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