside and turn up the air conditioner. It took me a while to calm down because I was a little overheated. I keep hoping one day I'll be able to figure out my thermostat, until then, I just keep getting overheated, happy, thankful when my body cools down.

Brooklyn came back, took care of the dogs and me, and then went home to rest up for another crazy week. I watched TV until I fell asleep.

Hospital Stay Summary

In the last several months I've been having a really hard time with my bowels, because of a spinal cord injury I've had for 30 years and an SCI disorder called Autonomic Dyslexia. ⚠️ What the Heck Is Autonomic Dysreflexia? (And Why Should You Care?)Autonomic Dysreflexia (AD) is when your nervous system throws a full-blown tantrum — usually if you have a spinal cord injury at T6 or above.🎯 Trigger warning: Stuff like a full bladder, constipation, tight clothes, or a wrinkle in your pants can set it off. Yes, a wrinkle.🧠 Here’s what happens: Your body senses a problem below your injury, but your brain can’t send back the “chill out” signal. So your blood pressure skyrockets, your face sweats like it’s at a BBQ, and your head pounds like it’s auditioning for a rock band.

Common signs you’re in the AD danger zone:

😤 Headache from the underworld

🔥 Sweating above your injury

🌡️ Flushed skin or chills

😵‍💫 Nausea, blurry vision, feeling like you might explode

💥 That “my body’s going DEFCON 1” vibe

🆘 What to do:

Sit up (gravity helps drop your BP)

Fix the problem (empty bladder, fix the wrinkle, check your bowel)

Yell for help if you need it. (Or text your brother, like I do.)

Bottom line: It’s not just annoying. It’s a medical emergency. Treat it like one. You deserve to feel safe in your body — even when your body is trying to throw a rave without permission. 💃🛑.

Early on in the injury it's not that bad but as time goes on and as you go through it more and get older it worsens.

Here is a little bit about my journey the last couple of months:

Blog Entry: My Stay at Salem and Santiam Hospital – December 2025–January 2026

Let’s talk about what happens when a missed bowel program becomes a full-blown hospital saga — and why something as simple as a call button can change the entire outcome.

Saturday, December 13 – It All Begins

Last Monday started out unremarkably, which in my world counts as a win. We did my usual bowel program and got what I would generously call an acceptable amount. Not a victory parade, but enough to declare success and move on.

Wednesday night? Not so much. Barely anything. Friday? Nothing. I was concerned, but deeply practiced in hope-based denial. I told myself, “It’ll sort itself out,” even though it never does.

At 4 a.m., I woke up knowing my body was about to betray me. I threw up, felt better, and went back to sleep. By 6 a.m., my caregiver showed up and did vitals: low BP, high blood sugar, low urine, and yes, more vomiting.

She said what no one wants to hear but everyone eventually accepts: “I think you need to go to the hospital.”

We called an ambulance. For once, I was taken straight into triage. My blood pressure was bouncing between sky-high and basement-low. They admitted me “just for the night,” which of course became multiple days.

Welcome to the Hospital Loop

Imaging showed things had moved into my colon, so they decided to do what I already told them works: suppository + digital stimulation. The suppository was placed. They said they’d be back in 20 minutes.

Two hours passed.

I started sweating, shaking, and getting a pounding headache — classic autonomic dysreflexia. I reached for my call button… only to realize it had been moved out of reach when they turned me on my side earlier.

So I did what any independent quadriplegic does in a hospital: I texted my brother and asked him to call the nurses’ station. He did. The nurse finally arrived.

“I’m having AD. My blood pressure is probably 200.”

She gave me the Look™️ — the one that says, “This patient is dramatic.”

It was 200/140.

She evacuated my bowels, which produced a full-blown gas explosion. She looked at me and asked, “What do I do next?”

I told her: “Set a timer. Rest ten minutes. Try again.” She left the room.

Eventually, they gave me lorazepam — hospital-speak for “please dissociate quietly now” — and I passed out. I had another blowout later that night, but finally got cleared for a full menu. They forgot butter and jam, but I wasn’t about to die on the dry toast hill.

I left exhausted, frustrated, and yet again reminded that I’m often the most informed person in the room about my body. The nurses were kind, just underinformed — and didn’t ask enough questions.

January 16–21: Round Two at Santiam Hospital

Just when I thought we were in the clear, I was back in the ER with abdominal pain, distention, and blood pressure that bounced like a toddler on a sugar high. I was admitted to Santiam Hospital (which, side note, is about to merge with Salem Health — so I expected info to show in MyChart. It didn’t. Cool cool cool).

They ran every test:

CT scans, multiple X-rays

Sigmoidoscopy (tiny camera, big relief)

Labs to check for infection

CT showed significant stool burden (shocking), mild inflammation, no obstruction. The scope found proctocolitis but no alarming findings. Biopsies? Normal. No malignancy. No severe inflammation.

They manually disimpacted me again (shoutout to my dignity), gave me IV antibiotics, increased my Metformin, and kept a close eye on my blood pressure.

By January 21, I was eating, feeling stronger, and cleared to go home with instructions to:

Follow up with GI for a full colonoscopy

Check in with my rehab specialist at OHSU

Bonus Plot Twist: CPAP Chronicles

Oh yes — because my body never skips an opportunity for a subplot.

While I was asleep one night, they hooked me up to my CPAP. I stopped breathing. Respiratory got called. Oxygen was added. When I woke up, people were standing around my bed talking about me like I was a Netflix true crime documentary.

The hospital respiratory nurse told me she’d been on the phone arguing with my regular respiratory nurse. The hospital wanted to change my settings, but my nurse refused. I haven’t even been able to meet with her because she keeps canceling my video appointments.

