Tag autism

More assessments and more unmasking

Angel Ackerman Leave a comment

Today has already been a long day, and it’s not even noon. 11:49 a.m. but not noon.

I am holding and caressing my necklace pendant, trying to will myself to breathe and take a break. I have spent most of the day hungry and “driven by a motor” (if you do enough anxiety assessments, you recognize the language.)

I woke around seven, after getting to bed at midnight because I left the restaurant after 10 p.m. I came home, showered, reheated dinner and watched the latest episode of Doc. I went to bed, and before I drifted to sleep, I actually cuddled the cat who lives under my bed. I cuddled him for the first time, despite the fact that he has lived in my room for about five years.

I vaguely remember checking my sleep stats, weighing myself, going to the bathroom, weighing myself again, and getting dressed. I clearly remember how disappointed in myself I was for having a big fast food dinner last night and no fruits or vegetables at all yesterday and I was annoyed that I ate potato chips, because my weight stabilized after a weekend of bad eating and I probably would have hit a new low had I not eaten junk yesterday.

I came down, started laundry so my uniforms are clean for tonight and tomorrow, poured coffee, grabbed my water bottle– and had to scrub my water bottle and rinse all the dirty dishes in the sink– and then went to my desk to take my morning muscle relaxers, at double the high dose, because my movement is struggling and I’m in pain thanks to my shift at the restaurant last night. (But they gave me a floral crown.)

Working late and having an 8:30 a.m. medical appointment definitely interrupted my morning routine.

I worked on my journal pages for the morning while sitting in the doctor’s lobby. Now… what happened AT the appointment might best be summarized by my follow-up note for my long-time psychologist. Edited but presented here:

This poor woman. Her job is supposed to be to help medication management for patients who need to be monitored by a psychiatrist but are managed well enough that they don’t need heavy supervision. That sounds like a nice way to phrase it.

Last week they gave me TWO HOURS of assessments. And as I told you, I was fairly confident the psychiatrist would say I was bipolar or had GAD issues and recommend an SSRI.

He did not. So kudos to him. (His name is Dr. REDACTED by the way, which makes me happy because my dad went by that name.) He asked for deeper assessments.

So today we started with a different bipolar assessment meant to see if I have manic episodes– to which I replied, “I don’t have that kind of energy. If I did, the first thing I would do is clean my house.” 

After that one, we moved to OCD. And I can see why he asked for that one. NINE pages. (In the end I was disappointed– it wasn’t nearly as in-depth and laborious as she made it sound. There is not nearly enough standardized testing in adulthood.)

I literally said, “Great. I love paperwork. My friend is DC invites me down so we can do our taxes together.”

And she read me the first page of the Yale-Brown Assessment. Which tried my patience. I read it twice waiting for her to finish. Did I ever tell you I hate to be read to? 

The test had two columns– one for current, one for past– and the directions said to circle anything that was upsetting or disrupting to life. Well, according to the textbook definition of obsession and compulsion, nothing I do fits those categories. I absolutely know, understand and can deal with the reality that my routines do not matter or change outcomes. They are self-soothing behaviors that prevent my frustration, anger, and help me feel like my environment is under control. And I told her so. I told her that I want to be sure when I come home at the end of the day, I return to a place that I don’t need to worry about, a place where I am safe and calm. 

And she asked if I performed behaviors to achieve a goal, and I told her everything I do connects to a goal. “I am sitting here right now reminding myself that when I finish here, I get to have a cup of coffee from Panera.” 

She asked me to track my mood and my sleep– and I told her I have done both, but I periodically stop tracking mood because all it does it confirm that I worry about everything all the time and that upset me. That I last stopped probably about six months ago. And that I track my sleep every day, examine my sleep tracker every morning, and record notes every day in my journal. She asked me to take a piece of paper and make columns for mood | sleep | energy | confidence and I replied, “So, you want a spreadsheet? I have spreadsheets for everything.”

