Rage and Resilience

 

Our world is full of horrors right now. Abroad women in Afghanistan are now told that they really don't need two eyes and that they should at all times cover one up. In Gaza everyone is being starved to death while reporters are bombed... intentionally. More reporters have been killed in Gaza than in every war ever put together.

At home a mad man is president. He has destroyed Democracy and women are being attacked right and left. Our rights are being stripped, our jobs, our art, our voices. The disabled are being intentionally murdered by vaccine and medication denial and no more support financially.

I'm very worried about my own disabled son who receives free medical care.

We've never been here in history before. Taken such a massive step backwards as a civilization. Men and their greed for power are murdering millions and millions of people. It's time women take power back. Men have proved they are unfit.

Personally it's very hard to keep aware of what's going on here and abroad without completely marinating in it. Balancing the fear with the resiliency. 

I do have a "go bag" packed. It contains cash, our passports, birth certificates, social security cards, medical information, all the information we need for the dogs and other important documents. My mother has the same. 

My husband made fun of me at first, but shut up after a friend of his said he did the same thing. 

We live in crazy, uncertain times right now. But even so, there is still joy to be found in friends and family.

Medical Scare

 

My mom just returned home from the hospital after being there for a harrowing six days. She was vomiting and having diarrhea and couldn't eat a single thing for 15 days. It was awful. She was diagnosed with kidney stones, gallstones, an enlarged pancreas,  two small hernias, fatty liver disease, diverticulitis of the colon and a UTI. Because everything else just wasn't enough. 

This is the third time in five years she's gone to the emergency room and been admitted. Fortunately this is the first time she didn't require surgery. It was very stressful, all the unknowns and I just felt so awful for her and helpless.

At times like this I'm reminded that the one thing I can do and can control is what I'm putting in and doing with my own body. Seeing her health scares me. Being a plus size woman myself, it makes me want to try and lose some weight to hopefully avoid some of these future issues.

The good that came out of it was that I was inspired me to re-double, triple, quadruple my efforts to try and treat myself with tender loving care. Feed myself good food. Move as much as I can. Rest when I need to. Spend my time mindfully. All fantastic reminders.

In the past I've wanted lose weight for a very specific goal. A trip usually. Or special event. Then I "cheat" because I'm on vacation, it's a special holiday, we have company, there's a birthday party, etc... There always seems to be an excellent excuse to eat anything I want.

This time I'm taking it minute by minute and trying to make the best choices for myself. For my body. For my health. For my future. Rather than indulging for the "Now."

How Lucky Am I?

It can be hard to remember how lucky I am right now, given the political world. But in many many ways my life has never been better. And since nothing lasts forever I really want to remember that.

I have my huge family around me. 

I didn't always have a very good relationship with my mother. In fact we didn't talk for 15 years (my choice.) We have since reconciled and she lives right around the corner from me. I love it. I get to see her many times a week. We always have such fun together. Laughing, talking, just being together. I love her and am so grateful for all of the time we get to spend together.

My half sisters and I have found each other five months ago, and we now have a relationship. I have always wanted to be one of three sisters and now I am. Something I thought was previously completely impossible. I love them and I love their children. I am the "Auntie Nette" to four stunning boys and one fiery girl (who will take no shit from anyone. Especially not boys.) 

The brood

Me and my little sister

Me and the middle sister

I have a best friend who is kind and lovely. She adores animals, is a fierce feminist and warrior woman. She is also chronically ill, so she can relate to me on a different level than healthy people. We've only been friends for a few years but we are incredibly close. I know I could count on her for anything. That is rare.

She got married this past Monday

My husband and I are very best friends. He cracks me up and makes me feel so special. So seen and heard. We have a very rare bond. I'm thankful we met so young so that we've been able to spend so much time together we're going on year 32 right now. My soul mate.

My son just called me his "confidant." That melted my heart. He also lives right around the corner. Something I'm incredibly grateful for. I appreciate our closeness and that he's as close to me as he can be to someone whose not his partner. I get to see him almost ever week. I love him very much.

He just turned 31 this week

My two dogs fill my world with sunshine and howls of laughter. Peels of laughter daily. They also fill my heart and my bed. Hahaha. I can't imagine my days or nights without them by my side. Often sandwiching me like the little pack that we are. 

My life is bursting with love everywhere I look. Every nook and cranny full to the rafters with people and animals who love me and who I love back. This is the first time in my life I can remember feeling this way. I want to savor every moment of it and keep them all safe and with me as long as I can.

