Magic

If I was told 3 magic beans would improve my quality of life I would buy them and eat them. Move over Jack.

Every time I try something new, start a new regimen or try a new medication, I am hopeful. I am an optimistic person by nature. It shines through with regards to my disability. Each and every time it gets me. "Maybe this will be the one. The one that gives me my life back." Not even a "part" of my life. But my WHOLE life.

I love this image and I wish I knew who to credit it to.

"It may turn me into a marathon runner. Leave me migraine and head pain free. Give me back 100% of my body, pain free. Turn me into a sex maniac for my husband. Give me the energy of a 20 year old." Do you think my expectations are maybe a tad bit unrealistic? NEVER!

 Me in Ireland - 2016  

When we last went to Hawaii I actually thought I could do everything we had on our agenda. No questions asked. I really believed I could snorkel in the the morning, hit a museum in the afternoon and go out to a lovely dinner at night. All with just my rollator (if I even needed THAT I scoffed.) Want to guess how that went? I think it's the most I've cried on any vacation ever. Let's leave it at that.

Aloha from the hotel bed

But that didn't stop me from hoping.

I think part of it is the strangeness of my disease and the fact that sometimes something really will make a huge improvement. Or at least it happened once. When I changed my diet to short chain fatty acid. That was the most remarkable improvement I've ever made. It did indeed feel magical. I went from using my chair every time we left the house (and needing a wheelchair van) to walking on my own everywhere without even a cane or rollator. Remarkable. 

August 2023. Right before I started the short chain fatty acid diet

My doctors didn't know what to think. It was Genetics that found out I had an issue processioning long chain fatty acids. The funny thing is most people do. It just doesn't seem to affect them as much as it does me. It also affects people with Autism, though my son would never do anything about it. He thinks whisky is a health food. And who knows? Maybe it is? 

 My biggest magic trick. Walking again. August 13, 2023

When I was craving sugar and carb while battling it out with Lamotragine (for seizures) I thought maybe I just need a lot of sugar? I think that's true when I'm ill or in a muscle crash. I don't think it's true daily. I tried out a glucose tablet and it just gave me a bad headache.

I still have that "magical thinking" whenever a new issue is discovered. "Maybe I was having seizures the whole time and now that I'm on anti-seizure medication I'll be 'fixed!" Or "Maybe it was migraines and now that I'm on Botox I'll be 'fixed!" I swear I do this constantly.

But the truth I really need to embrace (yes, after all this time) is that I'm disabled. Severely so. I have a mitochondrial disorder. It is slowly progressive and degenerative. I survived a brain tumor. Both things impact me in a huge way. There is no silver bullet or magical bean that will remove those two facts. I require certain things to thrive. 

Pottery, creating things, spending as much time as I can with friends and family (both furry and non-furry.) Rest, rest, rest. Healthy foods, my medications (14 pills in the morning, 10 in the afternoon and 11 at night.) My medical team helping me stay at my baseline or better. Love. New clothes, HAH! All of these help me to thrive.

Time with my family always helps keep my spirits high 
and the gratitude flowing. 

I have good hills and bad dips. Just like anyone. I have happy days and miserable. I have days where I have extra energy to get a lot accomplished (like today.) And days where I just have to stay in bed. I miss gaps of time every day to rest. So my time is very precious.

My life just as it is feels magical most days. I'm full of gratitude for what I DO have and try not to think about what I lost. Things aren't "worse" just "different."

 

Expectations

I feel strongly that expectations are the tool of the devil. And yet I fall prey to them constantly. My husband and I just went away for a seven day vacation to Oahu Hawaii. And yes, I had expectations. 

I got tired, but still wanted to be in the ocean. Our hotel had free floaties for use, so I grabbed one. Just like the shark in my tattoo. Good choice.

I (foolishly) expected I could make it through two major airports with just my rollator and leg brace. I expected to be able to walk through a large museum with just my rollator. I expected to be able to do a 1/2 mile walk, swim in a waterfall and then walk back the 1/2 mile.

One of the few nights I wore makeup.

Where did these expectations come from? I believe it's from my own internalized ableism. Seeing medical equipment as "lazy" or "not pushing myself." I mean, I can walk, right? Well, that's a loaded question. I can walk, just not as far as I thought.

Too tired for makeup. Enjoying a delicious "mocktail."

I also learned that staying in a hotel is very different then staying at an Air B&B. There's the walk down the hall to the elevator, out the elevator to the breakfast buffet, back down the hall to the elevator, down another hall, to your room. That's a TON of walking and we haven't even really started our day yet. It took a toll on me fast.

