Author: Vangtime (Page 4 of 5)

So. The next step was to meet with a bunch of doctors and other providers. But it seemed like a long time. And it was, really. Diagnosis was on Wednesday, March 25. My day-long appointment with my medical team wouldn’t be until April 2 – a week and a day. Jesus.

Every day started to seem surreal. I have this very serious disease but I feel physically fine and normal. Also there’s this PANDEMIC going on. People are dying right and left. We’re working from home and can only leave the house for essential purposes.

I haven’t left the house except to go on a couple of bike rides and walks, and for medical appointments, since March 20.

A friend of ours has been posting these wonderful watercolor tutorials on Facebook for quarantine entertainment. I had mentioned to The Mighty Sam that I thought it looked fun.

On either March 31 or April 1, The Mighty Sam presented me with a watercolor set!

So I started messing around with it right away.

Of course I did tried a little cat and a seagull right away. My next attempt was a seagull.

I am not very good at holding images in my head. I can imagine stuff vividly but my ability to translate what’s in my brain to something on the page is spotty. So I looked at pictures of seagulls and scallop shells to do this.

Watercolors are very weird to work with. Because they’re transparent and smeary, they end up doing a lot of cool effects just on their own, which is really fun. On the other hand, since they are so watery and smeary they are not very forgiving. So you have to sort of plan things out in advance, and then work fast!

The Mighty Sam suggested I paint Agador when he was looking really mad that time he was fixin’ to jump on my lap but saw that Aloysius was already there:

View this post on Instagram

Agador's face when he saw that Aloysius was already on my lap.

A post shared by Kimberly Hamm (@vangtime57) on Sep 16, 2019 at 9:42pm PDT

So I tried that. Obviously the result is very watercolor-y, but I think it captures the essence of his kitten anger.

I showed all these to my SIL, who requested that I do Frank Zappa. I’ve never been good at drawing people so I kind of balked a little. Well, I don’t really think I’ve ever been good at drawing ANYTHING, except maybe a few stylized animals that I practice and practice and practice on.

Then I looked at some pictures of Frank Zappa and he has really good, strong features and is mostly nose and hair, so I thought I would give it a try.

I had been going to make the background all magenta and hot pink, but I did the hair first and so I decided against it. My SIL said that this is recognizably Frank, so I’m happy about it.

I am now working on a picture of an octopus.

+++++++++++

Another thing I’m going to start on now is sewing some cloth face masks. The Mighty Sam bought me a a sewing machine and some supplies. Everyone is supposed to wear face masks now and I think this is going to continue even after things start opening up. And it’s really hard to buy things like that now, what with people stockpiling and hoarding everything.

Elastic was impossible to find, though, so I’m going to start with just fabric ties. I also couldn’t find any good thread, but I did find a little sewing kit that has a bunch of tiny spools in it. As long as they’ll sit on the sewing machine spindle they should be fine.

The biopsy was on Monday afternoon. The nurse called with the pathology results on Wednesday, March 25, at about 1:00 pm. The lymph node was clear. Both tiny masses were found to be invasive ductal carcinoma, abbreviated as IDC. This is a cancer that starts in a milk duct and then gets outside of it. The biggest one is 1.5 cm. IDC is about 75% of all breast cancers and, she told me, they have tons of experience treating it.

She told me that there was additional testing for hormone receptor sites, that would take another few days. But those results would give us more information about what kind of treatment to do.

The next step would be to go to the Multidisciplinary Breast Clinic at the central hospital. I would meet with the surgeon first, and then meet with a bunch of other specialists throughout the day. Because of COVID-19, I would only meet on-site with the general surgeon. The rest of the appointments would be by phone.

They hold the Multidisciplinary Clinic appointments every Thursday. The Mighty Sam asked me if it was more often before COVID-19, but I haven’t remembered to ask. It sounded to me like it was just every Thursday. My appointment would be Thursday, April 2. So I had a week to wait.

Ellen the nurse told me I would be getting a call from a Nurse Navigator who would help me, well, navigate the process. She also told me that I should watch a video on the clinic’s web site about surgery options.

So, that was pretty fucked up. First mammogram. Cancer. I don’t know if it would have helped if the radiologist had told me that it looked like cancer right away.

The Mighty Sam was here when I got the call of course – we were both working from home. He got the gist of the conversation from my side of it, and I gave him a summary. I called my mom and let her know. I took the rest of the day off – I called my boss since obviously this was going to impact my work significantly for quite a while. I can’t remember who else I told. I asked my mom to tell the rest of the fam so I wouldn’t have to. I let Vic and Christi know. My sister called me later.

The Mighty Sam and i watched the breast surgery video. That was probably the only time I did real crying, at least so far. But I also felt like I had a huge cry building up from the whole COVID-19 pandemic. I think it was a combination of both.

I also got a call from a scheduler, who gave me the rundown of everyone I would meet on the 2nd. The initial schedule was as follows:

• General Surgeon
• Social Worker
• Radiation Oncologist
• Medical Oncologist
• Nurse Navigator
• Plastic Surgeon

Later they would add a genetic counselor to the schedule and the order would get switched around a little.

