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."

Exciting Few Months

My life has been changing rapidly over the last months. Not leaving me much time for blogging. Fortunately for me all of the change has been good.

I HAVE A NEW FAMILY (more family? My family grew!)
I found out months ago that my birth father passed away in 2021. I learned this on Facebook. I would do occasional Google searches of his name just to see what he and my two half sisters were up to. We had no contact at all for over 24 years now. I Googled him and found a remembrance post by one of my sisters. I was very surprised as he wasn't that old.

I sent her a message even though we weren't "friends." I knew it was a big shot in the dark, but I was curious how he died and if it was something I should know about (like cancer or heart disease.) I said I was sorry to read that he passed. I knew they were close (by his pictures.) I asked how he passed. I said that even though I only met her and her sister once when they were very little, I always thought about them. I gave her my contact information and said it was ok if she wanted to reach out. More than ok really.

Then shock of all shocks. About two months later I get a message back from her. She apologized for it taking so long and said I ended up in some strange folder (just like I thought I might.) She said she and her sister have been looking for me and missing me their whole lives. She said our father would talk about me and had some pictures around of me, so they always knew I was their sister. They just didn't know why I wasn't in their lives. She said no one would talk about it. I'm hopeful he was ashamed of rejecting me. She said they would love to meet me if I was ok with that.

I was so excited and hopeful. But trying not to get my hopes up too much. I wanted to be a part of their lives and learn everything about them. I hungrily sought out pictures of them. Much to my surprise I look like a perfect mix between them. We met a few weeks after that. Just the three of us. John dropped me off so I wouldn't have to worry about driving. What a guy. The three of us bonded quickly. I had John take some pictures of us together. 

They are both partnered up. My youngest sister has a 10 month old baby boy. My middle sister has four children. Three boys and one girl ages 3-8yrs. I instantly became an aunt to five more kids. WOW! I can't wait to meet them all. That was delayed a bit because...

We went to Hawaii for our 30th wedding anniversary.

We just returned a few days ago. We had a magical time. We both agreed it was our best vacation ever. The ocean is just amazing there. There's nothing like it in California. The waters are tropical blue and so clear. You just stick your face in the water and there are mobs of colorful fish.

My fantastic mother watched the puppies for us and did an amazing job. They were so happy and well cared for. I couldn't have done better myself. I was able to completely relax and have full peace of mind while away knowing she was there for them. They were her full time job.

(We don't want you home Mom! We're being spoiled.)

I was able to enjoy vacation even more because...

I found a new supplement that is actually helping with my energy levels. Finally. Someone in my Adults With Mito online support group recommended it to me. I decided to give it a try and it works amazingly well.

It's called NR Nicotinamide Riboside. It's an "NAD+ Precursor." It's a member of the Vitamin B3 family. I take 300mg (1 pill) first thing in the morning. I was taking more but it was working too well and giving me insomnia. I get it through a company called Genex Formulas. At $38.14 a bottle of 60 pills it is well worth it. 

New family, new energy, new memories and 30 years of marriage. I could not be happier.

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.

First Vacation With a Wheelchair

I recently took my first vacation as a wheelchair user. I brought my travel chair Ariel with us and she performed beautifully. We flew United from San Francisco to Oahu with my company. It was a big “thank you” business trip for all their employees. They knew in advance I’d be bringing a wheelchair. United was able to check my chair right at the entry to the plane after the big “gangplank” walk to get to it. There are 2 tags they required containing information on the chair. I also made my own tag after doing some internet research on it.

My personal tag contained:

• A picture of me.
• A simple statement of “Thank you for taking good care of my wheelchair!”
• “In Case of Emergency” (ICE) information to reach us.
• Information about my chair like weight, battery type, make and model, color.

 

I got the idea online from a mom who made a tag like this for her son’s wheelchair when they’d travel. She said the rough handling of her son’s chair and the damage hugely decreased after putting the tag on. BRILLIANT!

All the United staff were super impressed that I planned ahead and had the chair info all ready like that. I did forget to take a picture of it before my husband put it in the travel case and handed it off to baggage. I read you should do that in case it’s damaged.

