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."

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. 

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!

"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.

Animal Crossing - A disabled person's best friend

I've been a fan of Nintendo's Animal Crossing game series since its release on the N64 in 2001. I've recently fallen back in love with their phone app game called Animal Crossing Pocket Camp. But here's why the entire game series is so important to me as a disabled, creative, nature loving person. 

Firstly you have to understand that my reality is one of constant, chronic pain, limited mobility, foggy headedness, vertigo, crippling fatigue and other challenges. 100% the opposite to what this game offers me AND it's a great drug-free escape from pain. 

So let me break down the specifics of exactly what I love about Animal Crossing.

1: I can play with and visit my husband. He has an avatar in the game and even when he's in the other room (one bonus of quarantine) working I can visit him in his garden, his campsite anytime I want. Where else could we pop up side by side and go fishing together? Not the real world, that's for sure.

2: I make friends instantly. You literally go up to someone, ask if they'll be your friend and if they accept then your avatars are friends. You can help each other out and be rewarded by your friendships too! The more friends you have the easier the game (just like real life, but... EASIER!)

3: My entire town is there ready to be explored with the movement of my finger. No spoons required. Mining, walking on a beach, exploring an island, fishing under a waterfall... all right there! I also have a big campground that I can decorate, a two story camper that I can decorate and a two story cabin that... well... you get the idea, right? 

4: I can fish, literally walk barefoot, farm a perfect (weed-free) garden, build a library, dress my animal friends, plant and grow flowers, rearrange furniture. I can catch bugs or hear the sand squash under my feet. None of these things are possible for me in the real world, but I get a sense of joy and satisfaction out of doing it through my avatar and in game. 

5: I can express my creativity in new ways that I can't do in real life. For example, this is the bottom floor of my camper. It's a sewing room! I'd love to be a fashion designer in real life or at least sew all kinds of things for my home, myself and my family. But in the game I can at least have a cool fashion/sewing room full of colorful things.

For me this game isn't just a time filler, or brain suck like some people consider them to be. It fills an urge to go camp in nature, to just hang out with my "friends" and to build and create new things. These are things that are either very hard or impossible for me to do in the real world.

There is a new Animal Crossing game out for a system I don't own. I won't be getting it right now due to cost. For me this little pocket size world on my phone is the perfect outlet. 

Priority Parking for Pablo!

Today is a big day. My first ever disabled parking plates came for Pablo. It was exactly in May 2018 when I first got my temporary parking permit... so why am I happy about this?

What's most exciting about having a "blue plate special" (as I now think of it) is I don't have to remember that fricken badge! No more taking it off and on, switching cars, forgetting it in the wrong car (always horrible). Nope. Now it's just goooooo!!! Which is the whole point of Pablo anyway. 

But it is interesting how quickly emotions change. My husband and I were just talking about this the other day. How we both remember what a big deal it was when I decided I needed a walker, now here we are with a wheelchair van. The same is true for the parking badges. I remember it being a really big deal to talk to my doctor about it the first time, now here I am with a "DP" (disabled plate). 

I'm very happy that things don't remain a "big deal" for very long. That we become more fearless and just move on with the joy of living instead of freaking out over small things like mobility aides and "blue badges" (as my mother calls them). Anything to help me live a big, full life is wonderful and very welcome!

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. 

Rest and Play

Last week my husband and I celebrated our 25th wedding anniversary. Although we call ourselves the "Adventure Buddies" we were more than ready for some serious rest. We drove three hours from our home to the coast for some fresh air, good food and plenty of relaxation.

I fell in love with this swing on our patio, even though it made me a little dizzy. I think I need one at home now.

The hotel we stayed at, the Bernardus Lodge and Spa, had a beautiful garden, delicious restaurant and was completely wheelchair accessible. It was just what my body and soul needed.

I'm learning how to have "relaxing adventure" lately. Case in point, the hotel had a convertible car that we were able to "borrow" for a lovely coastal drive. It was a lot of fun, but an easier adventure on my body than say, a long beach walk, which is something we would have done instead in the past. 

Some "adventure" takes money, but other things I can find for free. Like this fun, organic farm stand we stumbled upon on our way home. They had a cute area for "kids" that I took full advantage of. I spent my muscle spoons for the afternoon getting in and out of this GIANT adirondack chair and it was totally worth it. I felt like such a kid!

For me play is just as important as rest. If I spend too much time just "adulting" I'm one unhappy lady. 

Of course one of my favorite ways to rest and re-charge is to snuggle with my sweet girl. 