The next day I got a call from Lizzy, the nurse navigator. She introduced herself and her role. That does seem really nice, that they have someone like that just to help you through it.

I had a couple of questions. First, I wanted to know how soon the surgery would be. She said they usually do it within 3 weeks of the initial appointment. However, with COVID-19 things are up in the air.

My other question was about working from home. I really do not want to get sick when I am getting ready to have cancer treatment. I asked if they would be able to recommend working from home and she said they could give me a doctor’s letter to that effect if I need one. She told me that I am not high-risk per se, but that it’s definitely best for me not to get sick. This was when she let me know about the genetic counselor. She thought it was a good idea to do a consult since I am so young (relatively speaking) and because I have an aunt who had breast cancer.

Then, on the Friday of that week, March 27, the nurse called me again with results from the hormone receptor testing. She said the results very good and she wanted to let me know right away: I had positive results for both estrogen receptors and progesterone receptors. This is very good because it means I’m eligible for hormone therapy. I also tested negative for a protein called Her-2-Neu, which is also a good thing.

The next day I woke up with a terrible migraine. I threw up several times and spent all morning and most of the afternoon in bed, writhing in pain. But that’s par for the course after a stressful week, and that week was pretty fucking stressful.

I wasn’t worried about the actual biopsy procedure. I didn’t tell very many people that I was having it – just Sam and my mom, and a few friends. of course at that time I was still hoping it would turn out to be nothing. First mammogram and everything. But also concerned, because two masses and a lymph node.

The Mighty Sam drove me to this appointment. I could have driven myself but it was nice to have the moral support. He did wait in the car though, because they didn’t tell me I could take someone with me.

It was the same drill – stopped at the door to make sure I don’t have any COVID-19 symptoms, then up to the breast imaging center.

You’re supposed to wear comfortable clothes and a sports bra. I stripped them off and put on a hospital gown, ties in front. The people working on me were the ultrasound tech, the doctor, and a PA.

This was an ultrasound-guided core needle biopsy. So they use the ultrasound to see exactly where the mass is, and then they put in a needle tube, and then put the biopsy needle through the tube to grab the tissue sample. Simple.

First they gave me lidocaine shots. I told them that I need extra shots at the dentist and that I burn through it fast. They said they would give me extra. I barely felt the shots and they worked pretty well. It was mostly not uncomfortable at all, except for one twinge when they did the lymph node. The biopsy needle makes a funny sound when it’s deployed, kind of like a cap gun without caps in it.

The same needle tube could be used for the two breast biopsies. When those were done the PA put on direct pressure and then bandaged me up with Steri-Strips and a clear dressing. The lymph node was similar. I didn’t watch any of it.

They also put little titanium clips on each mass during the procedure. After it was done I had to go get a “gentle mammogram” which is where they look to make sure the clips got put on correctly. After that I was totally done and could change back into my clothes. They said results would be back in 3 to 5 business days and someone would call me.

It took a little bit longer than I had expected. The Mighty Sam was very patient!

Post-procedure instructions: Keep the sports bra on for a full 24 hours, even in bed. It’s ok to take the dressings off that night but can leave them on until the next day if they’re not causing skin irritation. Leave the Steri-strips on until they fall off. No lifting things over 5 pounds for 24-48 hours. Take tylenol for pain. It’s ok to take a shower after 24 hours.

I did take Tylenol but I probably would have been able to manage without it. It was sore for the first couple of days, and then just felt like a big healing bruise.

This is the story of how this blog, which was supposed to be about my ADHD diagnosis and treatment, turned into a blog about having breast cancer in the middle of a wordwide pandemic.

It never rains but it pours, right?

I got diagnosed with invasive ductal carcinoma in my right breast on March 23, after a couple of mammograms and a biopsy. I am SO irritated that this diagnosis means I have to say the word BREAST all the time.

I turned 50 last fall, and my HMO kept pestering me to get a mammogram. Fall was really busy and hectic for some reason. Maybe because at the time I had untreated ADHD and had trouble getting even the basics done, and something like a routine screening seemed less important than just running as fast as I could to stay in the same place. I also had that knee injury which was messing with my exercise, which of course didn’t help my self-management. And it was winter, which makes everything more sucky. I did manage to send off a colon stool screening sample, which fortunately came back negative.

I called to schedule the mammogram in January and got it set on February 24. I was a little apprehensive about it – I’ve always heard stories about it being super squishy and super uncomfortable, but it wasn’t bad at all. The tech told me that if the mammogram came back clear I would just get a letter in the mail in about 10 days, but if they found anything or wanted a second look I would get a call within 2 days. She also told me that it is not unusual for first-time mammograms to get called back for a second look, especially for someone with “dense breast tissue” like I have, so I shouldn’t worry if I get a call instead of a letter.

I did get a call and I think it was the very next day. They told me to come back in for a second mammogram and an ultrasound on the right breast only. I told myself it was no big deal, because of what the tech said, and also that there is no BC in my mom’s family and only one case in my dad’s. But I also thought that it seemed weird that they only wanted a second look on the right side. If it was just dense breast tissue and first-time mammogram, wouldn’t they want to look at both?

