Posts

A POTS Primer

 In my daily encounters, I'm finding more and more people who are dealing with Postural Orthostatic Tachycardia Syndrome (POTS) or other similar autonomic system dysfunctions.  There's honestly too little information out there about what life with this condition is like, what kinds of treatments help, and what accommodations a person can make to make life safer and easier. Please note: none of this post is medical advice; I'm not a doctor. There are affiliate links at the end of this post for some of my personal favorite products; if you follow these links, I may earn a small commission at no extra cost to you. Let's start at the beginning:  Autonomic System- this system in your body is responsible for everything your body does subconsciously in response to stimuli. It is involved in things like blood pressure, digestion, and body temperature. If you change position, your autonomic system should adjust your blood pressure so blood keeps flowing to your head and extremit...
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Apparently I'm so bad at what I do most that it might kill me

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 So, because of my chronic illnesses it is rather common for me to sleep around 12-19 hours per 24 hour day. It's a bit more than most people, and it is actually rather sucky because it's not like it helps me feel good, it just means I don't end up feeling worse (mostly). What it really means is that I don't often have enough time in my awake part of the day to complete chores, self-care, or projects, especially when I am often driving and attending 3 people's worth of medical visits. Yesterday's visit meant 45 minutes of waiting, another 45 of prep time, and then they told me they couldn't proceed to plan without a pre-authorization. This is often my standard kind of day. So I do my best to keep a book/kindle/phone with me and fully charged to use while I wait. But back to the sleeping thing. It's what I do most, but apparently I'm really bad at it. According to my new pulmonologist, I stop breathing while I sleep. More than 34 times per hour all ni...
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Getting thrown off a cliff

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 So it's no secret that I'm disabled, and have been for a few years now. Let me tell you the learning curve is steep! Especially when it comes to the government. There is so little I knew about disability law, support assistance, and government healthcare before I found myself wading through the bureaucratic system essentially solo (shoutout to my mom and friend Angie for all they did to help!). It was terrifying. And I had success, putting me in the "lucky" top 20%, so I know it could have been so much worse. Why does this matter to anyone else? Well, for starters, anyone could become disabled on any day of the week, and most of us will be disabled at some point in our lives (though most commonly in old age). You have literally zero control of when it could happen; for all you know you're already a ticking time bomb like I was, or there's a car crash coming, or any other thousands of things. Plus, studies are showing that with each time a person catches Covid...
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Lost in the Void

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 Ok, so, I don't actually have a TikTok account because I live on a wifi network with a super security conscious person (and that extra-ness applies in ALL things, like, I apparently am supposed to rinse out the cans from my seltzer water before I recycle them...???😶) But I do love the concept of the app, so I just live a couple weeks behind the timeline of the "cool kids" and see the same viral vids when they appear on the "old people" versions of social media I already have, like facebook or insta. As far as productivity goes, viral reels and ADHD are a match made in hell, but because I have to spend many hours a day laying down and resting to moderate my health issues, it's not like I was ever going to be super productive anyway.  What I do have are a very particular set of skills. Skills that make me a nightmare for people who want to save money. Basically, my current top categories of reels are either of the wonderful Penny the Cat, or of cool amazon f...
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"Politically Correct" doesn't exist

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A selfie of Rachel smiling while holding a tiny black puppy. This photo is here on the off change you'd forgotten who is behind this blog lol  Welcome to the time of year when I am forced to watch the most amount of commercials of any point on the calendar.  Mostly because, when our Rays baseball team doesn't screw it up, there's an overlap of 3 pro seasons plus college football. Other than sports, pretty much everything my household watches is on a streaming service where there either aren't any commercials at all, or the algorithm chooses them based on what we've been talking about around our google devices or phones (all hail the self-selected wire tap!) so we don't always get to know about every movie being released, every drug coming to market, or every product designed to save us from our own ineptitude. Sadly, watching more network sports means commercials, and living in Florida in an election year means those commercials are less informative and more pol...
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A new adventure for the church

 There's a running joke in the disability community called: Crip Time. It basically alludes to the fact that we either 1) run late because things just take us longer due to disability, or 2) our time is not valued by society because of our disabilities so we are expected to wait longer for things than abled people. Thus the passage for time when in a constant state of disability is nebulous and weird. Like, I had appointments this week with my Neurologist, Cardiologist, and Physical Therapist, which seems like a lot of medical stuff in one week to an abled person, but for me is normal. The other days this week, however, we're mostly spent getting ready for these appointments and sleeping. Which makes it all the more strange when people in the "real world" tend to ask me "what have you been up to these days?" I mean, the same old thing I always am, and also kinda nothing, because very few of these medical appointments feel like progress anymore. It's just...
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Raindrops on Roses

 If absence makes the heart grow fonder, any subscribers to this blog should be head over heels in love with me by this point.  I mean, it's been over a year, and about half a pandemic (by my guesstimation) since I last even came to this blog, let alone wrote anything.  Some things have changed: we moved to a new house. Some things have not: still disabled and largely a medical mystery of comorbidities. So, fun times all around. I'm sure you've always wondered exactly what it takes to keep a Rachel operational (with conditions, of course).  One of the first things I learned about being disabled is that it is rather expensive.  In fact, most disabled people spend an extra 27% to attain the same quality of life as a typical abled person. Add to that the fact that many disabled Americans are on a fixed or limited income (often well below poverty level) and you get a sense that our society expects disabled people to suffer if they want to stay alive. But how about w...
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