Salty Zebra

      When you find something that works, its such a blessing!  I've struggled for years with not being able to use hydration supplements, like the Nuun that my husband uses or the Zipfizz that my mom and my son use, because of magnesium.  For whatever reason, my system is 100% against me putting ANY amount of magnesium into it orally.  I've had to do IVs, take baths with pounds of epsom salts, and I've tried the magnesium oil, but wow it stings! Even the 25mg of magnesium in Nuun was too much for me, and I've struggled with hydration for some time, quite ironic when living the the wet and green Pacific Northwest! About a month ago I happened upon an ad for these Buoy hydration drops on Instagram as I was scrolling.  I moved on but the idea stuck in the back of my head.  A little later I checked them out on Amazon, but I still wasn't ready to invest $10 a bottle for these. When I later saw an ad for their chronic illness program I was hooked.  They give a permanent

  Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.  2Co 4:16-18 NIV      It's been nearly a year that I've been on this journey. Really, it's a continuation of a journey I've been on far longer, actually all my life.  None of it has been easy, but I feel like I'm past the worst bits.  Today I live in the reality that I have a brain tumor.  That's tough.  I also deal with the pain and challenges brought on by Ehlers-Danlos Syndrome and Lyme Disease.  My days are pretty simple, without room for complication.  80% or more of my energy is devoted to doing what I have to to maintain life.  Pacing is a tool I've had to learn inside and out, managing my spoons so to speak.

     I returned last week from a two-week trip celebrating our 25th wedding anniversary.  It was great.  I got to do a lot of things, enjoy beautiful weather, and eat fancy food.  I also overdid it, like every single day.  I keep wanting to think that I've made peace with my physical state and abilities but based on what I sign up for and do, I don't think that's true.  There was a lot of "shoulds" being thrown around in my head.  I "should" be able to enjoy a full day in a Disney World Park if I'm in a wheelchair.  I "should" be able to take down time in the park and not need to go back to the room to rest.  The reality was, spending even half a day in a Disney World Park was too much, even in a wheelchair.  I went into it with a game plan.  I wanted to do as much as we could each day, trying to ride all the rides that my physical condition would allow and see all the different lands.  My husband is a morning person that doesn't requir

      In my opinion, cruising is the easiest way to travel when you have a special diet, and Carnival did not disappoint.  What's important, though, is knowing the best way to navigate dining with a special diet, so I'm here to give you the 411.     Most cruise lines request that you inform them of your dietary needs before the cruise, but Carnival does not.  What they do ask you to do is inform each server you work with about any allergies or special diets.  Their special needs website ( Facilities & Services for Guests with Disabilities | Carnival   > Guests with Dietary Needs) talks about a system called Menu Mate.  I never saw anything like this onboard, nor was it offered to me, but perhaps the crew uses it to figure out what is safe to offer.       Carnival is able to customize many of the menu options for different diets, but they need the request to be put in the day before so you will need to order something off the regular menu the first day.  Thankfully they h

    We've just returned from a four-day cruise on the Carnival Radiance departing from Los Angeles, California and I learned so much about getting around in my new electric wheelchair.  If you're interested in hopping on one of these very affordable cruises and you have mobility issues, you might be wondering if it will work for you.     Carnival has taken many steps to enhance accessibility on the Radiance including: Providing maps with accessibility paths on every floor at the elevator banks (see images below)  They have added in many automatic sliding doors The stateroom hallways are the widest I've seen on any cruise ship They have tables marked for handicap use in restaurants and seats in some lounges In the buffet, staff watch out for people with mobility issues and offer to help When going up and down ramps to enter or exit the ship there were always staff there to help They had a special guest services counter window with a lower, accessible height They had an acces

      I came in here to start writing this post and thought that my app must not have updated because I couldn't believe that my post about the gastroenterologist was the last one I had uploaded. Turns out, when you hear certain things, a bookmark is placed in your life. I've heard about this concept in other arenas before, catalyst points. After them, you see your life as before x, and after x. I was surprised to not see any other posts because so much happened last week, and in my mind I had written several. I think I just felt like I couldn't actually post them here until after I had put them into context. It's funny, I have no readers for this blog at this point, but I was afraid that if I put my news up here before I shared it with my children they might hear about it the wrong way, and it was really important to me to not have that happen.      Last Tuesday I spoke on the phone with the dermatologist office about the results of my biopsy. I had fully expected it t

      I think that picture says it all... So I've been dealing with digestive issues since, well since I was born I think.  Some of it was definitely linked to anxiety and depression, but some of it was just how I was made.  They really came to a head in the fall of 2016. At that point ANYTHING I consumed, even plain chicken broth, had me doubled over in pain.  I kept finding things that helped a little, but they were band-aids at best and in the spring of 2017 I was diagnosed with SIBO for the first time.  There was a host of other issues present as well including a parasitic infection and a lack of digesting protein or fat.  We treated it aggressively with antibiotics, antiparasitics and a whole host of digestive support supplements as well as the most restrictive diet I've ever heard of.  It started off with me being able to eat a chicken breast (baked over a grate so there would be no fat present and with NO seasoning), ground beef cooked the same way, and boiled/pureed car

      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 in the right direction.  I checked in and after a

      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 the user by providing more power

     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 only meat, eggs, rice, potatoes, oil, salt, and peppe

      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 bringing on board a Gastroenterologist are our

      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 process to get TSA Precheck so the line moved so quickly I barely

      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 keep repeating themselves.  There are a few bloggers o

            I've spent much of my adult life hiding or apologizing for my blessings.  My husband has a good job which, while it brings with it some of its own challenges, has allowed me to be able to raise and homeschool our children without having to work outside the home. We have been very intentional about being good stewards of what God has given us and obeying Him when it comes to our finances.  This comes into play with everything from learning to tithe to obeying Him when He called us to pay off our debts.  This involves being generous with our time, talent, and treasure.  I believe it is a result of God's provision through my husband's income as well as teaching us to manage it well that has us in a place where we are comfortable financially.  But so many of the people in my life or that I encounter are not in this place, so I feel guilty when I talk about opportunities I have, like travel.  I feel like I need to hide it or minimize it.  I even catch myself planning