Salty Zebra

      Five years ago, almost exactly, I was out on the peninsula at my Christian Yoga training.  It was intense with days starting at 6am and ending at 10, with twenty women and one man trying to get through three showers.  The information came at us as if it was issued through a firehose.  They had so much to teach us and so little time.  There were a few special moments for breaks though where we got to explore the grounds of the retreat center.  It was fall at the time and I began to get curious about why leaves change color and fall off at this time of year.  There's a very long explanation, but a few thing stood out to me.  The first was that the leaves changed color because the energy in them was being drawn back into the tree.  This energy would help the tree survive the winter when food was more scarce.  Then, when the time was right, a special chemical reaction would tell the tree it was time to let go of the leaf....

            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 h...

      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 ...

      I know who I am, what I believe. You'd think it would be simple then to represent that to the world, right?  Wrong.  In the Pacific Northwest where I live, Christians are not common.  In fact, most people have a negative view of Christianity.  This means that being me, speaking my truth, answering people honestly carries a potential cost.  Then again, so does not.     Today at my doctor's appointment I was chatting with the nurse while she was preparing my skin for an injection.  Based on her name and a tattoo on her arm, I assumed that it was likely she was Muslim. She asked if we used to dress up for Halloween and I told her that we used to when doing events with the youth group we led, and she hadn't heard of that, so she asked what a youth group is.  You'd think this would be a blinking light invitation to share in a simple way what I believe, but I panicked and froze.  I was afraid of what she would think o...

      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 sa...

      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 da...

      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 inter...

      Today I saw my physiatrist and received a diagnostic lidocaine injection in my T4-5 vertebrae.  The original plan was to do the T5-6 junction, but when I described my symptoms (pain above my left shoulder blade radiating down my left arm to my hand) he suspected that T4 syndrome might be the cause and decided to do the diagnostic injection at the T4-5 junction instead.       Because people with EDS tend to metabolize lidocaine quickly, we only had a short window to assess the efficacy of the injection.  I believe my pain was significantly decreased (70%+) and that at the thirty-minute mark it began to return, with full return at about an hour.  I believe this indicates that treatment at the T4 area would be beneficial, but what kind of treatment I do not know.     I continued to experience pain in the area between my T5-6 and T11-12 vertebrae.  Again, I think this means that the other areas need to be addre...

      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. ...

      When asked recently about my hobbies, I had to of course mention board and card games.  When my kids were young I hated them.  I played because I wanted to be a good mom, but I ended them as quickly as I could and avoided them if possible.  When my kids entered their teen years, some friends of ours began introducing us to two kinds of games I'd never heard of before: deck builders and European games.     The first deck builder we played was the DC Deck Builder game.  Once I wrapped my head around the concept I was hooked and in the last eight or so years since I started I've collected every base set and expansion available and I'm bought into the kick starter for the new sets coming out early 2023.  I love the variety, the challenge, and the fun brought by this game style and I've added a few others in this genre to our collection as well.     European style games also impressed me far more than the traditional games lik...

      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 car...

      I was tempted to do a "make-up" post for the one I missed yesterday, but I'm just going to own the mistake and keep plugging along.  I think that's an important skill to have when you are dealing with chronic illness.  You are going to hit speed bumps, or like when I was learning to drive, you may even jump fully over the curb, but the key is to not get stuck there.  Giving up is easier than pushing through, but it's not nearly as rewarding.       Every day lately I wake up with less energy than I think I need to do the basic tasks of my day, things like showering, fixing and eating food, and picking up after myself.  On top of that, I have this ever-growing "To-Do" list. No, for real, it's an actual list in an app called "To-Do."  It feels like for everything I check off, I add three more.  I go to bed every night exhausted and feeling like I didn't get enough done.  What is one to do in the face of this? ...

     Today I visited my Physio's office and we discussed my next steps. Based on the suggestion of the PT who did my assessment, they agreed to try a Facet block at my T5-6 and T11-12 (at different times) to see if it would affect the pain in other parts of my back, particularly my low back. This will determine whether it would be beneficial to pursue Prolotherapy on these joints.           As we talked though, the PA I was meeting with became more concerned with my ankles than my back. I can't tell you how disappointing this was to me. The pain in my back has been so bad for so long and I've been holding out hope that prolo would help it. I let the PA know how much I'd like to do the back first, before the ankles, and she said we can do that if I'd prefer. Now, of course, I'm second guessing that because of how passionate she was about how much working on the ankles would affect.      The current plan of attack is to try a Fac...

          One of the primary tests for determining if you have Ehlers-Danlos Syndrome (EDS) evaluates your hypermobility.  Hypermobility, or an increase in the range of movement of which a body part and especially a joint is capable (Merriam-Webster), in the case of EDS is caused by a defective collagen protein that leads to weakened connective tissues.  My tendons and ligaments are not strong enough to hold things in place.     This was never more apparent in my life than when I began to participate in and teach yoga as I approached my 40s.  It all came so easily to me and I thought I was just naturally gifted at it.  I guess in a way that was true, but that gift came with a price.  It didn't take long for me to start sustaining injuries.  I reasoned them away as having not warmed up enough or that I was practicing too much.  The truth was my weakened connective tissues were tearing, and because of their fa...