Exciting Few Months

My life has been changing rapidly over the last months. Not leaving me much time for blogging. Fortunately for me all of the change has been good.

I HAVE A NEW FAMILY (more family? My family grew!)
I found out months ago that my birth father passed away in 2021. I learned this on Facebook. I would do occasional Google searches of his name just to see what he and my two half sisters were up to. We had no contact at all for over 24 years now. I Googled him and found a remembrance post by one of my sisters. I was very surprised as he wasn't that old.

I sent her a message even though we weren't "friends." I knew it was a big shot in the dark, but I was curious how he died and if it was something I should know about (like cancer or heart disease.) I said I was sorry to read that he passed. I knew they were close (by his pictures.) I asked how he passed. I said that even though I only met her and her sister once when they were very little, I always thought about them. I gave her my contact information and said it was ok if she wanted to reach out. More than ok really.

Then shock of all shocks. About two months later I get a message back from her. She apologized for it taking so long and said I ended up in some strange folder (just like I thought I might.) She said she and her sister have been looking for me and missing me their whole lives. She said our father would talk about me and had some pictures around of me, so they always knew I was their sister. They just didn't know why I wasn't in their lives. She said no one would talk about it. I'm hopeful he was ashamed of rejecting me. She said they would love to meet me if I was ok with that.

I was so excited and hopeful. But trying not to get my hopes up too much. I wanted to be a part of their lives and learn everything about them. I hungrily sought out pictures of them. Much to my surprise I look like a perfect mix between them. We met a few weeks after that. Just the three of us. John dropped me off so I wouldn't have to worry about driving. What a guy. The three of us bonded quickly. I had John take some pictures of us together. 

They are both partnered up. My youngest sister has a 10 month old baby boy. My middle sister has four children. Three boys and one girl ages 3-8yrs. I instantly became an aunt to five more kids. WOW! I can't wait to meet them all. That was delayed a bit because...

We went to Hawaii for our 30th wedding anniversary.

We just returned a few days ago. We had a magical time. We both agreed it was our best vacation ever. The ocean is just amazing there. There's nothing like it in California. The waters are tropical blue and so clear. You just stick your face in the water and there are mobs of colorful fish.

My fantastic mother watched the puppies for us and did an amazing job. They were so happy and well cared for. I couldn't have done better myself. I was able to completely relax and have full peace of mind while away knowing she was there for them. They were her full time job.

(We don't want you home Mom! We're being spoiled.)

I was able to enjoy vacation even more because...

I found a new supplement that is actually helping with my energy levels. Finally. Someone in my Adults With Mito online support group recommended it to me. I decided to give it a try and it works amazingly well.

It's called NR Nicotinamide Riboside. It's an "NAD+ Precursor." It's a member of the Vitamin B3 family. I take 300mg (1 pill) first thing in the morning. I was taking more but it was working too well and giving me insomnia. I get it through a company called Genex Formulas. At $38.14 a bottle of 60 pills it is well worth it. 

New family, new energy, new memories and 30 years of marriage. I could not be happier.

What a Man

July brought with it the death of my beloved grandfather. My mom and I had been planning for months to bring him back here and help him move into a lovely VA Residential Home. I had been gathering documents from his birth certificate to his military records, buying things to make him feel at home and helping my mom get her place ready to have him until a room opened up.

We had just seen him in March for almost a week where we convinced him to go along with our plan. However in true papa form the second we left the house he changed his mind. He had not been answering his phone and hanging up on us when we did reach him. The whole situation was very sad.

March, 2024

We knew he had COVID a few weeks before we arrived because his doctors office had called my mom to inform her that he was sick. She called an ambulance and the hospital told her he tested positive for COVID. He had never been vaccinated thanks to his conservative nut job of a doctor. The hospital wouldn't admit him, despite his advanced 95 years because he had no fever and his blood oxygen levels were good. My aunt had been able to speak to him and send him a care package of food and medicine. She last spoke to him a few days before we arrived.

Although not speaking to him on the phone, my mom and I had been sending him letters and cards. She had also been in contact with the manager of his complex where he rented a small townhouse for the last 18 years. He knew we were coming to take him back with us and what time and day we would be there.

After a full day of driving and a good rest we arrived at his house optimistic and expecting to take him out to breakfast at his favorite waffle house. Instead we found the door bolted shut. I assumed that he had done it to keep us from taking him home with us. Like a child who locks their door when there's something they don't want to do. I even swore I heard him come and check the locks and wiggle the door handle, making sure it was good and shut.