Here’s a thing I do to cope when I’m waiting for what might be good or bad news: I tell myself to assume that it’s going to be the good-news outcome, because even if it turns out to be the bad news, then I would at least have had a week (or however long it was) without that worry.

I wasn’t able to find a time that worked for my work schedule AND the breast imaging center until March 19, so I made that appointment. Part of the reason that followup took so long was because the Capitol Hill breast imaging center was having new equipment installed so it would be closed for a while, and I had to go to Bellevue.

At this point it’s the last week in February and we haven’t realized how bad COVID-19 was going to get. We still only had one confirmed case in Washington and that guy was getting better. The news about the Kirkland nursing facility would hit the next weekend.

I had planned to take the 19th off for our first-time-ever cleaning service, along with a follow-up appointment with the psychologist who diagnosed me with ADHD to talk about the autism spectrum. The cleaners and the psych appointment were in the morning. The mammogram and ultrasound were scheduled for 2:45 in the afternoon.

It was a weird day. By that time The Mighty Sam and i were both mostly working from home, though I was still going in a couple times per week. So we were home when the cleaners were here. My psych appointment went pretty well though no conclusions were reached, and because of COVID-19 I decided I would follow up with it after it was over. It was super uncomfortable to be in the house with the cleaners, especially because we only have one bathroom and one of them was in it for quite a while, although they did do a fantastic job, and I’m so glad that we at least had ONE cleaning service before the stay-at-home orders became too stringent.

I went to the Bellevue clinic. That was the first time I got stopped at the entrance by screeners who asked if I had a temperature or coughing or other COVID-19 symptoms. I didn’t. I’ve been taking my temperature every day since the beginning of March.

The mammogram was pretty much the same as before, except just on the right side. The ultrasound took a very long time. They looked at both the breast and the lymph nodes on that side.

At the end I got dressed and met with the radiologist. She told me that there were two very small masses, plus a slightly swollen lymph node. She said she wanted biopsies of all three and I would be able to schedule it there, ASAP. She said she was not worried about the lymph node but was concerned about the two masses.

Now I think that they probably knew the two tiny masses were cancer already, based on the shape. I kind of wish they had told me that then, but maybe they aren’t supposed to unduly worry patients before they know for sure. After talking with the radiologist, I met with a case manager person named Amy who talked to me about what the biopsy would entail and also scheduled the appointment. I got a little brochure: “Your Guide to Ultrasound-Guided Core Needle Biopsy.” It didn’t sound too bad, certainly no worse than a nasty dental procedure.

The 19th was a Thursday. My appointment was the following Monday, the 23rd. I physically went in to work on the 20th and I think that is the last day I worked at work instead of at home.

Again, I started this blog to talk about ADHD but I’m finding I have so much on my mind that is not ADHD, particularly things related to the shitshow the United States finds itself in these days.

And I guess in a way this is related to ADHD. If you have ADHD, you can’t just be all happy-go-lucky and do things on instinct or whim. You have to plan things out. You have to break things down into tiny, manageable steps. You have to summon the will to do them. And – really importantly – you need to figure out what you need help with, and the figure out how to get people to help you. You can’t just say an idea or describe what you want the end result to be and then magically do it.

And so in politics you have to be able to do the same thing. I think this is why I find Bernie Sanders so troubling as a candidate. He reminds me of me having a great idea, but then trying to start it, and realizing I have no idea what I’m doing, and that I am going to need help doing it. He is like a person with untreated and undiagnosed ADHD thinking he can do a group project all by himself. On the other hand, Elizabeth Warren and her plans appeal strongly to me – she actually has the step by step processes thought out, and she is so good at getting buy-in from others.

Obviously the way the federal government is handling COVID-19 is a mess.

I saw somewhere that Korea had developed a 7-minute test, which is freaking amazing. And they were ready to start mass-producing those tests.

My thought is that we just need to do mass testing. Maybe do it in conjunction with the census. If we were able to figure out who has COVID-19 and who doesn’t, we actually WOULD be able to get through this in a matter of months. Because everyone who has it can then isolate, those without it but who has been in contact with someone who tested positive can quarantine for two weeks.

But I want to think about more long term policy issues. I am appalled at how the current administration has just refused to adhere to what had been norms – releasing tax returns, for example. Or the way McConnell is just sitting on bills in the Senate without voting on them. Or how he blocked President Obama’s last Supreme Court nomination.

Those norms need to be legislated into laws. It needs to be a law that presidential candidates release their tax returns going back X number of years. If the candidate does not release them, they are disqualified from being president, period. Disqualified, the same as if they were under 35 or not a citizen. There also needs to be a law that the President, or anyone who holds elective office, can’t own any stocks or companies or any property that can cause a conflict of interest. I think a blind trust doesn’t go far enough.

