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.

A Snapshot in Time

 April 4th, 2018 I started this blog. I knew something was wrong with me, but I had no idea what. In 2015 I tested positive for Tuberculosis. I was on the drug Plaquenil for 9 months. It was awful. I had a whole slew of side effects and took a year off of grad school mid-way through a two year program. I was a wreck. 

At the time it was the worst thing that happened to me physically. HAH! I just have to laugh looking back. It's like stubbing your toe and thinking that's the worst thing ever only later to have all your limbs cut off with a chainsaw.

I won't rehash my complete timeline, because I did a good job doing it here with pictures. But writing a book about my journey has been on my mind. Given that I was thinking pictures are more powerful than words sometimes. My opening could be this montage of my journey...

Success is the word for this year.

I graduated with my Masters in Counseling Psychology. But by the end of the year I'm experiencing some pretty major fatigue. I intuitively know something is wrong.

Fighter is my word for 2018. 

I got my Mitochondrial Myopathy diagnosis, along with brain surgery. I felt like I was just fighting everything coming at me this entire year. My mobility was a big struggle this year. It was all terrifying. I worked full time this whole year.

Surviving is the word that comes to mind for 2019. 

You know how they say "thrive, don't just survive." Well, I was surviving as best as I knew how. I left my dream job, no longer able to keep up mentally. I'm diagnosed with chronic migraines and setting into using a wheelchair any time I'm out.

Joy.

I know that sounds so strange given what happened to the world in 2020. But for me it was validating seeing everyone's lives change so dramatically like mine had. It also brought us much closer as a family. Our son was living with us and we made a lot of moments of happiness this year. 

Content.

In 2021 I felt like I was really settling into my new life. I built up my core medical team and started finally feeling my symptoms being more managed. I felt much less scared than I had in the past. 

Weary.

Although I have many blessings in my life, I remember just being completely wiped out this year. I would try to have company or go to someone's house only to have it leaving me totally drained. I'm so fatigued that I can't make even the most basic decisions.

Miraculous.

This year I learn about my processing issues of long-chain fatty acids. I drastically change my diet and am mobile again. I still have a lot of fatigue and some atrophy, but I'm able to do so many things I thought I never would again. Everything is exciting and new again.

Thriving.

I'm working on my fitness and physical health. I still struggle with my chronic migraines and fatigue, but I'm able to do so much more day by day.

Insanity. (In a good way.)

I change my diet even more. I'm focused on short-chain fatty acids, gluten free and vegetarian. I feel even better. I can go some days with no nap now and when I do nap it's for much shorter a period of time. My strength and stamina is finally up to pre-illness levels.

I'm so excited to see what the rest of this year and next year hold. I'm working on my food addiction, so hopefully I'll make some progress there soon.

My Puppies

We've had dogs going on 22 years now. We first had "Snack." A beautiful yellow lab, basset hound mix. She was so sweet, gentle, kind and calm. The perfect "starter" dog and so great with little kids. My dream of having a menagerie of animals was soon crushed by my husband's insistence that we only ever have dogs. I was able to sneak in the odd fish now and again. But aside from two cats when our son was very young, we've only ever had dogs. 

When Snack got a little older I decided I wanted a puppy. I'd never had a puppy before and my hormones were going crazy. My husband said "no." I got a puppy. He lived with it. "Sweetie" was four months old and the only puppy at the pound when I got her. The same pound we got her sister from years before. They didn't know what breed she was. I just knew that I loved her and she needed us.

She grew into a beautiful whipped rat-terrier mix. (Best as we could tell.) She was very sweet tempered and we loved her every day of her life.

Snack (left) and Sweetie - November, 2007
Our family Christmas card photo

Next Came Lulu. My husband heard of a basset hound being dumped in our friend's backyard. She couldn't keep the dog and was looking for a new home. Snack had been gone for a while and John wanted a basset hound. It seemed like destiny. Lulu the basset was ours before the end of the day. 

     Lulu with our son 2013

Lulu and Sweetie kept us laughing for many years with their antics. Lulu was like having a stubborn, slobbery donkey. Sweetie became my close companion when I became ill and too sick to work. She loved wheelchair rides and naps with mom. 

(Lulu - With Sweetie behind her. April 2013)

We lost Lulu too soon due to a back injury. Sweetie grew old and cranky with us. 

Sweetie was with us till around 13. We took to calling her "Kreacher" after the Harry Potter house elf. Because she would walk by any room we were in, look at us with a disgusted look on her face and keep walking. "Filthy muggles" we'd mutter in her voice. Canine dementia can be amusing if you try hard enough. We had her for her long, love-filled life. 

Sweetie towards the end of her life.