We called the manager to have him unlock it, but it had been locked from the inside and he was unable to open it. We called out, looked for an open window and tried to talk to him. I called 911 when none of that worked. The police tried to talk to him through the door. They went around looking for an opening as well. Then they pretty much gave up and said it was up to the manager and us if we wanted to break the door in. We did.

July, 2024 - The manager breaking down the door.

The cop drove off and we coaxed the timid manager into action. An hour after we arrived he knocked the door in. I was the first to enter, calling "Papa" as I looked for him. I thought he might be hiding, or have even taken off out the back when he heard us knocking the door in. People can be unpredictable when stressed. Then I turned the corner and saw him dead.

He was laying on his bedroom floor on his back, expired from COVID. I saw right away that it had been a very violent, horrible death. His whole house looked like the scene of a horror movie. Tissues everywhere, food left out, cupboards open, unopened mail and packages. But he had also been packing. Two large suitcases were on the couch with clothes methodically folded up and placed inside. Important papers were strewn on his dining table with a satchel next to them. Some toiletries also placed inside along coins he had been saving for my son since before his birth.

He had been packing to come back with us.

It was beyond heart breaking. I choked out to my mom and the manager that I thought he was dead, pointing to the bedroom. They ran in and confirmed the worst. He had been dead for a few days. I'll never forget that scene or the smell in his house. It was the first time I'd smelled death like that before, even though I'd seen a few corpses at funerals.

I called the police back out. Then my husband. "I just wanted pancakes!" I sobbed to him. Burbling what had happened. My aunt was next who I had been texting the situation to. The police showed up quickly so I didn't have long to talk. My composure regained, my mom and I took care of business. While waiting for the funeral home to send their people out to get my grandfather, my mother and I sat in her Jeep and talked. And cried. And talked some more. Thank goodness we were together through this. It wasn't anything a single person should ever go through. 

The apartment manager had long high tailed it, no doubt stunned by the scene we all encountered. The men carried Papa out in a blue velvet bag. He would have approved of the color scheme and fabric choice, but not the zipper that went all the way down. He was a "half zipper man."

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When I was growing up I spent most summers with my grandparents. My mom worked like a Spartan to give me a good life. I adored my grandmother and loved spending time with her at their mobile home park.

Me and my "Nana" - around 1977

My grandfather was a truck driver for a lumber company. He worked long days hauling lumber up and down California. His massive hands were always rough. Always cut and bruised. He frequently had a black or missing fingernail. I found him gruff and scary. When he wasn't exhausted from work he was stinking up the living room with his feet, enjoying the "biggest piece of chicken." He also loved to tease me.

Scary big tough guy.

Teasing was big in our family and my papa loved to get in on it. He'd trap me in turnstiles, grab my nana's hand and say "MY NANA!" Till I shrieked that she was mine. I loved him, but I can't say I liked him back then. We did share an interest in nature and bonded over watching shows like Wild Kingdom and Miss America. "None of them are as pretty as Toni" he'd boast to my grandmother. I'd sit there beaming and drawing.

It wasn't until my cousin was born and he had retired that we started to become close. When my son was born that just sealed the deal. My son was the first boy in my family for many many generations. My grandpa was at the end of the day a very "man's man."

He spoiled my son in ways I never knew he was capable of. It was beautiful to see them together. Even as a baby. I felt so happy for them to have had the close relationship that we didn't have till I was an adult.

My grandparents loved living by the sea.

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My papa was a curious person and enjoyed learning new things, though he didn't seek out new things much himself. As my mom says "we are all of us a contradiction." 

He was completely devoted to my grandmother, his only girlfriend in his life and the only woman he'd ever kissed. He cared for her until her death of dementia two years prior. He could be angry and selfish and he wasn't a great father. He never drank or smoked and was a "born again Christian." He read the Bible daily and both loved and raged at God. 

He was a simple man who loved the ocean as much as he loved nana. And waffles. He really loved waffles. 

Papa at the ocean. Around 1972.

It's hard for me to think of him and not see him stretched out in "his chair" next to "his TV tray" with the biggest glass mug full of ice and Dr. Pepper. A full stein's worth. Not that either of them knew what a stein was. He'd sit like that from the time he got home from work till bed time. Relaxing and watching TV. "Hee Haw," The News, Carol Burnett, Nature Shows, he wasn't picky. 

Church on Sunday was a must. Eating out in a restaurant after was my favorite. I was always allowed to pick what I ate. I was known for my ability to put away copious amounts of spaghetti, so he started calling me "spaghetti chopper." He would lean over and cut the food on my plate for me till I was 42 and told him it was ok and I could manage it. Then when I became disabled he took up the practice again. 

