Salty Zebra

Warning: I get a little outside of my standard writing style in this post. As my husband says, I am usually "flowery" and subtle in the way I present things. Today I'm being brutally real.     I've mentioned lots of times on this blog the fact that I have Ehlers-Danlos Syndromes (EDS), but I thought that today I would share a little of what that means to me. It's hard to know how to communicate this to people who don't share my experience. For example:  I am never not in pain. Do I take pain meds? Yes. I take a great deal of pain meds. But no, they don't take my pain away. What they do is (sometimes) take my pain down to a level where I am able to function. My daily functioning pain level is more than many people will experience in a year. Is it easier for me to deal with pain because I am so used to it? No. No, it is not. In fact, the ongoing, constant, chronic pain builds on top of itself over and over and makes it MORE difficult to deal with. I just do...

 I sat in the doctor's office aghast as he pulled out his phone and Googled "Ehlers-Danlos Syndrome" (I think he even asked me how to spell it). Then, unbelievably, he looked at me and told me that he didn't know who had diagnosed me with this but they were wrong because he couldn't see that I had one of the symptoms mentioned in the Google summary. Yes, this doctor thought that his 30 second Google search "Trumped" my doctor's extensive learning and my 40+ years of living with this condition. This was one of many times I've been dismissed, gaslit, and sent away empty handed from doctors who were paid well to help me. Why? Because I'm a disabled woman.   This is a well-documented issue of women's health concerns being overlooked, women's descriptions of pain being disbelieved, and dangerously, women being underserved. For example, "According to a new study, women may be twice as likely to experience a fatal heart attack compare...

   If this is the first time you've encountered this scene, I highly recommend you add Kindergarten Cop  to your movie watching list. It's a classic. This scene is funny because, of course, he doesn't have a tumor. He has a headache because this man who has nothing to do with children in his normal life is attempting to wrangle a class full of Kindergarteners. But I feel more and more things when I watch this scene today.  Ten years ago, if I had wondered if I had a brain tumor when I was dealing with a particularly bad headache, most people would have called me a hypochondriac. Today, on the other hand, I actually do have a tumor. If you're just tuning in and this news has caught you by surprise, you can catch up here . Almost two years ago, my surgeon resected *about* 75% of it. I write that in such uncertain terms because we truly are uncertain. Turns out that MRI measurements are terribly fallible and can have a margin of error that is about the size they estimat...

  “So the king gave the order, and Daniel was brought and thrown into a den of lions. The king consoled Daniel by saying, “Yor God whom you continually serve will rescue you!”  Daniel 6:16 Darius, the king, had an anxious night of waiting. He hoped that Daniel would be saved by his God, but he didn’t know for sure. If he did, he would have had peace and rested well. The devotional author equated this to seasons of waiting in our own lives. I’m in a strange one. I have a brain tumor, that I’ve mentioned often before. I had a surgery last year that took out part of it, but was told that it would eventually grow. That began a season of waiting, that I thought had ended this spring when I was told that it had begun growing. We started down the path of treatment, seeking out a team, learning, and figuring out what treatment modality would best suit us. Then, this last Monday, we learned that the tumor had not actually grown at all! According to our new doctor, who uses differen...

  Radical tumor removal is not always possible because of the critical brainstem or diencephalic locations of some tumors. Tumor progression and eventual death are likely in such patients. Stereotactic radiosurgery for pilocytic astrocytomas part 1: outcomes in adult patients Kano et. al.  So my posts are usually preceded by a scripture verse, often an encouraging one. Today I needed to give you an insight into what I've been experiencing. From the time I was diagnosed with a brain tumor, about a year and a half ago, I was reassured that it was a "WHO grade 1 benign" tumor. I, mistakenly, took this to mean that it wasn't a big deal. Even when I was told in June that it had grown "slightly," I thought that meant they'd zap it with radiation and that'd be the end of it. Guess what, I was wrong. When my June MRI revealed growth, I was referred to the Tumor Center for treatment. Fearing a long, drawn-out process, I was relieved when they scheduled all my...

Buckle in! This is a processing post so it is likely to be long and wordy and emotional and probably flawed in many ways. I thank you for your patience and anyone who makes it to the end gets bonus points in my book 😏.  Let's start with the info. I've been having progressively more intense, more frequent, and longer lasting migraines. Since my eye surgery in May, I've also been experiencing a great deal of nausea, almost daily. Sometimes meds help (with either), sometimes they don't. In addition, since the eye surgery, my double vision has intensified. My depth perception is shot, I'm regularly missing things I grab for, mistaking curbs for cracks in the sidewalk, bumping into walls or counters. Those are the three things that neurosurgery told us to watch for with regards to the shunt functioning properly: headaches, nausea, and vision changes. Now the vision changes were probably because of the surgery and the nausea was probably  because of the migraines, but th...

  Therefore, dear friends, since you are waiting for these things, strive to be found at peace, without spot or blemish, when you come into his presence. And regard the patience of our Lord as salvation, just as also our dear brother Paul wrote to you, according to the wisdom given to him,   2 Peter 3: 14-15 Would I say I’m at peace? That’s an interesting question. I deal with a lot of pain, but I’m ok with that. Would I like it to be gone? Absolutely! Does it affect my daily life? Definitely! Just because I’m ok with it doesn't mean that it doesn't affect me. So how can I say I’m ok with it? I feel like I’ve made my peace with it. I’ve learned techniques to tolerate it, breathing through it, stretching, elevating, heat, etc. I recognize that it affects my ability to think and I’ve come to accept that. On high pain days I still play games with my family, but I expect to lose by a large margin. I set aside more time for my Bible study or meal planning than I normally w...

Ok, guys. We’re going to get real today. This is a post I’ve avoided writing. Or maybe I have written it. Oh dear. That’s the issue. It’s about memory. I thought I was getting personal on Monday when I wrote about our marriage, but this is the inside of the inside of the inside of me. This is the stuff I don’t want to talk about with my husband, or my counselor, or even myself. Forget my upcoming surgery, this is the really scary stuff in my life. It started a long time ago, well before my brain surgeries. In fact, this was one of the symptoms that I hoped would be cured by them, but it wasn’t. The most dramatic incident took place just before we found out I had a tumor when we were in Disney World. As you can imagine, it’s a very over stimulating place and I struggled with that a lot. At a couple of points in the trip it hit a tipping point and I “blanked out” as my husband put it. In the middle of a sentence, I froze. I stopped talking, moving, anything. I stayed that way for a ful...

     June brought with it my much anticipated visit to the neuro ophthalmologist I discussed in this post as well as a new side effect to my surgery. I began developing abdominal pain, specifically lower abdominal pain. It was tricky. It wasn't always in the same spot. It didn't always have the same quality or conditions. It actually took a while for me to begin associating several different pains as being related. When I initially brought it to the attention of my neurosurgery team, they said it couldn't have anything to do with the surgery. That just didn't sit right though, and I kept doing my own research online. Anecdotally, it turns out that quite a few people have had abdominal issues with the catheters from VP shunts. You see, this long tube runs from my brain all the way down into my belly, and coils in the base of my pelvis. I have no uterus anymore, so it nestles right up against my bladder. You can imagine that the two are not good friends. I have since see...