Now, I don’t know if you realize how this is going to go down. I’m going to spend the next hour working on a blog entry, then I will probably spent two hours designing a spreadsheet on Google sheets so it can be shared, that will hold the most precise data on these topics she has every seen.

And now, I am wondering if the next assessment I have to take will be to see if I am on the Autism spectrum, because numbers and spreadsheets and ABC order bring me great joy. On a scale like, in the absence of good sex, the next best high would be organizing research/data/objects. 

Oh, and I now refer to this practitioner as “shrink-by-proxy.”

And I gotta say, I respect this doctor for not jumping to the obvious conclusion. And I am now firmly in the land of medical-professionals-who-must-rule-out-all-the-things-that-I-know-are-not-the-problem” which I like better than the medical professional who assumes he just knows the answer because he’s an educated white man of a certain age.

I was not entirely accurate in my depiction of how the next almost three hours of my life would go. I came home, wrote a different blog entry completely, put my laundry in the dryer, took allergy medicine, told my daughter several stories, read someone’s comments about one of my stories, visited social media, and finally– again almost three hours after I got home– started this blog entry.

Some other thoughts from the session:

  • I will not eat or return to the run-of-the-mill activities until I design this spreadsheet.
  • I will add my pain levels to the spreadsheet and probably additional info as well because I deem it important.
  • I told them my biological siblings/father have shown evidence of ADHD
  • I explained the difference between my obession/compulsion and their criteria:
    • I follow rules rigidly, but I also break them if I know my behavior will not effect the outcome
    • My rules and routines do keep people safe (food safety, emergency preparedness) but I do not participate in them to the extent that it impacts my ability to live.
    • Keeping people safe/ maintaining a predictable environment comes from childhood trauma
    • Pattens/numbers bring me joy
    • I do not “hoard” but I will save certain items for a special occasion to the extent that they will spoil or get lost or broken– because of a scarcity mindset from insecurity caused by childhood trauma
    • I do not filter what I say or worry about what I say to the extent that I will pick “true” over “polite.”
  • Everything I do, I get done because I bribe myself with a reward when I reach the goal.

Things that didn’t come up but I wish they did:

  • I would bet money that I react to red dyes. Ask me about my childhood and my experience with Jungle Juice at the local pizzeria.
  • I have safe foods and food cycles. Same with music.
  • I have issues with sensory input and occasionally have meltdowns from overstimulation.
  • Does the world realize I have fictional characters existing in my head, telling me their story as I live my life. This alone may show how many things happen in my brain at one time.
  • I am fiercely protective of my spots: my spot on the couch, my parking spot in front of the house, where I put my possessions, how my food is organized while stored.
  • I drink my iced coffee out of old pickle jars.
  • I eat certain foods off certain dishes and with certain utensils.

I am currently very hungry but too busy to eat. My daughter has so far fed me a stale macaron and a mini cheesecake/pumpkin/coffeecake cupcake. I have had about 50 ounces of coffee and 25 ounces of water and peed at least four times since I got home. This is the precise behavior that has led to my “urge incontinence.” I thought I was getting older and therefore peeing myself when I finally realized that instead I drink insane amounts of caffeine in tandem with ridiculous amounts of water.

Off to make the coolest spreadsheet I have ever made.

Do I need to put on clothes today?

Angel Ackerman Leave a comment

Tonight I have a long-for-me shift at the fast food restaurant. 4 p.m. to 10 p.m.

Tomorrow I have a very busy day– gynecologist appointment at 7:30 a.m., helping Nan with her stuff around 9:15 a.m., teaching in the afternoon.

Thursday, we are recording our radio program at WDVR. Then, selling chicken from 4 p.m. to 9 p.m.

So, today I wanted to send out our acceptance letters for the Greater Lehigh Valley Writers Group The Write Stuff conference, March 11-13, 2027 at the Homewood Suites by Hilton in Center Valley, Pa. And I almost sent one so far. It’s ten minutes from noon.

Did I do things? Yes. Were they important? Yes.

Just not what I intended.