Turns out Medicare wants me to use the CPAP 90% of the time. I’m at 40%. My respiratory provider says it’s a leak in the system (which I can’t fix due to dexterity). Sometimes I just throw the thing across the room like it’s haunted medieval armor.

Hospital nurse actually listened and advocated for me. I felt seen. Which, sadly, feels like a revolution.

Final Thoughts

I’ve had a lot of hospital stays, but this stretch reminded me that healthcare systems still haven’t quite figured out how to care for complex patients who know their own bodies.

So here's my advice:

Always bring someone who can advocate for you.

Keep your phone nearby.

Never assume your care team knows everything about your condition — teach them.

And above all, do not underestimate the importance of a reachable call button.

More updates soon. Hopefully from my living room — not a hospital bed.

Your full blog post is now merged, simplified, and dramatically cohesive — just the way your story deserves to be told. It’s all there: the humor, the chaos, the medical drama, and of course, the dry toast.

A Christmas months make me so happy…

December 8 2025

Monday

One is the things I was most excited about when we looked at this place it's right outside the front door across the walkway is a Koi pond/waterfall. I love water features and I have always wanted to have one. Another thing was the beautiful, luscious, fairytale like, multi tear fantasy Garden. Not to mention the layout inside, it reminds me of something in Santa Cruz California and the fact that it's one story, 3200 feet long, the rooms are humongous and there's lots of room for everything I have always wanted. When I take the dogs out for their cruise on Monday mornings the gardener is here, the garden always looks so awesome! I got his name from the handyman that I use, Dakota is the perfect handyman and so far the references that he's given me are awesome as well! I took Kona for her 4 mile jog, it still doesn't wear her out and sometimes I do it a couple times a day but she's happy and needs a lot of exercise! Then I take Dude for our 2 mile, slow and steady cruise. I came back and hung out with my brother, my niece and the kids for a while, I love the fact that the kids aren't as afraid of me as they have been in the past. The place we lived before I was down in a very small, dark basement I'm mostly in my bed the whole time. I didn't see him very often and I'm sure the power wheelchair is very scary for them. Now they jump on the foot plates and I give them a ride around the room and they love to honk the horn. It feels great! I usually end up going back to my room and hanging out with the pups or else Kona screams and nobody can get any sleep or take a nap. She's still only two years old so I'm hoping she can grow out of it or we can train her out of it. I stay in my room on the computer until my afternoon caregiver comes in and then she puts me to bed, feeds and toilets the dogs, we do some personal care and hopefully a bath. And my caregiver goes home for the evening while I watch movies, play games, chat with GPT, make pictures to upgrade this place after I sell my other house or update my SCI manual.

Tuesday

Becca came in I did the thing with the animals, got me some coffee, breakfast, dressed and up in my chair. My brother took me to my appointment I think urologist where he changed my SP tubeAnd encouraged me to get a visiting nurse to change it at home or show one of my caregivers. I used to have my caregivers change it but figured since I'm getting older I should see a urologist but there's no reason they can't do it. I had an appointment at Neiman Medi spa for laser hair removal, it doesn't feel good but it sure is nice to not have to wax my face every two weeks and so much better than walking by a mirror and seeing a long whisker hanging out on your face that you can't do anything about. Before I move to Oregon her friend that I got to know at the hospital and I started three support groups, people would come if there was food or a party but not really to talk about accessible things. Santa Cruz is fairly accessible and there wasn't really a lot of problems. A couple of months later we decided to start another one and see if that one would take off, it didn't. After the pandemic we decided to try it again and that's when it really took off, people had a lot of time to sit around and think and it was scary! Unfortunately, that's when I moved but they're always inviting me to drop in on the meeting virtually and surprise everyone…I miss them all so much! We got some dirty chai tea at Dutch Brothers and came home to hang out with the kids and the family for a while, I have to admit I really love hanging out and getting to know everyone better. Ashlyn came in and we ran through the routine with the pups, put me to bed, dis some person care and Ashlyn went home early. Sometimes when there's really nothing else to do she doesn't mind going home early and I don't mind having a little extra time on the computer.

Wednesday

Becca came in into curve the dogs then got me dressed and up in my chair. No appointments today so it's just me and the dogs cruising around and hanging out with family. I'm trying to get up every day but when I don't have anywhere to go or anything to do it's kind of boring and uncomfortable sitting in my chair but it's good for me and hanging out with family makes it nice. My house is still new enough to where I love cruising around and looking at it, I am so happy with it! I hung out in my room with the dogs until Ashlyn came in. She fed and toileted them, put me to bed and fed me, we did some personal care and a nice long hot bath, I know I'm going to sleep good tonight. She put me back to bed, put on some lotion, braided my hair, brush my teeth and then went home. It was so nice to relax the rest of the evening and watch some movies.

Thursday

Becca came in and we went through the morning routine, she's getting so much better and so much more confidence and that is great to see. She's really hard on herself when she doesn't do everything perfectly but it takes time. She got me dressed and in my chair and hung around for a while so we could work with Naomi, the dog trainer. Becca is really good with keeping the dogs in line and helping me work with the other caregivers to keep them obedient pups. It makes me feel really proud when the pups behave themselves and doesn't knocked over the kids.

Here I am jumping ahead again…

Friday, April 17, 2026

I really want to get back into the habit of blogging every night. I did it for so many years, and for some reason when I moved, I just kept lapsing. So I’m going to start right now and just go forward.

It’s Friday evening, and the sky outside is an amber sunset. It’s so beautiful. I changed my room around again, and I like the way it’s situated now because I can see out of all the windows. There are three big windows to the left of me and three in front of me, so I can see all around. I love this place so much. I still look at houses that are for sale and haven’t yet found one that I would rather have.