    I've struggled lately with fear.  I fear that I cannot handle today:  the pain, the tasks at hand, the emotional cost.  I fear what the future will hold.  I create in my mind a projection of what that future might look like based on a downward trend that I perceive my body is on.  The truth is, God has not given me a vision of the future or knowledge of what is to come.  Everything I am worrying about is pure speculation.  I have taken away the phrase, "What if?" reasoning that the assumptions I am making about my trajectory are reasoned and have historical basis.  The truth is, my fears are still "What if?"s, I've just reframed them into something that seems more responsible.       So what's the answer to fear? Peace.  In John 14:27 (NIV) Jesus tells us, " Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."  In t...

       I am an introvert blessed with a family that loves to be with me.  I love being with them too, but sometimes I feel so... smothered?  I wouldn't change it. I so enjoy that they seek me out and want to spend time with me.  I love them so much, but sometimes it is SO HARD to say, "Yes, let's hang out!"       If you're not familiar with the concept, WebMD defines it this way, " An introvert is a person who needs to recharge their social battery rather than being energized by socialization. The characteristics of introversion tend to include spending time in solitude, avoiding or rarely participating in large group activities, or preferring interactions involving one or two close friends."     So that means I need time alone to charge my social battery, and that's not something I get enough of.  You'd think someone who is stuck at home much of the time due to chronic illness would get plenty of this, but my husband...

      I've avoided this topic, didn't plan on writing about it at all to be honest.  But this morning as I was talking with my husband he shared that he believed it is important to share all aspects of my faith walk because there might be someone out there that needs to hear it.       So about a month ago we decided it was time to leave our church.  We did not come to this conclusion easily - it was a 9 month, painful journey.  Even more painful as it was just two years ago this fall that we had to leave our previous church.  This makes me feel like we come across as people who don't take church membership seriously, or are looking for perfection - I assure you this is far from the truth.  We had spent nearly twenty years at the church we left two years ago, and we only left because the teaching had begun to stray far from biblical truth and the church also did not embrace the community in the way we felt led to do.  After...

     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...

     All my life I've been told that I remember things wrong, that's not how it happened, and my experience isn't valid. I've been told that I exaggerate, and that I can't possibly be feeling what I say I am. I'm too young, too healthy to feel the way I say I do. And for a long time I believed it.      It's only been in the last couple of years that I've been able to begin to call abuse, abuse. I've been able to validate my body and believe what I feel. For so long, I buried things because they couldn't be true. I stopped listening to my body and came to a point where I couldn't even hear it anymore. It had to scream in order for me to listen, and scream it did.       I'm beginning to learn to listen to the clues my body gives me and respond before it's too late. I'm not great at it yet, but I'm getting better. I used to be able to mark my calendar for when I would be sick after times of overdo. I thought that was ...

     I love to travel, but I love planning travel even more! I love to dream about trips and put together itineraries just for fun, even if I don't get to do them-although once I start dreaming about a trip I want to do it all the more!      When my oldest son was five I took him to Disneyland, just the two of us. I had that four-day trip planned out in fifteen minute increments, I'm not kidding. About thirty minutes into the first day I thought it would be a good idea to hop on the Matterhorn because the line was so short. After one look at the abominable snowman, my son wouldn't get on another ride till after four pm.  So much for my plan! That same son, when we were sorting out his senior trip for high school, insisted that we not have a plan. So, being the person I am, came up with an "un-plan" that accounted for every possible option we might want to pursue. I had listed out every potential place we might like to visit with their open ...

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 inst...

     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 mo...

A week ago, I started feeling a new type of pain in my low back, right around my SI joint. It started like a muscle cramp or spasm. It started to spread up my back, I thought, but in hindsight I wonder if it was actually trickling down from an injury in my thoracic spine. In any case, it's not getting better. I see my physiatrist on Wednesday, my primary care physician on Thursday, and my physical therapist on Friday. Hopefully between them, we can find some course of action.  In the mornings, while I'm getting ready, I listen to the scripture meditation from https://pray-as-you-go.org/. Last week, ironically, many of the scriptures were from the book of Job. If you're not familiar with the story, Job lost everything, including his health, but he is famous for saying, "The Lord gives, and the Lord takes away, blessed be the name of the Lord." I was reminded of a promise I had made to God some time ago that everything I had was his. My marriage, my home, my kids, m...

      I received my third Prolotherapy treatment on August 25th, and, unbeknownst to me, I had COVID at the time.  Earlier that week I had embarked on an overly ambitious trip to Alaska to visit my daughter and on Wednesday I started feeling crummy.  I attributed it to overdo, but took a COVID test Wednesday night just in case.  It came back negative, as all the COVID tests I had ever taken have, and so I went to get my treatment Thursday morning.  It went about the same as all the others, though my doctor had a few extra medical students with him so there were more people in the room.  Over the weekend, I got worse instead of better. On Friday, my husband also came down with symptoms.  He too took a test that came back negative so we just figured it was a cold.  Saturday he ran a fever over 103 all day and on Sunday morning I suggested that we test again just in case.  This time they both came back positive.  So there I was de...

 As evidenced by the dates of my last few posts, I've been struggling with motivation to maintain this blog, primarily because I don't have any readers yet.  But I'm not likely to get any readers if I don't have content, not to mention having my posts read is not my only goal of writing this blog.  So, I'm taking a que from one of my favorite people, Kim Holderness , and I'm challenging myself to write a blog post every day in the month of October.  This one doesn't count, so I'm off to write!