Salty Zebra

     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

    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 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

      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

      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

            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

      As I mentioned in a post earlier this month ( Day 4: Becoming an Ambulatory Wheelchair User (saltyzebra.blogspot.com)  I am exploring my options with mobility aids.  I am perfectly capable of getting around the house (for the most part) and I can walk to and from the car and buildings, but if my outing involves much more walking than that I struggle.  Grocery shopping, walks in the park, even events that involve a lot of walking/standing around wear me out quickly and I develop quite a bit of pain in my legs.  I believe my challenges are a combination of low energy and lax ankle joints that put a lot of burden on my calf muscles - not to mention invite injury.     We've explored the option with our insurance company and been informed that they will only pay for a chair for me to be used in the home.  If the chair is able to fold up and go in the car then they will not cover it.  They only believe it is medically necessary for me to be able to perform my basic functions of dai

      If you stick with me here for any length of time, you'll see I travel in cycles with my struggle over not having been healed yet.  At times I feel mostly at peace, accepting that I have done what I am supposed to, surrendering my life, my heart, my future to God and trusting that He will put things together perfectly in His timing.  Then there are times where I feel like there's something wrong with me because I'm still sick.  This is especially true when I am sharing my situation with another Christian.       I, like many others, have been told that it is God's will that everyone be healed and that if I haven't been, my faith is weak or there is unconfessed sin in my life.        You can't imagine how many times I've brought this to God in prayer.  Yes, of course there are things about my life that should be improved.  I am definitely not perfect.  I am a sinner saved by grace.  That said, I truly believe that God brings up to me issues that He wants

      There's a little piece inside me that always wonders if I'm making a bigger deal out of all this than it really is.  Maybe I'm exaggerating - Lord knows I've been guilty of that a lot in my life! Maybe I just like the attention.  Maybe I'm living in fear, not doing things because I think it might hurt me when it really wouldn't.  Periodically this questioning hits a critical point and I have to test things out again.  It's like having a sprained ankle, or a bad bruise.  Maybe it's just me, I but I keep circling around to, "Maybe it's fine now, surely I should try again." Inevitably it's not fine yet and when I step on it or press on it, it still hurts.      I got to wondering though, maybe I could do this in a healthy way.  Actually find my limits so that I can reasonably live within them and not keep up the cycle of shame and injury.  I spoke about it with my counselor and she agreed that this might be an interesting use of my Fi

      I have thirteen (or more?) different providers and I've been onboarding two insurance reps, one that works with finding care and one that is supposed to help me with claims.  Most of my appointments are about a two-hour drive away, and driving is really hard for me.  My husband does the best he can to help out, but he has to work to pay for all of this!  In addition, I'm on about 20 different meds and supplements that I try to keep track of.  Some have to be taken away from food, some with food.  Some have to be taken away from other meds and supplements.  Some are in a days of the week container on the counter that I refill every week, others have to be in the fridge - those are the hardest to remember.  Every doctor wants to know what I'm taking now, and that changes every month, and what each of the things is for.  I can't remember!  I know my doctor told me.  I know we worked out my treatment plan together.  But I have no idea what was said, and my husband cou

     Some days, like today, I wake up and feel like I have no spoons at all to start the day, but I still have a day to start. I needed to be showered, fed, and out the door by 9:30 to make it up north to my physical therapy appointment. I'm trying to honor both my husband's limited time and attempt to balance his work-life-serving schedule by driving myself. It's not impossible, it's not even that hard, but it does cost more spoons. When I got home, I fixed myself a quick frozen lunch, because I knew I had a lot left to do and couldn't waste spoons on fixing the salad I really wanted. Then I picked up my room a bit and prepped for my first virtual appointment with my new sleep specialist. He had come recommended by both my doctor and the local Facebook EDS group so I was looking forward to it. I was not disappointed. The doctor came across as knowledgeable about the effects of EDS on sleep, he didn't question my diagnosis or make me jump through hoo

Up till about a year ago, I thought everyone who was in a wheelchair was there because they couldn't walk. It was pure ignorance on my part. I just didn't know any better. Had I been in a grocery store and seen someone in a wheelchair get up and pick something up off the shelf, I would have been in shock. I also spent most of my life being taught by my mother that mobility aids should only be used by people who absolutely could not function without them, and anyone else was faking to get attention. Between these two inherent biases, accepting the idea that I might need to use a wheelchair at different times was very difficult.      About a year ago I sustained a hip injury that made it exceedingly painful and sometimes impossible to walk. I did the best I could to get by using a cane, but found out that doing so was furthering my injury and I needed to allow my hip to rest. I still got around the house okay, but if I needed to do any extended walking, for instance s

      One of the main reasons I am writing this blog is to find my community.  Because of the conditions I deal with, I find it very difficult to get out and meet people and then maintain in-person relationships.  I'm an introvert at heart so being social is draining, but at the same time I have come to realize that it is critical.  It is so easy to become isolated when your health traps you in your home.  Yes, in this post-Covid world we have a bunch of options for connecting virtually like zoom and teams, but it's hard to meet people that way. Also, people around me don't get me.  I look fine, they don't understand why I can't go for a walk or go to a party or volunteer with them.  They don't understand what it would cost me if I did.  Sometimes I do because it's worth it, but I can't do those things on a regular basis.  I'd love to connect with people that get what my life is like, people I can be real with. I've hoped that by putting myself o

          Let's talk about the Spoon Theory.  It was originally developed by Christine Miserandino and discussed in an article she posted at  But You Dont Look Sick?   It's well-written and very helpful, but I am an incredibly visual person and I never REALLY got the spoon theory until I saw this video by Jessica Kellgren-Fozard.      Essentially, the Spoon Theory is a visual/tactile representation of the limited energy allotted to those with different conditions like chronic illness, disability, mental illness and more.  One spoon equates to a unit of physical/mental/emotional/social energy as all of these are in limited supply for this population.  Most healthy people begin their day with unlimited spoons, the choices and possibilities of what they could do that day are limited primarily by the hours in it, but they're up for whatever comes their way. A person with chronic illness, or one of the other conditions, however starts the day with a limited amount of spoons, a

      Over the last few years I've regularly encountered the idea of privilege, and it didn't sit well with me.  I've been told that I'm privileged because I'm white, straight, and middle-class. I'm not severely overweight, I'm a Christian and I'm married.  I struggled with being confronted by these ideas because I know that they're true - but I don't FEEL privileged.  I wake up every day in pain and I've only had two non-migraine days in the last three months.  I am dismissed by the medical community. When I take care of myself by resting or using mobility aids I am looked down on by able-bodied people.  I struggle to find compassion for myself and be able to make the choices to take care of myself because I don't feel that I deserve it. And then I am told that I am privileged.       Before today this felt like such a dis.  It felt like my struggles were being minimized and overlooked.  It felt like I was being told that I was a bad pers