I WAS good about letting myself rest as much as I needed.

This was my takeaway:

• Always stay in an ADA room if staying in a hotel. I need a shower stool.
• Always bring my travel electric wheelchair on vacation. I never know how far I may need to walk or how long I'll be standing.
• Energy conservation and naps are my friends.
• Expect I'll get "travelers stomach" and start on the daily pepto right away.
• An Air B&B has it's advantages. Like a short walk to the car and laundry facilities.
• Be kind to myself. Don't compare myself to others or even to what I used to do. 
• Be able to pivot to a DME anytime I need it. Don't try and "push through."

Escape

Ever since I can remember I fantasized about running away. When I was little it was the classic "put all my shit into a knapsack and take off with a sandwich" type daydream. As an adult it become "don't show up to work, but keep on driving till I hit Disneyland." Now days it has turned into "keep driving till you hit Canada or Mexico."

I hate what the United States has become. We are an oppressed nation ruled by a nazi who is stripping away women's rights as fast as I can blink. Although we started wheeling that way long before the human cheeto was sworn in. Roe vs Wade was overturned right under a Democratic president's nose. And a female VP I might add. 

Women are second class citizens here. Of course I want to run away. I'm guessing most women with a half a brain are currently daydreaming about it if not actively planning it. 

I used to think about having a precious little beach house in Monterey, CA. One of my favorite places. I love the unique wildlife there and the weather. Then later it turned to thoughts of Hawaii. Having a cottage tucked in the rainforest with wild geckos climbing my walls. Steps from the beach of course where I could snorkel every day.

Now I just think about anywhere but here.

My husband doesn't get it. Never did. He's incredibly sensible, rooted, grounded, determined, practical and let's face it. An upper class white man who works a corporate job. The US is made for him and men like him. Men who just keep their nose to the grindstone for the sake of their family. Who have a beefy 401K because they planned ahead for retirement. And lucky for me, because I am not and have never been that type of person. I think of myself as a kite and he's the little boy holding my string. Without him I would have been sucked up by a storm or eaten by a tree for sure. 

But man do I like to soar. And from up here I can see the whole world, not just our little patch of sky.

Remembering the Basics

I got into a situation the other day where I was foolishly without a mobility tool. Even now, when I think I'm doing so great health wise, I have to remember that the smallest thing can set me off. I've been struggling greatly with the weather causing migraines, which then triggers my mitochondria to focus all their energy on that. It leaves me weaker and even more tired than usual.

Standing is tough for me even when I'm at my best. Standing for a few minutes can be torture. 

We had taken our nephew to an art gallery's "comic book day." It didn't even occur to me that there would be standing involved. Why? Because I'm a perfectly healthy, able bodied person of course. So when the standing and looking at things started, I felt myself beginning to struggle. It got to the point where I was literally pouring sweat, shaking, trying to keep it together and stay with him and my husband.

Common sense finally got a grip and I went to sit down with my portable fan. Thank the Goddess that at least I brought that with me.

When assessing the situation later I realized I should have recognized the day would involve a lot of standing and brought along my rollator. I have the tools. I just need to remember when to use them.

So I came up with this lovely little reminder for myself.

• If I'm going on short walks and I'll experience mild fatigue (or already am) I'll bring my stick.
  
  
• If I'm going on longer walks with moderate fatigue (standing more than a few minutes involved) I'll bring my rollator.
  
  
• If I'm having severe fatigue or muscle pain I (or am expected to stand most of the day) I'll bring my travel wheelchair.

Even though I've been disabled for years now I can still forget the very basics. 

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.

Expectations

My husband and I will be celebrating our 30th wedding anniversary this October 1st. We're planning a trip to Hawaii (the big island) just us two. I'm so excited and have big plans. However...

After the wake up call from tent camping and a few incidents of way over expanding myself at home, I'm re-adjusting my expectations. Again, being able-bodied doesn't mean I'm not disabled. I hope I'm really hearing myself here because I seem to be slow to get that message. S-t-i-l-l   D-i-s-a-b-l-e-d.

On Oahu 2019 with my trusty beach poles.

So no, I will not be engaging in "Snuba" while we are in Hawaii in September (like I had originally wanted to). I won't be hiking or biking up the side of a volcano, nor scampering down to see the green sand beach. I will lay in our patio swing bed, eat fruit and walk on the beach. I will bring my hiking/beach poles. I might do the four wheeler excursion to the top of the green sand beach, but I will listen to my body and move slow. I will not get myself in situations where I'm in over my head. 