I was thinking the other day about limiting the amount of wealth that people who hold political office can have. I thought they should be able to own one residence, worth the median home price in their jurisdiction or district, plus a certain amount of money that could only be in T-bills or other non-controversial investments, an amount that would be enough to buy an annuity that would pay them 3 times the amount of a mortgage on their median-priced home., and that they would have to GIVE THE REST OF THEIR MONEY AWAY. Either to a charity or to the US Treasury. Don’t like it? You can’t run for office.

Campaign finance reform. This really needs to be a thing. Campaigns need to be publicly funded and there needs to be caps on how much you can spend.

There needs to be a law that once one house of Congress has passed a bill, the other body MUST act on it within a certain period of time. This needs to be enforced by holding the body’s leader in contempt and putting them in jail. Then the body will need to elect a backup leader and that person will need to immediately bring the legislation to that body, or else they will go to jail too. I mean – there needs to be serious consequences for this. Maybe that person holding back the legislation should just be removed from office instead of being put in jail.

Taxation. Ok, trickle down economics DOES NOT WORK. What works is taxing corporations and capital gains at VERY high rates. What this does is it encourages businesses to invest their earnings into the business rather than squirrel it away in offshore numbered accounts. That leads to more productivity, cheaper products, and higher wages! And higher wages result in more people buying more stuff! and that stimulates the economy!

And here’s another thing: Labor. All the stuff that labor unions negotiate into their contracts to protect the workers should be made into law, so that we wouldn’t NEED labor unions.

Last thing for today: All employers should be required to publicly disclose the salaries of all their employees. This would go a LONG way to reduce the pay disparity between white men and everyone else. This whole stupid custom about people keeping their wages and salaries secret just helps employers undercut the salaries of people who don’t know any better, because EVERYONE’S SALARY IS A BIG SECRET.

I don’t really want to write about the COVID-19 pandemic. I started this blog to reflect about my ADHD diagnosis and treatment. I find it extremely irritating that now, just as I’m starting to understand my whole entire life, and that I have the opportunity to get better, the world is now in the midst of the worst pandemic since the 1918 flu. REALLY? Is this how it’s going to be?

I’m worried about the impact on ordinary people. I’m worried that people I love might get sick and die. I’m worried that I might get sick and die. Or get sick, and recover, but then have severe lung damage.

I am angry at the Trump administration and everyone who voted for Trump. I’m pissed off about that lame speech he gave the other day – travel bans from Europe (really? when the disease is already here???), loans from the Small Business Administration (LOANS? NO. they need to be GRANTS), and payroll tax relief (which does nothing to address lack of sick leave, understaffing, and people in the gig economy). I’m pissed off about the dismantling of the pandemic response team. I’m pissed off about cuts to the CDC. I’m pissed off about the lack of testing. I’m pissed off about the fact that I’m not hearing anything about epidemiologists on the ground figuring out who has it and who doesn’t.

WE MUST FIND OUT WHO HAS IT.

I bought myself a bicycle on Thursday. The weather has thanked me by being cold and rainy and windy. This is also pissing me off.

In better news, my right knee seems to be responding to physical therapy. I don’t know that I’ll ever be able to jog again the way I used to, but now that I have a bike I am willing to work on switching to that. If I can start commuting by bike, that will also have the benefit of combining my commute time with my exercise time. It will also be nice to have the mental health benefits of regular cardio exercise again. I haven’t been able to exercise regularly since like October.

We got a new battery for our digital thermometer. I’ve been taking my temperature often and so far I have been normal. Of the two of us, I’m definitely much more at risk since I work downtown and have been commuting by bus. I have been really careful about not touching things and washing my hands, and keeping my distance from people since the first of March, which is when the Kirkland nursing home news broke. The only time that I’ve been in close proximity to other people for an extended period of time has been on buses. And even my regular bus has really thinned out with regard to riders.

Ever since Trump got elected in 2016, I’ve been suffering from an additional level of political anxiety on top of my regular anxiety. That if something really bad happens this administration is not going to be able to handle it. And sure enough, that shit has become real with COVID-19. This so so bad, and so stupid.

I’m cleaning up. One of the things that is super hard to do when you have ADHD is get things clean and organized. Another thing that’s hard to do is keep them clean and organized. Adderall seems to help this quite a bit. There seems to be a little boost between wanting a thing to be done, and getting it done. There also seems to be a little push to doing things to completion rather than half-assing things.

My office room is actually starting to look better. I’ve gotten all my old trial files mostly organized. I still haven’t settled on a storage method for them, but at least they are now organized into individual trials and in two file boxes, which is a start. (Why are you saving them at all? partly nostalgia, partly because I want to refer to them when I think about legal things.) You can see the floor in most of the room.

I probably don’t realize the extent that Adderall is helping me deal with my COVID-19 anxiety.

One of the things I’m cleaning up is random pieces of paper. One of these random pieces of paper is jotted on the back of a Cat-A-Day calendar page. It is titled “Lies Anxiety Tells Me.” This was inspired by something I read or heard somewhere: your anxiety is lying to you.

So I wanted to memorialize that here; that way I can recycle the piece of paper instead of saving it.

I haven’t said a whole lot about emotional dysregulation in general. or rejection sensitive dysphoria in particular, but I think what I think of as my anxiety is bound up with this.