One of the items I have needed to do is grab a few groceries. I have been very careful with my diet lately (which has led to a new number today, one I haven’t seen in more than a year if not since the pandemic when I started rapidly gaining weight). And my daughter made me get dressed and go to Aldi.

Why Aldi? I wanted chicken salad and shelled endamame.

They didn’t have chicken salad and only had whole edamame. I didn’t want whole. I also wanted a salad and all their greens and pre-bagged salad mixes looked past their prime. So I came home with baby carrots (which I don’t eat, and I was hoping to make carrot pickles but I didn’t get the vinegar…), plain greek yogurt (because the flavors have too much sugar, but I probably won’t eat the plain), half and half (but I did not get coffee), crab cakes, and cheese. And bologna. Cheap cheap bologna because despite my primarily vegan tendencies I just really needed a bologna and cheese sandwich.

And two boxes of protein bars since I didn’t buy much food.

I did not want to get dressed. Until later.

Yesterday, I had my annual physical with my primary care physician. It was the first appointment of the day, and he spent 45 minutes with me. I had told myself that I did not intend to bring anything up. That I wanted to get in and out, continue my own experiments into diet, exercise and sleep, and ask for follow-up bloodwork.

He went through my late June bloodwork I did for him and the mid-August bloodwork I did for the life insurance company, with me, and requested I do another A1C and some vitamin D and some stored Ferritin… He was surprised to see– that as I told him– my “bad” cholesterol and my weight change very quickly according to what I eat. It’s how I gained almost 15 pounds this winter and lost it since July.

I still think I am among a rare amount of people who really pay attention to their bodies and try to understand and improve. He also asked how long I’ve been off my blood pressure meds– and I said– “about a year,” and then I reminded him that my cardiologist knows, or at least I told her I would probably stop taking them.

“Your blood pressure is great,” he said.

“The pills didn’t help,” I replied. I was prescribed the beta blocker because of my single incidence of afib. I stayed on it because I hoped it would help my anxiety– specifically the way my heart will sometimes race for hours for no reason. But the medicine never stopped that. If anything (and I have yet to prove this, my evidence so far is purely anecdotal, it’s food. I think the right blend of high sodium and refined white carbohydrates makes my heart want to explode.)

And my blood pressure has maintained itself in a healthy zone the entire time I have been unmedicated.

But then my doctor found out, I have been having stress dreams, disrupted sleep routines and general poor sleep since incorporating more “easy food” and less of my “outside aisles of the grocery store” home cooking. And now he’s worried about sleep apnea, my tendency to display symptoms of mild clinical depression, and my inability to relax (or have fun). He offered me a temporary antidepressant, and I declined.

And then today I remembered… I have been on the waitlist for a psychiatrist appointment for almost a year. During my routine physicals last fall I talked with my entire care team (primary care, cardiologist, mental health therapist, and neurologist) about the prospect of trying a low dose of valium as a breakthrough medication.

According to my research, doctors often give valium to children with cerebral palsy to calm spasticity and help them sleep. I asked my team about it. No one has experience with that sort of thing so they referred me to psych. So I reminded my doctor of this is an email. I told him that on bad days I often take 60 mg of baclofen– so could we try a small dose of valium in a small amount of pills to see if I took 2 mg of valium instead of all the baclofen if that would calm my muscles, alleviate my twitching hamstring, settle my heart, reduce my spasticity, and allow me to (1) stretch everything, (2) sleep better and therefore (3) recover better.

Remember– my leg muscles are unable to relax. I can’t even describe what it feels like. Sometimes it feels like my calves are so tight they burn. Sometimes my thighs feel like bricks. So if my doctor thinks I might benefit from a little something… this might be the something.

And on my one tangent for today: I have been binge-watching Nurse Jackie. I never liked Jackie, found her repulsive as a person but the older I get the more I recognize the accuracy of the depiction of people in addiction. And my daughter brought up something vital to consider:

Is Nurse Jackie an unreliable narrator?

My daughter votes yes, because there’s no way that an addict taking as much shit as she does (especially as a nurse) could appear to have her shit together as well as she does.

Interesting thought.