I have a special snorkel kit where I don't have to hold anything in my mouth. It covers my whole face.

I know I can still snorkel because I did it before when I was just starting my illness journey. But I will only do it where there's a lifeguard or if we're out on a group excursion with an expert. I may even wear a float belt just to be extra safe. It is the ocean and not a swimming pool after all. 

And I'm still mulling over the four wheel drive. Maybe I'll test one out before I go.

A Disabled Car Trip

In a little over a week my mom, myself, Max and Margo will all pile into my mom's Jeep and embark on an eight hour trip to the small beach town my grandpa lives in. I'm very much looking forward to taking both dogs to the ocean and showing them new things. They are great travelers, so I don't think we'll have issues. In fact Max has done this exact trip before.

Max and I the last time we were there. 
This time NO CHAIR!!!

But the big question you might be wondering is what am I packing? And how is that different than what a typical person would bring on a road trip?

I'm so glad you asked.

• Food. This is one of the big differences. I have to bring lots of protein with me and things I can eat. It's hard to eat while on the road and find healthy options. I'll bring the protein balls I like to make (almond or walnut butter - chocolate chips - rolled oats YUM!) Some gluten free crackers, dried fruit, sandwiches and chips. I have powdered vitamin and caffeine drinks that I can just pour into water bottles (to save on space.) I might bring a jar of almond butter with me just to keep in our hotel room. My mom already secured my favorite oat milk creamer for my coffee. 
  
  
•  Drugs. Lots and lots of drugs. I'll need my two different inhalers, my filled pill box's, migraine medications, migraine ear plug (for altitude changes), anti nausea wrist bands and patch, tummy medication in case I eat late... I will have a big bag of drugs with me.
  
  
• Braces. Many of my joins and muscles are still weak. Since I'm not sure exactly how we'll be helping out my papa I'll bring some braces just in case. Ankle, elbow, hands, knee, back. That should do it.
  
  
  Max loves the beach
  
  

These are all things that a typical person doesn't need to even consider when traveling. They can stop and eat anywhere without much of an ill affect. Maybe they'll bring some aspirin or Tums, but that's about it. Not a giant bag of drugs. They'll toss a pair of flip flops in their bag and not think about their joints or muscles much (if at all.) 

We're also going to make frequent stops to stretch, walk the dogs and take turns driving. That will keep all of us healthy on such a long drive. 

Wish us a Bon Voyage!

Don't forget Margo!

Who Am I?

How would you describe yourself to someone who has never met you before? What defines you? Makes you... you?

I would say I am a woman who enjoys art and other creative people. I adore my two miniature pinschers and my Autistic son. I've been married for almost 30 years to my best friend. I am a licensed psychotherapist, but I haven't been working for the last five years because of my health. I struggle with serious chronic illnesses, mitochondrial disease and migraines. I am tall with very short salt and pepper hair. I am average size for American women. I wear red glasses (sometimes) and have blue eyes. I am very white. 

I love conversation over high tea, any music but acid jazz and generous people. I have a love and respect for Polynesian culture and that's reflected in my eclectic home. My husband and myself are potters, so yes. I would call myself an artist. I also enjoy photography in a very beginner way.

I love food and travel. I could live in the ocean, especially tropical waters. I'm a water person first then a forest/nature lover. I adore sharks, mermaids, rays, whales, otters and most things that live in the ocean.

I'm a Capricorn and have lived in the same home for 22 years. I have a wanderlust spirit that conflicts with my home-body. I'm also a maximalist with an un-voiced minimalist living inside. I'm a social justice warrior, a liberal, pro-choice and a feminist. Scratch that. A feminist first. 

Oh yes! And I'm 51 years old.

And you?

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.

Let's Play It By Ear

 "Let's play it by ear" is the warrior cry of the chronically ill. It is an enormous challenge to plan life in advance as I never know how I'm going to be feeling from one moment to the next. With this comes a lot of guilt.

I feel guilty for making my husband miss out on having people over as much as maybe he'd like. Guilty about not going to friends homes as often as I'd like. Guilty for turning down fun invitations to places because I'm too exhausted to go, or the time of day is wrong (it's during "rest time") or the location isn't accessible. 