I think a good example of my RSD is when i was waiting in line at the water taxi, and I started walking up to the ticket taker too soon, and got yelled at to wait. I felt TERRIBLE. I wanted to run and hide. I wanted to never ride the water taxi again. I was angry at myself for misjudging the cues. I ran it over and over in my mind, cringing with embarrassment. And the next time I walked up to that ticket guy I apologized for screwing up the last time even though he probably didn’t remember it.

Adderall helps me not react to things so severely.

But this list – i must have jotted it down last summer because the date of the calendar page is July 22, 2019.

• I’m boring
• I’m sick
• I’m weak
• I’m lazy
• I am a failure as a human being
• Nobody cares about what I have to say
• I don’t deserve nice things
• I don’t deserve to rest
• I’m stupid and awkward
• I’m going to screw things up
• I’m forgettable and boring

So, that’s a pretty shitty list. And it’s shitty to feel that way about yourself. The evidence indicates that none of those things are true, but it’s hard to acknowledge that when you are in an emotional dysregulatory spiral.

Also, fuck COVID-19, and fuck the Drumpf administration for screwing things up. This is going to be WAY worse than it had to be. I’m hoping local and state public health will step in at at least help us here in Washington. I’m grateful to see that the Gates Foundation is going to help provide testing. Testing is key. We HAVE to know who has it in order to minimize spread.

Part of my whole ADHD reality is how well I have been able to mask it. I actually started following ADHD people on Twitter because I started following people with Autism Spectrum Disorder first, and the two conditions often coexist in the same person. And I have suspected that I was on the spectrum for several years now, after reading articles like this one.

It seems pretty clear that most of my dysfunction arises from the ADHD rather than the (possible) ASD, but the other day I came across this thread that has a list of questions that might help identify a person who is skilled at masking autism. I want to think about these:

1. Have you ever felt as if you were missing the built-in instruction manual that everyone else seemed to possess? Did you spend an inordinate amount of time learning to copy the behavior of other kids so that they wouldn’t realize you were different?

YES. I feel this way every day. Like an alien among human beings.

2. Are you able to make eye contact, but would much rather NOT make eye contact? Have you taught yourself to ‘cheat’ by looking between the eyes or at the eyebrow? Does eye contact make it harder to think clearly?

I hate making eye contact though I do it. I remember getting in trouble with my dad for not making eye contact, and him telling me that I had to, as a sign of respect, and then I was over the top making eye contact all the time. I was able to figure out how to make eye contact like normal people do and after some practice I got pretty good at it. but I don’t like doing it.

3. When you’re alone do you make random noises or repeat interesting words to yourself? Do you move your hands or feet because staying still feels ‘wrong?’ Bonus points if you do this around other people.

I don’t do the noise/word thing, but this might be because I got in trouble for it when I was little. I also sit very still, but again, this is because I got in trouble for fidgeting.

4. Do people refer to you as a ’space cadet’ or a ‘day-dreamer’, even though those terms make no sense to you? Do you appreciate unusual things like constellations in the popcorn ceiling, tricks of light, numbers and textures?

Oh yes, I am definitely referred to as these things, but I also know what these things mean. They mean me, and people like me. I absolutely get fascinated by patterns in ordinary things. Those random tile arrangements where most of the tiles are white but there’s a colored one here and there – I try to spot patterns in those. There’s a sort of a textured pattern in the frosted glass in our bathroom and I like combining different ones to come up with different shapes.

5. Do your anxiety levels spike when there is a change of plans, or when somebody calls, rings a doorbell or sends an email/text? Do people perceive you as rude and antisocial for being unappreciative of their surprise attacks?

YES. My mom told me that I used to freak out when things changed when I was little. I still get anxious at unexpected changes. If the bus is late, or a fire drill, or the fucking COVID-19. The Mighty Sam pokes gentle fun at me for hiding when the pizza delivery person rings the doorbell, but I actually do this. I also panic when the phone rings. Fortunately in this day and age it’s considered more or less ok to screen your calls so I don’t often find myself actually having to ANSWER the phone when it rings. And I have a My Favorite Murder ringtone on my cell phone, which is a sound I like, so that helps. As far as others being unappreciative – mostly I’ve been able to pretend to be a normal person so I don’t think I put people off with my reactions. I also have trouble getting back to people, but I think that is more of an ADHD thing than an autism thing.

6. Do you have a hard time understanding why people feel the way they do without a personal point of reference? Are you able to relate much more once you’ve tied their experience to something that’s happened to you?

Oh certainly. In fact reading this, it is hard for me to understand that people would not need to do this to understand others. Doesn’t everybody do this? Doesn’t everybody try to be a kinder, more compassionate person by making others more real to you? I was able to understand why people want kids and have kids when I compared that to how much I love cats and how important it is for me to have them. I also know that this analogy will probably make some people think I am out of my mind. I also think I’m going to have to think about this some more because I actually don’t think this is something I ever knew about neurotypicals.

7. Do people jokingly call you ‘OCD’ for your organizational strategies or list making, even though there are perfectly rational reasons for your behavior? Does this ‘obsessive’ behavior also bring you a sense of calm and order when you’re allowed to see it though to completion?

