Camping? Not in a tent!

Tent camping was on my "mobility bucket list" since I regained my mobility. I had never been and I was excited to try it. I had visions of star filled skies, s'mores and peaceful sleep in the fresh air. What I hadn't factored in was the frigid c-o-l-d we would endure.

I have a dear friend who knew I was excited to try this. She and her partner camp in their "too adorable for words" van. Where I might add they remain snug and toasty as two bugs under a rug. They secured us an "impossible to get" camping place on a coveted beach. I was thrilled. Being part mermaid I adore the ocean and go any time I get the chance. I agreed we would join them. 

My husband, two dogs and myself in a two person tent borrowed from my in-laws would join them... On the beach... In April... See where I'm headed?

I think whoever came up with the term "The good, the bad and the ugly" was talking about tent camping. 

It had...

THE GOOD:

The location was stunning.

The beach stretched on for miles.

The S'mores lived up to my expectation.

All the food that day was delicious.

The company could not have been better.

It was fun bundling up during the day and dusk.

The dogs loved it.

We got a lot of exercise.

The air was indeed crisp and fresh.

The stars were the prettiest I'd seen in years and years.

Our campsite was perfect.

The other campers were pretty quiet and respectful.

The tent went up quick and easy.

We didn't forget anything. (Ok... now I'm grasping for good things.)

THE BAD:

Public bathroom. Need I say more?

That was a TON of packing and unpacking.

Where am I supposed to change?

THE UGLY:

Asthma attack from the cold and fire.

We froze all night (the dogs were cozy and fine.)

Prison shower. No thanks.

The cold triggered my muscles to cramp and spasm all night.

It took me days to recover.

Margo hates other dogs and goes NUTS when she sees them. Do you know how many dogs are at a beach and go camping? She could be heard for miles. (Max was a dream.)

A dog walked by our car.

HOW DARE THEY!

All that fuss left a mark in the sand.

Technically I think I still haven't "tent camped" because I slept in the car. It was the only position I could be in where I could breathe. 

I think next time we'll say "goodnight" and book it to a hotel to sleep in. But it was great to have a brand new experience.

From Electric Wheelchair to Electric Bike!

Seven months ago I was an electric wheelchair user. Any time I left my home I relied on my chair to be my legs.

Now after selling Pablo I'm in the market for an electric bike.

We went down to being a 1.5 car family. The 0.5 is my mom's Jeep that I can borrow any time I want.

But I don't like relying on other people. Even my mom. I want to be independent. I also always loved bike riding. 

An electric bike is the perfect solution for me. I can use power assist for hills or full electric if I get too pooped (like on my way home from the gym.)

These bikes don't come cheap, so it's a big investment in myself.

At first I thought I wanted a three wheel bike for sure. But after looking in person I'm not as convinced. They're harder to pedal (because of the extra weight), harder to turn and take up much more space to store. There are also much fewer to test ride.

Cargo bike?
Maybe.

A three wheel model that has potential.

The benefits of having three wheels are the added stability. After brain surgery and a muscle disease that means a lot. If I do go two wheels I want them to be big and fat! (Like meeeeeee.)

My husband found this site where you can 100% customize your eBike.

The artist in me is really in love.

We will be going camping with friends for the first time ever soon after my road trip return. I may wait till after that to decide. A sportier model would be able to come with us on such adventure. A big three wheeler would have to stay at home. I'm not buying a truck to carry my bike.

It all comes down to how will I use it the most.

• Tooling around town from the gym to the store
• Carrying the dogs out to local parks and for rides
• Camping and biking along oceans on adventures

I'm not totally positive yet.

Until I am I don't want to make such a big financial investment. In the meantime I'm having fun looking, learning and test riding.

honk honk! Move it cars!

A pricy cargo bike

Adventure List

Now that I have more energy and my mobility back I have a list of things I would like to do. 

