Salty Zebra

          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

  When life gives you limes...     If you've stumbled across this post, then you likely have Chronic Lyme Disease, think you might, or know someone who does.  For an excellent, in-depth explanation of Lyme Disease, I will refer you to  LymeDisease.org , but here's the basics.  You get Lyme Disease from a biting insect, usually a tick.  You may not even know you've been bit by a tick like a significant percentage of those diagnosed, including myself.  You don't have to live in or visit the Northeastern part of the US. Lyme disease has been found in every state, and most countries worldwide.  I don't know when I got it. I grew up playing in the woods right alongside lots of deer.  We had cats, dogs, goats, rabbits, chickens, and a horse. There were plenty of opportunities for me to contract it, but the local doctors believe that Lyme Disease doesn't exist in the Pacific Northwest, so it was easier for them to believe I contracted it on a trip to West Africa in 200

      This week was absolutely packed with appointments, but so much progress was made!       Monday I had the opportunity to see an EDS specialist that had at first seemed impossible to get into. Thanks to my primary doctor's support and regular calls on my behalf as well as the prayer support of friends and family I was able to see his physician's assistant last month for a screening.  She affirmed that I was a candidate for this specialist's treatment and sent me off to get an MRI and do the Spinal Stability test that I completed last week so that I could come prepared to meet the specialist and begin therapy.  He walked into the office, greeted me and my husband, and then gave the following speech (paraphrased as I didn't record it 😉 ), "I assume you're interested in Prolotherapy since that's what I do, but before we can consider that you need to get past four mental leaps:  1. This is going to hurt and you can't do anything to help the pain 2. You

      I know we don't know each other well yet, but I'm going to dive deep today into an issue I've struggled with for years, maybe decades: unanswered prayer.  For a long time I was afraid to even discuss it.  I didn't want to sound like I didn't have faith, and I didn't want to diminish anyone else's faith.  But one of the things I love about God and the Christian faith is that we are allowed, even encouraged, to ask the hard questions.  I know that if it's something I've struggled with, odds are there's someone else out there that has as well.       Over the years I've come to a sense of peace with a new understanding or epiphany about faith, suffering, etc. but whether it's because I forget or because my challenges intensify, I come back over and over to wondering about unanswered prayer.  Over the last 6-8 years these prayers have been about my health, but before that it was a desire for a baby, or my marriage, or things with my kids

      I wrote last that I am privileged to have access to health care, and much variety in it, but that also brings you to a place where you wonder, "Am I doing too much?"  I began to ponder this over the course of this week, and even more as I look at the week ahead.       I started the week on Monday with a counselling appointment. I'm so thankful to have a supportive counselor that I've been seeing for years and is not afraid to speak truth to me when I need to hear it.  With holidays and travel I haven't been to see her for a few weeks, so this was a nice opportunity.       On Tuesday I headed into the city first to see my primary doctor, a Naturopath, for a monthly appointment combined with a magnesium IV.  My system doesn't tolerate magnesium orally and it is crucial for the process of replacing amalgam fillings that I am currently undergoing.  We discussed my current challenges with digestion and a recent understanding of the history of pain in my ankle

      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