First they came for…

Leaving aside everything else that is wrong and immoral about this proposed ban, at the moment there are something like 11,000 trans people currently serving openly in the US services and reserves. They are there legally, and it is currently their right to serve openly. Trump’s ban, at first glance, appears to take away their…

via A Note on Trump’s Proposed Ban of Transgender in the Military — Whatever

I have no words for a country that wants to take rights away from people, instead of arcing towards justice.

I could say something about how a big part of why I have PTSD can be traced right back to the belief that some people are less ‘people’ than others. I could cite more sources about where that dangerous lie leads in the end. I could just insert a middle finger emoji. However, I am not a professional writer. So, instead I’ll share the words of a best-selling author and hope he’s more persuasive than I am.

I’m not trans, and that’s exactly why it matters that I be angry, too. Yes, I have my own struggles going on, today in particular, but that makes it all the more important I speak up. 

I read a lovely post today from another blogger that included the line “slowly dying of survival.” That is one of the best descriptions of trauma I have ever read. (I guess this means that I need to watch Sense8!) I feel like that often. My PTSD stems from events which both have not resolved and which I can’t just run from to personal safety because that would mean abandoning someone else who needs me to injustice. I feel like I’m just done often, today in particular. I’d never hurt myself, but I’m slowly dying of survival. I feel like just trying to fight for stasis takes too much to leave anything for change, yet an advocate is what so many marginalized groups need in the face of the systemic dismantling of human dignity that is the U.S. today. 

I feel like my PTSD/ADHD make me too much of a hollowed-out flake to be the kind of advocate the people who rely on me need – to dream of systemic change – but personal experience has taught me that you can’t assume anyone else will be there unless it affects them personally. I will thus keep fighting in however meager a way I can to save others from the fallout from unjust systems that deny human dignity. 

I ask that you join me – be that speaking up when you see a disabled individual, a person of color, or an LGBT individual being discriminated against, calling your Senators to advocate for the care of America’s marginalized, buying a meal for a homeless individual, or just voting with a conscience.

 

Presents for Your Loved Ones with Chronic Migraine — The Migraine Chronicles

via Presents for Your Loved Ones with Chronic Migraine — The Migraine Chronicles

My own migraines have been getting the best of me this week. I’m about to go out of town for a business trip, and I’m praying I can get them under some control before I leave. I wasn’t aware before this reblog that pre-prepared gluten-free meal services were a thing, but I now feel like my life has been lacking something critical. I wonder if they also have FODMAP-friendly meals?

I’m sure those prepared meals are ridiculously expensive, but I would accept them in a heartbeat as a gift! They would be especially welcome after my colonoscopy, when I am finally able to return to my normal low-wheat allergy rotation diet. It has been fun in some ways doing a full-gluten challenge in advance of the test. I haven’t eaten this much cake, pizza with real dough, or non-cardboard-tasting pasta in ages! It has also been unpleasant in more ways – even more GI symptoms, random hives, congestion, and nausea! (At least my partner thinks I have “cute little sneezes.”) I already knew I had a wheat allergy. Celiac disease would be worse, and I do think it is important to know whether that could be causing my issues. I’ve been doing my ‘challenge’ meals at home, to minimize work symptoms, but I haven’t been able to avoid them. I’m worried about symptoms on my upcoming trip, though my GI suggested I follow my previous diet during the trip and resume the challenge when I return home.

I already own a lovely quiet immersion blender and I have a partner who acts as my non-robotic vacuum cleaner most of the time. I felt like this list of gifts was speaking to me personally as I read through it until I came to the (sensible) suggestion of migraine-tinted sunglasses.

I feel self-conscious about migraine sunglasses. Many people know that light sensitivity is a common symptom during migraines. They may not know, at least before meeting me, that light sensitivity can also cause migraines. I’m one of those lucky people who need to wear sunglasses all the time, and I do mean all the time! I have often had to wear them indoors because bright fluorescent lights trigger attacks. I use glare-reducing computer covers, but I often can’t do anything about bright lighting.

The best working experience I ever had was the time I was able to request an office with no windows. I still think back fondly about that office. After I left the company, the building security guy actually took it over, and he finished the job of turning it into a vampire layer. He painted the walls black, set up his CCTV and turned the office into the security command for the whole building. I wasn’t surprised. I wondered in hindsight if I could have gotten away with dark wall paint. I had earned the office nickname of Sparkly Vampire, so I probably could have pulled it off! I would have stayed in that office forever, but corporate downsizing is a b*7ch.

When I’ve had my own office with windows, I’ve at least been able to bring in my own dark blinds and use soft, low-watt lighting. A co-worker/semi-mom (she was thirty years older than me) once bought me a Scentsy because she said I should just go ahead and complete the Massage Envy decorating effect. I had the dark blinds, soft-lighting, gentle white noise machine to drown out distractions. She also knew about my tactile fidget toys, such as pin art toys, sand gardens and a wide variety of random ‘squishies,’ that I brought out when I was alone and unobserved.  I actually discovered that solid essential oils would melt in her Scentsy. I experimented with them for migraines, too. Though I never found essential oils to help, they made my office smell pretty in a rare way that didn’t cause sensory overload, and they made my coworkers happy. I kept the Scentsy until I eventually ran out of essential oils and forgot to replace them. Oops.

