Then and now…

I never noticed people staring until I got a camera mounted on the back of my chair, especially when I go home and edit them. I get to see how people look at me when they think I'm not looking at them. Sometimes, I get to see how they look at me after I just passed by them, and they were looking at me and smiling. Sometimes I see them looking at me and I can tell they're thinking "oh that poor thing to have to live like that for the rest of her life". Sometimes, people bump into me and apologize profusely to me when I know I couldn't feel it anyway, and it probably hurt them way more than it hurt me. How many times I hear people say… "I know exactly how you feel"… And then they usually go into the story of where they broke their leg once and had to be in a chair for a whole month, or they broke their arm and were severely inconvenienced for a whole month.

I'm not really annoyed. I feel a little sorry for them because I realize they want to say something nice, but don't know what to say. They are just trying to make me feel like I'm not the only one with problems. It's very sweet!

One thing I will never forget is when I went to the Mountain Sol Festival and Michael Franti jumped down from the crowd and came up on one of the little stages in the middle of everybody and grab this little girl, I have been watching her a lot because she was just so happy and having such a fantastic time! She had two prosthetic legs, one of her whenever hands was turned all the way around. Go to mothers were almost in tears watching her have such a great time, when Michael jumped up on the stage, he immediately scooped him up into her arms with a confidence like I have never seen before. The little girls ' mothers turned around and almost jumped on the stage, trying to protect their little girls. It's a common reaction from mothers with children with different abilities. After they realized Michael would not hurt her, they looked so proud! I tried to sneak my hand up to wipe away the tears when I noticed everybody else around me was doing the same thing.

It's been a long couple of years…

 Hi friends, old and new —

It’s been a little while since I’ve written here, but oh, what a journey it’s been. Life took some unexpected turns, including a big move, new surroundings, fresh challenges, and some deeply personal growth. And through it all… I’ve never stopped dreaming, hoping, and planning for the life I want to live — a life on wheels, yes, but fully lived.

This blog is my view from the chair.
The one I sit in as I watch my pups play, plan out my dream home, sip tea under string lights, or write a new chapter in my book (yep, that’s happening!).
It’s also where I share stories — the kind that make you laugh, cry, think, and feel seen.

Since I last posted, I’ve started a support group called Life on Wheels, reclaimed my space and independence, and made big plans for a home that’s meant to be lived in — rustic wood, sage and coral walls, big love, and even bigger dreams.

So here I am — rolling back in with a heart full of gratitude, a head full of ideas, and two dogs (Dude and Kona) who might just photobomb every post from here on out.

I’ve missed this space. I’ve missed you. And I’m so ready for what’s next. 💛

Let’s roll...

I have not written in my blog for over two years.

I was watching a movie, and three guys broke into this man's house. His wife and daughter were there, and they wanted to get his safe information and all of his credit cards. The guy resisted, so the robbers smacked him in the face with their guns, and the homeowner started bleeding badly. His hands were tied behind his back, and his nose started bleeding, so the nice robber took a napkin and wiped off his face… The thief was nice enough to spit on the cleanex and wipe his nose. It reminded me of when my mom used to do the same thing when my face got messy. I never thought it was much cleaner after she did that.

My body is finally letting me get up and it feels awesome…

 The weekend before last, I went out with my brother and his wife to look at houses… I never thought this day would come; the feeling is unbelievable!! It's so good to be up and out and about, and even though I checked my blood pressure every half hour, I didn't have to do anything to regulate it! Out of the seven houses we looked at, I loved two of them, four of them I liked, and one was a big disappointment! I guess that's why you go out and look at them? I couldn't get into most of them because they were not accessible. Janet rented a ramp, but it's been so long since I've been in my chair that I didn't feel my driving was steady enough to go in some places. Stanley went and did walk-through videos for me; he's always so thoughtful! When I got home and went back to bed, I just couldn't stop thinking about how lucky I was to get up and get around again. Last Sunday, I got my first soaking bath and was so excited I thought about it all night. I didn't think I was in there for long, but Cruz said I was there for half an hour, so I thought I'd better get out. It's so great to know that now I cannot only get up whenever I want, but I can take a nice long hot bath, as long as I keep it down to 10 or 15 minutes to start with. On Tuesday, the doctor said I went to my first primary care doctor appointment in two years. Now, I can start going regularly and catch up on all my appointments and doctors. I have big plans. There are a couple of workout places around here for differently able people, and they both have roll-in swimming pools, and one has a gym to work out. My brother attends one daily, so I'm looking forward to that. 

The saddest day ever...

The saddest day of my life...