My husband and I also "play" with (gasp) our friends! We belong to a local group of tiki lovers who are as child-like and playful as we are. We try to make time at least once a month to dress up and hang out with our buddies. 

Life is a balance and I'm still trying my best to find the perfect mix of work, rest and play. 

(** I received no reimbursement for my mention of Bernardus Lodge and Spa. But if they'd like to hook me up in the future, that would be dandy!)

Letting go

Part of adjusting to life with a disability is letting go of what you can no longer do. Mourning those things that your body just can't do anymore. For example, I can't do the kind of travel that my husband and I used to enjoy. No more hiking down cobble stairs into a secret well (like is pictured here in Sintra, Portugal). 

Yesterday I took a short bike ride to see how my body did. It has been a very long time since I tried to ride. I love my bike and it used to make me very happy. As I had feared my muscles did not like my bike. It's just too hard now to get it to go where I want and to balance. Time to mourn not being able to use my bike anymore and let it go.

My awesome bike and fantastic helmet two years ago.

A funny thing happened though when I got off my bike and in my wheelchair yesterday. I felt relief. I also had that excitement feeling I used to get from my bike, now just from my wheelchair. Like my bike it's a tool to take me around. I also get to feel the wind on my face, just like on my bike. But unlike my bike it's a tool that I CAN use. That's a good feeling. I'll be selling my bike and hopefully the next owner loves it as much as I did. 

But having a permanent disability doesn't mean I still can't do fun things. In fact there are loads of amazing things that I CAN still do!

I can eat fresh berries in the summertime!

I can still snorkel. Which is a life-changing experience. 

I can still swim! Or float. Depending on my energy level. Water is still my friend.

I can still travel and have adventures with my husband.
They're just different kinds of adventure now. 

I can still enjoy the beauty of nature.

I'm very lucky!

Wheeling through arizona

My husband and I recently took our second trip with my electric wheelchair "Ariel." The first time we took her to Oahu, Hawaii. This time we went to Arizona. Even though my Metabolic Myopathy has improved with the mega dosing of Q10, I still can't walk long distances or for a prolonged period of time. That's where Ariel is super handy. I also have my matching cane for shorter distances, which is a fantastic tool.

I have a travel bag that I bought with my chair. It was worth every penny. It keeps her safe in luggage handling and makes it easier to transport her for the handlers (and my husband.) Here he is putting her in the bag at the gate before pre-boarding. 

Since I am able to get in and out of my wheelchair, with regards to TSA I hand her over to them for a full check while I go through the body scanner with the able bodied people. I found this is easier on me than going through the full check in my chair as I have to get up and down a lot and that's hard. It's also usually faster. That is it's faster IF they don't get some weird chemical reaction from your chair, and then make you go through ANOTHER chair check and a full pat down (true story that happened on the way home.) 

It's great to have my own chair in the airport because no one has to push me and I can handle my own suitcase. So far no damage has happened to my precious chair either. YAY!

In Hawaii (my first chair vacation) My husband bought this plumeria sticker for me and I put it on my chair. The plan is to get a new sticker each place we go!

It was easy to get around our hotel in the chair. Though just like when we went to Hawaii I don't think our room was actually a handicapped room. There were no bars in the shower (which I REALLY MISSED!) And I was glad I was able to walk around our room on or own or there could have been some issues. I think it's best to book on the phone with a real person and request an accessible room vs online. Next time that's what I'll do. But this time we were on the first floor which made a big difference. Elevators are doable, but a pain and who needs pain on vacation?

We more or less staid around our hotel for this visit so I didn't have the issues of getting in and out of shops that I had in Hawaii. What few things we did do in the downtown area were 100% accessible. Things seem nice and roomy in Arizona with very wide sidewalks, wide streets and accessibility in mind. I appreciated that. 

All the hotel staff were very friendly. The lounge chairs by the pool were a bit tricky to get in and out of, but I managed. That's where my cane came in super handy.

And like I said before, I also wore a bikini for the first time since I was about three I think? Never in my adult life have I worn one. Never is too long if you ask me.

Fearless woman that I am (thank you brain tumor) I also got a new tattoo!

PS: We flew Southwest this time and I FAR prefer them over any other airline so far. They were very friendly and it's open seating. They're serious about people with disabilities going first over people with children (who think they should get to go first for some reason.) That means I got a seat right up front (THREE CHEERS FOR SHORT WALKS!!!) With extra leg room which I dearly need when I fly. I highly recommend them.