In open-offices, the bane of my existence, I just wear dark sunglasses. I work in tech-savvy offices. Eventually, my coworkers who have figured out the relationship between light and migraines inevitably suggest tinted sunglasses, as though they were probably the first to suggest them to me. They aren’t, but I have never bought them. The idea of migraine-tinted sunglasses instills a deep longing in me, especially when my coworkers make fun of my cheap, ugly wraparound sunglasses. Unfortunately, I don’t think I will ever even be able to justify asking for them, even as a gift.

Migraine sunglasses are a pipe dream when, as a girl with ADHD, you both must always be wearing sunglasses to function and yet you have also always managed to lose at least a pair of those sunglasses bi-monthly for over ten years. $150/pair for specialty sunglasses? I could lose ten of my cheap wraparounds for the cost of one of those things! Even if I could afford them, would they even fit over actual glasses? I also have a high-prism prescription that makes contacts impossible for me. Even the bully-in-my-brain has given up berating me for my cheap wraparounds. With them, I might be able to keep my job. Without them, I’d definitely be unable to manage it, and my RSD fears financial ruin more than the social rejection caused by my poor taste in fashion. I’ve long since determined that there are not enough ADHD meds in the world to actually enable me to keep hold of a pair of sunglasses or an umbrella, so I thank people for their suggestion and continue on as I have.

However, I’ve always wondered how much better, if at all, they work than my wraparounds. If they actually stopped migraines cold, maybe shelling out $1500 yearly to replace them each time would be worth it. Have any of my readers ever tried them? I’d love an honest review. (I’d also being willing write that honest review myself if any of my readers happen to work for a company that makes them. I have such a wistful longing for them that I wouldn’t be above prostituting my blog to get my hands on a guilt-free pair!)

By all means, if you love a migraineur, consider getting them a pair of specialty sunglasses for their photosensitivity. If they happen to have ADHD, though, just don’t be surprised if they both love them and lose them. For me, I’ll keep wearing my wraparounds for now, and I’ll keep wondering if the grass really would still be greener on the other side of the fence if I were wearing green-light filtering glasses…

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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Why do we apologize to our partners for “our crazy?” as women with mental health challenges?

I’ve seen this many times. I’ve been this many times. A woman with anxiety, depression, OCD, bipolar, PTSD or another mental health challenge offers a thank you to her partner for “putting up with me” or for “tolerating my crazy.”

My partner knows I started a blog. He also knows me well enough to know that the rejections that will always hurt the most are the ones from those rare people I’ve let inside my walls in person, not just from behind my facade of purple flowers. He knows that I’ll always remember when he slips out “that’s stupid” as I carry around two heaping armfuls of groceries – rather than acknowledge my quick trip has become a full-on ADHD expedition – more vividly than all the times he’s told me I’m intelligent. He knows that if he snaps at me before he even wipes the sleep from his eyes that I will still freeze, shut down, and be unable to share the nightmare for which I sought early morning comfort in the first place. (He is not a morning person, any more than I am!) He knows that I am still “wired to remember one negative thing more than years of positive” things he says. I know that hurts him, even as he’s careful not to accidentally engage the bully in my brain.

He knows the quickest things to say to send me into an RSD spiral, and he (mostly) remembers not to use them (a few unintended mutterings about stupid actions at a grocery store or grousing after a 4am wake up aside.) He also knows that one casual negative comment with regards to my blog from him would still be worth a thousand Mighty rejections. There is always a part of me – a small part of me, but a part of me – expecting him to turn on me, too. He makes me feel safest, ironically, by not reading my blog. He offers me the breathing space to never be searching for hidden signs he thinks I’m a terrible writer. He offers me the confidence of knowing parts of my history I haven’t shared on this blog and not leaving me wondering if, after reading other stories of those who have it worse, he’ll believe I’ve just been over dramatic by comparison.

He has no idea that my tagline is “Laughing at myself and learning to love (live with) it.” My work-related RSD spiral was fed yesterday both by my own gift for finding myself in a hole and continuing to dig and by my boss being happy to lend me his shovel. (That will be a blog post at some point, I’m sure.) In response to my relaying a work story wherein I tried to use self-deprecating humor to shortcut the awkwardness, my partner replied “You are not allowed to use self-deprecating humor. I don’t care if other people, including me, do it. When I do it, it’s real humor. You mimic the words, but I know there is too much truth behind them for it to ever to be funny. Promise me you’ll stop.”