In April of 2022, I signed the papers for our new home. My head was still spinning as to why I was doing this. I lived in the house of my dreams for 14 years. In Santa Cruz, California, I finally got everything exactly how I wanted. We were starting another support group, and we had CCI puppy play dates and holiday parties at my house. I never really had a lot of friends in my life, but everything was working out perfectly! I have great doctors and my life was predictable, and that's how I like it! My mom started getting sick, with major nosebleeds that she would let go until she was about ready to pass out, and then she would ask me to send one of my caregivers up, and they would end up calling an ambulance. My aunt or I would call my brothers, who would come to care for her. Pretty soon, they were coming down a lot, and it looked like my mom was getting sicker, so we decided she was going to come to Oregon and live with my brother and his wife. She had six grandchildren here and they were starting to have babies, my mom was in heaven! I was going to go up there for a while and let the guy who does the maintenance on my house live in the top story where my mom was, and I was going to air B&B out the bottom until I was ready to move back. Then all of a sudden my family told me that I needed to sell my house in Santa Cruz California to buy a big house for everybody to be comfortable. I didn't question it because that's what my family wanted, and it seemed like the only solution. My health started declining, I ended up in the hospital for almost a week, I don't remember a lot that happened that week but I'm pretty sure I had a breakdown! The first thing I noticed when I got out of the hospital and back home was that the stained-glass light my aunt and uncle gave me was missing. I was freaking out all night long, trying to look at the cameras to see who took it or what happened. After frantically searching all weekend, my caregiver said, "Oh, your aunt and uncle came and took that." I was already frustrated because after I left for Oregon, she took everything out of my yard and took it over to her house… Garden art, pots, not to mention all of my plants. She told me "you're not living at the beach anymore, you're moving to the mountains! The one person that I thought was on my side will help me fight for my house. I felt so defeated and alone, I felt like I just didn't have a choice anymore. The day my brother drove me away from my house I turned around and looked at my dream home for the very last time. I was hoping to make it out of there without seeing but just as we round on there was Adriana and Nico coming out of their house so we pulled over. Adriana opened the door and they both gave me the biggest hug and told me that they were going to miss me and that was it, I pulled my blanket over my head and silently cried until I fell asleep. I woke up a couple times and try to figure out where I was but then I just went back to sleep. My brother, my mother and my sister in law were already moved into the house but my basement studio was not ready so I was going to stay in my nephew and my nieces duplex. They were always so kind and I felt really comfotable around them. My niece snuck some pictures out of my Santa Cruz house and put it up in the duplex where I was staying. I purposefully went to see all of my doctors before I left because I didn't know how long it would take me to get new doctors. I got a pressure sore on my coccyx and by the time I got a primary care doctor it was a stage four, all the way down to the bone and osteomyelitis, bone infection. Then, of course, my bed broke down; I couldn't call anybody out to fix it because I needed a prescription from my primary care doctor. After several months my little brother came to wisit and said "why don't we just go to the ER and see what happens? What have we got to lose?" so we checked in and waited two or three hours, and then they took us back, we told my story to anyone that would listen. They admitted me They cleaned out my wound and found out it was a stage four… All the way to the bone. I had an infection, MRSA and SARS, they put me on IV antibiotics, and I stayed in the hospital for several days and came home to do the rest of my IV antibiotics. They were all so sweet and caring and just amazing at the hospital! I remember thinking, "Why didn't I do this long ago?" and they operated on my sore the next morning. My new primary care doctor found me wound care clinic not too far away, everybody was so nice… If somebody's going to look at your butt once a week you want them to be nice right? We started to get into a routine and eventually I was wearing a wound vac, trying everything to get rid of this pressure sore… It's just so huge it seems like it's never going to go away.

After several more months, I moved into our new house but had to stay in my brother's dining room. I finally found a primary care Dr., but I was number 80 on a waiting list to get into wound care; my sores  were getting worse, making me sick, so I couldn't eat very much and lost a lot of weight. I finally got somebody to come out and fix my bed, and they were so impressive they practically rebuilt my bed so I wouldn't have any more problems. In December; we were having a housewarming/Christmas party for anyone on Facebook who wanted to drive to Oregon. The party was nice, but none of my friends came, it's a long drive and too close to Christmas. Dude's puppy raiser Kim, her sister, and brother… Her brother made me a Christmas ornament with a picture of Dude and Santa Cruz in the background; it was so sweet!

My brother went home, and my mom went into the hospital; after saving a couple of days, they sent her home to hospice. My brother Dave decided that this was where he needed to be right now, so he chuturnednd stayed until he ran out of time off. My mom is doing really good, but I think that's because they have her on morphine every night; thank goodness she doesn't have the pain anymore… She has suffered so much last year. Dave ran out of time and made it home on o spend his birthday with his family; they always do something cool and create for all the holidays and birthdays. They played a game called Bullshit". He made him a lovely dinner.

