Salty Zebra

      After a brief but busy visit to the Disney World Resort area, I thought it would be best to take a break day before heading out on a cruise.  Turns out I would need it more than I realized!     Tuesday evening I dropped the power wheelchair off at the Disney resort I had stayed at and took a Lyft to WorldMark Kingstown Reef about 20 minutes away in Orlando.  I've never been to this resort, but it was opposite to everything I had experience the last two nights.       Physically, I was done on arrival.  It took everything I had to make it to my room, which of course was in the back of the resort furthest from the lobby.  I wonder if that's just a default that computers like to fill rooms in from the back to the front?  There was also bricked sidewalk for half of it. I had never noticed what a popular aesthetic feature brick sidewalk is before I struggled with navigating them.       My room was ...

      I've spent decades trying to develop a healthy sleep cycle.  It sounds deceptively easy to just go to bed and fall asleep.  In fact, it's something my husband does quite well.  It's happened multiple times that when I spoke to him just a few seconds after he laid down, I woke him up!  On the other side of things, I've spent so very many nights staring at the ceiling longing for rest either when I've gone to bed or when I've woken in the middle of the night.  Part of this is fueled by me being an incredibly light sleeper.  When my kids were younger, I could be in deep sleep but if they woke up and went into the kitchen, several rooms away from me, I would be fully awake and aware of what was happening in the house.  I also struggle with anxiety and when I'm home alone  at night, or the only adult at home, it tends to be the worst.      These days I've found a much better rhythm for the most pa...

       As Jesus looked up, he saw the rich putting their gifts into the temple treasury. He also saw a poor widow put in two very small copper coins. "Truly I tell you," he said, "this poor widow has put in more than all the others. All these people gave their gifts out of their wealth; but she out of her poverty put in all she had to live on." Luke 21:1-4 NIV     This passage was presented on my Pray As You Go devotional this morning and it struck me in a different way.  I don't know how many times I've studied this passage.  It's so meaningful to me that I often wear a "Widow's Mite" on a necklace to remind me that no matter how little I have to give God can use it.  Today what stood out to me was that while I cannot identify with the widow's financial poverty, I have a poverty of my own.  I have so little energy and ability to be physically present that I have, in the past, written off my ability to be of service.  The truth is,...

Here I am sitting on the back of a beautiful ship, trying my hardest not to cry. I am so very blessed to be here. I am so very grateful for the opportunity. I know that many, if not most, don't get to do things like this. But everyone around me does, and I'm struggling with comparing myself against them and being jealous.  Yesterday, embarkation day, I hit a new recent record of over 10,000 steps, over 4 miles. I paid for it dearly. I know better than to walk that much, but I didn't see a way to avoid it. In the future, I will DEFINITELY bring a power wheelchair on a solo cruise. The amount of required activity exhausted me, causing me to have to rest in my cabin for much of the afternoon and evening. I also ended up with a migraine by the time I went to bed. I really wanted ice for my head, but that would have required walking back and forth the length of the ship and I just didn't have it in me.  Today we are spending the day at MSC's private Island, O...

So what was it like using Disney Resort transportation with a wheelchair? There were a lot of positive experiences, and a few negative ones. Firstly, I was pleased to discover that there is a separate wheelchair queue for the buses. It's right up front, and allows the driver to see that you will need assistance when they pull up. After the bus has unloaded, the driver closes the front door and opens the doors in the middle of the bus. They cause the bus to dip towards the curb and then extend a ramp. I had to line up the wheelchair with the somewhat narrow ramp, then maneuver up the ramp and pivot sharply into the wheelchair securing spot. Thanks to the maneuverability of this chair, I never had any trouble with this process. Then the driver secures the front and back of the chair to the bus with ratcheting straps and helps you put on a seat belt. They will repeat that process with another wheelchair or scooter if there are more waiting, but they can only take two mobil...

I arrived at my Resort after the delivery hours of Randy's Mobility, the company I chose to rent my power wheelchair from. They were kind enough to drop it at my Resort so it would be ready when I arrived. What I did not anticipate was how difficult it would be to figure out on my own. I had to make two phone calls to their incredibly helpful staff, the first one to locate the chair, and the second one to figure out how to turn it on. When I located my chair, it was plugged in and charging outside of the arcade. The seat back was folded down, presumably for transport, and it took me longer than it probably should have to figure out how to flip the seat up using a lever very similar to one on a car seat. Once I had that up, I unplugged the charger and turned on the chair, but when I moved the joystick nothing happened! I tried everything I could think of, but probably because I was unfamiliar with this chair, and power chairs in general, I didn't realize that the cha...

There's nothing that quite makes my heart go pity pat like the sound of Disney music piped through the speakers at the entrance to a Disney park. The anticipation and joy almost move me to tears. I've spent many vacations at Disneyland in California, including my honeymoon and 10th anniversary. I know those Parks like the back of my hand, and you could drop me in the middle of them any day and I'd be able to find my way around without trying. For our 25th anniversary next February, however, we decided to go big and visit Disney World. I really had no idea what I was signing up for when we chose this. I found out later that all of Disneyland, California Adventure, and the Downtown Disney District can fit into the Magic Kingdom at Disney World, and the Magic Kingdom is the smallest of the four theme parks! The entire Walt Disney World resort area is 43 square miles, the size of San Francisco or double the size of the island of Manhattan. When I learned this, I kne...