• Go Roller Skating
• Camping
• Ocean Swimming
• Snorkeling
• Running on the Beach
• Walk Barefoot Through a Meadow
• Collect Seashells
• Hike Through the Woods
• Go to a Botanical Garden
• Travel More
• Become Proficient at Yoga
• Dance with Friends (doesn't have to be in public)
• Ride a Bike or Trike
• Put My Hands in a Waterfall
• Create More Art

My Heart Is Bursting

Being more healthy and able bodied has allowed me to do something I would have never dreamt of before. I have taken in a pregnant dog. We will help her whelp, raise her puppies till they can be adopted and will give them all love and attention. 

Now that I'm healthier and gone more (mostly to the gym or doing a Target pickup order), we had decided to get a second miniature pinscher. We adore our Max and wanted to get him a sister. We talked it over during the holidays and decided March would be a good time to start looking. It seems fate had something else in mind.

I swear, if you think you have control over the future you are just fooling yourself. That's why living in the now is so vital.

It all started with my husband and I watching a TV show called "Too Cute." It had been in our cue for ages, but I wanted something sweet and relaxing. So I picked their puppy episode. Over the next thirty minutes we watched little puppies and big puppies from birth to about six months. It was a sweet show.

The very next day I got on Facebook to message my son from my computer. I saw the non-profit organization I got Max (pictured here sleeping on my legs) from post this...

I didn't think a lot about the pregnant Mama other than she was cute and looked a lot like Max. I've never been a foster and it wouldn't have occurred to me that it was even an option for us to take her. I replied to the post that we would be looking to adopt a female and maybe one of her puppies would be a good fit when they arrive. My husband and I were open to getting a (note the singular there) puppy.

What a sweet face!

The following day I got a phone call from the woman who heads their Nor Cal division. She had been the one who selected us to adopt Max. She was calling to see if we would be open to fostering little Mama through her pregnancy. All of the other foster homes were full and the new applicants weren't great. The shelter she was at (three hours from us) was also full and they needed her out ASAP. I told her we would have to think about it and get back to her.

She had some people for us to talk to who had fostered pregnant moms before. That was incredibly helpful to hear some first hand experiences and to be able to ask questions.

This was a massive decision. It would mean an incredible sacrifice of money, time and sleep. The organization would pay her vet bills, but we would be footing the rest. I'm not a girl to "make do" or do things half ass. If we were in, then we would be all in. We chose IN.

In an hour and a half we meet our "Margo." We discussed it and we will be keeping Mama and one pup. I will help her through her labor and delivery and raise her pups till they can be neutered/spayed, vaccinated and adopted. I will help screen potential families and place them. We are calling on all of our family and friends for help as well. 

This is all thrilling and terrifying at the same time. Luckily we have an amazing vet to help us. She already has an appointment for tomorrow at 9am. A sure way to make her fall in love with me. Take her to the vet. ((gulp)) I'll be sure to bring loads of peanut butter.

A lovely volunteer picked Margo up this morning from the shelter and brought her to the woman's house who contacted me. She spent the day there having her picture taken endlessly (much to my gratitude) and is being delivered right to our eager arms.

I have everything ready for her. My fingers are crossed that we catch a break and she's potty trained. They don't know much about her as she was just found as a stray with no collar or microchipping. We're jumping into the pool blindfolded.

I'm hoping Max will be ok with this huge change. He came from a hoarding situation where there were 11 other dogs and 7 puppies. Wish us luck!

PS: I have since been told that "You are the most organized, efficient fosters I have ever worked with." I told her "That's me! I am organized and efficient. If I take on a task I'm all in." 

My Colorful Life

Every day since mid-August (two short months ago) I pinch myself. I can't help but think "Is this how 'normal' people feel? Like allllll the time?" It baffles me. I can't remember a time when I had this... much... energy. Seriously. Not when I was a kid. Not as a teen. Not as an adult. I wonder how long I've actually had symptoms of this disease?

Here's what I've been doing with this new energy source.

• Friends old and new. Relationships outside of my family have been incredibly hard to manage with my crippling fatigue. It feels fantastic to be able to devote some time to my friends. And I've made a few new ones recently. Nothing I could have even considered before.
  
  
  
  
  
• Gardening. My husband said the other day that I've "taken over the entire garden." He said it in a good way. He's been incredibly busy. 
  
  
  
  
  
• Home decorating. My house was in need of a facelift. I'm in the process of painting our fireplace wall and getting my home ready for some company.
  