I have reached the midpoint in the series, and I’ve never watched this much before. And she has entered rehab and thrown her husband out of the house. And I’m thinking about it.

Meanwhile, my daughter has been tracing ADHD and autism in her family tree. My daughter– from a young age– has been super keyed in to people’s minds, patterns and habits. And just like she’s freakishly good at seeing every ripple in a dog’s body language, she’s damn accurate with her psychiatric diagnoses. And she’s finishing her bachelor’s in psych at Lafayette, she’s also developed some ideas about medication (so I asked her to do one of her recent psychopharmacology assignments on valium). She’s wondering if I might have ADHD.

My response is typically that it doesn’t matter.

I have a disability. One that stems from lack of oxygen at birth. One known to affect GABA in the body.

I score fairly high on the ACE scale for childhood trauma.

My parents were alcoholics.

Did I inherit generational trauma? Probably. Do I exhibit everything from OCD to depression to anxiety? Yes. Because my brain never learned how to feel safe and/or let its guard down. I never relax. The last time I felt truly relaxed was during some good adult physical activities that I don’t get nearly enough of. And do you know how much I need to trust my partner to let that happen?

My daughter believes something interesting about this whole ADHD hypothesis. She basically said I have not allowed myself to fail enough to recognize the truth it what she’s said. AND that because of that no clinician could ever diagnose me.

Strange food for thought.

Random Review of the Day: ABC’s The Good Doctor

Angel Ackerman Leave a comment

Saturday (December 3, 2022) was International Day of Persons with Disabilities.

Coincidentally, today I am watching Hulu and catching up on ABC’s The Good Doctor. I started losing interest in the show when the characters starting experiencing once-in-a-lifetime traumatic events every season. The show seems to have become surgeons trying to save each others’ lives instead of the patients.

The main premise of the show is that Dr. Sean Murphy is on the autism spectrum and uses some special effects to show the audience how his mind works (which reminds me of the early seasons of House MD when they relied on special effects to show what was happening inside the patient, but more bookish).

Sean leads what I think everyone would agree is a normal life. And his journey to fit in and live that normal life is central to the program. Did the creators/writers make him a doctor so that people’s lives rely on him? Or is it to show that this is an amazing use of his unique mind?

SMALL SPOILER AHEAD

Regardless, the writers place his social struggles amid these high stakes events that really don’t depict ordinary life. In the current season, Sean’s supervisor Audrey Lim finds herself lucky to be alive but in a wheelchair. The initial quandary about this is Sean’s role in the surgery that left her paralyzed.

The first couple episode of the season address Lim’s adjustments to life in a chair, and this includes her trying everything she can think of to return to her life as a stellar surgeon at the hospital. And she does. And even while achieving these milestones, she is angry and dealing with disability grief. I would also venture to say that at some points she almost says she’d rather be dead than living this disabled life.

Now I’m on episode 4 or 5 of season 3, and now the team thinks they can find another surgery to cure Lim.

Why does Lim have to be fixed?

Once again, the mainstream media is showing us that disability must be fixed. I was so impressed with Lim’s balance of frustration and determination to regain her prestige as a surgeon. I don’t want to see her fixed.

I guess we’ll see where it goes.

But I also wonder what young people who rely on wheelchairs and other mobility devices would feel if Lim walks again. If a gifted medical professional can’t feel whole and productive without her legs, what does that say about the value of disabled lives? What young person needs to see representation of someone accepting their new abilities?

Health: Gluten-free cooking workshop at Warren Hospital (2004)

Angel Ackerman Leave a comment

WarrenCookingThis article stemmed from a cooking workshop/presentation at Warren Hospital in Phillipsburg, N.J. It occurred almost ten years ago. The host was the executive chef of the hospital, Mike DiCenso. At the time, gluten-free cooking, Celiac disease, gluten intolerance and the connection between gluten and autism/sensory disorders was not quite as mainstream a conversation as it is now.

I pulled this article out of deep storage. The information in it remains pertinent, if not more relevant than it was a decade ago.