Unfortunately, I think I'm now an adult

 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...

 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...

 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...

 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...

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...

 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...

 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...

One of my favorite retorts to denigration is the question: "What even is the point of you?" It both subverts the intended insult previous to it, and also implies the ask-er serves no essential purpose themselves.  To me, I've always found pointlessness a shameful prospect. Having a purpose has always been a critical part of how I see myself and my future.  This has become an issue as concerns my self-image as a disabled person. But that's a reflection I'm not sure I'm ready to delve into just yet; I'm still working it out. I'm not sure I fully understand the point of all those stylized lettered signs, chalkboards, and canvases found running rampant with pithy phrases at craft stores, home decor places, and pinterest, either.  Most of them say such generic or useless stuff, and some are just downright, frustratingly wrong.  For example, one of my least favorite quotes of all time: "God never gives you more than you can handle."  I think, at...

Post-church naps are always good Today, I'll be able to count on one hand the number of things I get done. It's just that kinda thing. I've been hit with a flare-up of fatigue (and other symptoms, but fatigue is the worst at the moment) since my sister's wedding about a month ago. I never knew, back before this all began, what it meant to be fatigued. I'd been tired, I think everyone knows what it feels like to be so tired you just fall asleep where you sit. What I've learned is that there are 2 major differences between "tired" and "fatigued". One, if you're tired you can rest or sleep and then you feel not-so-tired. Two, I always could identify a reason I was tired, like not sleeping well, or spending all day running around doing stuff, or having to get up early that day.  Fatigue means I've slept over 12 hours last night, and I'm multiple cups of coffee into my day, and I'm still about to fall asleep. Those things I s...

And now, for Part 2! (if you're not up to speed on part 1, it can be found here and I recommend that you wait at least a day after reading it to reflect before you come back to this post) So, for the most part, the entirety of this followup was drafted a couple weeks ago, just after the first one. The lectionary that Sunday held perfect inspiration and grounding. Unfortunately, I didn't actually get time to sit down and write this up until now owing to life happening.  So, Yay! My sister is married!! And also yay, things have calmed down enough for me to get back to writing. Part 1 intentionally left off with some hard issues to face and some (hopefully) thought provoking questions to assess. The primary metaphor was of the body, and how the church, both corporately and by individual members, tends to self-amputate.  While General Convention might go a lot smoother if the group was more homogeneous, I know it would not be healthier or stronger as a church.  The probl...

Ahh, General Convention. That triennial behemoth of Episco-nerds gathered together, mostly to argue (lol jkjkjkjk...but only kinda). The Young Adult Festival meets with Presiding Bishop Curry (Photo cred: Episcopal Young Adult Ministries ) Let me start by saying I had a great time, overall, despite some serious pain due to fibromyalgia and migraines. I got to catch up with some absolutely excellent folks that I love and adore.  I was able to meet a whole bunch of new people who have now been added to that list for the next time.  And I count myself as lucky that recovery time for this ended up being a 1:1 endeavor (i.e. a one week event, and it took 1 week home before I was functional again. If this seems ridiculous to you...welcome to life with Fibro, because that's actually a 50% improvement from my average). All in all, I enjoyed it enough to go back. Which is good, because there were enough things that frustrated me that signifies I'm probably going to HAVE to go b...

In case you clicked because you know me and might worry a bit about the title of this post, let me start by saying, "I'm sorry. I kinda tricked you. It's called click-bait for a reason." This post contains many things, but the bottom line is that I am no worse off than usual, and am not in any danger of self-harm. Now onward to The Saga of the Kidnapped Tomato! So last summer, I got the harebrained  scheme to try and grow stuff.  I say it in this fashion because my forte has usually always run more along the lines of plant homicide by neglect, but I figured that, since my health makes me housebound more frequently than not these days, I maybe stood a chance of being here to tend to growing things.  So I planted a few seeds, and tried my best to remember them, and then failed most of them in spectacular fashion.  I may have been less than 50 feet away at all times, but they still died outside and inside my house like I was doing it on purpose.  Except for one...

It's that time of year again: when my least favorite season in Florida has ended.  For anyone living outside the south Florida region, you're probably under the misguided assumption that we have no seasons here, and that is only part true. We don't have YOUR seasons here. Florida seasons, while annually reoccurring, are quite different to those further north (though it seems all bets are off nationwide this year, so maybe no one has actual seasons anymore).  Florida seasons are as follows: Summer Lovebug season (mainly a pain for keeping your windshield clean of bug goop) Why is it STILL summer--it's October!?!?!! Snowbird season (like many other animals, this species is migratory and clogs up our traffic and early dinner specials) Winter (this can last anywhere from 1-3 days, and will be known by the sight of people in parkas, long pants, and socks under their sandals. Also, social media posts will be all about the fact that it's too cold to go swimming outd...

Anyone want to try and guess my least favorite season of the church year??? Anyone? Buhler?....Buhler? Well it's "Stewardship season", and I almost rather despise it at this point. I find it so frustrating, and for so many reasons. For example: 1. Stewardship should not be secret church code for a capital campaign. 2. Stewardship shouldn't be confined to a season. 3. The typical experience rarely challenges westernized status quo with gospel based instruction. 4. The typical English vernacular attributed to stewardship is wholly inaccurate and often completely unquestioned. Don't get me wrong, I have fulfilled a tithe my entire adult life. So I recognize that money is indeed an inevitable part of being a good steward, but I also feel that the biggest contributions I have been able to give to my church have always been non-monetary. For all the times we've stated that the church is the people, not the building(s), we continue to undercut this sentiment w...