*Press it* Some days you burn it with fire and some days…

…it burns you with fire instead!

If it isn’t one spoonie nearly burning down her office, it’s the heat from a heating pad causing a rare heat-related burn rash for another spoonie. Life is complicated enough with electric appliances + brain fog. Now there’s another concern about the use of heating pads to be aware of, sigh!

I’ll admit I am re-blogging this without independently verifying the medical information. However, Fibonacci – in addition to being a great writer and painter – is a scientist with journal access like I am. I trust her to do her homework!

via Hidden Dangers of Chronic Heating Pad Use!

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Bombogenetics with a Side of Pie

Cross one random thing off my life’s bucket list. For Pi Day this year, we were gifted with a snowstorm that shut down the city for 36 hours (including leading to the cancelation of an Improv show I would otherwise have been in, boo!). The whole city – at least those in it who had office jobs – got work-from-home days on Pi Day. My partner and I both decided to make pies in honor of the occasion.

I have always wondered why other people could beat egg whites into stiff peaks, but I never could. I have gone my entire life unable to make a meringue, custard, french silk pie, or banana cream pie despite otherwise being a pretty good cook and/or baker. I have tried all the tricks I have read about over the years – chilled metal bowls, tilting the bowl and doing an undulating mixing motion with my beater and/or hand mixer for an optimal mixing motion – and I do mean everything. I once asked a chemical engineer about chemical admixtures and fluid dynamics just to determine if he could help me make a meringue. He could not, but he could make one himself. And, he assured me there really was something to the tilted bowl and optimal mixing stroke thing I had read about from the literature in general. It works for concrete as well as meringues.

Before I got an upgraded diagnosis,* I interpreted my continual meringue “failure” as just that – true failure on my part. I thought it meant I was a lousy baker because aren’t meringues kind of one of the “five mother sauces” of pies? It’s kind of disheartening when RSD shows up in the kitchen. The kitchen should be a failure-free zone, because, as my Partner says, “if you mess up, you can still eat the evidence.” But, no, I blamed myself for my meringue failures anyway. Well, it turns out it was probably an early bit of evidence – along with ankles that kept giving out during soccer leading me to be medically retired, early carpal tunnel and “double jointed” hands that made a no-nonsense Eastern European strings teacher tell me point blank that I should give it up because I couldn’t hold my bow well enough to be any good at it – that I’m hypermobile. I’m medically excused from meringues, too.

But, I’m older and wiser now and I have better kitchen equipment. I’ve learned that it’s okay to ask for accommodations if you have a chronic illness, including in the kitchen. There’s no shame in a little help. My particular unexpected accommodation for my own bomb-o-genetics came this Christmas in the form of a fancy KitchenAid stand mixer given to us by my Partner’s parents. I progressed from a lifetime of failure to, in 2018, both understanding the root cause of my prior failures and being able to make a meringue at literally the touch of a button. (I did have to make my Partner put it in the oven and take it out later. I also randomly drop things sometimes and unset meringue fillings and/or fresh-out-of-the-oven meringues are not something I want to risk dropping!)

I wasn’t a cooking failure after all: just too poor in grad school to afford a stand mixer. With that knowledge, whole worlds of homemade whipped creams, Boston cream pies, and more have opened to me! For now, though, enjoy some pictures of my first ever lemon meringue pie and custard. I also include my Partner’s apple pie as a shout-out to him. They are a little toasty on top, but that is because we didn’t realize our new oven ran to the extra-hot side of 350. I’m still willing to eat the evidence.

 

*What subtype you ask? Well, presumably just hypermobile, but ask me after the genetic test results come back. I have a side of my family that I don’t know a lot about that also raised some flags in the review, so good to rule out anything more serious with a full genetics test. Presumably hypermobile unless I say otherwise in a few weeks. Hope I don’t say otherwise for my sake! Hypermobile is supposedly the least severe subtype, as well as not having a clear genetic marker yet.

Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.

*Press It* Zero Visibility a.k.a. Brain Fog

I read this post less than four hours after I wrote a post that included the line, “I bet fibro can make you faint, too.” Well, per this symptom list, it absolutely can. I procrastinated like the ADHDer I am in reblogging this, but I felt the timing was too coincidental not to share.

Crafts, Chronic Illness, and Adulting

One of the most amazing things about the human body is its ability to adapt and overcome, especially with chronic illness. In time your brain leads you to believe that most of your symptoms become your new ‘baseline’ (as I call it), because let’s face it, it’s not really your new ‘normal’. Cognitive impairment or ‘brain fog’ as it’s more commonly known, likely has you pulling out your list of symptoms at every new doctors appointment ensuring you don’t forget your new baseline symptoms. As you nervously go through the list the doctor is likely looking at you as if you’ve seriously got to be joking.  I found this ME/CFS and Fibromyalgia handy dandy symptom list and took the printed version to my last appointment (crossing out the 14 out of 144 items that didn’t apply to me). The doctor looked it over in front of me and then looking at me straight faced said, “You can’t…

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POTSies Against Nazis

I have a colorful new diagnosis. (I also have gastritis, probably as a result of being allergic to everything.)

