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.

52 and THRIVING!

These days I'm not just "surviving," I'm THRIVING!

I spent the last many years surviving. Going from one physical crisis to the next. I'm thrilled to report that I've been "crisis free" for about five weeks now. I'm also getting stronger every day. Here's what I'm doing that's working for me.

• I work out in some way daily. Dog walks, my trampoline (affectionately dubbed "Fatty Bounce Bounce" by my husband), my new gym, swimming with my mom, long walks every Saturday with my husband.
  
  
• Wearing my FitBit every day to track my sleep, heart rate, HRV and overall progress.
  
  
• Using Hungry Root for dinners during the week. We get about three meals a week with ingredients and the menu delivered right to our door every Monday morning.
  
  
• Eating strictly vegetarian and limiting my animal protein. A little cheese, yogurt and eggs.
  
  
• Watching my weight. So far I just watch it go up a little and down a little, but it's a work in progress.
  
  
• Resting when I feel tired.

That natural glow is from sunshine and exercise.

Since adopting these practices I'm feeling much more myself. My migraines remain an issue. A side effect from my craniotomy, I'm sure. But my mitochondrial disease feels to be in full remission right now.

With that comes a huge adjustment and also some fear. Fear that it could turn back on me just as suddenly as it went away. I'm on my guard, but also just loving life.

My husband and I walked just under three miles with our little dogs yesterday. I was exhausted, but felt so proud. It was the farthest I'd walked since I can remember. Just a month ago I struggled to walk a mile. I also carried one of our dogs or the other for at least half a mile. That's an extra 12lbs.

I told my husband I'd never poo poo another 12lb weight loss again.

This little guy is solid!

I still have severe dizziness, and "ice pick" migraines daily. I have been taking Qulipta 60 mg every night and it was working very well. Then it felt like I acclimated to it and it stopped being so effective. That seems to happen with me and medications.

My migraine neurologist is going to try me out on Lamictal 25mg instead to see if that helps. I feel like I might have tried it before, but I don't remember. It's an anti-seizure medication that should help with my type of migraines. 

In the meantime, I will try to keep up the good work and continue to re-build my body from being so ill for so long.

How Summer's Going

Summer 2025 is more than half over and it's going very well. The less animal products I eat the better I feel physically. I'm also have a lot less pain, especially at night. This is a huge leap from the person I used to be. Someone who would lay in bed at night and cry from the pain. 

I very quickly went from using a motor cart to shop to not even using my handicapped parking. And this...

I haven't seen the dimple in my "bad leg" in at least six years. It's usually always swollen no matter what I do. But now it's almost as strong as the other one. I've been biking and swimming, so I'm sure that combined with my diet is why.

This is how I feel. Like I'm "almost me again." It's the best feeling in the world.

I've been pushing myself, but paying close attention to my limits. I did a mile and a half walk with my husband yesterday and made 10,000 steps for the first time since I became ill.

Right now I eat a vegetarian diet with minimal dairy. And the dairy I do eat is usually fermented, like yogurt. I use oat milk in my smoothie and just eat a lot of Buddha bowls and Mexican with no cheese. The biggest dairy I eat is eggs, which don't seem to bother me.

I've gone from riding my wheelchair to the pool to swim with my mom to riding my electric bike! And yes, I do peddle. 

I work out with pool noodles and water weights about three days a week.

Another accomplishment this summer, no fear of being in the pool alone.

My mom observed that both of us usually feel our best during the summer. I agree. I think I am the most physically active, despite the horrible heat. I also tend to naturally eat a bit lighter and not quite as much.

I have felt hungry almost every night in bed. But I'm down to 281, which is a big deal for me. I'll be so happy to break through the 280's. What a wonderful summer of success!

Self Love

What would you do if you knew today was your last day here alive on earth? Who would you talk to? How would you spend your time?

As someone who has always been unafraid of death, these are questions that go through my head often. "Is this the last time I'll ever see this person again? The last chance to hug them?" 

Everyone in my life whom I love knows just how much I love them. I'm very vocal about it. I hug tightly and let them know in as many ways as I can just how important they are to me.

Am I that important to myself?
I'm working on it.

Self-love is an evolving work in progress for me. As I kid I remember hitting myself, choking myself, biting myself. As a Psychologist I now know these are all common trauma reactions, especially in girls who have experienced SA. So is self hatred. Especially hatred of their bodies.

It has taken me a very long time to turn all of that around. To nurture that young girl and ease her trauma. Now I find self love talk to come easily. I am gentle with myself. However doing what's in my best self interest is still a struggle. 

• How I spend my time.
• Staying on a budget or planning financially for the future.
• Making the healthiest choice for my body.
• Putting my needs first (even before my dogs.)

All of these are a work in progress for me. I've come a long way (baby) but I still have a bit of self love that I want to grow into.

My new Fitbit. An act of self love to invest in my goals.