I just wish somebody would buy the other place so I can quit paying a mortgage on two homes and settle down to work on this one. We’ve had to lower the price so many times. I once thought I was going to make a hefty return, but right now it’s not looking so good. I’m torn between taking a huge loss and just getting it out from under me… or is it over the top of me?

Becky was supposed to come in this morning, but she wasn’t feeling well, so I missed my eye appointment. I really need to get new glasses. It’s always so frustrating having to cancel appointments because my caregiver didn’t show up or something beyond my control. I’m the one who looks like a flake, and I would really like to explain everything to the other person on the phone, but they don’t really care.

I ended up staying in bed, and it was so beautiful outside. The weather is so unpredictable. It always seems like the days I get up, it’s raining on and off, and the days I stay in bed are nice. I have a lot of things on my computer that I should be doing—deleting pictures, purging email, making appointments… stuff like that. But what do I end up doing all day? Watching YouTube and playing games.

I wish I had enough willpower to do what I’m supposed to do first and then relax. Maybe I’m too old to stop procrastinating. I keep saying, “Monday I’m going to stop procrastinating and do what I’m supposed to do before I play,” knowing all along that’s not going to happen. By the time I look up from my game and decide it’s time to get down to business, the day is over and my caregiver comes in.

Ashlyn came in, and we did some personal care. Usually I get to take a bath after, but since her husband is working later, we’ve been doing personal care on Monday, Wednesday, and Friday, and a bath on Tuesday, Thursday, and Saturday or Sunday. The shifts seem to go by really fast, but by the end of it, I’m ready to get back to my games and my drama TV.

I’m also trying to finish—or add onto—my memoir. I started it probably about 20 years ago. I’ll work on it for a while, then put it away, then bring it back out again. I keep telling myself I’d better hurry up or I’m going to forget everything. I love going back and working on different segments, and I’m amazed sometimes at what memories pop back into my head.

Same thing with my blog. When I start getting overwhelmed with life, I read back over it and realize my life wasn’t so bad.

Saturday was a great day. The sun was out, and I got up to enjoy it. Brooklyn came in, took care of the dogs, fed me, then got me dressed and up in my chair. She threw the ball out front while we watched Dude sniff around in the yard for poop—such a disgusting habit, and I wish I could break him of it.

We finally got the front yard fenced in, so I don’t have to worry about the dogs running into the street. If I had thought about how close the street was, I probably wouldn’t have bought this house, even though I loved it so much. Sometimes I get blinders on and don’t think about the consequences.

We had two one-year-olds escape a while back. They made it out the front door, past the gate that was left open, up the driveway, and into the street. I saw the footage on the cameras, and it was terrifying. The lady next door happened to be getting her mail and ran after them. When McKenzie went out to grab the kids, she collapsed in the middle of the driveway—she was so distraught. I timed it, and they were only outside unattended for four minutes, but that’s all it took.

It’s really nice now to take the dogs outside without having to watch them like a hawk or yell when they get too close to the road.

Brooklyn brought her husband TJ over, and he washed the windows. It’s so beautiful, and being able to see clearly outside is just awesome. We decided to get a storage unit because the garage is so full. There are three families living here, and it’s depressing to see all that clutter. I promised myself when I moved that I wouldn’t live like that anymore, but I’m still working on it. I’m a work in progress.

Brooklyn does double shifts on Saturdays and Sundays. She left Saturday, and a couple of hours later I started getting autonomic dysreflexia—headache, sweating, chills. I knew what it was right away, but there wasn’t much I could do. I texted her, and she rushed back as soon as she could. Sure enough, I was soaked.

At that point, I decided I might as well go to bed. My niece came in to tell me how beautiful it was outside and that I should go enjoy it, but it was too late. Brooklyn put me to bed, got the dogs settled, and then went home.

After everyone leaves, I usually pick a movie or watch a series while playing games on the computer. As I was falling asleep, I noticed my throat was really sore. I was hoping it would go away by morning.

Sunday morning, I woke up with an even worse sore throat, plus coughing and sneezing. I had planned on going to church with my brother, but I could just picture myself sitting there trying to be quiet while coughing and sniffling, so I stayed home.

When Brooklyn came in, she said the pollen count had been really high on Saturday. I haven’t dealt with allergies before, but apparently now I do. Not only am I getting older, but now I get the joy of allergies too.

As if that wasn’t enough, I ended up with two small pressure sores from sitting in urine in my chair yesterday. They’re always worse in the summer because of sweating and prolonged sitting, so I really need to be careful.

TJ came again with Brooklyn, and she brought her son Zaden. They helped move my room around so I can get ready to add a door to the dog run next month. I’m really excited about that because I’ll be able to let the dogs out more easily—or even install a doggy door so I don’t have to ask for help constantly.

I had two big kennels in my room with a butcher block on top that turned into a catch-all for everything. My room looks much better now. We removed one kennel and moved the other into the bathroom.

OK last time I'm jumping ahead…

Monday April 27 2026

I've been wondering why I've been thinking about my mom so much, I think about her a lot but I've not only been thinking about her but pictures are popping up in my dropbox of her. Today is her birthday! Liberty was supposed to come in this morning but she messaged me and said that she was up all night sick, I feel like I've been calling on Brooklyn a lot the last couple weeks and I feel really bad but I don't know what else to do? She always put some a great attitude and comes in but I know it has to be annoying. I don't know what I would do without that girl! She came in and turned me on my side and got me comfortable and then went on with her busy life.