Here’s another one where I think my ADHD is probably helping to mask the ASD. No one would ever think I was OCD because of the piles of mess and disorder that are always part of my environment. However, I do have techniques and methods that are exacting and I sometimes frustrate other people by insisting on doing things a certain way. I have learned to back WAY off on this stuff, and instead remind myself that it’s the end result that’s important, not the path, and that other people have their own paths. And, relating to #6 above, I remind myself that other people have their own methods that are as important to them as my methods are to me.

8. Do you have social anxiety, but only because you have a hefty track record of rejection due to missed social cues, difficulty navigating conversations and an inability to understand what other people are thinking?

Yes, yes, and yes. This goes back to being in elementary school and being the weird kid that nobody liked. I tried to act like other kids but somehow I could never get it right and i was always the weirdo. I continued fucking things up through, well, now, but I got better at masking as time went on. Also, I have been able to find others who either are accepting of neurodiverse people, or who are neurodiverse themselves. This is something I want to write more on later, but I think there is a sizeable segment of the neurotypical population that senses and dislikes neurodiverse people, like, intensely. Because there have always been those people I’ve run into who have taken an instant, massive dislike to me with no apparent reason.

9. Do you avoid places because of the overwhelming noise, visual clutter, bright lights or overwhelming smells? Do you avoid busy stores and do your shopping when things aren’t as busy?

YES. And this is not just stores (though I love that feature on Google Maps where it will tell you when a business is busiest). I hate noisy restaurants too. I have never been able to understand people who like to go out to bars or dance clubs and that is having a good time. How can you have a good time when you can’t hear anything? I also hate riding the bus when it’s crowded and I purposely take buses that are earlier or later than the regular commute time so that I can avoid this as much as possible. Same with getting in to work and taking lunch breaks. I’ll do an early or late lunch to avoid lunch crowding, and I will leave a little bit later than everyone else at work to avoid crowded elevators. Or just take the stairs. I’d say part of my very strong motivation to stay mobile and in good shape is to have the ability to manage my neurodiversity.

10. Do you have a built-in ‘BS detector’ and despise playing along with things that infantilize you? Have people said you’re ‘not a team player’ for complaining about pointless gift exchanges or parties? Do you need to understand the purpose of a task?

Oh for sure. I hate “team building exercises” with a passion. I hate doing stupid pointless activities. I don’t like parties. I especially don’t like it when there’s a retirement or baby shower or some shit and I DON’T KNOW THE PERSON, but they happen to be someone I work with or around. However, if I know people and get the reason I’m ok with it. My current work group does birthdays, cards, and potluck parties all the time but because I know all the people well and like them all (and they seem to like me) it makes perfect sense to participate.

11. When you get happy and excited, do people say you’re ‘too much’ or tell you to calm down? Are you unusually animated when genuinely excited, yet find it hard to fake this enthusiasm on demand for others?

I think I’ve been able to manage my life so that I am mainly around people who can handle my weirdnesses. I do get super excited about stuff like Star Trek or cats or seagulls but fortunately The Mighty Sam just seems to be amused by it, and my friends also are extremely indulgent. but yes, I have definitely found that my enthusiasm is seen as “not cool.” I’m thinking about Wil Wheaton’s definition of “geek” where he explains it as being genuinely super excited about and interested in a thing. I for sure can’t fake enthusiasm on demand but I can understand and appreciate it in others.

12. Do you feel so closely connected to your hobbies that you can blissfully engage in them for hours and have a hard time stopping for anything else? Does losing interest in them make you feel as if you’ve lost a part of yourself?

Oh yes, I can lose myself for hours in things I’m interested in. This is another ADHD-ASD overlap, I think. I don’t think I lose interest in things too much (there’s the ADHD thing where you get totally into a thing for a while and then you lose follow-through so you stop, but that’s different). But when something is done, like when we finishing watching Season 2 of “Mindhunter,” I felt bereft.

13. Is driving a stressful and exhausting experience for you? Do you tend to take the same familiar route every time and even go so far as to avoid stressful intersections and fast highways? Do you struggle making quick decisions behind the steering wheel?

Generally driving is a fun and interesting thing to do, when I know where I’m going and have a podcast to listen to. but these are adaptations I’ve made to make the experience work for me. I do like to take the same route every time and I definitely plan routes to avoid the difficult spots. I also get super stressed if I have passengers that are not The Mighty Sam. Even with The Mighty Sam I sometimes get anxious. I am also slow on making quick decisions while driving. Part of this is that I sometimes have difficulty with left and right. I have accepted the idea that I am going to make wrong driving decisions sometimes and it’s ok if I just drive to the next exit and double back, or pull over in a parking lot and fire up Google Maps. Google Maps is such a blessing for neurodiverse people.

14. Do you feel as if you relate to animals more than other people? As a child, did you secretly suspect that you were from another planet or species than that of your classmates? When meeting someone similar to yourself, do you feel like you’re ‘home’, so to speak?

