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.

      Last Monday felt surreal. My husband and I kept saying it over and over the whole week.  I was supposed to have been undergoing brain surgery and then spending the week in the hospital, but instead I was home, with no idea what would happen next.  I had been told on Saturday at the Emergency room that I would receive a call from the Oral Maxillofacial Surgery Clinic ( OMFSC) on Monday and they would schedule me to be seen that day or the next. I was also told that the Neurosurgery clinic would contact me sometime this week to reschedule my brain surgery.  I received the OMFSC call before 10 am (the time at which my husband had said he would call if they hadn't) and was given an appointment for Tuesday afternoon. Yes, I asked, and no, they didn't have anything sooner.  More disturbing was the call I got from neuro saying they were looking at early May to reschedule the brain surgery.  That was really difficult to take.  First they tell me that the tumor is in a dangerous s

     I returned last week from a two-week trip celebrating our 25th wedding anniversary.  It was great.  I got to do a lot of things, enjoy beautiful weather, and eat fancy food.  I also overdid it, like every single day.  I keep wanting to think that I've made peace with my physical state and abilities but based on what I sign up for and do, I don't think that's true.  There was a lot of "shoulds" being thrown around in my head.  I "should" be able to enjoy a full day in a Disney World Park if I'm in a wheelchair.  I "should" be able to take down time in the park and not need to go back to the room to rest.  The reality was, spending even half a day in a Disney World Park was too much, even in a wheelchair.  I went into it with a game plan.  I wanted to do as much as we could each day, trying to ride all the rides that my physical condition would allow and see all the different lands.  My husband is a morning person that doesn't requir

      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

      So I didn't end up writing a post every day of October, but I did write 24 posts!  That's pretty impressive in my book and I call it a win.  Especially since writing 24 instead of 31 meant I was able to prioritize my health and get the rest I need instead of becoming a slave to a challenge.     What did I learn from last month?  I was reminded of why I began blogging here.  I wanted a place to be able to share about my thoughts and feelings and passions.  I wanted to be able to record where I'm at in time. I wanted to create a safe space where others can come and feel heard and seen.  I think I am finally beginning to do that.  I learned that I can write several times a week and not struggle to come up with content.  I'm overflowing with content! I also think I found my primary blog topics.  I'd like to be intentional here about covering health, faith, and travel.  As I look back over my posts those themes keep repeating themselves.  There are a few bloggers o

      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

      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 days if I want to connect vi

      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 interesting use of my Fi

      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 a very short time we connected with a group of peop

     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

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