I've been trying to get rid of some of my subscriptions online, I'm always signing up for stuff as a trial for three days or seven days or whatever it is and then forget about it and end up paying a subscription for years and years and never using it. My nephew introduced me to a program called rocket money and it's great, it lets you know all of the subscriptions that you have and sometimes helps you get rid of them. It lets you know how much you spent in a month unless you know when you have an uncategorized entry. I got rid of a couple of subscriptions and that always feels great! One of them is dropbox, I asked ChatGPT if I needed it and I really don't but I had a bunch of pictures on there like 4300 so I downloaded them and got rid of that program. That's pretty much what I've been doing for the last three or four days because I kept losing track of the ones I've already downloaded and had to start over again, but it was all worth it.

Lisa, a friend of mine I met in Santa Cruz called and left a message so I called her back and we got to catch up, it was so nice hearing a friendly familiar voice! Unfortunately, I didn't get to know her as well as I wouldn't have liked to. She is so sweet and seems like a really good friend to have. I need to start calling and catching up with the people I really miss from Santa Cruz it's going to get to the point we really don't know each other anymore and I don't want that to happen.

Ashlyn came in and we did some personal care and I got to take a nice hot bath, I don't know if I need to get a new water heater or because there's just so many people here but it's hit or miss whether I get to take a really hot bath or just a warm one. Tonight was a hot one so I'm happy. The rest of the evening I just relaxed, watch TV and played games on the computer.

Tuesday

Liberty is still not feeling well, Becky came in and washed some clothes. Amy, the massage therapist, came in and gave me a nice relaxing massage. I was gonna get up but my stomach was cramping a little bit so I was afraid to get up. I'm really missing seeing the kids when they come, I love interacting with them and I can't wait to get back to the days I get up every day. Becky put me on my side, got me something to eat and one more cup of coffee and then left for the day.

Becca came in and brought Dude, Stanley took him to the vet and picked him up for me. He has an ongoing ear infection and it looks like we're getting it under control. We did some meal planning and then Becca went shopping, I'm really excited about this week menu. It's so nice to have somebody that will take on any recipe I throw at her. Last week she made me lasagna with eggplant instead of lasagna noodles and I was so bummed because I have a cold and I couldn't taste anything because I was so congested, it felt delicious in my mouth and I could feel the soft creaminess of butter on toast but couldn't get any of the flavor. I'll get it this week and then have her try it again next week when I hopefully got my taste buds back. This week she's making baked chicken, fajitas, roasted vegetables, spinach, mushrooms and sausage, breakfast casserole and banana, walnut chia pudding with white chocolate mocha syrup.

Ashlyn came in and I ate some of that delicious food that Becca made and she's going to set me up, I was laying on my side for the day, my bed was soaked and so was I. At some point during the day my supra pubic catheter leaked a lot, the same thing happened about a week ago and about half a week ago when she came in the catheter was all the way out of my stomach I'm laying on the bed next to me. I have never had this happen before, sometimes my little chocolate lab that really isn't that little anymore likes to crawl up and lay on my chest. It's really the only time we get to bond I think we're not going to be able to do that anymore and it makes me sad. I don't know how I'm going to teach her not to jump up here when she's been doing it since she was a tiny puppy. The good news is I got to take another bath and after I got out it didn't leak anymore, I nearly had to take another trip to ER. Last time it leaked my urologist admitted me to the hospital to get Botox injections in my bladder and it helped for several years but maybe it's time to do that again. I went back to bed and try to relax for the rest of the evening until Stanley came to put on my CPAP machine and take the dogs out one more time before we all go to sleep. I watched TV for a while until I drifted off.

Wednesday

Wednesday was a really great day, after the scare of going to ER last night I woke up dry and I was so excited! Becky came in and toilet and fed the dogs, got me some coffee and something to eat! She got me dressed and up in my chair and McKenzie and I and the two kids went to Costco, I haven't been out of my bed for about a week and we were going shopping? That could be very dangerous for me right now. We bought way more than we needed and picked out a few things to come back and get because we ran out of room, we stopped at Chick-fil-A on the way back home and came home and ate in the front yard. It was such a gorgeous day! I took Kona out for a 3 mile cruise and ran into a lady that lived down towards the end of the street, of course I can't remember her name right now. She lives with her mom, her mom had a fall several weeks ago and ended up in a care facility doing rehab and she said she was coming home tomorrow. After our cruise I came back home and got Dude, he looks like he was limping a little bit so we went slow and only went about one and a quarter miles. We cruised back home and I visited with McKenzie, Nori and Jude in the kitchen for a while. My phone was dying so the dogs and I came back into my room and McKenzie plugged in my phone, I watched Dr. Phil until Ashlyn came in. She took care of the dogs and then put me to bed, we did some personal care and everything went so smoothly. Ashley set me up and I spent the rest of the evening watching TV and playing games. I'm starting to feel human again.

Thursday

Today was a really long day. Becky text me and told me that she was going to be late, next thing I know there's a message on the dream team text saying that her car broke down and she wasn't going to be able to make it in would anybody cover her shift? We have a group text with all of my caregivers and McKenzie and I call it my dream team because they are, it's the best group of ladies that I've had I think ever and I feel so much more relaxing and confident every day because of them. Amy came in and gave me a nice our massage, there were so many spots on my shoulders that were so sore and she got the little knots right out of them. Brooklyn called and said that she was coming over to work with McKenzie and to grab some buckets for her mother-in-law, we had so many of those black bins with the yellow tops stored underneath the deck in the back and we decided to sell them. They are all gone. I was thinking about putting down concrete underneath the porch in the back, filling walls and a door and making it storage because you can never have enough storage. Brooklyn came in and put me on my side. I stayed on my side all day until Ashlyn came in, she was going to give me a bath and wash my hair but her husband had to get up at like 4 AM so she needed to go home so he could get to sleep, they have two kids that he had to stay up with until she got back. She said she would come back on Friday after liberty leaves, liberty usually leaves between four and six because she comes in early.