2021

We were determined to take a "break" from dog ownership after Sweetie passed on. We wanted to travel if possible and not take care of a needy animal for a bit. That only lasted a few weeks. It literally felt like the heart of our home had died. It was empty, cold, lonely without a dog.

I was looking around online at different pets and I saw Max. The second I saw his picture I just knew he was my soulmate. We hadn't had a boy dog before, so this was a new adventure. Three other couples had already applied for him. He had been rescued from a hoarding situation and was at a foster home. I beat everyone out with my determination and commitment to him. I just knew he was our boy.

Max and I in our wheelchair days.

2022

2022

Two years later his sister Margo joined us. My muscles had improved and we were talking about getting a second miniature pinscher now that Max wasn't going out with us as much as before. I saw a beautiful female listed online as needing a foster. I commented that I "hope she finds one soon." Almost immediately I received a phone call from the organization. It was the same one we found Max on. They wanted to know if we would foster her.

They were desperate as she was currently in an over-crowded kill shelter and had been there for THREE MONTHS!!! I was also told she was pregnant. Oooooh no. But my husband and I talked it over. We couldn't leave her there. So we agreed to take her. The rest is history. She was officially ours three months later. Through kennel cough, immunizations and a spay surgery. Luckily they were wrong about the pregnant part. I couldn't have been more relieved.

January 2024

Who could say "no" to that face?

I will spend the rest of my life trying to right the wrongs that have been done to them both. Owning a miniature pinscher is like owning a toddler. They are very smart, stubborn, unpredictable and hilarious. Flustering, but they make me laugh all the time. They both came to us with substantial trauma. Margo more than Max. Before being in the pound for three months she was on the street. That's all I know of her story.

It has take a long time to soften her hard edges. But with love and time she has grown into an affectionate love bug. Both of my dogs adore the sling and being worn. Both love treats and being buried under blankets pressed closely next to me.

The older I get the more I dote on my dogs. They are my "fur babies" and I can't imagine my life without them. Each time I loose one my heart breaks even harder. But the love and joy they bring to my life makes all the heartbreak worth it. And they deserve all the spoiling I can afford to give them. 

Margo on the left and Max.

Yes, these are the same dogs.

They love being in my mom's Jeep.

And all the treats she gets for them.

So loved and spoiled.

August 2025

Tides of Life

Nature teaches us so many important lessons, but most people don't pay any attention. The biggest lesson of all is not to become attached. Nothing is permanent. Nothing. We are a speck of algae afloat in an ocean so big we can't even see the edges. 

People chase youth like they haven't earned every laugh line and smile crease on their aging faces. We bleach and dye our hair and tattoo our faces to look ever younger. Slice and dice our beautiful, time marked skin to falsify ourselves.

I've never been a youth chaser. I like to do what makes me feel good. FOR ME. But not for anyone else. Our youth is not permanent. Even how our face looks today, this very moment. It will never look that way again. We are ever-changing creatures.

This was me in my 30's

Here I am at 52.

There are many times in history where I would be dead, or considered a super-elder. A wise woman in my tribe who outsmarted death. In today's society I'm just "middle aged." Or as my precious husband likes to put it "A Woman of a Certain Age."

I feel I laugh more, smile much much more (I used to be super conscious of my teeth. Now I'm just happy to still have them.) Forgive quickly. Help without question. Love harder. Hug longer. I truly appreciate each day and have nothing but gratitude for my life.

I should have died a handful of times over. Without modern science I would have. Each day is precious to me. I know that nothing lasts for ever. Especially not my fragile existence. Definitely not my outer beauty. And I'm ok with that.

First Time

Monday was the first time in about eight years that I drove a fair distance. I took my son to the beach town of Sausalito, about a 90 minute drive from our home.

Growing up my son and I would take trips together frequently during the summer. My husband was always working hard to support us and so I could stay home and be a full time parent. That meant it was usually just the two of us during school brakes. We even drove to Los Angeles together, about 7 hours from our house. 

I always enjoyed these day trips with my son. We were adventure buddies and built great memories. 

Now he is 31, but he also lives very close, doesn't have a partner and doesn't drive. He doesn't leave town unless we take him somewhere. We try and do that a few times a year and he always enjoys it. But it isn't the same as it just being the two of us.

That's why Monday was so special. I was giddy to be able to be so physical. We hiked the blustery beach, walked to an old military bunker, and climbed some steep, old, cement stairs. Things I could never even imagine doing a few months ago. Bodies are so amazing. Our ability to heal and recover. 

I feel so alive right now. Like each moment is a juicy peach and I'm just savoring all I can. Each second I'm able to walk, bike, run, swim, climb is an enormous gift. One I never thought I would be able to enjoy again. I have gratitude and love in my heart to the universe for its magical, unpredictable ways.