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 out, managing my spoons so to speak.

    The ten days leading up to my surgery date were full and challenging. We left very early Friday morning to drive across the state and share the news of my brain tumor with my brother and my middle son.  Our hope was to fly, but they were all full.  I think the drive was good for us though.  The mountains were absolutely beautiful. Snow, frozen waterfalls and lakes, everything seemed intensified, even more beautiful than usual.  As I sat in my brother's home that afternoon with him and his wife, knowing that I had to share soon, butterflies filled my stomach.  I couldn't believe how nervous I was. My heart was racing and I had trouble catching my breath. Finally my husband signaled me that I couldn't wait any longer and I needed to get it over with so I prefaced it with a request for secrecy regarding what I was about to share until all of my kids had been informed and then shared the news.  They were understandably shocked, but very loving and supportive.  We enjoyed th

    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 the NET it reads, "Do not let you

     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

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 haven't written in a while because I've had covid. I'm still recovering, but doing much better overall. Today a thought from my devotional stood out to me enough that I wanted to share it. I'm studying the life of Joseph in the book of Genesis. Like the famous Job, Joseph experienced one suffering after another for thirteen years, through no fault of his own. Instead of falling into depression or raging against the injustice, though, he just kept doing the next right thing. Wherever he was at, whether sold into slavery or unjustly thrown in prison, he continued to act with integrity and do his best at whatever was assigned him. Eventually, blessing came his way and he was put in charge of all of Egypt. He was given a wife who bore him two sons. The names he gave his sons, Manasseh and Ephraim, show that his blessing outshone his suffering. When he named Ephraim, he said, "Certainly God has made me fruitful in the land of my suffering." In order t