Friday

Becky came in and took care of the dogs and I really wanted to get up to take them out for a cruise but liberty was going to come in early so I thought I'd just lay on my side for the day. My brother took Kona to the dog park, I used to take both of them but all Dude does is lay around and look for poop to eat and I think it's a nice break so we have just been taking Kona and I'm sure it's a nice break for Dude to be able to relax and not have Kona laying on top of him all day. Just a Stanley dropped off Kona Naomi called and said that she was going to be mental Brown Park if we wanted to bring the dogs by Stanley took Dude I went to pick up Kona and took them to the dog park, I love it when the dogs hang out with Naomi because they adore her and they come home worn out from all the exercise and play. It really feels good when they're not pacing around the room but sleeping because they're so tired. Liberty came in and we did some personal care, I texted Ashlyn and she said she wasn't going to be able to come in so liberty set me up to my computer for the evening. Stanley brought the dogs home and liberty fed them and then she was on her way home. Ashlyn didn't end up coming to get me a bath because her husband was working late again. My friend Cruz texted me and we talked for a little bit and she decided to come over tomorrow morning. We barricaded my bed so Kona couldn't jump up here and I think she was too tired anyways. I found out a way to hopefully slow down all the emails I get, I just sent them straight to the junk file so we'll see how that works. Once I start something like that it's really hard for me to do anything else until I'm done.

Saturday

My friend Cruz texted me and asked if she could come in on Saturday and help me with some stuff around here, Cruz is one of those friends that's always around when you need her. Even when I haven't heard from her for a long time I could just text her and tell her I need help and she's right here. She's one of those friends that cares too much and she always makes me feel great, we always have so much fun together. Brooklyn came in and got me some breakfast and some coffee and her son had a couple of track meats so she went to go watch. Cruz gave me a nice long hot bath, got me dressed and up in my chair, we took the dogs to the park, stopped at Marco's got some lingua tacos, some tamales and a quesadilla. I brought home the tamales and the quesadilla for my nephew, niece and their kids to enjoy and they told me that they were really good. I've been trying to find a place to get some really good tamales, I see them advertised on Facebook marketplace but I'm so afraid to eat something from a kitchen that I've never seen before. I know they're probably the most authentic but I'm so glad I found a place where they are good. We came home and ate out on the front porchAnd went through some more stuff in the garage, it was such a beautiful day. Cruz took off and went home and Brooklyn came in to feed the dogs and put me to bed. I started playing the game and watching a movie but I was so exhausted I fell asleep, my brother came in to take the dogs out one last time and put on my CPAP mask but he said I just opened my eyes and said I'm going to skip it tonight and went back to sleep. I woke up in the morning and felt really rested and refreshed.

Sunday

Brooklyn came in and fed and toileted the dogs, fairy and we were about to get me up but the phone kept ringing. I hate answering the phone so I was just gonna let it go to voicemail and then Brooklyn picked it up and it's a good thing that she did because there was a nurse from United healthcare at the door and she was scheduled to come in today to go over my healthcare. I did have it on my calendar because I looked but I had just gotten a call from somebody saying that they were going to come out on Tuesday so I got mixed up that's why I expect her. She was here for a couple of hours and then she left and Brooklyn got me dressed and up in my chair and set up my computer so I could play on it for a while before it's time to go to my great nephew Wes second birthday party, I have the best family and my nieces and nephews married in to some pretty cool people so I love hanging out with everybody. Everybody is so kind and there's nobody getting intoxicated and starting fights. We ate dinner, had some cake and ice cream and watched Wes opened his birthday gifts. I started to get a little overheated, it was actually 85 today and the party was mostly outside. Stanley brought me home as the party was breaking up, Brooklyn came in to put me to bed and then went home. I spent the rest of the evening hopefully deleting my email for good, or at least passing it behind me so I don't even see it. Before I knew it it was 1030 and my brother came in and put on my CPAP mask and took the dogs out one last time before bed. Next month I'm getting a door in my room to go straight out to a patio and down to the dog run so they don't have to go through the house and won't poop or pee in front of the house anymore.

Hopefully it's going to be warmer this week…

Monday May 4 2026

Monday was one of those problem solving day. I woke up at 7 AM and noticed that was the time my caregiver was supposed to come in, I can taste the coffee already. I waited and waited and after a couple hours I checked my calendar but there was nothing there. I decided to text Brooklyn to ask her if she remembered anything about that and she said"oh shoot I was supposed to cover for her". Boy it's a good thing I didn't text liberty and yell at her.

 Brooklyn came in, it's too beautiful outside to stay in here and look out through the window. I'm so glad that I have Brooklyn! She came in and got me dressed and up in my chair and before you knew it I was cruising up and down the street with Dude and then Kona. As I was heading to the top of our driveway I see my neighbor from about a lockdown, he stopped and was waiting for me so we could walk down the hill together. He's such a sweet man and he has such a sweet wife, he waits for me comes up to say hello whenever he sees me! We cruised down the hill together I said goodbye at his house. I have actually met three of my neighbors on the next block and I see two or three others out in their yard and they always wave as we are cruising up and down the street.

I came back in and it was getting warm, I was glad that I was done cruising around with the dogs. I hung out in the kitchen for a while with Stanley, McKenzie and the kids and it's never a dull moment and so adorable. Stanley went to go work out and McKenzie Jude for a nap so I decided to go in my room and I ended up taking a nap as well. I was watching TV and laying back and all of a sudden I woke up and realized I was asleep. Ashlyn came in, took care of the dogs, put me to bed, did some personal care Ashlyn went home. I spent the rest of the evening watching Karen versus cop videos on YouTube and playing Candy crush, the game I love to hate.

