Terrifying Side Effect

My health feels overwhelming most of the time. 

Yesterday I had a major episode that was truly terrifying. I had my annual flu shot in the morning. I've never had an issue with it ever in the past, nor with any other vaccination. Ever. Yesterday was a first. Three hours after my shot I felt myself getting weaker. By five I was terrified. I was home alone and my muscles were so weak I could barely work my phone or speak. I though about calling my mom over, but my husband was due to be home any second. I also thought about calling 911, but I didn't want the dogs upset. (Yes... even my dogs come before me.) 

Finally my husband came home. As soon as I started talking to him I started sobbing. I mean 'snot crying' big time. I could hardly get out what happened to me between the tears and muscle weakness. Somehow he understood. I asked him to make me a Gatorade. The last in the house. It has helped in the past. He then crawled into bed with me and comforted me. It was all very helpful. I decided I would wait and see if I got any worse and if I did, then I would go to the hospital. 

Fortunately I didn't get worse. After about 90 minutes after the Gatorade I even improved a little. The tide was being pulled back. I was so scared. To suddenly lose your muscle strength like you've been hit with a blow dart. It is a very horrific thing to experience. I haven't had that happen to me for about four years now. The last time I went to the hospital by ambulance. 

I still feel weak today. When I went to the hospital what made me better was a full IV fluid bag and antihistamines. Strange. My body is such a complex creature. When she's unhappy, she lets me know it with both barrels!

I've been very busy lately. Living my life to the fullest. Family, kids, the ballet, stand up, late nights, company, booze. Not sticking 100% to my short chain fatty acid diet. Working out extra hard, pushing myself over my limit. It's time to pull back and turtle up for a bit. Let my body calm down and recover.

A little taste of my busy life

Keep Calm and Fight!

So the world imploded last week.

Again...

First Trump won the Presidency in 2017. We had him keeping the seat warm till 2021. Now we're in for him again. Both times he ran against women. The first time he lost the popular vote. Or as I like to think of it the "real" vote. The second time he won "for real" with the majority of America preferring a narcissistic dictator to a woman of color. Of course they did. No surprise there. Women of color are valued the least in this country.

Vice President Kamala Harris.

I really wish she was our new President.

I was crushed, then enraged. Disgusted with every single person who voted for him. I grieved for what could have been under a more liberal, collaborative leader. 

Now I'm just sick and tired of women being treated like trash. Of course there are other parts of the world that are much worse. But on average I do not feel like women are valued at all.

Like a phoenix I'm rising from despair into action. Women's causes are now my number one interest. I'm taking my time to consider where my help would be most impactful, but I am planning on actively working for the greater good of women. 

August 26,1920 Women are given the right to vote.
Not very long ago

Will that be a support group for disabled women? For mother's of special needs offspring? Volunteering at Planned Parenthood? Working for reproductive rights, equal pay and other women's causes? I'm not quite sure yet. My time is limited, so I want to make sure I'm making the greatest impact possible with what skills I have.

Maybe even just a women's only support group where we de-stress and share? A women's circle.

Hmmmm, that has potential.

Times and Tides

I have learned in my 51 years on this planet that if I pay close attention, nature is the best teacher of all. That's one of the things I love most about Polynesian culture. Although it's not the only culture that lives so close to the Earth, it's the main one that I know and admire. Living on a volcanic island, like Hawaii and Iceland, you can't help but live in sync with nature. You are hugely dependent on nature for your survival. Any second you could be wiped out by her wrath, or enormously rewarded. We've lost that connection in more urban environments. No matter how many parks and green belts there are.

Not the same as a park

One of the big lessons nature taught me is that no growth can occur without destruction. Usually complete and violent destruction. Mother Nature loves nothing more than a clean slate. I respect that hugely. I look back on my life and see my own biggest periods of growth occurring after total devastation.

The Hawaiians also know this, which is why they focus on the "now" so intensely. Everyone has heard of "island time" and "hang loose." To me those mean exactly what my mother practices and knows so well. "Life's too short and precious to rush through." It's very easy to get caught up in the pressures of everyone else around you and start rushing through everything, even when there's no need. Rushing to our cars from the store. Rushing through the store. Rushing to the store. What happens if we're late? Typically nothing awful. You're just a little late *but not by "Island Time!"

Hawaiians also take full advantage of all of nature's gifts. The original native diet was very high in fish and fruits. It wasn't until American's came to take over that we introduced Spam. Although the Japanese labor force that was imported in to work the pineapple fields can take the blame for rice. I felt like I had never eaten a banana before until I had an Apple Banana in Hawaii right off the tree. Here we shop at the grocery store, or if you're very lucky, the Farmer's Market. But we typically eat far from nature. 

I'm very guilty of this. Frozen pizza, macaroni and cheese, heck! Even just cheese and yogurt. All are heavily processed foods that are known to contribute to disease. Does that stop me? No. It's what I grew up with and what I love. Though culture can and does change. Again, nature taught me that nothing is permanent and everything changes all the time. Even when you can't see it. Seashores are being eroded. Soil shifted. Rocks worn away. Diamonds created from stardust. Humans from blobs of cells. 

There is nothing from nature on this truck

Every so often I feel like I wake up from a culture induced stupor and wake up to the tides of nature. Fall has historically been one of those times for me. The changes in the natural world are so profound at this time that I can't help but to take notice. This always has been a time of inward reflection for me. This fall I didn't like what I saw.

I saw myself self-sabotaging over and over and over again. Doing nothing to support my own health. And little that nurtures my mental well-being. I have been shoving down the anger and grief over the death of the main male figure in my life, my Grandfather, who passed violently three short months ago. I have been feeding myself to comfort mentally rather than feeding myself what I know I need physically. I have been taking great care of others and not so great care of myself. A tried and true pattern of mine. I put other's preferences ahead of my own and lose focus of my own path as it crosses with others.