I’m not going to be able to realistically make that promise. Saying negative things about myself is too engrained in me. I wouldn’t know how to stop doing it, so I might as well at least attempt to keep them lighter while I do. However, it did make me realize that I am probably not being very kind to him when I drag him into my own self-loathing. I can’t promise him that I’ll silence the self-deprecation, but maybe I can promise to no longer stuff my words into his mouth.

Continue reading “Why do we apologize to our partners for “our crazy?” as women with mental health challenges?”

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…”

When You Find Your Tribe

When I started my blog, I think I fully intended to write a “what is ADHD” explanation post. In true ADHD fashion, though, I procrastinated because I could never get it “right” – until I eventually just forgot I intended to write one at all. This post sounds so much like what I would have written, if I could go back in time and write a blog during the original diagnosis process itself.

I remember that stage right before/during diagnosis where I Googled All the Things! I remember feeling like, “Oh my God, finally a questionnaire I don’t have to half fake just to score high enough to get help!” I am glad someone actually was clever enough to put these thoughts into a blog post in media res, and that thanks to the wonder of the reblog I can creatively “borrow” it with one click!

Also, for anyone reading closely, the bit in this post about women with ADHD being good in a crisis? It can still be true for those who are co-diagnosed with PTSD. I’m always the calm, rationale, almost-detached person during the crisis itself. I’ve been so calm I’ve been called selfish repeatedly in my life simply for not freaking out enough. I’ve carried that stoicism far enough you’d never even know I had PTSD if I didn’t tell you. It’s when the crisis is over, in the privacy of my own home, that the toll starts to show. Calling me selfish is also a big trigger for me, for both PTSD and RSD reasons.

`O ka hali`a aloha i hiki mai

It seems fitting that I’m finally writing a post so long after my last one.  I definitely need to invest more time in blogging since it’s both therapeutic and provides a means to remember the fun adventures we’ve experienced!

Today isn’t about a family adventure however.

Today’s post is twenty years plus in the making.

If you haven’t yet guessed, as a child I experienced more than my fair share of trauma and mental illness.  It’s impacted me long into life, but I’m grateful for the strength I’ve gained from it.  I’m the person I am today, the person my friends, family and husband love in spite of or because of it.

For over twenty years, I’ve been told that I have Generalized Anxiety Disorder (GAD) and depression.  Let’s say my primary care physicians have told me that since I was eight, which means it’s been 28 years of…

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Pets Suffer From PTSD, Too

It is almost July 4th, a day that lives in infamy for pets across America, and animal shelters and animal control agencies are gearing up to handle the holiday’s substantially higher rates of lost pets as a result. Be safe, pet owners, and make sure your doors and gates are securely locked before you leave for the festivities! Also, please give your cats and dogs a little extra TLC today!

Fireworks shouldn’t cause more than short-term anxiety and fear for most pets, but pets can also suffer from more severe mental health issues, including PTSD. Service dogs returning from tours of duty in Afghanistan show signs of combat-related PTSD, and domestic pets show “civilian” PTSD after natural disasters, abuse or abandonment. I first learned about pet PTSD when we adopted our own kitty. She had been severely abused and then abandoned before we got her.

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7 states now let SNAP recipients shop online; is yours one of them?

Oh, I love this! Online grocery shopping has been a lifesaver for me. It is, however, another one of those privileges of the middle class. Spoonies on food stamps deserve the right not to have to endure (even more) physical and mental pain just to feed themselves.

I still believe in the Golden Rule, even as our government continues to show itself to be heartless and morally bankrupt. Because of that, I feel it is all the more important to share things like this and to remind our leaders, “I’m middle class, I vote, and I care.” Yes, please, use my tax dollars to support things like online grocery shopping for SNAP recipients. I believe in making life better for others!

The Daily Disability

3676426738_934d0d5fc3_b Image: Flickr

For many Americans, going grocery shopping can sometimes feel anywhere between an inconvenience and a trip to hell. For Americans with disabilities and chronic health issues, going grocery shopping can feel like a huge inconvenience and a nearly impossible trip to hell.

Earlier this year, however, the USDA announced it was piloting a new program with seven food retailers to allow SNAP participants to shop for groceries online. This makes it a little easier for disabled folks who can’t be in for the long haul.

How it works? Just visit the website of the store in question (in the state in question, as locations matter) and enter your EBT (Electronic Benefit Transfer) card number. The program is set up to be as simple and secure as using SNAP in physical food retailers.

States involved in the initial pilot on Jan. 7, 2017, included Maryland, New Jersey, New York…

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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…”

I’m Officially Old!

I am reasonably tech savvy. I code for a living. I don’t always have the latest generation phone or cool gadget, because money doesn’t grow on trees, but I usually know how to use it. There are five computers, four tablets/e-readers, and two smartphones in our household of two people + one cat.

I’m reasonably tech savvy, but, apparently, I’m not at all social media savvy. I refuse to use Snapchat or Instagram, claiming the “I’m in my thirties and that’s too much work” privilege, but I thought I was doing this whole blog thing reasonably correctly.

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