He was kind and I enjoyed seeing his softer side. He cried easily, like everyone else in my family. I often saw him cry in church or over hearing of another person's troubles. I loved that about him. He could be silly and playful just like my nana. I think that's one strong thing that kept them together. 

Fitness, health and strength were vital to him. They would buy vitamins when no one else was doing it. If my grandmother read of some health kick they should be doing in Reader's Digest they would get right on it. She'd fall off the wagon fast and give in to sweets, but he'd keep right on with the fish, vegetables and vitamins. 

Papa loved to show me ocean creatures or something creepy that he'd caught. I think 99% of my "show and tell" items came from him. A dead bat and rattlesnake tail are the standouts in my memory.

Until the day he died I'd never seen him without a hand grip exerciser. In fact, two were laying on the floor next to his dead body leaving quite the puzzle. Was he using them in bed while dying of COVID? It's not out of the question. Even a police officer remarked on it. "What's with the hand grippers?" she asked. "He loved them" was all I said.

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My mother and I spent the rest of that week taking care of his business. Closing his bank account, his mail delivery, going through the house for whatever we were going to keep, having him cremated. When we picked up his ashes the day before we were to leave he was even still warm. 

Working on all the details with my mom. The two of us were amazing.

We scattered some of his ashes in the ocean at his favorite beach. A place he had walked a thousand times and I had often walked with him. A lone pelican flew along the bay putting on quite a show for us. Then its mate came and joined him just as the sun was going down. It was magical and inspired the memorial tattoo I was to get when I returned back home.

The place they never wanted to leave.

Grandad did come back home with us, just not in the way any of us thought he would. But he also stayed in the place that he and my grandmother loved so much and didn't want to leave. He had it both ways. 

Things in the way (AKA: LIFE!)

Life will always throw distractions in the way. Unfortunately I'm part bird, so I'm easily distracted by the shiny and new. I'd much rather play on my Instagram gardening page apparently then focus on the really important.

My hobby - rescuing plants from our local dumpster. 
It's so rewarding!

In fact I've been feeling SO incredibly distracted lately that I had to sit myself down and make a list. Here it is. It's called "What Matters to Me."

• ·     Money back from old gym
• ·     Re-Join new gym
• ·     Lose weight
• ·     Do Yoga again
• ·     Sell the eBay stuff to make trip money
• ·     Re-activate my MFT license (take needed CEU’s)
• ·     Help Papa get into VA home
• ·     Stay on budget

That last one is rough. I'm not known for keeping a close eye on my budget. Especially with the cost of everything rising 20% recently. But I want my husband to be able to retire as soon as possible, so this needs to become important to me. 

I will always make time for art.
My latest ceramic piece. A little garden Goddess.

Getting rid of things I'm not using and letting them go to people who will love and use them is why I'm selling some belongings on eBay. It makes me feel good that something I'm just holding onto will instead be important to someone else. I'm happy there's a way I can do that and also make a little money. That matters to me.

I miss my old gym terribly. Luckily so does my mother. It's going to be hard for me to get my money out of them. Sadly I can't afford both the new membership and for the old gym to keep my money (see "stay on budget.") Good thing I'm not terrible at getting what I want. I hope I don't have to escalate things with them though. That takes time and energy I'd rather spend at the gym.

Margo and Max will also always get my time and attention.

In fact, they get the most of it.

My two toddlers.

In the meantime there's nothing stopping me from doing Yoga (other than myself.) I managed to do "Chair Yoga" once this week. I'm going to do it again today. I did it along with a video I found on YouTube for people with Cancer. It was excellent. Just what I needed to get me back into Yoga without injury or too much pain.

Next Sunday my mother and I are going back to Oregon to get my grandfather and move him back to California. He's no longer able to live independently and his rent is going up again to a place where he can't afford it anymore. He does not want to go, so we have a battle on our hands. It won't be a "jolly time had by all at the beach." But family matters to me a lot, so there we have it. It will also take as many people as possible to help my Papa through this very hard time in his life. Transitioning to a home.

So there we have it. What matters to me and where I need to be focusing my time. Not that I still won't spend some time on the "shiny" and "new." But these can still be my anchors of attention.

"Look at me. I am the captain now."

The other day I realized that I am once again the captain of my life. For so many years I slipped behind my illness, too weak to have autonomy or do very much on my own. My illness dictated...