Tuesday

Tuesday was a really busy day. Becky came in and the first thing I always ask her to do is heat me up a rice bag in the microwave set the thermostat to 70 heat, they feel so good but I wish that he would last longer. The massage therapist didn't come in this morning because she got in some altercation with that crazy lady and where she hosts trivia and was exhausted, I can't wait to hear about this one! I had some coffee and then my usual breakfast casserole, half a bagel, half of a avocado and another cup of coffee. She got me dressed and got me up in my chair.  I had a video visit with my United healthcare case manager Kathleen and then my brother Stanley took me to my ENT appointment. She cleaned the wax out of my left ear and put some cream in my ears because they are still itching. She made an appointment for me to come back in and get a hearing test, sometimes I think it would be nice to hear better but since I don't have any dexterity in my fingers if my ear itches and I accidentally knock it out there isn't anything I can do. I came back home and hung out in the kitchen with Becca while she cooked, since she's not my caregiver anymore I only get to see her once a week so I love hanging out and catching up. I missed support group in Santa Cruz, I'll catch them next month. Ashlyn came in and we did some personal care after she took care of the dogs. She went home and I watch TV, play games and watch the beautiful sunset right outside my window. I love this place!

Wednesday

Wednesday I didn't really have anything going on but I decided to get up and take the dogs out for a cruise, the weather was so beautiful! Becky brought me some coffee and a nice warm rice bag from the microwave, I had another cup of coffee and some breakfast and she got me dressed and up in my chair. I used to take Kona first for 4 miles but she seemed to be giving tired these days after 2 miles, I think we need to put her on a diet because she's getting really chunky. Dude is staying really slim and he looks great! I have a bunch of phone calls that I need to make an appointment I need to schedule I want to say I keep forgetting I need to buckle down and do it…tomorrow. Hung out in my room with the dogs in Stanley put me to bed after a while because Ashlyn wasn't going to be in until late and I'm trying to take it easy on my butt. I'm just getting over a pressure sore and I don't want another one. About halfway through the day Ashlyn put a post on the dream team text and said that she wasn't feeling good and can someone come in for her, Brooklyn to the rescue again. Whenever I interrupt her days off she's always so nice about it, I apologize a lot but she always says no problem! She came in and put me to bed after she took care of the dogs and got me something to eat. The menu this week is chicken Caldo, roasted chicken, roasted vegetables, roasted eggplant and Chia pudding. I am loving all of this awesome food! After she left I just did the usual, writing in my blog, watch TV and play games until I fell asleep.

Thursday

Becky came in and took care of the dogs and that got me my heated up rice bag and a cup of coffee. The best part of waking up and my brother makes the best coffee! The massage therapist came in and gave me a nice massage. After she left Becky got me dressed up in my chair and I had some breakfast in the kitchen, breakfast casserole, half a bagel and half of an avocado and of course another cup of coffee. I sat outside by the waterfall for a while and watched the Koi fish in the pond.

 My niece came to get me for our meeting with my new financial planner. He had a lot of good ideas but one of his best was to start paying off my credit cards, I was going to wait until I sold my house but I wish I would've thought about paying them off before this cause I maybe could've had it paid off. Well I'm excited to get rid of these credit cards, I am going to have to cut way down on my spending, go down to one massage a week and the worst part is all of the plans that we have for this house are going to be put on hold until we sell the other one. I also bought a Polaris when I was at the other house and it has been such a big pain in the ass but I can't sell it until I sell the other house because I have to pay it off first. 

I hung out with the dogs for a little while longer Brooklyn came in to put me to bed. This is her regular night to work but she has been having track beats with her son so she goes and watches there but I think they're over so she's back now. I had some soup and it was so delicious! I also had half a bagel which I'm starting to think I'm going to have to quit because my blood sugar has been really high, usually I panic and quickly go back to eating right but I just love the bagels so much I keep hoping they won't affect me. Eventually I'll do the right thing. Put together a cabinet for me and then she went home, I watched a couple of movies and fell asleep.

Friday

Becky came in and got me some coffee and a nice warm rice bag, she took the dogs out and fed them and put me on my side after she got me something to eat and another cup of coffee. I decided to stay in bed today just to give my butt a  rest because it's going to be a long weekend.

After Becky left I was cruising around on Amazon and I found some coconut wraps so I asked ChatGPT to give me some good strawberry recipes it ended up becoming a whole other chapter of diabetic friendly desserts with coconut wraps. Well I got to pick up the dogs at Naomi's I saw this little fruit stand on the corner that I used to get fruit from, I got some strawberries and some mangoes.

Saw a picture of some stuffing so I was asking ChatGPT for a diabetic friendly recipe for stuffing, then I decided to get a recipe for gravy and I figure I might as well get a recipe for a roasted turkey. I remember when Thanksgiving my ex made brussels sprouts with bacon and it was so good I got a recipe for that as well.

Brooklyn came in and we get a personal care and I got to take a nice really hot relaxing bath, it's such a great feeling to get cleaned out on the inside and the outside and go to bed nice and comfy and cozy. I missed a couple days in my blog so I got all caught up and deleted my email and now I can play on the computer.

