Deadnaming

This week I came across a fantastic commercial from Starbucks related to this topic.  It shows a UK teen being called by his deadname repeatedly, until finally he’s asked for his name at Starbucks, and they write his affirmed name on his cup.


From Merriam-Webster:


For those of you that don’t know someone transgender, it may be hard for you to understand how impactful this small gesture can be.  But even if you don’t find it as moving as I did, I hope you will learn from it for your own future interactions.

The ad was created in partnership with a UK-based organization called Mermaids, which provides transgender youth services.  

I’ve linked the commercial below if you’d like to watch it.  

BTW, Starbucks is not the only coffee company speaking to the LGBTQ community.  If you liked that one (or even if you have pre-teens/teens that you are struggling to relate to!), you might enjoy this ad from Belgian coffee company Douwe Egberts, which is “nothing like a Folger’s commercial”.  

If you are heterosexual and you don’t have friends and family who are LGBTQ, it may be really hard to understand the importance of these moments.  But for those of us that are a part of this community, it is an amazing thing.  I have been out for more that 30 years, and I’m just starting to see ads that I relate to. I feel are speaking to me and the people I love.  It’s been a long time coming.  

Chelation Chronicles – 2H 2019

This blog post is focused on my chronic health issues, specifically, learning to detox heavy metals using the Andy Cutler Chelation (ACC) protocol.  You can read about how I found ACC and chose to pursue it in this post.   This is the fourth Chelation Chronicles post, where I am regularly documenting the ups and downs I’m experiencing as I undertake detox from lead and mercury poisoning; you can read the first and second and third chronicles posts, too, if you like.

August

13 August.   Well, I meant to write updates in July, but the time has just flown by. I’ve been busy enjoying real life, I guess.

I just finished my fourth round at max dose of 225 mg ALA and 25 mg DMSA. So, in principle I start the six month countdown for completing chelation. However, I know that the lead removal takes much longer (because lead stores in bone, so it comes out more slowly). That means I will probably be chelating at least one weekend a month for a long time to come. Still, it’s pretty exciting to have arrived at this point!

15 August. I had some back and forth with a few of the Facebook admins so I could decide how best to proceed with subsequent rounds. I wasn’t clear if I should maybe raise my dose to 300 mg ALA or stay at / around 225 mg for awhile first. The guidance seems to be that it’s more effective to stay at the lower dose and do longer rounds, first. I can always move the dose up later. Regarding the lead, it seems like most people wait around 3 years before raising past 25 mg DMSA – but that also depends how I’m feeling on round. I actually think my DMSA rounds are better, and that the ongoing presence of lead is playing a significant role in my healing process. So, raising that dose slightly may be my next step.

16 August. The boys (now DS10 and DS12) just passed the one year mark, so we sent their hair away for testing. We are not sure how best to proceed with DS12, as he is over 100 pounds and will likely need to chelate as an adult – quite a bit longer than his younger brother. He’s pretty discouraged as he was hoping to be back at max dose before school started up again. We’re hoping the hair test will give us a sense of how best to proceed. The guidance from the admins is that there is no simple answer – it’s very hard to draw any conclusions from repeat hair tests. So, deciding how to proceed has more to do with his symptoms than anything else.

21 August. One of the comments I received on my last post requested a general summary of where I was at the beginning of chelation versus how I’m doing now. I want to share a more detailed version of that here, too.