I feel guilty not being able to spend a full day away from home and making everyone have to come back home early so I can rest. I feel guilty spending a whole day sleeping after doing something exhausting. Guilty for not helping my mom and son out as much as I'd like to. Guilt also comes when I can't do something myself and I need help. 

Behind all of this "guilt" is a great, big, SHOULD.

I SHOULD be able to make it all day long without a rest.
I SHOULD be able to go to someone's house to visit for hours.
I SHOULD be able to travel.
I SHOULD be able to make plans and stick to them.
I SHOULD be able to get up and get on with my day in a productive way.
I SHOULD be able to help others.

But none of these SHOULD's should be here at all. Because of "can't." I am a disabled person unable to do these things. That is the reality of the situation. I can want to. Even feel like I "should." But I can't. So I don't. 

So instead we "play it by ear." Adjust when we need to. Do what I can and skip what I can't. Adjust our plans (or cancel them) and work around my needs. That's the fact of life right now. No need to guilt myself about it or "should all over myself." None of these feelings are helpful or healthy.

It is helpful to remind myself of that when the guilt starts to creep up.

What Matters Most

4.25 Million people have died from COVID worldwide. I'm positive that it an under-reported number. 614,000 People have died of the virus in the USA. 668 People passed from COVID yesterday alone in the US. None of these numbers count people who died from suicide, violence or substances directly due to this pandemic either. 

I am one of the lucky few.

So... how do I want my life to be?

What kind of person am I?

How do I chose to live?

Kindness is a very important value to me.

Health for myself and those I love is also vital.

Making a contribution to my community and society in a positive way is also key.

Creativity and expression is a must. Even if it's just for me.

With that in mind there are a few changes I would like to make to my life.

1. Have family over to our house more often. Especially when we're done with all the remodeling we're in the middle of right now.
   
   
2. I'd still love to travel, experience new things and meet new people. AND the smaller I am the easier that will be too!
   
   
3. Writing a book is still high on my list
   
   
4. I'm going to devote more time to researching my disease. I'd like to meet more people with mitochondrial disease as well. 
   
   
5. It would be thrilling to meet more creative women and practice our craft together in person. Making new friends who share my passions and values would be most welcome in my life.
   
   
6. Letting old friends who don't share my values go.

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. 

Keeping Distracted

My wonderful employer is taking everyone to Hawaii in January. Saturday I just wanted to get out of the house and do something fun, so the hubby and I decided to go searching for snorkel equipment. We've never been snorkeling before, but are excited to give it a try. We pride ourselves in being adventurous and planning an adventure is a good way to take my mind off... well... my mind. More specifiably, my brain tumor(s) (which I have yet to name.) 

My husband is more interested in the traditional snorkel gear, while I'm more in the "float face down like a bloated corpse" camp. I've read great reviews on these full face snorkels. It was helpful to go to an actual scuba shop and try them on though. They didn't have this "Miss Piggy pink" in my size, but they're ordering me one. (insert squeal of excitement here.)

I also distracted myself by calling a friend I haven't spoken to in a very long time. I have a bad habit of online shopping while I'm on the phone. I don't always buy something, but this time I did. I found a company called "Love Your Melon" who makes these adorable hats (and blankets.) I just loved the idea of wearing this soft, cozy hat after my (potential) brain surgery. And even if I don't need surgery, I still need to love my melon.

50% of proceeds from the company go to help fight childhood cancer.

On Friday before I even knew about the brain tumor(s) I bought myself this mermaid pendant. I've had my eye on it for a month, but had to save up to get it. I thought it was a beautiful way to mark getting my first "real" wheelchair. The medical equipment company is sending a rep to my house on Thursday to measure me and help me pick out an electric chair. This necklace is the first mermaid I've seen who doesn't have long flowing hair, but who also has some sass. Just like me. I love her. 

Now that I've been diagnosed with a brain tumor(s) I'm sure my insurance company won't give it a second thought about covering my electric chair 100%. So that's a bit off my mind (get it? Hahah!) I'm looking forward to meeting the rep and hearing more about my options.

My husband has been amazing (as always) and has also been so helpful at keeping me distracted this weekend. It's been a weekend full of back rubs, hugs and extra loves and support. He didn't even flinch when I insisted I needed a $25 ZZ Plant for my office. What a guy!

We're hoping to learn more today about the tumor(s) and what's to come. But in the meantime I'm focusing on the now and keeping busy. 

NOTE: I'm not affiliated with any of these links and I didn't receive any compensation for sharing their information in any way. 

View from the passenger side