Saturday

Saturday Brooklyn came in and fed at toilet to the dogs, she fed me and put me on my side and then left. It was her son's birthday and Cruz, her daughter Suzy and I were invited to the party. Cruz came in and we did a couple things before she got me dressed and up in my chair, I had never been to this place, Splatter, before but it sounded like a lot of fun. We had pizza, watch they did open presents, had cake and then watched the fun. It's pretty self-explanatory, the kids get little squirt bottles of paint and they splatter each other with it. I was supposedly in the safe space but it looked like so much fun I wanted to join in. Brooklyn a couple of handprints on my Sherpa and that was it, I had hand prints and paint squirted all over me at my chair! Cruz and I came home and Susy went to Brooklyn's to hang out with her kids. She put me to bed and then went to go pick up her daughter and they went home. I was so tired I fell right asleep, what a great day!

Sunday

Brooklyn came in I took care of the dogs that took care of me. I decided to stay in bed, Brooklyn was going to come back in early so we can do some personal care at a nice long hot bath! So I decided I will just stay in bed and rest for the day! I watched some really good movies, play games are the computer and came up with a bunch of really good recipes for diabetic/gas friendly meals. I'm going to add them to the meals that I looked up on Pinterest. I am loving this meal planning and eating whatever I want. With Brooklyn came in we did just that, it's so nice to do personal care and then get clean inside and out and go to bed nice and cozy and warm. Stanley came in I took the dogs out one more time and put on my CPAP mask.

Halloween is behind us, let's begin Christmas…

December 1, 2025

Monday

Liberty came in and got me dressed and up in my chair after she took care of the dogs. She got me something to eat and another cup of coffee, and I was ready for the day. After everything was done, Liberty and I sat down at the computer to do meal planning for the week.

We’ve been using Pinterest to look up diabetic-friendly recipes. We put them into groups and then pick what we need from each group to create a seven-day meal plan. After we finished meal planning, she went shopping for the next day. She is an amazing cook, and I eat better than I ever thought possible.

Rebecca has also been coming in on Mondays so she can help while Liberty takes off to do the shopping. She helped me with whatever else needed to be done around the house. There’s still a lot to do, but it’s looking so much better.

I took the dogs out for two-mile cruises, one at a time. It feels so good to be out and about, and I’ve met some really nice neighbors along the way. Afterward, I came back and visited with my brother and the kids for a while, then returned to hang out with my pups. If I don’t stay back here with them, Kona goes berserk and starts screaming, which makes it hard for the kids to nap.

Ashlyn came in and put me to bed. We did some personal care, she fed me dinner, and I got to take a nice, long, hot, relaxing bath. After that, she put me to bed and went home. I love the feeling of getting everything done and then relaxing on the computer—playing games, deleting and catching up on email, talking to ChatGPT, and just unwinding.

Tuesday

Rebecca came in, took the dogs out, fed and toileted them, and then got me some coffee. Amy came in to give me a massage. I love that she comes in during the mornings now because we’re not constantly juggling the schedule.

After Amy left, Rebecca got me another cup of coffee and something to eat: my breakfast casserole, half an avocado, and a piece of toast. She got me dressed and up in my chair, and I took Kona—and then Dude—for their two-mile cruises. I always take Kona first because she’s the one who screams the loudest.

It’s getting really cold outside, and since I’m always cold anyway, cruising around with the wind hitting my face is even harder. My face is the hardest part to keep covered because I still need to see. I’m starting to learn how to dress for Oregon weather.

I take Kona out for two miles, come back to thaw out and warm up, and then take Dude out for his two miles. Kona likes to go faster, so the wind hits me harder. Dude is a nice, slow cruise.

When my morning caregiver leaves, I have her set up my computer so I can stay on it until my evening caregiver arrives. Being on the computer makes the time go by faster. I’m really trying to get up and move around every day, even if it’s just inside the house and hanging out with my brother, McKenzie, and the kids.

It’s been really nice getting to know McKenzie and the kids better. For the first couple of years I lived here, I didn’t see the family much, and now I’m loving every minute of it.

Ashlyn came in and put me to bed, fed and toileted the dogs, got me something to eat, and I’ve started drinking a big cup of hot tea before going to sleep. Hopefully it helps with digestion—and it definitely helps warm me up at the end of the day. She did a couple of loads of laundry, took the dogs out one more time, and then went home.

Kona has gotten used to sleeping at the bottom of my bed. She has her own little blanket, and sometimes she’s ready to go to bed before my evening caregiver is finished. She tries to jump up and get comfortable, and we have to keep chasing her down until we’re done. Sometimes she sneaks up and lays on my chest, and we cuddle for a while.

For thirty years, I’ve only had service dogs. They change owners often and are taught not to be close because they’re working. It’s really nice to have a puppy who’s genuinely happy to see me—even if I’ve only been gone for five minutes. Sometimes she jumps up in my lap while I’m in my chair and cuddles her neck up against mine. I think it’s a good idea to teach her to jump into my lap on command. If we’re outside cruising and another dog comes out of nowhere to attack her, I can protect my girl—even if it means I have to ram the other dog.

Wednesday

Another typical day. Rebecca came in, and we decided to finally make time for range-of-motion exercises. I keep meaning to do them, but we always seem to run out of time, so now we’re making it a priority. I think it will help with digestion and, of course, make me stronger.

My next goal is to start getting on my FES exercise cycle at least once a day. I always feel really good when we get everything done that I want to do. When I’m lying in bed at the end of the day, thinking about it all, I feel encouraged.

I have an amazing crew of caregivers. They all bring something special to the group and truly act like a team. I feel so lucky.

Rebecca got me dressed and up in my chair, and I took Kona and Dude out for their two-mile walk. After that, I came back to watch a couple of movies and hang out with the pups until Ashlyn arrived. She put me to bed, fed the dogs, and helped with personal care. I got to take a nice, long, hot bath and crawl back into my clean bed.

