Salty Zebra

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

We see it in movies and TV shows, but we always hope it will never happen to us. The phone rings and it's someone unexpected, a police officer, a relative, a doctor. They give us news we weren't expecting, and from that moment on our lives are forever different. And it's not just our future that's different. We begin to define our past as "before"and "after" this life changing news.  I got the call last Monday, February 27th, 2023. Ironically, it came just two days after the anniversary of another one of those calls, the one letting me know that my brother had died unexpectedly at the age of 40, two years ago. This time it wasn't my Mom calling, it was the ARNP from my neurologist's office. She was calling me at 5:30 at night the next business day after I had had a brain MRI. Right away I knew this wasn't going to be another, "Everything looks fine, we don't know why you're in pain all the time," call. That n

     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

    We've just returned from a four-day cruise on the Carnival Radiance departing from Los Angeles, California and I learned so much about getting around in my new electric wheelchair.  If you're interested in hopping on one of these very affordable cruises and you have mobility issues, you might be wondering if it will work for you.     Carnival has taken many steps to enhance accessibility on the Radiance including: Providing maps with accessibility paths on every floor at the elevator banks (see images below)  They have added in many automatic sliding doors The stateroom hallways are the widest I've seen on any cruise ship They have tables marked for handicap use in restaurants and seats in some lounges In the buffet, staff watch out for people with mobility issues and offer to help When going up and down ramps to enter or exit the ship there were always staff there to help They had a special guest services counter window with a lower, accessible height They had an acces

      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

      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