Salty Zebra

      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). I am limited in what I can do to begin with so I'm not going

      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.  The chemical that did this is abbreviated ABA, which to m

      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 of me, I was afraid of offending her, I was just afrai

      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

       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 works from home most of the

     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

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

      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

 From  Why the zebra? – The Ehlers-Danlos Support UK  : “When you hear the sound of hooves, think horses, not zebras.” This phrase is taught to medical students throughout their training. In medicine, the term “zebra” is used in reference to a rare disease or condition.  Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses.  Doctors learn to expect common conditions. But many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions.  Ehlers-Danlos syndrome is considered a rare condition and so EDS sufferers are known as medical zebras.  This identity has now been adopted across the world through social media to help bring our community together.

  For me Salty refers to different things.  You’ve got the slang term which refers to someone who is irritated or angry.  Yep, that’s me sometimes.  If I’m being honest, which is what this space is for, there are many times when I don’t understand why I’m in the situation I am.  Why do I have to deal with chronic pain?  Why can’t I do the things that others can?  Then there’s the haters.  You know those people who look at me when I’m in a wheelchair or using a cane and think I have no business doing that because I’m young and I don’t have any visible disabilities.  Yep, they make me salty. While those things are true and a real part of my experience, more importantly I seek to be salt.  I want to add flavor to the world, enhancing those around me to make them shine.  I want to speak truth that encourages others and preserves hope.  In Matthew 5:13 we read, “You are the salt of the earth. But if the salt loses its saltiness, how can it be made salty again? It is no longer good for any

  Hi, I’m the Salty Zebra and I use the pronouns she/her.  Like everyone, I am a collection of experiences and relationships.  I am a wife, mom, daughter, sister, cousin, auntie, niece, granddaughter, and friend.  All of these relationships matter to me, and some of the more unusual ones further define me.  For example, I am a child of divorce, not all that uncommon in itself, but the divorce was a result of both domestic violence and a sexual identification change on the part of one of my parents.  While I’m guessing this isn’t as unusual as I was led to believe as a child, it does significantly alter my childhood experience from the “normal”.   I am also a Spoonie, someone who deals with both chronic illness and disability.   I have a genetic disorder called Ehler’s-Danlos Syndromes that affects my connective tissues as well as chronic Lyme disease and many of their comorbidities (yes, I hate that word too, but it’s what they call them).   This affects the way I interact with the w