I don't seem to be getting any better… I have been in bed for almost a year. KCI took away my wound vac because Medicare said there wasn't any progress, so now my wound is leaking a lot. My primary care transfers my care to a wound care clinic with a hyperbaric chamber. I had to get some labs, X-rays, and an MRI done. Sure enough, I have osteomyelitis again, which means another surgery for the Debridement of my wound, another pic line, and IV antibiotics for several weeks.

I started using electrodes around my pressure sore, pays to use them yourself and I don't know why because it was helping my pressure sore get smaller. I had to jump through all kinds of hoops but finally I got the okay with the hyperbaric chamber and I was so excited!

On the first day I almost didn't get to go in hyperberic chamber, my blood sugar was too low?? What?? I passed all these tests are not going to get to try because my blood sugar is too low, I have never heard of that! They finally gave me something from the refrigerator tasted like apple juice and after I waited 20 minutes my lunch was hundred and 40 so I was able to go in. I was really nervous the first day as everything was so new, I was told that it could make your ears pop a lot and since mine already do didn't want my eardrums to get blown out. I got to watch a movie and I chose Tommy boy, took my mind off of being in the chamber and I dosed off in between watching the movie. When I got out and all the way home I felt fantastic! My stomach hasn't hurt and my headache was gone, Did it really help is it just my imagination? I slept really good and woke up feeling great! Usually. I procrastinate and lay around as long as I can what but I was ready to get up and back to the hyperbaric chamber. This time they had to call the doctor because my blood pressure and my pulse were really low, they took my blood pressure over and over and the doctor was ready to send me to the ER and she asked how I felt… I told her I felt sorry and that was the truth so she let me go in and told me if anything went wrong to let them know stop the treatment immediately sent me to the ER. I was starting to get a little sweaty and it was making me nervous but then I remembered that I had been planning on this card or an hourly, after I got out I felt much better!

They gave me 40 visits to the hyperbaric chamber, and I was so excited! When I got about halfway, they said I could add another 60 days, but unfortunately, that never happened. We tried everything, but every time I got out of the hyperbaric chamber, my blood pressure would shoot way up, like 212/185. They let me go in a couple of times, and then they just said no unless I can find a hyperbaric chamber where you can monitor blood pressure when the hyperbaric chamber is over. After they cut me off, they had to shut down the hyperbaric chamber because they no longer had two people that could be in there. I felt really sad for the other people who had to lose the benefits of the hyperbaric chamber and had so many benefits. Not only did they shut down the chambers, but they're also closed on Fridays now; I wonder if they will just shut everything down?

Salem Hospital wound care gave up on me and said the wound vac wasn't helping me anymore. Then my primary care doctor found me the place in McMinnville with the hyperbaric chamber; McMinnville gave up on me, and now I only go there every two weeks. Meanwhile, I finally got my appetite back and have been slamming protein like crazy. I'm offloading whenever I can for however long I can; we're doing red light therapy, electrodes, leg vibrators… everything that would help.

Except for the fact that I was living in somebody's dining room with curtains for doors, I loved listening to my brother interact with the grandchildren. He adores them, and they adore him. He's always singing and watching the kid shows with them, and he just loves it!

My mom passed away on January 19th 2022

I'm jumping way ahead because too much has happened

I have waited three years to have a flap surgery to close up my stage four pressure sore! I had to go through so much to get to this point, and now it seems like it came up fast. I just went up there for a consultation with the plastic surgeon, and he said it would probably be three or four months out. They called me a week later and gave me the date of September 6th; I was excited, nervous… so many emotions I didn't know what to do first! That's when my caregiver told me, but I have a mouse infestation; it's always something around here! So I was gonna be in the hospital for 10 days; the pups will be at Naomi's for 10 days, so it's the perfect time to get the exterminator out here. A while back, I was having problems, and one of the guys helping me suggested just taking a bunch of D-con and throwing them in this one closed-up closet with random stuff in it; it worked, so we decided to do it again.

