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

     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

      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

      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

      Five years ago, almost exactly, I was out on the peninsula at my Christian Yoga training.  It was intense with days starting at 6am and ending at 10, with twenty women and one man trying to get through three showers.  The information came at us as if it was issued through a firehose.  They had so much to teach us and so little time.  There were a few special moments for breaks though where we got to explore the grounds of the retreat center.  It was fall at the time and I began to get curious about why leaves change color and fall off at this time of year.  There's a very long explanation, but a few thing stood out to me.  The first was that the leaves changed color because the energy in them was being drawn back into the tree.  This energy would help the tree survive the winter when food was more scarce.  Then, when the time was right, a special chemical reaction would tell the tree it was time to let go of the leaf.  The chemical that did this is abbreviated ABA, which to m

      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

      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

     Five years ago some friends of ours from India came to stay with us for a bit.  We had a great time hanging out in The City, going to a local farm for a harvest festival, and carving pumpkins.  Today one of them returned to stay with us for a few days.  As his arrival approached, and even more when he got here, I was faced with what a different place I am in today than I was then. The last time they came I had just finished my Yoga training and was praying about how and where to use it.  My body was in pretty good shape, my digestive system was a mess but the rest of it worked pretty well.  We walked all over two nearby cities and did tons of active things - I didn't break a sweat. I even had my husband taking some yoga photos of me for my portfolio (see above). Three of my four children were still living at home and the oldest was living in a dorm nearby going to college.       This time, all but one of my children are moved out on their own with one living a 4.5 hour drive a

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