Salty Zebra

      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 came in here to start writing this post and thought that my app must not have updated because I couldn't believe that my post about the gastroenterologist was the last one I had uploaded. Turns out, when you hear certain things, a bookmark is placed in your life. I've heard about this concept in other arenas before, catalyst points. After them, you see your life as before x, and after x. I was surprised to not see any other posts because so much happened last week, and in my mind I had written several. I think I just felt like I couldn't actually post them here until after I had put them into context. It's funny, I have no readers for this blog at this point, but I was afraid that if I put my news up here before I shared it with my children they might hear about it the wrong way, and it was really important to me to not have that happen.      Last Tuesday I spoke on the phone with the dermatologist office about the results of my biopsy. I had fully expected it t

      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

      Last night I wrapped up testing week with a sleep study.  I've been meaning to get around to doing one of these for a long time, decades really, but I never prioritized it.  When I saw the sleep doctor a few weeks ago, he ordered this home study for me.  My insurance, like most others, requires a home test to be done before they authorize an in person study.  The rigmarole I had to go through to get it checked out and picked up was quite extra in my opinion.  They were not able to send it via post, but I had to go into the office and pick it up, and then they wanted it returned first thing the next open morning.  Of course, they don't have any offices near me, so I chose one that I could detour to after my PT appointment yesterday, and by detour I mean adding a couple of extra hours of travel in :(.     When we got to the hospital we had a little trouble finding our way to the clinic, but a helpful staff person pointed us in the right direction.  I checked in and after a

      This week I gave up my regular PT appointment to meet with my Physical Therapist and a representative from a durable medical equipment (DME) company to be fitted for a wheelchair. I mentioned in a previous post that my insurance will not cover a power wheelchair for use outside the home, but when my PT connected me with Bill from the DME company, he said that he has gotten one type of chair covered by insurance in the past.  This is a standard, manual wheelchair that is retrofitted with wheels that have motors in them.  The company that creates them, Yamaha, just a couple of months ago had a model with a joystick approved by the FDA.  It's called the Navigo (pictured above).  It just occurred to me that maybe this is one more part of God's timing, that I am finally going through this process right after this model became available.  Prior to the Navigo, the power wheels had to be instigated by pushing on the rims, essentially they aided the user by providing more power

      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

      I have thirteen (or more?) different providers and I've been onboarding two insurance reps, one that works with finding care and one that is supposed to help me with claims.  Most of my appointments are about a two-hour drive away, and driving is really hard for me.  My husband does the best he can to help out, but he has to work to pay for all of this!  In addition, I'm on about 20 different meds and supplements that I try to keep track of.  Some have to be taken away from food, some with food.  Some have to be taken away from other meds and supplements.  Some are in a days of the week container on the counter that I refill every week, others have to be in the fridge - those are the hardest to remember.  Every doctor wants to know what I'm taking now, and that changes every month, and what each of the things is for.  I can't remember!  I know my doctor told me.  I know we worked out my treatment plan together.  But I have no idea what was said, and my husband cou

     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 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