I will say that all these health interventions are intertwined for me. How much of my improved health is food and supplements versus chelation? It’s so hard to know for sure. I can say that my absolute lowest point in the past 8-10 years was when I was chelating improperly. I was taking 250 mg DMSA once a day three days a week (with a giant filling still in my mouth!), chlorella, glutathione … all the things that FMPs typically recommend. I ended up with full body aches, which I later learned was a debilitating resurgence of Lyme and co-infections that I didn’t know I had. I initiated the process of requesting short term disability from work. I really thought might life might be over. It was around that time that I found the Andy Cutler Chelation protocol. I have no idea how / where, but I bought the books and made my way to the Facebook community where, like many new joiners, I posted my first slightly hysterical post asking for help. 🙂

Things are loads better than they were eighteen months ago. My energy (while not where I’d like it to be) has improved a ton – I am tired and wanting to do more, but not perpetually exhausted and miserable like I used to be. The full body aches are gone (due to chelation or LDN or a combination of the two, I’m not sure). Sleep is really deep and good except for few days during my menstrual cycle – even on round I sleep hard between doses. My hair and nails are growing, brain fog is gone, my general outlook on life is way more positive. My anxiety seems to have subsided almost completely – I’m only taking a tiny bit of GABA compared to before. I have been able to successfully reintroduce a bunch of foods, which has been fantastic.

I am still struggling with general fatigue. I am able to go for 30-45 minute walks multiple days in a row, and I even did a four-mile hike when I was in California in early August. But I don’t have enough energy or desire to exercise consistently, and I’m taking a ton of ACE (8 Thorne pills 4-5 times a day). I have not been able to lose weight – though I am not gaining anymore, thankfully. I still have some blood sugar dysregulation. I can’t skip a meal even when I’m not hungry, because I’ll end up crashing and needing a nap or triggering a histamine episode later. I do still struggle with histamine intolerance. I can have something histamine inducing / liberating foods occasionally, but I end up in a flare if I have coffee every day, for example. Although I’ve introduced some new foods, I have some lingering food sensitivities. I just got thyroid labs last week so waiting to see about that, and will post here when I receive the results.

My second hair test (at one year) showed mercury down from .56 to .21, but lead hasn’t moved and silver is at the top of the red. So, I may be making good progress with mercury but I’m clearly dealing with other metals too. Lead in particular may take years to resolve. It’s tempting to get another hair test to see if the silver had dropped at all … but trying to be patient and focus on the long haul.

Still working a reduced schedule (four days, 40-45 hours a week), and that seems to be helping a lot. I am starting to re-engage in old hobbies, and dream about being able to travel again.

19 August. I just got my labwork back, and for the first time since Hashis diagnosis in 2015 all antibodies are below the range. I made some small adjustments in when I’m taking my T3, and feeling pretty darn good energy-wise. Some fatigue that I thought was adrenals was in fact thyroid-related. My labs shows that liver and kidney are still functioning well, and A1C (long term view of blood sugar levels) looks good. So, I am just settling in for the long haul knowing I have multiple metals in play, and that my family members still have a long way to go, too. Still, I’m thrilled with the progress, and doing my part to spread the word on ACC to all who will listen.

September

29 September.   I am just finishing up my fifth round of 300 mg ALA, so the six month countdown for mercury has officially started. A few weeks ago I raised my DMSA dose from 25 mg to 37 mg, and I had a super positive and euphoric weekend. I joked that it felt like my cells were singing me a thank you song for getting the lead out! I am going to continue DMSA every other week now, though I noticed it did flare yeast a little bit initially. I’m back to regular Grapefruit Seed Extract (GSE) and Caprylic Acid capsules and that seems to be keeping things in check.

I ordered 50 mg DMSA from Living Supplements, so in early November (after four rounds at 37 mg DMSA), I will raise it to 50 mg. I will probably be at that dose for a long time – potentially years. BUT, I’ll be on an every other week schedule, which will hopefully give my body time to rest and recover. I might even try some longer rounds (one week on, one week off) at some point.

I haven’t written much, but things have been up and down a lot this month. The rounds where I’m taking DMSA definitely feel better, more positive. I had a big wake-up call about cane sugar (a major allergen for me) a month or so ago, and since I realized it was in a bunch of other things I was eating, I have been doing better. And then something knocked me sideways again – not sure if coffee, (super clean) almond milk, or some combination of both. After a bad couple of weeks I am just starting to feel better now, and I really hope it stays that way for awhile.

