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.

    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 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 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

      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

      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

      As I mentioned in a post earlier this month ( Day 4: Becoming an Ambulatory Wheelchair User (saltyzebra.blogspot.com)  I am exploring my options with mobility aids.  I am perfectly capable of getting around the house (for the most part) and I can walk to and from the car and buildings, but if my outing involves much more walking than that I struggle.  Grocery shopping, walks in the park, even events that involve a lot of walking/standing around wear me out quickly and I develop quite a bit of pain in my legs.  I believe my challenges are a combination of low energy and lax ankle joints that put a lot of burden on my calf muscles - not to mention invite injury.     We've explored the option with our insurance company and been informed that they will only pay for a chair for me to be used in the home.  If the chair is able to fold up and go in the car then they will not cover it.  They only believe it is medically necessary for me to be able to perform my basic functions of dai

      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

     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

          One of the primary tests for determining if you have Ehlers-Danlos Syndrome (EDS) evaluates your hypermobility.  Hypermobility, or an increase in the range of movement of which a body part and especially a joint is capable (Merriam-Webster), in the case of EDS is caused by a defective collagen protein that leads to weakened connective tissues.  My tendons and ligaments are not strong enough to hold things in place.     This was never more apparent in my life than when I began to participate in and teach yoga as I approached my 40s.  It all came so easily to me and I thought I was just naturally gifted at it.  I guess in a way that was true, but that gift came with a price.  It didn't take long for me to start sustaining injuries.  I reasoned them away as having not warmed up enough or that I was practicing too much.  The truth was my weakened connective tissues were tearing, and because of their faulty collagen they were not healing quickly or fully so the injuries were c

Up till about a year ago, I thought everyone who was in a wheelchair was there because they couldn't walk. It was pure ignorance on my part. I just didn't know any better. Had I been in a grocery store and seen someone in a wheelchair get up and pick something up off the shelf, I would have been in shock. I also spent most of my life being taught by my mother that mobility aids should only be used by people who absolutely could not function without them, and anyone else was faking to get attention. Between these two inherent biases, accepting the idea that I might need to use a wheelchair at different times was very difficult.      About a year ago I sustained a hip injury that made it exceedingly painful and sometimes impossible to walk. I did the best I could to get by using a cane, but found out that doing so was furthering my injury and I needed to allow my hip to rest. I still got around the house okay, but if I needed to do any extended walking, for instance s

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

      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

      One of the main reasons I am writing this blog is to find my community.  Because of the conditions I deal with, I find it very difficult to get out and meet people and then maintain in-person relationships.  I'm an introvert at heart so being social is draining, but at the same time I have come to realize that it is critical.  It is so easy to become isolated when your health traps you in your home.  Yes, in this post-Covid world we have a bunch of options for connecting virtually like zoom and teams, but it's hard to meet people that way. Also, people around me don't get me.  I look fine, they don't understand why I can't go for a walk or go to a party or volunteer with them.  They don't understand what it would cost me if I did.  Sometimes I do because it's worth it, but I can't do those things on a regular basis.  I'd love to connect with people that get what my life is like, people I can be real with. I've hoped that by putting myself o

      Sorry if the picture is triggering, but much of this post is about injections so... Last Monday we headed into The City for my afternoon Prolotherapy appointment.  I'm going to be very clear in this post so if you're sensitive to this type of thing you may want to stop reading now. For others, like me, who are interested in exactly what a Prolotherapy treatment is like, read on.       They went over last minute questions confirming that I had taken no anti-inflammatories for the last two weeks, had a ride home, etc. Then they had me lay face down on a paper-covered examining table with a face cutout. I lowered my pants to an uncomfortable level, but in order to get at your SI joint a fair amount of buttocks must be exposed 😕.  They sterilized the area and then donned lead aprons, giving one to my husband as well who elected to be in the room.  The doctor arrived at that point and carried on a ten-minute conversation with me during the treatment while I was face down.  I

      Last fall I was diagnosed with EDS.  It's something I've had my entire life evidently, since it's a hereditary condition, but I've only known about it for a little while.  With EDS, Hypermobile Ehler's Danlos Syndromes (hEDS) in my case, the collagen proteins in your body don't work quite right.  This means your joints tend to be more lax, or hypermobile, but it can also affect the other collagen-related tissues in your body, like your GI tract and your skin.  When it comes to your joints, there's no exercise that can tighten connective tissue that has stretched.  Surgery isn't a viable option either.  So what's left?  If I chose to ignore it, then likely my injuries would continue to snowball happening with more and more regularity as different parts of my body stopped supporting the others that were depending on them.  For example, if my ankles are very loose (which they are) then that can lead to a higher likely hood of injury in my knees or