As a disabled traveler, what have I learned about flight travel? First, research is your friend! It's really important to know both the airport that you are leaving from and the airport you are arriving to. Know the best place to be dropped off at to minimize your steps to security, and the gate. Know what accessibility amenities are available to you. For example, most airlines will have a service where they have someone push you to your gate in a wheelchair, yours or theirs. If you can walk, but have trouble with distances, this can be a game changer as far as airport travel goes. You do have to allow for extra time because you will often have a wait for this service as many people use it. Figure out what you're planning to do while at the airport and know where to go for those things. For example, I usually use the restroom, fill up my water bottle, and grab a cup of coffee before heading to the gate. If I'm going to be on a longer flight, I also pick up some ...

      Last night I wrapped up testing week with a sleep study.  I've been meaning to get around to doing one of these for a long time, decades really, but I never prioritized it.  When I saw the sleep doctor a few weeks ago, he ordered this home study for me.  My insurance, like most others, requires a home test to be done before they authorize an in person study.  The rigmarole I had to go through to get it checked out and picked up was quite extra in my opinion.  They were not able to send it via post, but I had to go into the office and pick it up, and then they wanted it returned first thing the next open morning.  Of course, they don't have any offices near me, so I chose one that I could detour to after my PT appointment yesterday, and by detour I mean adding a couple of extra hours of travel in :(.     When we got to the hospital we had a little trouble finding our way to the clinic, but a helpful staff person pointed us...

      This week I gave up my regular PT appointment to meet with my Physical Therapist and a representative from a durable medical equipment (DME) company to be fitted for a wheelchair. I mentioned in a previous post that my insurance will not cover a power wheelchair for use outside the home, but when my PT connected me with Bill from the DME company, he said that he has gotten one type of chair covered by insurance in the past.  This is a standard, manual wheelchair that is retrofitted with wheels that have motors in them.  The company that creates them, Yamaha, just a couple of months ago had a model with a joystick approved by the FDA.  It's called the Navigo (pictured above).  It just occurred to me that maybe this is one more part of God's timing, that I am finally going through this process right after this model became available.  Prior to the Navigo, the power wheels had to be instigated by pushing on the rims, essentially they aided th...

     Yesterday I completed my Trio Smart Breath Test for SIBO. I was sent home with it by the ARNP I saw at the new GI office last month. We had some comically bad back and forth a over the phone where I was trying to get information about prepping for the test that delayed my being able to take it before my Palm Springs trip, but it's finally done. When I tested for SIBO in the past I used Genova Diagnostics, the same company I did my stool test with on Monday. I guess they are the preferred company by naturopaths, but this GI office had a different company they used.       Having done them both now, I can definitely say I prefer the Genova Diagnostics version from the patient end of things. Their instructions and user support are far more informative. The manual that came with this test was so oversimplified that made it difficult to know what to do.       The day before the test I had to observe a strict diet with onl...

      As you've probably read by now, I have Ehlers-Danlos Syndromes (EDS) which means my body creates defective collagen leading to weakened connective tissues.  This causes hypermobility as well as a heightened risk of injury.  That might come in the form of connective tissue tears, sprains, dislocations, you name it.  The other challenge is that my body does not heal well from the injuries, if at all.  That means what would be a simple injury for someone else can be a life-long disability for me.  I have multiple sprains in my body (including both of my ankles) that I have accumulated over the years and continue to affect me to this day.  Prolotherapy can help with some of those, but not all.       Enter fear.  Knowing that one small wrong move can lead to a lifetime of pain and disability can cause a person to be afraid to do anything, including rolling over in bed (yes, I've been injured this way many times)...

      This week I've set aside time to take care of all the tests that have piled up for me to do.  I would have done them sooner but between confusing directions and finding out at the last minute that I needed to be off certain medicine/supplements for 1-2 weeks before the test it got pushed out.  What I did do was schedule times/days this week for me to do the tests so that I didn't have to have them hanging over my head in the meantime.  This is one of my little hacks that helps me to relax.  As long as I have things lingering on my to-do list I feel overwhelmed, but if I simply schedule a time to do them, I can let it go until it's time.       Today is stool test day.  This is my fourth time taking a stool test through Genova Diagnostics , but it's been about four years since my last test so I'm curious what has changed.  I've been having increasing digestive problems and getting a new stool test in addition to bringi...

      This week I traveled down to Palm Springs.  Really, I stayed in Indio, CA, but it is the Greater Palm Springs area.  This was my first time traveling to California by myself and it went pretty well.  It was also my first time traveling with my new seat stick:     My planned use for this was in the TSA line, possibly in line to board the plane, and other places where I might be waiting and not have a seat available.  I thought it would be helpful because standing is so difficult on my body.  It increases my pain levels and can cause me to feel dizzy at times.  The reality of it for this trip was that the seat stick was more of a nuisance than a help.  It took up one of my hands so if I was carrying a drink or trying to get my ID out of my bag I had to try to balance it somewhere - and more often than not it fell down.  I didn't end up opening it to use it once on the way down.  My husband and I went through the p...

      So I didn't end up writing a post every day of October, but I did write 24 posts!  That's pretty impressive in my book and I call it a win.  Especially since writing 24 instead of 31 meant I was able to prioritize my health and get the rest I need instead of becoming a slave to a challenge.     What did I learn from last month?  I was reminded of why I began blogging here.  I wanted a place to be able to share about my thoughts and feelings and passions.  I wanted to be able to record where I'm at in time. I wanted to create a safe space where others can come and feel heard and seen.  I think I am finally beginning to do that.  I learned that I can write several times a week and not struggle to come up with content.  I'm overflowing with content! I also think I found my primary blog topics.  I'd like to be intentional here about covering health, faith, and travel.  As I look back over my posts those themes ...