I have a lot going on at work and at home at the moment – Q4 is typically our busiest time of year at work. I signed up for another Metalsmithing class and I have set up a little workspace in the garage where I have been practicing. For my birthday I requested a Precious Metal Recovery System (PMRS) which will vacuum particles into a container so I don’t risk exposing myself to heavy metals. I’ve also been playing a lot more Destiny 2 with DS12 and my spouse and our clan. It’s really fun – life is so full! But my blog and other aspects of my life are not getting as much attention as they used to. A worthwhile trade-off, I think. 🙂

October

11 October. Overall it’s been an uneventful few weeks. I have some days where my energy is worse than others, or where I’m struggling with inflammation. I did my third round of 37 mg DMSA last week, and it was another super positive weekend. I’m convinced my cells are singing with joy when I’m on a lead-focused round.

I am still getting acupuncture episodically, but the main benefit seems to be relaxation. The Chinese herbs I’ve been getting, on the other hand, seem to help both with energy and detox. I notice that I am more likely to have a histamine flare if I haven’t had them for a few days.

I am on round now (ALA only), and next week will be my last week of DMSA at this dose. I ordered the 50 mg DMSA pills and I am both excited and nervous to try them … though it may have to wait a few extra weeks because of work and personal travel at the end of October.

I’m also turning 50 later this month, and I have mixed feelings about it. I don’t mind getting older, but I do regret the amount of time I’ve lost dealing with health-related issues. I don’t really want to do much to celebrate, because I’m really hoping that in a year from now I’ll be in a completely different place.

November

6 November.   I am just wrapping up two full weeks off from chelation. The break was really for my DS12, who we are moving into the higher (adult) doses. He has been really tired and it was clear he needed a break before we raised his dose again.

During the break, I also updated the kids’ chelation journals. DS10 is at max dose, and he will be done in January – just three months to go! DS12 is at 100 mg. We’ll go up to 150 mg this weekend, and, if all goes well, up to 200 mg four weeks after that. That would have him finish in June, which would give him a full summer of rest and recovery.

It has been a busy few weeks for me, lots of travel, working at a conference, a lot going on personally with my family, and major deadlines at work. But the break has still been really positive. Sleeping through the weekend has been wonderful! I’ve been able to drop the amount of ACE I’m taking by 25%, without being tired. I have also noticed that a lot of my blood sugar dysregulation issues just aren’t there – I can be a few hours late for a meal and not fall apart.

On the other hand (and unrelated to the chelation break, I believe), it appears I have a resurgence of Lyme symptoms. The main thing I’ve noticed is weird body aches in multiple locations. My left hip and my right arm are really painful (worse in the morning). It’s prompted me to revisit a few of my Lyme books in an effort to learn more. But it has also been really discouraging. I keep thinking that at some point I’ll be done with chelation and then TA-DA! I’ll feel great again. But I think the reality is much more complicated. Hopefully I won’t be as unwell, but it’s not clear I’ll be back to how I felt in my twenties, either. I don’t really want to spend years treating Lyme after years of chelating … but I suppose it’s a very real possibility. I had a few really down-in-the-dumps days thinking about that.

And, for those of you that haven’t read all my posts, I can tell you that yes, I definitively have Lyme and two nasty co-infections. I know because I’ve had a DNA test.

Anyways, we’re all back to chelating this weekend, and I’m going up to 50 mg DMSA for the lead. I’m over max dose for ALA, too, at 300 mg. I am hoping that will continue to help me heal in the long run …

11 November. Just wrapping up my weekend round today. It was really hard to get back to chelating after the break. I’m not sure if it’s the sleep deprivation, the increase in my DMSA dose, or both – but this round kicked my butt. I took a nap in the middle of the day yesterday (which I haven’t done in ages), and I’m feeling really tired and sluggish today. I know it will get easier as the rounds progress. It’s not a bad reminder that chelation is hard, and that lead is a major factor for me. But, it’s still tough to put one foot in front of the other on days like today …

December

30 December.   The last months of the year were really wild and wooly at work, so I haven’t had time to write and reflect much. It has been a really challenging period health-wise, and I wish I could put my finger exactly on why that’s the case.