I am the kind of person who is way more comfortable at a gathering or a party if there’s a cat I can pet. I used to jokingly say I look less like a human and more like an elf (which is why The Mighty Sam calls me “Elf” or “Elves” – I am plural!), but it’s not really a joke. And, yes, my neuro-indulgent friends seem like home.

15. Do you abhor the idea of making conversation with people who share nothing in common with you? Would you happily go out of your comfort zone to talk with others about a shared hobby or passion?

Yes, there are situations where you’re supposed to be chatting with someone and NOTHING HAPPENS. You’re like, ‘Hey, how are you doing?” and the person says, “Fine,” and then nothing? WTF is up with that? How do you proceed? Now I have a store of topics and questions I can pull out (the weather! It’s always different, and there’s something to like or hate about it!), so it’s not so horrible, but man. To me, a conversation should be for a reason. Let’s talk about how cute your dog is, or have an exchange where we are being as absurd as possible, or which Star Trek series is your favorite, but let’s not talk at all if you are too cool for stupid jokes.

16. Do people assume you’re angry at them when you’re not? Do you smile or laugh inappropriately, upsetting others? Have people told you that you have a ‘resting bitch face’?

I do have RBF, which I actually like because I feel it is a good defense mechanism in crowded places. I think I’ve also gotten a lot more leeway since I am now middle aged and no one is invested in me being a sex object for them. I think I have figured out how not to smile or laugh inappropriately anymore, but I sure have been told that I am awkward and inappropriate over the years.

17. Do you have an unusually monotonous or singsong voice? Do you have a hard time modulating your volume and speak with inappropriate volume for the situation?

I don’t think my voice is monotone or singsong, but it may have been when I was younger. When I listen to my voice on recordings, I think I sound very sarcastic. I do still have a hard time modulating my volume. DON’T BE SO LOUD – I can’t tell you how many times people have told me this. Sometimes I talk too quietly now, because I am so afraid of being too loud.

18. Have you purposely chosen interests that fly under the radar as ‘normal’, yet you still prefer to enjoy peripheral aspects of that interest, such as studying the stats of baseball players or making elaborate backstories for your Barbie dolls?

I think I’m fortunate to live in an era where there’s a large population of people who think it’s ok to have interests that are not “normal.” I don’t do cosplay but that looks super fun to me. I’m good reading children’s literature. And of course I am obsessed with Star Trek and cats. And seagulls.

19. Do you find it inordinately difficult to listen to someone when other people are talking? Do you have a hard time carrying on a conversation in a loud or crowded place?

YES. See #9 above! i only recently learned that neurotypical people actually CAN hear each other in these situations, which makes me understand a lot better why they can tolerate those places. I used to think they also couldn’t hear each other but that somehow, that was still fun for them.

20. Do emotions and sensory overload build up into a thunderstorm of rage that you have no choice but to ride out until it passes? This might be a meltdown. Alternately, does the buildup result in you retreating from the world and ‘zoning out’? This would be a ‘shutdown’.

I don’t do meltdowns – I may have when I was a little kid, and these days I get in states where I FEEL like I want to just scream and scream, but I don’t actually do it. I do get so upset and overwhelmed that I have to take time to be alone. I wonder sometimes if that’s what my migraines are – they hurt so much that I am FORCED to have downtime.

21. While not officially criteria, this is something that many autistics will relate to: Do gender, romantic and sexuality norms seem arbitrary and fake? Even if you don’t identify as LGBTQ+, do you hesitate when referring to yourself as cisgender or heterosexual?

I don’t think norms seem fake, but I also don’t think it should be hard to understand and accept that these norms are not exclusive. It is seriously a mystery to me why anyone would care about anyone else’s gender, sexuality, or romantic orientation. It shouldn’t matter unless you and the other person are actually considering having some kind of sexual and/or romantic encounter or relationship. Otherwise, why does it have to be a big deal?

22. Have you developed coping mechanisms such as lists, schedules, stacks of paper, alarms and reminders to help you function as an adult? Would you still be able to get by without them?

YES. This is also because of my ADHD. I could probably manage for a very short time without them – like when I have left my to-do notebook at work, which I do sometimes – but I would get lost within a few days. I can only manage to do things if i have developed a cast-iron habit for it (my morning get-ready-for-work routine), or if I have it on a list, or have a cell phone reminder. When I was young and had a young person’s memory, I was able to manage some stuff a little better – even though I had executive dysfunction my raw memory ability was pretty good so that helped me a lot.

23. Do you go through periods where you can’t even remember how to make dinner or get ready for work, and even the easiest of tasks seem insurmountable because you can’t fathom completing the steps to completion?

Yes. This is another ADHD overlap. Sometimes i will need to do a thing and I will just have no idea what to do. or I will forget what the first step is. Or it will just seem SO HUGE that I just can’t imagine how I can ever do it, or anything, ever again.

++++++

I do have a follow up with the psychologist to talk about ASD, on the 19th, so I hope to get some more insight there.

Once that is settled – Dx or no Dx – I will look into using my work EAP plan to get some therapy. They have a list of providers, and you have to call to find out who is on the list. I hope they will have someone who specializes in neurodiversity.