My hospital stay was pleasant; everybody was kind and caring, and I felt comfortable. The next day after my operation, when they let me have solid foods, I ordered huevos rancheros, a colossal mistake! I think that night I had an enchilada, and it had beans, which I shouldn't have, but I figured, "I'm in the hospital, and they will tell me if it's not a good idea. I didn't know that surgery paralyzes your bowels, and mine are already paralyzed, so it was a rough couple of days. I have a friend, Cruz, who happened to live in Portland, so she came in to help me out, and boy, did she ever; she is a miracle worker! They were talking about sticking a tube down my throat, and I believe this girl saved my life! After that, I decided to stick to oatmeal, yogurt, salads, and Jell-O for the most part. The night before I was going to go home I actually read the whole menu and I saw that they had sautéed spinach and a spinach-stuffed tomato with cheese, it was delicious! They were supposed to pick me up with an ambulance because I needed to lay flat for six weeks. It's expensive to ride in an ambulance! On the way home, one of the guys who picked me up asked me if he could put some oxygen on me and asked if I had a CPAP machine; he strongly suggested I get one. When I got home I was so excited, I laid awake in the hospital so many nights just dreaming that I was back at home in my own bed. I have to lay flat in my bed for six weeks, and I hope it goes by fast, although I'm sure it won't, but at least I'll have my computer and my puppies. It felt like the slowest six weeks in my entire life but it's almost over, I have one more appointment in a week and a half at OHSU and then a couple days after that I get to start getting up for one hour the first day, two hours the next day and so on… 

Little did I know that laying down flat all that time would mess with my already a fib heart, now I'm having to start Setting up and doing exercises a little bit every day trying to get my heart rate up normal. It gets way too high and then way too low, and I never know what I will get when I wake up in the morning. I've been working with my spinal cord injury doctor, and he's adjusting my meds and trying different meds to see if we can get it leveled out, but we just can't. I start doing really well, so I sit in my bed for a while, and then something happens, and it drops or shoots way up again. It doesn't help that my caregivers keep calling in sick; one sometimes waits just an hour or two before her shift, and there's no way I can find somebody to fill in. I often let it go to the extreme and get sick again. At least I'm getting my appetite back, and now I'm afraid to overeat and gain all that 20 pounds back; I need to eat a lot of protein, so I guess I'll lose the weight again when I can exercise.

I was talking to my cousin Debbie. I miss her so much. She is also having problems, and she goes in for an operation at the beginning of November. I would love to be with her.

I was thinking back on all the drinking I used to do, and I feel fortunate I made it through with only killing my pancreas, so now I have diabetes and probably lost a lot of brain cells, but I got out of it lucky. I remember I used to wake up at 2 AM with a pounding headache and an upset stomach. Unfortunately, there was nothing I could do about it until my caregiver came in at 6 AM. By then, I was feeling so bad that I would ask her to get me another shot, the hair of the dog, and that usually worked, but it would start all over again. If I could take it all back, I definitely would, but that's not an option, so I have to live with the consequences. Even before that, when my ex worked the weekend shift, I did methamphetamine with no one around, just my math, my alcohol, and my cigarettes. My house got a deep clean every weekend.

I have a physical therapist and an occupational therapist who have been coming out and helping me with exercise and working out what I'm going to be doing when I get back up in my chair; they showed me a bunch of exercises I can do to get my neck and my arms so that I won't be all limp in my chair when I get back up into it. I have my exercise cycle, I will get a standing frame, and I hope to get back into shape… I've lost a lot of weight, so I hope to keep that off, but I want to build muscle. I also found a rehab place that has everything I need, so I'm definitely going to join that. I also talked about how I would like to join or start a support group, but I miss connecting with people. I never thought I would say that because I was always a recluse. I never had any friends, but after the pandemic, I started hosting Canine Companion for Independence puppy play groups and parties! I also had Michael Franti's stay-at-home concerts in the driveway. My neighbor Trish would invite some of her friends, and I would invite a couple of mine, and it was just so much fun.

Yesterday was my final follow-up with my plastic surgeon. He said everything looked good, and I could start getting up in my chair, but I had to sit straight up; no more leaning back even the slightest because that would make my sore not heal. It's always so comfortable to lay back a little, and I never thought that leaning back like that was terrible for my pressure sore; it makes sense how my doctor explained it, and I don't know why I didn't put it together sooner. Now that I don't have a job anymore, my job is to keep my body healthy and strong, something I always did halfway, but now that's my goal. There were a couple times when things just got worse, and I was just thinking," This is going to be the end of me, so I might as well just give up." Now, I will buckle down and save money, even enough to buy a house. I would love to get my place and have a caregiver or nurse Live with me. In truth, I would love to buy a place in Santa Cruz, but that will never happen, so I'm trying to have realistic goals.