I would say things were at their best this year in August. My energy was good, my weight had stabilized. I reached max dose of ALA and then went up to 300 mg ALA. I was feeling really good and positive – and I was (of course) hopeful that things would continue to improve. In reflecting on what has changed since then, there are two notable things:

  • The first is that I have been pushing really hard to raise my DMSA dose. I have been doing combo rounds (ALA+DMSA) every other week, and I raised from 25 mg to 37 mg to 50 mg after four rounds at each dose. I felt good and even had some days with euphoria, but didn’t have any major redistribution.
  • The second change has been introducing new foods, at my doctor’s recommendation. I’ve successfully introduced bell peppers (yum!), and I can occasionally (e.g. once a week) have tomato sauce. That has been a pleasure after being on strict AIP since 2014 (five years!). At some point I developed a sensitivity to almonds – no surprise since I was eating them everyday. Instead, I re-introduced nuts including pistachios, cashews, and macadamia nuts. That in turn enabled me to buy an Almond Cow and make my own nut milk. I have made a modified version of golden milk with just tumeric, ginger, and honey. But even if I just put a little honey or maple syrup in it, it’s been nice to have the option of a warm beverage, since coffee seems to still be a histamine trigger.

However, I think the cumulative effect of these changes has been pretty significant:

  • What I didn’t count on is the delayed reaction to chelating lead. Because it comes out of the bones (rather than fatty tissue like mercury), I wasn’t noticing much with DMSA rounds. But in the past few months I have had lighter stool in a way that I haven’t seen since I started chelating.
  • I have also been dealing with acne – I guess because DIM isn’t enough to help with estrogen detox, and perimenopause is exacerbating my hormone issues.
  • I have also become super sensitive to histamine again, which has been discouraging – I can’t even have 4-6 chocolate chips without a flare.
  • I think the nuts may also be a factor. I am trying to rotate them and eat a different kind every day, but either the lecithins (which are inflammatory) or the natural fat content is causing me to be inflamed as well. I don’t want to stop the nuts completely because they’re such a great snack … but I may have to until things settle down.

In the meantime, I made the decision to drop back to 25 mg DMSA for awhile. I honestly can’t tell if it’s helping or not, but I am going to do it for a couple of months just in case. It’s still progress, and with the lead I’ll be at it for years, so I have to keep reminding myself there is no rush …

In the Fall (October, November) my spouse and I both had weird health issues around the full moon. I suspect that the recurrentis coinfection from Lyme may be a factor as well. But, as I’ve said before, I’m going to make sure I’m stable while chelating before I really start to think seriously about how to address any of those concerns. I just can’t cope with much more complexity at this point.

31 December.   I wish had something more profound to say as the year draws to a close. In retrospect it’s been a bit of a rollercoaster. On the positive front, I finished a full year of chelating with just a couple of short breaks, and I reached my max dose of 300 mg ALA (in August). I also finally admitted how sick and tired I am, and I committed to better self care by moving to part time status at work. My Hashimoto’s is technically in remission – antibodies were never much past 40, but they are now 25, which is are below the range for a diagnosis. And my thyroid is still producing T4, though not as much as it should. T3 keeps me afloat. Overall, while I don’t feel as well as I would like, I am finding time for hobbies again. We didn’t send any holiday cards last year, and this year I made them all by hand. I also made some handmade presents using my new metalsmithing workspace and/or my new vinyl cutter. On the downside, I weathered the loss of my father. I also made some great progress … and then felt it slipping through my fingers. Tackling the lead will be it’s own set of challenges, and I’m trying to find the strength and stamina to be patient through that process. In looking at this paragraph, the good generally outweighs the bad … it just doesn’t feel like it at the moment.