• What I wore: Lose clothes that were easy to put on and take off. No bra. That was too much work. Or sometimes just wearing pajamas all day.
• Who took me places: I couldn't drive myself anywhere anymore and I relied on others completely.
• What I ate: I couldn't cook very much and preparing food was draining. I'd have easy gluten free options. Mostly I'd eat what my husband and mother would purchase and cook. 
• When I did things: I was always on other people's clock's. And I'd have a huge nap around 1-2PM, so that would cut into my day in a major way.

My illness even controlled my love life. There was no part of me untouched by my mitochondrial disease. But now...

Now it's all so fresh and new. I have the energy to wear whatever I want. I can drive myself to the store AND cook a meal myself. I can bathe, dress and put on some makeup if I want to, when I want to. These all sound like such small, basic things. Each one, each experience, is something I had been robbed of these last five years.

I also now have opinions. I get to have even more of a "say" in my day-to-day. For example, my sweet mother who loves to cook offered to bring snacks and food for us to the gym when we go. Instead I told her I wanted to do my own food. I love her food, but I missed that autonomy and the simple act of caring for myself through food. 

Suddenly I am the captain now. I'm back in control of my time, body and life. I still have mitochondrial disease. Just now it's more of a passenger rather than the captain. 

All about MAX!

Meet MAX! Max is my support animal. He is the best behaved dog ever. I joke that the second we leave the house and get in the car to go on some adventure (or just to the store) he turns into a stuffed animal. So quiet and just sniffing the world around him. At home he's a trouble maker who nips at our heels as we walk down the hall. I'm guessing to show his annoyance at being so little while we are so big.

The story of Max begins October, 2021 when I saw this...

click to make bigger

The second I saw that little face I KNEW he was meant for me. I just knew it. It wasn't love at first sight. It was more than that. Soul mate at first sight would be more accurate. I told my husband about "Ethan" (what a God awful name.) And he agreed we could apply to adopt him.

Our little man had been rescued from a hoarding situation along with 11 other dogs. I had been looking for a miniature pinscher due to their small size and less anxious nature than other small dogs. There were three other families applying for Max, but I won out in the end. Of course I did. We were meant to be.

Two weeks later we were on our way to bring him home. He was living in a foster home and she was sad to see him go. I think she would have kept him if she didn't already have cats and dogs of her own. He was a rolly polly little pudge ball. Like a round "potato." His first nickname.

The first time I met Max at his foster Mom's house.

Poor guy was twice the size he was supposed to be. We kept our fingers crossed he wouldn't die before we could get his weight down. He breathed very heavily and had a hard time going up and down stairs. We also quickly learned that he was deathly afraid of wood floors. Uh oh. It's a common thing for dogs but nothing we had encountered before.

Max also had acid reflux. I'm not sure if he had throat damage from being so obese, but he still has to take a Prilosec every day or he throws up at night. 

Our first days went smooth. Super smooth. He didn't know how to go for a walk and was scared of everything. But with love and patience all of that went away.

Coming Home!

We also learned that Max was not 3-5 years old like we had been told, but 6. I'm glad I didn't know that at the time however because I might have had second thoughts. 

I made all of his own food feeling it would be healthier for him and better for his digestion. I took over his weight loss and eight months later he hit his goal weight. 

The first time he slept like this we died laughing. 
It's a breed trait. Most minpins do it. 

Lucky for us my mom (who lives close) also fell instantly in love with Max and he with her. She takes him out for car rides, buys him "pup burgers" and walks him at our local cemetery. She also watches him on those rare instances he can't come with us.

It didn't take long for Max to start coming everywhere with us. He loooooved car rides from the first moment we got him. It took him a bit to feel comfortable out in the wide world however. But the more we took him the more he loved it. Especially safe in his sling with me.

Snug in his sling.

How I carry him now. A special front facing backpack.

It requires less arm strength from me.

Max also quickly proved himself to be an excellent service animal. He lets me know when it's time to rest or when I'm tired when I don't notice it myself and am engrossed in something or pushing it. He'll nudge me or just go to bed and wait for me to join him. And if I'm not doing well and in bed he stays by my side (unless Dad's eating peanut butter.)

Max is the smartest dog we've ever had. He's quick to learn new things. He just wants to be with us all of the time no matter what we're up to.

Smart boy solving a treat puzzle.

His first "pupachino" to celebrate hitting his goal weight.

We can't imagine our lives without Max. He's the funniest, funnest little bundle. His personality is enormous and I feel so privileged to be able to share my life with him. Love and patience have led him to grow into his own sweet dog-hood. We all fee lucky to have Max to share our life with us. I only hope he lives forever.

My husband likes to make pictures in my Sunday coffee.

This one is Max.

He's road trip ready!