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.

Warning : this entire blog post was created using speech to text on my phone. I am unable to read it, so please forgive any typos. I've always seen myself as a glass half- full type of person. So, because I've struggled quite a bit emotionally and physically since surgery, I didn't feel like I had anything of value to say here. I've had so many people comment on my positive attitude with everything going on, that it became a source of pride. If I couldn't come up with some way to put a positive spin on my situation, then I had no business writing a blog post. The fact is, recovering from brain surgery is really hard. You feel helpless, and hopeless. Those around you try really hard, so you try to fake it until you make it. I'm in a pretty low place this morning, so the rough honesty is coming out. Today, I like to share about my time in the hospital. Monday, the 24th, we headed up to the hospital bright and early. There were very few people scheduled

      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

    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

    Ten days after I received the call letting me know that they found something on the MRI I was sitting in the office of a Neurosurgeon.  I have no doubt that God orchestrated the circumstances that had brought me there, including a friend who is also dealing with a brain tumor recommending this clinic. But how could any of this be real? Only a couple of people knew what was going on, but there wasn't much to know before this appointment. All we had were a few key phrases on the MRI Study Result and our dear friend, Dr. Google.  I went into the appointment with the impression that the doctor would either recommend watching and waiting, doing another MRI in six months and seeing if anything changed, or taking it out right away.  In previous encounters where the option was to wait or do something I have vastly preferred doing something, but this time it was different. I had read about the potential complications of surgery and I was scared.  Not to mention, needing to act right awa

      I think that picture says it all... So I've been dealing with digestive issues since, well since I was born I think.  Some of it was definitely linked to anxiety and depression, but some of it was just how I was made.  They really came to a head in the fall of 2016. At that point ANYTHING I consumed, even plain chicken broth, had me doubled over in pain.  I kept finding things that helped a little, but they were band-aids at best and in the spring of 2017 I was diagnosed with SIBO for the first time.  There was a host of other issues present as well including a parasitic infection and a lack of digesting protein or fat.  We treated it aggressively with antibiotics, antiparasitics and a whole host of digestive support supplements as well as the most restrictive diet I've ever heard of.  It started off with me being able to eat a chicken breast (baked over a grate so there would be no fat present and with NO seasoning), ground beef cooked the same way, and boiled/pureed car

      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

      Today I saw my physiatrist and received a diagnostic lidocaine injection in my T4-5 vertebrae.  The original plan was to do the T5-6 junction, but when I described my symptoms (pain above my left shoulder blade radiating down my left arm to my hand) he suspected that T4 syndrome might be the cause and decided to do the diagnostic injection at the T4-5 junction instead.       Because people with EDS tend to metabolize lidocaine quickly, we only had a short window to assess the efficacy of the injection.  I believe my pain was significantly decreased (70%+) and that at the thirty-minute mark it began to return, with full return at about an hour.  I believe this indicates that treatment at the T4 area would be beneficial, but what kind of treatment I do not know.     I continued to experience pain in the area between my T5-6 and T11-12 vertebrae.  Again, I think this means that the other areas need to be addressed as well.  When speaking to the PA after the injection, she said that

     Today I visited my Physio's office and we discussed my next steps. Based on the suggestion of the PT who did my assessment, they agreed to try a Facet block at my T5-6 and T11-12 (at different times) to see if it would affect the pain in other parts of my back, particularly my low back. This will determine whether it would be beneficial to pursue Prolotherapy on these joints.           As we talked though, the PA I was meeting with became more concerned with my ankles than my back. I can't tell you how disappointing this was to me. The pain in my back has been so bad for so long and I've been holding out hope that prolo would help it. I let the PA know how much I'd like to do the back first, before the ankles, and she said we can do that if I'd prefer. Now, of course, I'm second guessing that because of how passionate she was about how much working on the ankles would affect.      The current plan of attack is to try a Facet block on whichever back joint is

      I received my third Prolotherapy treatment on August 25th, and, unbeknownst to me, I had COVID at the time.  Earlier that week I had embarked on an overly ambitious trip to Alaska to visit my daughter and on Wednesday I started feeling crummy.  I attributed it to overdo, but took a COVID test Wednesday night just in case.  It came back negative, as all the COVID tests I had ever taken have, and so I went to get my treatment Thursday morning.  It went about the same as all the others, though my doctor had a few extra medical students with him so there were more people in the room.  Over the weekend, I got worse instead of better. On Friday, my husband also came down with symptoms.  He too took a test that came back negative so we just figured it was a cold.  Saturday he ran a fever over 103 all day and on Sunday morning I suggested that we test again just in case.  This time they both came back positive.  So there I was dealing with the results of Prolotherapy on top of COVID - no

      This post is much more delayed than I had planned for a couple of reasons - it all boils down to I didn't feel up to it though.       The day after my second Prolo treatment I had an appointment with my PCP who was concerned that I was showing symptoms of Serotonin Syndrome and had me titrate off the migraine preventative I was on.  While I'm happy to report that the negative side effects I was experiencing have stopped, unfortunately I've had a migraine for all but one of the last 11 days, my pain levels have been much increased, and my fatigue is bad. I've spent the bulk of every day in bed and I haven't been able to do much at all.     How much of this is what Prolo would have looked like if I wasn't on the meds the first round and how much is a result of coming off them?  I don't know.  Maybe we'll find out next round.     So, like the first round, my worst day was the fifth day after treatment.  Unlike the first round it didn't get signifi

      I didn't plan to write a post about this, but it has become an issue for me and so I thought it might be relevant to someone else as well.        Twenty-one years ago I was pregnant with my middle son at the same time my best friend was pregnant with her daughter.  I had the privilege of being in the delivery room with her, but while I was there I witnessed her getting an epidural.  Knowing that I was going to be having a c-section with a spinal six weeks later, this posed a problem for me.  During my first labor I had a c-section after 17 hours of pitocin-induced labor and any pain relief was welcome.  This time, however, I was having a (semi) scheduled c-section and I wouldn't be in much pain prior to the spinal - AND now I knew EXACTLY what they were doing behind me!  That caused no small amount of anxiety for me as the date approached.     Similarly, prior to my first Prolotherapy treatment I was worried because I didn't know what it would be like.  This time I

      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 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