The most exciting thing at the moment is to see the kids nearing completion. DS10 has just two rounds to go, and DS12 is at his max dose of 200 mg. We’re starting to count his remaining time … just 25 weeks to go. I think it will be a lot easier to continue chelation when we don’t have to get out of bed for the kids. Rolling over and taking a pill is a heck of a lot easier than getting out of bed and getting pills into two sleeping kids!

Given how much I’ve struggled with the lead chelation it’s hard to know when I’ll actually be able to stop chelating. Technically I have nine weeks of chelation left for the mercury, but I will probably continue as I’m doing now until DS12 is done. I could drop to every other weekend after that, or maybe take a good long break (the summer off?!) before resuming with DMSA every other week. The idea of getting to sleep on the weekends is definitely something to look forward to.

I hope you’ve enjoyed this post (and the related series). I look forward to sharing my progress with you again over the course of 2020. Hopefully in 2021 I can write about other things!

They / Them

This is cross-posted from the ZS intranet (which we call ZSpace), where I write episodically about issues of interest to the LGBTQ+ community and our allies. It’s been lightly edited for an external audience.

The Merriam-Webster dictionary recently announced that their word of the year is THEY.  You can read their article on the topic here – Word of the Year 2019 | They | Merriam-Webster .  Here is a brief excerpt:

Although our lookups are often driven by events in the news, the dictionary is also a primary resource for information about language itself, and the shifting use of they has been the subject of increasing study and commentary in recent years. Lookups for they increased by 313% in 2019 over the previous year. … More recently, though, they has also been used to refer to one person whose gender identity is nonbinary, a sense that is increasingly common in published, edited text, as well as social media and in daily personal interactions between English speakers. 

The article goes on to describe some of the ways that the term ‘they’ has gained prominence in the news – it’s definitely worth a read.  If you aren’t familiar with the dictionary and their Twitter presence, they are worth a follow … though I would caution that their posts are not apolitical, and they lean pretty far to the left!

However, the topic of gender neutral pronouns is not something just for the left-leaning; it is increasingly present in broader U.S. society:

The population of young people who identify as gender-nonbinary is growing. Though no large surveys have been done of kids younger than 10, a recent study by the Williams Institute at the University of California, Los Angeles, found that 27% of California teens identify as gender-nonconforming. And a 2018 Pew study found 35% of Gen Z-ers (born 1995 to 2015) say they personally know someone who uses gender-neutral pronouns like they and them, compared with just 16% of Gen X-ers (born 1965 to 1980). The patterns are projected to continue with Generation Alpha, born in 2010 and later.

You can read the full article on the Time magazine website. 

Pronouns are something we’ve talked about on ZSpace, and we’ve talked about them quite a bit in our Evanston and Chicago Pride meetings as well.  We are organizing a local workshop in January to teach people about pronouns, followed by asking people to put their pronouns in their signature files.  My hope is that we will raise awareness with all ZSers.  Imagine a future like this:

Really, it’s about creating a culture where asking people about their pronouns is just a normal, natural part of introductions. Like this:

“Hello, new person that I’m meeting at a cocktail party. I’m Jacob.”

“Nice to meet you. I’m Andre. What pronouns do you use Jacob?”

“I use they. What about you?”

“I use he, thanks for asking. Anyway, um, some weather we’re having today, huh?”

Asking about pronouns will not solve your social awkwardness issues, but it will definitely make you a nicer, more empathetic human being.

You can read the full article this was excerpted from here –  Gender Neutral Pronouns: How to Use the Right Pronouns.  It’s a testament to our changing times that this is now Time magazine material.  You can learn more about appropriate pronoun use from CNN, as well – International Pronouns Day: A guide to personal pronouns.

But hair care companies (see my earlier ZSpace post about challenges for the LGBTQ community over the holidays, along with a link to the new Pantene ad), talented pop stars, and Time magazine aren’t the only ones thinking about gender-neutrality.  Even industry giants like Mattel and Marvel are thinking about how to appeal to a growing number of young people who want to live in a world where their self-understanding is reflected in the world around them.