  
  
  
  
• Entertaining. Having friends and family in our home before was exhausting. My husband had to do most of the work. It wasn't unusual for me to have to leave mid-party to go and sleep. I'm looking forward to winter holiday entertaining while conscious.
  
  
  
  
  
• Working out. I'm enjoying the gym very much. I took a yoga class for the first time yesterday. I loved it, but not as much as Zumba. I'm a high energy person now and have fun dancing with a room full of other people.
  
  
  
  
  
• Max. Poor Max. Before he would be stuck sleeping with me all day. Now I walk him twice a day (weather permitting) and he's with me as much as possible. Just this morning I walked him around the block. Now he's about to come with me to the store. Later today we're meeting a friend for tea. He's my little "adventure buddy" and he loves it.
  
  
  
  
  
  
  
  
• My hobbies. My husband and I recently did a Raku workshop that was long and intense. It was also located on a farm. Not wheelchair friendly at all. Nothing I could have done before, even if I had the energy for it. 
  
  
  
  
  
  
  
  

I can't explain what it means to feel fully alive again. I didn't get my "life" back. Instead I gained new experiences, new relationships and a more engaging future. My life is richer. Fuller. It feels like the movie The Wizard of Oz when it goes from black and white to color. My life as a sick person was black and white. Now it is so full of color that it's blinding.

Nine Years Ago This Week

Shutterfly was kind enough to remind me this morning of what I was doing nine years ago this week. It turns out I was graduating from UC Davis with my second degree in Psychology. I now have three. I was also pretty healthy. I hadn't contracted TB yet and I didn't know about my then small brain tumor. I didn't have constant pain. I was able to walk miles in a day without any issues. I didn't need a nap every day.

Most of my memories are colored with my current reality. They're bittersweet. I miss being able to learn, work and travel. Our celebratory trip to Iceland was a once in a lifetime vacation. Although I feel that way about all of our trips.

I enjoy seeing what a bad ass I was back then...

Although I am still a badass! Look at what I was up to just a few days ago...

The muffler on Pablo our wheelchair van got ripped out when we went over a small metal square in a parking garage. It was so awful. I had to think on the fly and come up with solution after solution. Come to think of it, my life is still very adventurous! Ha ha.

"Are you going anywhere?"

I feel like I get this question constantly. From family, friends and strangers. "Are you guys going anywhere?" I can't say I've ever asked anyone this. It's like Veganism. If someone is going on a vacation... they'll tell you. They can't wait to tell you actually. They're bursting to tell you. That's why that question is most commonly followed up with "Oh. Well WE'RE GOING TO..."

Iceland, 2014

My husband and I used to love to travel far. The farther the better. We've been to the Canadian Rocky Mountains (twice. Banff and Whistler), Iceland, Ireland and Portugal. My husband has seen much more of the United States than I have, but I've seen more of California than he has. My company even took us to Hawaii back when I was working. 

Hawaii, 2019

These days however travel isn't on my radar. I love our little day trips and going a few hours away (especially to the ocean.) But travel is very hard for me. My vertigo, fatigue and muscle weakness make being in a car incredibly uncomfortable. I think the best I can compare it to is being super hung over and you just ran a marathon, now you're on a car ride as a passenger sitting on a balance ball instead of a seat. It feels like that.

Also interacting with other people is draining for me too. You have a lot of that on vacation. Interacting with strangers. So having a place to go to rest and re-charge is a must. I don't want to spend thousands of dollars and tons of time to travel internationally just to sleep in my hotel. That feels like a huge waste of money to me. 

Half Moon Bay, 2023

And then there's my house. Right now that's where I want to be putting our money. Back when I was healthy my husband and I would switch off. We'd take a vacation one year and do something to upgrade our house the next. Now it's more like going somewhere close and small and a small, continuous improvement on our home all at the same time. I love it.

I feel very grateful to have been all the places we went. I'm sure there are more things to be seen and discovered in the future as well. Just maybe not after a big airplane ride. And I have plenty of people in my life to tell me all about their adventures.

Meet Pablo

Four days ago we pulled the trigger and bought a wheelchair van. Not just any wheelchair van though. This thing is a fricken rocket ship! I'd like you to meet... Pablo!