She got me something to eat and a hot cup of tea—I’m really enjoying having tea before bed. I never thought about it much during winter, but it really helps. She took the dogs out one last time and then left me to play games and watch a movie or two. Sometimes I watch YouTube—dog training videos, cop shows teaching people how to act like adults, or just gossip shows.

Thursday

Another day with the same routine. On Thursdays, Stanley watches his daughter Corinne’s girls—sometimes here and sometimes at their house—so I don’t usually see him. I have to make sure I have everything I need before my morning caregiver leaves because if McKenzie isn’t around, I don’t have anyone to help me.

Rebecca came in, took the dogs out, fed them, and got me coffee—followed by another cup and breakfast. We did range of motion, and she got me dressed and up in my chair. It’s really nice when we get everything done before she has to leave.

Rebecca runs a nonprofit community center for all ages. They host movie nights, local band concerts, potlucks, board game days, and holiday events—all in an inclusive environment that welcomes everyone, regardless of race, religion, gender identity, disability, or financial situation. There’s also a free food pantry and a free clothing closet.

She’s an amazing and inspiring person. She took an idea and a dream and made it real. From the first phone call, I was impressed, and we had a great vibe. It took a while before we met in person, but she came along at the perfect time when my previous morning caregiver wasn’t working out. Rebecca stepped in and did a fantastic job.

Each of my caregivers brings something special to the team. That’s why I call them the Dream Team.

It was really cold outside, so I took Kona for about a mile and then gave up and came back in. I watched movies and hung out with the pups until Ashlyn came in. She put me to bed, fed the dogs, fed me, cleaned up, did some laundry, and then went home, leaving me to watch movies and mess around on the computer.

Friday

Since hiring new caregivers, I haven’t found anyone who wants to work Friday mornings, so Liberty comes in at 10 a.m. She takes care of the pups, gets me coffee and breakfast, and helps with personal care. She stays until 2 p.m.

My brother gets me coffee in the morning and takes care of the dogs. In the evening, if Liberty hasn’t fed them, Stanley feeds the dogs and gets me something to eat around 4 or 5 p.m. It gives me extra time in the evenings to do whatever I want.

Having caregivers around for four to six hours in the morning and again in the evening still leaves me with plenty of time to relax and have alone time. I really appreciate all my caregivers—I truly don’t know what I’d do without them—but everyone needs time for themselves.

Stanley usually comes back around 9:30 p.m., takes the dogs out for one final potty break, and sometimes I have a snack.

Saturday

On Saturdays and Sundays, Brooklyn works doubles. She’s the creative one, and everyone loves her. She can do just about anything. She made personal Christmas window clings for the hallway and my bedroom, a beautiful wreath for the front door, recovered furniture, and created stunning paintings for my house.

Her son makes candles and made me some amazing ones—one even looks and smells exactly like a bowl of Froot Loops cereal. She and her mom designed beautiful quilts from shirts and sweatshirts filled with memories I didn’t have space for. The detail is incredible, and I have them hanging on my walls.

Her sons sometimes come by in the evenings to do chores, and her husband TJ is such a big help—he can do anything. The whole family is crafty and just awesome. I don’t usually feel comfortable around a lot of people, and I get social anxiety, but for some reason I feel completely at ease with her family.

Brooklyn came in, took care of the dogs, and got me coffee and breakfast. We always try to look for boutiques and festivals—sometimes we make it out, sometimes we don’t—but we always laugh and have fun. She put me on my side and went home for the day.

When I stay in bed, I nap, catch up on emails, talk with friends from Santa Cruz, and work on projects with ChatGPT. I ask things like what essential oils go well in which rooms, decorating ideas, paint colors for walls and ceilings, and artwork placement. The most fun is when GPT mocks up pictures and ideas for the house. I’m having so much fun with it.

Brooklyn usually comes back between 3 and 4 p.m., feeds and toilets the dogs, feeds me, gets me tea, does laundry, and tackles end-of-week projects. She always keeps my room and bathroom clean and sometimes takes the pups to the park. When she leaves, I always feel like we accomplished a lot—even on days I stayed in bed.

Sunday

Brooklyn comes in, takes care of the dogs, and gets me coffee. My family goes to church, and I go once in a while. We’ve started a ritual of ordering breakfast from different restaurants, which is nice. Our favorite is Black Bear Café—their sausage patties are amazing, and I wish I could get the recipe.

Dakota came over to install a back gate on the dog run and spread bark chips so it wouldn’t be slippery. I love having someone who can execute my wild ideas. When I lived in Santa Cruz, my friend Vicente did that—he’d roll his eyes, then make it happen anyway. Dakota is the same way.

We’ll be doing more excavating to make a playground for the kids and a parking area, and maybe move extra dirt into the dog run and behind the house. I like to watch everything being done, and sometimes I check the cameras I have set up. I feel a little guilty and worry whether people can tell, but when I’m stuck in bed, it’s my way of seeing what’s happening.

Brooklyn put me on my side and went home until her evening shift. She came back with her son, who helps with odd jobs. He fed and toileted the dogs while Brooklyn got me something to eat, did laundry, and looked for more Christmas decorations.

I can’t wait to see the house decorated for Christmas. It won’t be the full wonderland I dream of just yet, but once we sell the other house, next Christmas will be incredible. I got great ideas from the Kaiser Christmas display and walk-through. Brooklyn is making window decals, and I’m so excited—she’s putting them down the hallway so they’re visible from inside and outside.

Brooklyn set me up on my butt, took the dogs out one last time, and then left. Since I can’t shop much right now, I like to fill online carts and leave them—it helps with my shopping cravings. I wound down watching a movie before falling asleep. Stanley came in around 9:30 p.m., took the dogs out one last time, and put my CPAP machine on.