I hired a new round of caregivers about three months ago; of course, in the interview and for the first week or so, they were always perfect and seemed to do everything without being reminded many times. In the past I always learn about some of my caregivers taking stuff, when somebody figures out that you have some money and you get packages from Amazon every day they figure out that they need it more than I do. It's heartbreaking. I tried to be generous with people who helped me, and sometimes it ended badly. I have such a hard time with confrontation and talking to people, and although I still can't after all these years, I see other people doing it, and I envy them. I now have the perfect crew, and I can't wait to organize my house, decluttered and spotless. I ended up with storage for all of my holiday decorations and one with stuff that I haven't been able to go through my house; my brother and my niece have been suggesting that I just sell everything and get rid of the storage payments, I finally decided to do it since my new place is so tiny and I'm trying to save money. My niece is selling everything for me, so I would only look at some things and decide not to do it.

Nine months ago, I got a chocolate lab puppy. I had always wanted one. The receptionist at the place where I went for wound care and the hyperbaric chamber had a litter of puppies and was giving them away. How could I resist? My family was a little upset with me, and at first, it was tough trying to keep her from chewing up everything and barking and whining all night. I met a dog trainer who worked with Dude, keeping him fit and groomed when I was stuck in bed with the pressure sore. She is the best! I named my puppy Kona after a visiting nurse's Service dog. The best thing about it is that Dude and Kona just adore each other, I tried to adopt a puppy a couple of times, but Dude wouldn't have anything to do with them, so they had to go. They are always playing and running in the yard with each other. Dude is like a puppy again!

The evening before Thanksgiving, Stanley and Janet came down and asked what I would think about moving; that was the best news I've heard in a long time! I couldn't believe that my family decided to put me in the basement where I didn't even have a bedroom at the bottom of a huge hill that I had to tackle whenever I wanted to go anywhere or come home. I started looking immediately! At first, we discussed getting another place like this, with their place upstairs and mine downstairs only, with at least two or three bedrooms for me. At first, I thought I could hold firm and get what I wanted; after all these years, I deserved it! I have a good friend I met in Santa Cruz about 10 years ago. She is a massage therapist and used to come by twice a week to give me a nice two-hour massage, and she was terrific! She's been talking about moving away from Santa Cruz to another state, so we've talked about possibly moving in together! If not, I'm confident I will find somebody else.

One last ride on the beach train and saying goodbye to a couple more friends…

 Monday was a good day. Karen came in and fed the hungry pouch. Hannah came down, and Karen showed her the morning routine; they got me breakfast, and then Karen showed her how to get me dressed and up in my chair. After I got up, David, Melissa, and Hannah took off with a truckload of my stuff back to Oregon… It's starting to get real. Dude and I took off for a cruise to the end of the boardwalk and back, down to the end of the wharf, and back and home. I want to be out enjoying this beautiful city for as long as I live here, but I want to be back enjoying my house as long as possible. They cruised around my yard for a bit and then went inside to lean back and watch TV; I didn't know what to do. Rachel came in, fed the hungry hound, put me to bed, and then fed me. She cleaned up and then went off to school, I watched TV for a while, and then my uncle, my aunt, and Claudia came over to play cribbage. I think this is going to be our last game of cribbage. After everybody left, I checked my text messages and got a bunch of pictures from Oregon; I watched TV for a while until I fell asleep. Rachel came in for the hungry hound dog, put me to bed, and fed me. She packed up some more boxes for me; she marked what they were in Spanish so that Karen would change to English in the morning.

 Tuesday was an okay day. Cindy came in and fed the hungry hound dog, fed me, then got me dressed and up in my chair. My time is almost up here in Santa Cruz, so I want to get around and see that I just came while I have the time. Unfortunately, today I have appointments most of the day. My first appointment was with Dr. Petrocelli to get my Prolia shot; I guess I was overdue, so I'm glad I got my shot before I moved to Oregon because I'm pretty sure it'll take a while to get a new PCP. We picked up Rosa and had lunch at Twin Lakes; it's so beautiful… Cindy and I come out here quite a bit, but the weather is nice to get some nachos and look at the beautiful scenery. I have been trying to get my hospital records to take with me when I move, hoping it will make it easier to establish new doctors; it's not the easiest thing to do because everybody seems to be taking those times, and I'm happy to call several times. We decided to just go down there and ask them in person, but you can't even get in the building; you have to call somebody to come down and help you, and it takes forever… Finally, they came down and promised she would work on it the next day. Even though I have heard that a lot, I hope it's true this time. Rachel came in and started packing more of my stuff; she's just now learning to speak English, so she barks the boxes in Spanish, and Karen changes that into English in the morning. Even though I'm not packing stuff up, all this is physically and emotionally draining. I watched 90-day fiancé for a while and fell asleep.

 Wednesday was an OK day. Crystal got me up, dressed and took, me to my wound care appointmentAt Salem Hospital building C.