I’m not inflammatory (IBD), but I’m pretty salty. Postural Orthostatic Tachycardia Syndrome (POTS) is a type of dysautonomia officially characterized by a heart rate increase of at least thirty bpm upon standing. This tachycardia is often associated with a drop in blood pressure (orthostatic hypotension), though clinically OH warrants its own additional dysautonomia diagnosis. There are multiple types of dysautonomia. I seem to be able to catch ’em all.

Continue reading “POTSies Against Nazis”

Subway Sociology #1: Showing Ini-$h*!-ive: Business Meetings with IBS and ADHD

I just came back from a business meeting in another state. A small group of us went. We stayed at different hotels, and we agreed to meet up half an hour before the meeting to make sure no one was late. The meeting was in a city with good mass transit, so my boss encouraged us to take the subway to get to our meeting. It would be “less complicated” and cheaper.

I had a terrible, no good, very ADHD time getting there. First, I got lost on the way to the train. Big surprise!? Then, the train readers weren’t taking credit cards because of a malfunction, and I never carry cash. Using cash means I can’t track my spending on my statement, which is a recipe for frivolous ADHD spending. The only ATM around was one that needed a branded debit card to enter before business hours. Guess who isn’t a Bank of America customer, and thus couldn’t use her own debit card to unlock the doors of the 24-hour ATM? I was on the verge of panic when a passerby finally took pity on me and unlocked the door with her card.

Continue reading “Subway Sociology #1: Showing Ini-$h*!-ive: Business Meetings with IBS and ADHD”

CBT and the Statistician

Catastrophizing is an interesting phenomenon when you are a statistician. It’s ingrained in me to work out the odds, even for the things I fear the most. I am the girl who corrects her therapist that, “No, I don’t actually think X, Y or Z is going to happen. I objectively assign only about a 15% probability of X happening in the next three months; however, I fear X enough that even those odds trigger nightmares.” I am either terrible at Cognitive Behavioral Therapy or amazing at it, depending on how you view it.

Sometimes the odds are somewhat reassuring, and sometimes times they aren’t. Either way, never tell me those odds unless you can back them up with peer-reviewed citations. I work in public health, and epidemiology is not often kind. I consider myself an advocate because I see in the odds how rough it is for anyone different from population expectations. I see the odds for those who aren’t neurotypical, for those who live in poverty, for those of color. I see the odds, and I both fear and advocate more because I see them. After the first few therapy sessions – wherein I bombard them with the worst of the depressing odds ratios I work with every day – most therapists pursue a different therapeutic direction. CBT is an evidence-based treatment, but I don’t know that anyone has ever evaluated whether it works as well on those who estimate the odds of catastrophe every day to earn their paycheck. I’ve had better luck with therapeutic methods that stress radical acceptance. I know the odds, but I am still learning how to sit with those fearful odds.

So, what does a statistician say to someone else experiencing the same physical symptoms when that person does catastrophize? What does she say when someone states without hesitation that she has cancer? What does she say when the odds are higher for that person, but more tests need to be run? What does she say when she’s been discussing the catastrophic scenario for her own symptoms for hours, and no one is catastrophizing over her?

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Trying to Knock Out Stigma and Getting My Ass Kicked Instead…

People have been following my blog! That’s awesome! My readers rock. Seriously, I have some impressive readers. Biologist painters, medical doctors with a gift for photography, C-suite women who raise beautiful kids, and readers who know how to describe psychological phenomena more vividly than I have learned in years of therapy. What would my therapist say about being jealous of someone else’s descriptions of therapy?

This is a blog about failure. Future posts will return to my usual tone, but I warn you ahead of time, levity doesn’t really describe this post. If I’m going to write honestly about failure, I must also write honestly about what it does to me. RSD spirals do eventually end, but the one I am in sure hasn’t yet! Until it does, I am handing over the reins for today’s “guest post” to the bully in my brain called Rejection Sensitive Dysphoria.

Continue reading “Trying to Knock Out Stigma and Getting My Ass Kicked Instead…”

So that’s how much pain I’ve apparently been in…

Chronic_MigraineI have an unhealthy tendency to discount my own pain. I’ve had migraines for most of my life, but I still have trouble feeling I deserve to take care of myself during them. I still feel guilty anytime I don’t just “power through” the pain, and I still feel guilty calling myself a spoonie when I do power through it. I know I shouldn’t. Although I struggle to show self-compassion, I still measure all pain on a personal scale of 1-migraine.

Continue reading “So that’s how much pain I’ve apparently been in…”

Trust and Mental Health Treatment (Part 2): Dropping the F(ibro) Bomb

I may or may not have fibromyalgia. Or maybe I should say that I have fibromyalgia if I accept the diagnosis? That will maybe make more sense – well, maybe make some sense – after I explain, hopefully? Honestly, if it ends up making sense to you, readers, please let me know. I’m still confused!

Continue reading “Trust and Mental Health Treatment (Part 2): Dropping the F(ibro) Bomb”