Mattel has released “the world’s first gender-neutral doll”:

The doll can be a boy, a girl, neither or both, and Mattel, which calls this the world’s first gender-neutral doll, is hoping its launch on Sept. 25 redefines who gets to play with a toy traditionally deemed taboo for half the world’s kids. Carefully manicured features betray no obvious gender: the lips are not too full, the eyelashes not too long and fluttery, the jaw not too wide. There are no Barbie-like breasts or broad, Ken-like shoulders. Each doll in the Creatable World series looks like a slender 7-year-old with short hair, but each comes with a wig of long, lustrous locks and a wardrobe befitting any fashion-conscious kid: hoodies, sneakers, graphic T-shirts in soothing greens and yellows, along with tutus and camo pants.

If you’re interested in reading more you can find the full article here – Why Mattel Is Releasing the First Gender-Neutral Doll.

And, Marvel (in addition to featuring LGB characters in it’s comics and upcoming movies) now has a transgender hero in their comics as well – https://www.advocate.com/transgender/2019/12/06/meet-marvels-first-transgender-hero-12-year-old-mighty-rebekah.  The article is an interview with twelve year old activist Rebekah, who is featured in Season 1 of Marvel’s Hero Project.  The show is behind the new Disney+ paywall, but you can read or listen to the comic online – Marvel’s Hero Project Season 1 (2019).  While Rebekah was born a boy, she identifies as female (she / her / hers) – not non-binary – but it’s nonetheless an inspiring story of family love and support.  

If you’ve read all the way to the end of this long-ish post, thanks.  If you want to know what else you can do to help, you can always start small; consider changing your email signature file.  You can learn why that’s so important in this Medium article. Here is what mine looks like:

Finally, we will making our local Pronouns workshop available via a global webinar in 2020.  As pre-read for our local workshop, we’ll be distributing A Quick & Easy Guide to They / Them Pronouns, which we’ve purchased in bulk from their publisher.  Maybe you’ll find that to be a good way to learn as well.  

If you have other relevant reading and resources, I’d love to hear from you in the comments!

AI and User Experience: As Always, the User Comes First

This article was originally posted on ZS’ blog The Active Ingredient.

This blog post is the sixth in a series on the impact that AI will have on different business aspects of pharma.

While most of us are aware of the importance of user experience, UX goes beyond simply developing a relevant and usable interface for software. UX is a discipline that requires a thorough understanding of users’ needs and the context in which they use technology. Whatever solution you may roll out to users, good UX is about meeting those needs.

With the proliferation of AI-driven solutions and proofs of concept, it’s easy to focus on the data science and forget that what you’re developing eventually needs to serve a person on the job. Within pharma companies, the finished product is often the visualization of complex data that appears in software on a laptop or mobile device. However, if users can’t understand these insights or the insights aren’t valuable to them, then the data science was a wasted effort. That’s where UX comes in. More specifically, that’s why UX should have come in a long time ago.

To better understand the role of UX in developing AI solutions, I spoke with ZS Principal Natalie Hanson, leader of our UX practice, whose team has helped develop multiple AI-driven solutions for clients.

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Closing Keynote: Amplify. Not Optimize.

Dave Malouf
Design Consultant, Coach, Educator

From the DesignOps Summit website:

We currently describe, frame, and promote Design Operations as being all about efficiency. While we might not ever say the term “ROI” out loud, we certainly sell DesignOps as means for optimizing our organizations’ investments in their design and research teams and infrastructure.

But if DesignOps is going to truly be the game-changer it can and should be, we need a better framing. We need a new framework, one that emphasizes the topline—the creation of value—over bottomline fixation on resource optimization. We need a framework that accounts for supporting the projects, people, and practice of design over the groupings of pixels and management of components. This new framing is at the root of DesignOps framework that Dave Malouf will share in his closing keynote.

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