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

      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

      This morning I read an article written by a fellow Zebra (person with EDS) on the benefits of social media for those with chronic illness.  She shared that it helped her to feel connected to those she cared about even when she couldn't see them physically.  Further, she said that it helped her feel like she can, "still 'travel' all over the world and 'visit' friends and family from all walks of life."     For me, social media has a significantly different effect.  I've struggled as my abilities declined watching friends and family out and about doing wonderful things together.  I felt a heavy weight on my heart and questioned if I was a good mom anymore.  I struggled with jealousy at the things that others were able to do easily that I couldn't even consider.  I found that every time I opened Facebook on my phone it brought my mood lower and lower and I eventually had to cut myself off from it entirely.     These days if I want to connect vi

      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

      I have a very addictive personality.  I don't do anything small.  Once I get into something, it's full steam ahead.  I research everything to death.  I'm all about maximizing and doing things the best way possible.  What's the best way to cut up a pineapple?  How can I get the most out of Genie+ at Disney World?  What are the tricks to beating an event in EverMerge without spending too many coins?  Yes, I am that person.       This can be a great skill/trait to have as it enables me to enjoy learning and helps me to be a good steward of the gifts God has given me.  It can also be a trap. I can find out that in order to beat the event in EverMerge without spending coins you have to collect "Pixies" that float across the screen every 4 minutes.  That means that I always have my phone next to me and my game running.  It distracts me from anything I'm doing, and I'm afraid it has made those I care about feel like I'm not paying them enough attent

     Five years ago some friends of ours from India came to stay with us for a bit.  We had a great time hanging out in The City, going to a local farm for a harvest festival, and carving pumpkins.  Today one of them returned to stay with us for a few days.  As his arrival approached, and even more when he got here, I was faced with what a different place I am in today than I was then. The last time they came I had just finished my Yoga training and was praying about how and where to use it.  My body was in pretty good shape, my digestive system was a mess but the rest of it worked pretty well.  We walked all over two nearby cities and did tons of active things - I didn't break a sweat. I even had my husband taking some yoga photos of me for my portfolio (see above). Three of my four children were still living at home and the oldest was living in a dorm nearby going to college.       This time, all but one of my children are moved out on their own with one living a 4.5 hour drive a