Salty Zebra

  Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.  2Co 4:16-18 NIV      It's been nearly a year that I've been on this journey. Really, it's a continuation of a journey I've been on far longer, actually all my life.  None of it has been easy, but I feel like I'm past the worst bits.  Today I live in the reality that I have a brain tumor.  That's tough.  I also deal with the pain and challenges brought on by Ehlers-Danlos Syndrome and Lyme Disease.  My days are pretty simple, without room for complication.  80% or more of my energy is devoted to doing what I have to to maintain life.  Pacing is a tool I've had to learn inside and ...

     Yesterday I completed my Trio Smart Breath Test for SIBO. I was sent home with it by the ARNP I saw at the new GI office last month. We had some comically bad back and forth a over the phone where I was trying to get information about prepping for the test that delayed my being able to take it before my Palm Springs trip, but it's finally done. When I tested for SIBO in the past I used Genova Diagnostics, the same company I did my stool test with on Monday. I guess they are the preferred company by naturopaths, but this GI office had a different company they used.       Having done them both now, I can definitely say I prefer the Genova Diagnostics version from the patient end of things. Their instructions and user support are far more informative. The manual that came with this test was so oversimplified that made it difficult to know what to do.       The day before the test I had to observe a strict diet with onl...

      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 ...

  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 t...

      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 thi...

 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.