I am painfully aware of how easy it would be for my to lose myself completely to my new family. Stop going to the gym and just focus on them. But I have goals and I need to re-focus right now.

My Goals (what I want to re-focus on)

1.  My health. Eating the foods I need to eat to be as strong and healthy as possible. High fiber whole foods that will product short-chain fatty acids in my gut microbiome. Not long. This also includes going to the gym at least three times a week to work on my strength and flexibility. 
   
   
   
2. My creativity. Setting aside time for writing, ceramics, drawing, painting, whatever I want to express what's inside me.
   
   
3. My emotions. Processing my feelings about the horrible death of my grandfather.
   
   
4. My empathy. Spending time with my son, my mother and my new family. Also in here I put completing my CEU's to maintain my MFT license.
   
   
5. Making Money. Selling our unwanted stuff on eBay and maybe starting a support group of some kind. Getting back to working one or two days a week.

To accomplish my goals I need to be committed. Dedication and focus is what I need right now. Because there will always be more laundry and I don't need mac n' cheese.

I rebuke you Satan! 

My Hindsight Is 20/20

When I first started this blog six years ago I was terrified. I felt like my whole body was failing on many levels all of a sudden and I didn't know why. Feeling like I had no control over what my body was doing was very scary. 

Looking back I can see little threads of struggles all through my life.

I was a very tired kid. I had serious sleeping disorders. Nocturnal panic attacks, sleep walking and talking. I fell asleep at school frequently only to be woken up by an annoyed teacher. I always had "growing pains" in my legs where my legs would just ache for no reason. My mom even took me to the pediatrician for pain in my legs. I remember it being dismissed as "growing pains" (which are not a "thing" anymore thank God.)

My back hurt almost all the time. When I would be roller-skating with my best friend (a favorite activity of mine) I would need to take breaks and she would rub my back for me. It was one of those things you don't know is abnormal because it's all you've ever known. Looking back now I see red flag after red flag that I had some kind of health issues happening.

As I grew so did my strange health symptoms. I had endometriosis so severe that I had five laparoscopic procedures to remove abnormal tissue by knife and laser. It grew on my bowels, bladder, intestines, uterus, ovaries, pretty much everywhere it wasn't supposed to be, causing me incredible amounts of pain. Now we know so much more about it and what a serious disease it is for women. But back then the male ER doctor just smirked at me insisting I had an abortion when I wasn't even sexually active. 

My thyroid failed, then my gallbladder. I had mysterious Fatty Liver Disease and just felt tired and drained all the time. I struggled to live a normal life and work 9-5. My physical stamina was never the best.

My one child was diagnosed with Autism very young. Researchers now know that women with autoimmune diseases are much more likely to have Autistic children. 

I had many moments before any official diagnosis or my brain tumor where I just felt like "I can't do this anymore. I can't go to this (class, job, meeting, coffee...) I'm just too exhausted." I'm not sure that's actually normal.

This was all before the TB. Before the craniotomy. Before I needed any mobility device. So was this just a sneaky genetic malfunction that has always been with me? Or did my propensity to health challenges hurtle me down a spiral of worsening issues? It's interesting to look back and follow the threads. Regardless of the causes, to me it looks like one massive web.

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.

I Am A Self Sabotager

I feel like I need to go to a support group for self sabotagers and people with eating disorders.

"My name is Antoinette and I'm a self-sabotager."

"HI ANTOINETTE!"

I mean seriously.

What is wrong with me?

I know I'm far from alone when it comes to self sabotaging, but I also feel like I have more on the line than a lot of people. Or do I? Smokers smoke themselves to death all the time. But I don't want to eat myself into a wheelchair. I really don't.

The feelings...

I feel huge.

I feel like I'm making my pain worse.

I feel like my food choices are making me weaker.

I feel like a failure for not eating what and how I should to make myself well.

I feel like I'm punishing myself over and over again, but I don't know why.

I feel scared that I can't do it.

I feel confused why I keep doing this to myself.

The facts...

I'm not "huge."

I "could" be making my pain worse. It's not a fact.

I need to make better food choices for my health.

The bad choices I am currently making are contributing to my health, for good or for bad.

I have been working out. (I feel proud about that.)

Every time I eat is a new chance to change and improve my choices.

I'm not alone, everyone self sabotages, don't be so hard on yourself.

"Self-sabotage often serves as a coping mechanism that people use to deal with stressful situations and past traumas. Unfortunately, it typically makes problems worse and limits a person's ability to successfully move forward in a healthy way."

-VeryWellMind on Self Sabotage. Click for more.

Food is my "self medication" of choice. Drug of choice. I love the taste of food with a lot of preservatives. All that fat, sugar and salt. Yum! When given a chance that's my go-to. Frozen food. Fast food. Diner American style food. Whoooo Mama. Gimmie that pie and cinnamon buns for dessert too.

I love to eat this way. 

And "love" is hard to walk away from.

It's an addication.

But I have to love myself more than the food.

Isn't that what it comes down to for all addicts? You have to love yourself enough to want to change. And it's not like you change once and you're done. I have to choose to change at least three times a day, plus dessert. I can't just put down my drug and walk away. I have to change and change and change and change.

I need stamina, grit, determination, focus, willpower and strength. And I need it all of the time.

If that's really what I want. Like 'three wishes genie' want. Then that's what I need to get there. That and endless amounts of self love with the ability to put myself first.

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."

---------------------------------------------------------------------------------

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.

--------------------------------------------------------------------------------

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.

------------------------------------------------------------------------------

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.