On Sunday I had a migraine. I didn’t take Adderall on that day because I would have thrown it up.

So, this is almost exactly 4 weeks since I started taking Adderall and now, migraines 4 weeks apart.

Migraines suck so much.

I’m getting tired of life getting more stressful. It’s like ok, the election has just been horrible, and now we have this coronavirus epidemic. I just want to have a little while to breathe and be happy.

I have physical therapy on Wednesday for my knee, which is good. I would really like to get it so that I can do real exercise again. If that has to be riding a bike instead of jogging, so be it.

Still, I guess I have to say that all things considered, I am way less stressed than I would have been with no Adderall. I am going around and around in my head but it’s not turning into a panicky spiral. At least not yet.

I’m also thinking of constructive measures. I’ve decided to stop shaking hands. I’ve been resisting putting my hair in a ponytail or putting it up but I think I’m going to have to, because hair in my face is a great way to touch my face without thinking.

I wonder if it would make sense to just wear gloves all the time, unless I’m at home or at a workstation. Probably not.

I’ve also decided to stop taking my phone into the restroom. Phones are disgusting piles of germiness.

I’m irritated that hand sanitizer is sold out everywhere but I did find a make-your-own recipe so I may do that.

Also: The Theme from Flood is about 20 seconds long, so I’m singing that while washing my hands.

I want to talk about what it is like to be hungry and eat, with and without Adderall.

Without AdderalL: I’ve wondered my whole life why I can’t eat like a normal person. I’m always hungry, it seems there’s never enough food, and I’ll eat until I’m overstuffed and still feel like I want more. Sugary things are beyond compelling. I jokingly refer to those frosted white cupcakes from the grocery store as crack, but it’s not really a joke.

If I ever wanted to lose weight, i would have to go into super strict diet mode. I could not have even ONE sweet. It was cold turkey or nothing. Food would have to be strictly limited and I could NOT make a SINGLE exception, or else i would just go on a total food bender, and six months later I would have gained all the weight back.

And so, I read a lot about it. I tried low carbing it for a while, and that worked the same way that going cold turkey on sugar and portion sizes worked – keeping myself from getting into a food bender.

The problem is that you have to eat! You can’t go completely cold turkey on food the way you can with cigarettes or caffeine.

Except there have been a few times in my life where I’ve been able to eat normal amounts of food, and that I haven’t been thinking about food except when I’m eating it, or I’m actually hungry. Those times have been times of transition and good stress.

Now I wonder if those times were times when life circumstances kicked my dopamine levels up. Life circumstances like breaking up with a bad boyfriend and starting a new job, or starting law school, or moving to a new city. I’ve always loved being in super crisis change mode because I just feel so… i don’t know…. normal and competent?

I wonder if the thing that manifests as a food addiction is just me subconsciously trying to boost my dopamine.

I know a lot of modern research indicates that people have weight set points that is very difficult to change, either up OR down. But it is also true of ME that when I am in good-stress-change mode I lose weight, and when I am in normal mode I tend to gain weight, and that gained weight is directly related to eating two candy bars and a large piece of cake every night for 6 months in a row.

When I’m in “normal” mode I feel like I HAVE to have something sweet. And I feel bereft if I don’t get it. And after I’ve eaten it I feel like I want more.

Adderall makes it so my appetite feels like being in good-stress-change mode, even without an actual good-stress change happening. The first few days on Adderall I really didn’t have much appetite at all. But after a few days I started feeling hungry again. Like, actual hunger. Not i-must-feed-my-addiction craving. And then when I eat, it’s good but I don’t feel like I have to take a huge portion, and I don’t feel like I have to eat everything in front of me if I stop being hungry.

It is really weird for me to leave food. Or leave coffee. Or leave an alcoholic beverage. But on Adderall it feels totally reasonable to just eat what I feel like and no more.

Part of me is thinking, HOW CAN IT BE that I would EVER not want more?

Like most of this stuff, I’ve always felt like my disordered eating is a moral failing. I don’t have enough self discipline, I don’t have enough moral power, my eating habits are immature (e.g., eating Marshmallow Peeps until I’m sick!), I should just choose not to eat that second cookie, or that third doughnut, or that fourth piece of pizza, and then not do it.

Now it seems like it was just fucked up brain chemistry this whole time? WTF is up with that?

Today I ordered a Starbucks breakfast sandwich for lunch, and I ate it, and it was good, but when I was done I was satisfied, and I didn’t wish for more food. And I didn’t even THINK about how I normally would be wishing for more food.

Right now I’m hungry, and The Mighty Sam is fixing hushpuppies and spicy sausage for dinner, and I’m totally looking forward to it. He just gave me a sample hushpuppy and it was delicious! But I’m thinking I’ll probably want just one sausage and a few hushpuppies and then I’ll be good.

Another thing is that I’m not feeling like i have to keep snacking on stuff right up until I go to bed. That’s really awesome because it makes it much easier to Sonicare and Water Pik my teeth before bed.

I wonder how many people with ADHD have terrible teeth. That will be another post.