Salty Zebra

Gaslighting, in particular medical gas lighting, has received a lot of attention lately. According to this excellent article by the Cleveland Clinic, "Gaslighting is a form of emotional abuse and mental manipulation that will leave you questioning your own reality and have you wondering if you’re in the wrong in nearly every argument." For an in-depth look at medical gaslighting, you can check out this video . Because of all the awareness, gaslighting is on my and my husband's radar. When we are in medical appointments, he makes sure our questions are answered and my symptoms are noted appropriately. So I was totally taken off guard when I encountered the reverse of this, toxic positivity. Positivity sounds, well, positive, right? Did you know that it can be taken too far and become detrimental? I didn't. A couple of years ago I had my first appointment with one of my doctors, a surgeon actually. I won't name him here because the purpose of this post is not to ca...

This week I had the wonderful blessing of being able to attend the EDS Society's 2024 Global Learning Conference in Philadelphia. This year's theme was EDS from Head to Toe and they covered how EDS affects bodies in every area.  EDS is a collection of genetic conditions that affect the collagen in a person's body. There are potentially more than thirteen different types. I have the most common of these, hEDS or Hypermobile Ehlers-Danlos Syndrome. At this time, about 1 person in 5,000 is diagnosed with this, making it a rare disease. Experts believe, however, that it is drastically under diagnosed and that the incidence is far more likely to be 1 in 500, making it as common as diabetes. So why isn't it diagnosed more? Simple. Doctor's don't know about it. In most medical schools, EDS is a paragraph in a chapter about rare diseases at best. Unless they are exposed to it for some reason, most medical professionals don't have EDS on their diagnostic radar.  So w...

     Quite a while ago, in what feels like a former life, I was very active in yoga. I trained as a Christian Yoga Instructor and I taught several times a week between my church and the local YMCA. I was even looking into opening our own studio with several instructor friends right as COVID came down, which nipped that dream in the bud. It turned out to be a good change of direction because my health began to take a downturn at the same time. It was around then, after several serious connective tissue tears, that I was diagnosed with EDS. I had to go through a season of relearning my body and it’s true limits, not the perceived ones that my hypermobility had taught me. Next, of course, came my brain tumor. All this to say, it was not a great time for me to be starting a business! I am happy to report though that, with the help and guidance of my physical therapist, I have been able to dip my toes back into a personal yoga practice. I’ve started with the gentlest form I kn...

  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 ...

It's when I'm "with" my people that I'm most acutely aware of my conditions. This week is the annual EDS conference in Dublin, Ireland which I am attending virtually. Last year was the first time I did this and it was a shocking eye opener. Hearing so many others share identical symptoms was my first reality check that I did, in fact, have EDS. My life was changed. I've had EDS all my life, but knowing it made me see everything differently.  Today I'm at the hospital for my three-month post op from brain surgery. As I sit in the prep area, waiting for my MRI, I'm reminded that I have a brain tumor. That's why I'm here and that's why I'll be back here periodically for the rest of my life. To check and see if the tumor has grown, if I have to have surgery again. Tears well up in my eyes thinking about it.  Here's the thing: There's no point in worrying, it won't change anything, but that doesn't stop the anxiet...

    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 men...

     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 ...

    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 ...

      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...

      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 th...

      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)...

      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 ...

      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 inter...

      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 addre...

     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 Fac...