Pablo is a 2017 Chrysler Pacifica Touring Limited Plus with only 4,500 miles. He comes with a Braun electric fold out ramp, light sand colored leather seats that are heated, heated steering wheel, automatic lowering capabilities, back up camera, satellite navigation system, blu ray players front and back and (my husband's favorite feature) climate control for each section of the car front and back. That means I can have my side at 60 and he can have his side at 80. Win-win. Also our 6'4 son finally has plenty of leg room in the back seat. "And I even like the color" (Indiana Jones joke).

We'd been looking and thinking about a van for almost six months. There was a lot to learn and next to our house it was the biggest purchase we'd ever made. 

There are plenty of disabled people who live out their lives without a wheelchair van, so why did I feel like I NEEDED one? I am a tall, large lady. I have a tall, large wheelchair that is built to accommodate me. Yes, I also have a travel wheelchair, but it gets uncomfortable quickly. And given I'm already in constant pain it is important to be to be as comfortable as I can (enter the seat heaters). My big wheelchair makes me much more comfortable and I can't use it without a van or a bus. The bus doesn't go everywhere I need/want to go when I want to go there. My town is small and I can go out in just my chair a lot of the time, but not everywhere and only when the weather is good.

Also, my husband and I enjoy going on adventures. I'm hoping in the future more of those adventures can include road trips. There may come a time where I am only able to transfer in and out of my chair minimally and not walk much at all. I like being prepared and not having things like that sneak up on me. In Pablo we can keep the adventures coming for years and years no mater my mobility status. Even if I'm completely immobile actually, which is really fantastic!

And yes, a lot of disabled people don't have a van, but they also don't have anyone to drive it for them. In fact a lot of them end up becoming "house bound" which is a horrible, but understandable situation. Options outside of your own van really stink and aren't free (much to able bodied people's shock). And even being driven around can be exhausting. So a lot of the time people just end up staying home. 

No matter how severe my mobility issues get I refuse to have that happen to me. I will nap when I need to, sure! But I will get out and be a part of the world and let the world be a part of me. 

Never a dull moment!

A few days ago an acquaintance said to me "You must get so bored sitting around all day. What DO you DO?" Once I got over my shock and the urge to smack her I took a breath and explained. "I am disabled. I have a chronic illness. This means I am always sick. I spend a lot of my time resting and I feel too ill to get bored". Although that is true, my days are also quite busy!

Here's what I had going on just this week:

My genetic testing kit came and my mother and I did it together. It took a few hours to register, answer questions and spit in a tube (surprisingly hard!)

It's rare that a week goes by that I don't have some kind of medical appointment. I saw the ENT the other day who confirmed I'm suffering from migraines and they believe that's the cause of my dizziness and foggy headedness. Good to know! Now on to treatment.

My mother drove us a little over an hour away to meet a friend for a delicious seafood feast. I had a headache the entire day, but I didn't let it stop me from having fun! The ocean air was rejuvenating and the view of San Fransisco was breathtaking. 

I get easily impatient with my hair and hate what I call the "Soccer Mom" phase of growing out a pixie. So I gave myself some baby bangs just for fun.

After both the neurologist and the ENT said I'm suffering from migraines (vestibular and intractable) I decided to try these "anti migraine glasses". They are a rose tint and are supposed to block out particular light that can cause migraines. I didn't think that they were working, but then I took them off to shower. When I got out I could tell my headache was MUCH worse. Back on they went and I can feel my headache easing. So weird! 

I think I have a very high pain threshold and so much other physical stuff going on that it never would have occurred to me that I had migraines. 

I'm also trying to gently get back into doing a little gardening. I find it very therapeutic and it keeps me eating healthy. My mom just bought me this beautiful cedar raised bed so I can easily garden while sitting, It's the perfect amount that I can manage. I'm hoping to get some herbs and lettuces for winter going soon. 

So no. I'm not "bored". I still sleep in, rest, take naps and try to go slow. But I keep both mentally and physically as active as I can and I'm always seeking out new tools to improve my quality of life.

(I received no incentive, kickback, discount or payment for ANY of my links.)