I will say I’m lucky that I can walk down the isles ok because “pre-boarding” really wasn’t super useful. There were a LOT of people in my way, mostly people traveling with kids who seemed to think they had the exact same pre-board rights as people with disabilities. (They don’t by the way. It’s supposed to go 1-disabilities 2-people with small children 3-first class 4-everyone else.) The airline was in such a rush to keep on-time that it was a bit of a mad dash. Coming home was better, so I’m thinking it could be a San Francisco airport thing?

The TSA check in San Francisco was also strange. I had no idea what to do as a wheelchair user now. I expected there to be some kind of “disabilities” check line, but there wasn’t. I had to maneuver through the general long line. Once it was my turn they pulled me over to the side and gave me a cane to lean on while conducting a thorough pat down on me. The female TSA agent was super sweet and always told me where she was going to touch me before she did. I appreciated that. Then she checked my chair and swabbed it down (they do this with all electronic equipment.) It took about 5 minutes. She told me since I’m able to walk short distances and stand for a bit that next time I could let the TSA agent know that and I wouldn’t need a pat down.

Coming home I didn’t have to go through the general TSA line. Instead they had a separate line for people with disabilities, just like I expected back home! I felt more relaxed and appreciated the straight, slow moving line to navigate through. I let the agent know I can stand through the scanner when it got to be my turn. I turned off my chair and unlocked my breaks so she could push it to the other side for me while I went through the scanner. This was MUCH easier for me and I only had to walk maybe 5 steps? Then I sat in my chair while she completed the chair check. This was a simpler, more relaxing experience. Again, everyone was very nice.

I’m not sure what people do who can’t get up out of their chair at all. I’m guessing maybe get a pat down while sitting? But that sounds very uncomfortable and hard to go through.

The flight was… a flight. Nothing gluten free so good thing I brought my own food and water. Always get your own water once you’re through TSA security! You can just bring a travel cup and refill it at a drinking fountain for free. 

When we arrived I had to use an airport chair and porter as my wheelchair was down in luggage claim, even though they said it would be at the gate. Weird. Coming home it was right as we got off the plane like we had expected the first time.

During our 5 day vacation I learned that big cities and towns will be much more wheelchair accessible than smaller, quaint areas. Makes sense, but as a previously bipedal mover I had never thought about it much. I also like smaller towns better than big cities. I felt frustrated a few times when places we wanted to stop at were obviously not accessible. But I also learned that some places have portable ramps if you just ask.

The larger tourist stops were fully accessible and welcoming. When we went to a popular snorkel destination they knew how to get my chair onto the shuttle and clamp it down. I rode for free and my husband paid and small fee. They also had free beach wheelchairs that I personally think are a nightmare if you’re over 100lbs. My poor husband tried his best but finally I just got out and pushed it like a beach walker (which was useful.)

Before we left for our vacation my husband bought me a pair of super tech collapsible hiking poles that weigh nothing, complete with “beach heads” for navigating sand. They were perfect for helping me walk short distances and broke down to fit in a purse or backpack.

(My amazing beach poles!)

The Luau we went to also knew in advance that I use a chair. They had a gas powered golf cart and drove me wherever the rest of the group was going.

(Ready for adventure!)

I think planning your trip around making sure you’re going to a place with friendly people who are happy to accommodate you is very important. Hawaii was perfect in that regard. Every single person was so friendly and beautiful. 

Many times through the trip I thought “how do people traveling alone in a chair do this!?” It seemed impossible to me. Or even people with zero mobility. That would have been an incredible challenge.

Throughout our trip I got compliments on my chair. Even the shuttle driver who picked us up in the morning said “Why did the instructions say there was a wheelchair?” Not knowing he had just put it in the trunk. Hahah!

The hardest part was when there was a lack of accommodation. Like the elevators at our hotel were much too small. They’d pack in with people all sticking their butts in my face or knocking me with beach bags. It was too small to turn around in, so I had to exit backwards every time. I hated it. Twice the lock on the back of my chair popped open and I was painfully jolted as my husband was trying to helpfully maneuver me through a tight spot. It hurt and I snipped when I shouldn’t have. I know it was a whole, new, unknown, stressful experience for him. We’ll both get better at it the more we do it.

All in all we had a wonderful time. Snorkeling was by far my favorite part. I really am part mermaid!