“27 8×10 color photographs with circles and arrows and a paragraph on the back of each one.”

Angel Ackerman 4 Comments

I have been writing this entry in my head for about two hours now, I even opened the phone app and literally started the file– the first keystrokes on the blank screen– in between doctor appointments. I feel a bit like the main character/Arlo Gunthrie in “Alice’s Restaurant.”

Which is a reference that probably only makes sense if you’re a Boomer or GenX like me.

In that song, the Arlo Gunthrie protagonist faces criminal charges of littering and the police department has submitted into evidence for the court case “27 eight-by-ten colour glossy photographs with circles
and arrows and a paragraph on the back of each one” only to have the judge enter the courtroom with a seeing-eye dog. (Then the joke: “it was a typical case of American
blind justice, and there wasn’t nothing he could do about it”)

If you need some more explanation… Here’s the whole song.

I woke up at 5 a.m., wide awake for two reasons. 1. My brain had flipped back on. Full force. 18 thoughts at the same time. But 65 minutes of deep sleep, even though I only slept six.

I tried to go back to sleep, I really did, but I ended up clamoring to my feet. And for some reason, I got dressed. Like really dressed. Fake satin and lace skirt, sweater, dress shirt, boots. Gained five pounds because they weighed me with my boots.

My blood pressure was high because I had two doctor appointments this morning, one of which I have been concerned about for more than a week.

I left a few minutes later than I would have preferred because I stopped to do some dishes, thought I left my phone behind, then circled back because I had had my phone the whole time. I made it almost to the office when I remembered my primary care practice had moved to a new building (luckily, more or less across the street from the old building) and when I arrived in the parking lot, I realized how big the new building was. And the signage wasn’t the best.

The inside of the building on the side that wasn’t the big physical therapy office seemed dark and unfinished, with about six self-service check-in kiosks right inside the door. So I walked around the building before heading in. And turns out those walls that looked merely framed out and not finished– that was actually decorative trim. Then I found the building directory and elevator (which took forever to go one floor) only to have it open into one of those massive waiting rooms with several practices feeding into it. Yup, definitely not the homey small feel I am used to.

And by the way, if I would have turned right and gone up the stairs, the waiting room was right there.

I finally arrive and the woman who checked me in is there for the day and needs a minute to figure things out, and a familiar face comes and helps her, then we all start talking about my hair, and before I know it, my shrink-by-proxy is wandering the waiting room looking for me.

She guides me back to her office, which is no longer a closet, and she fights with the light switch to try and lower the lights. I have confirmed that she is a MSW, and I notice she has a backpack with her name on it on a hook inside the door. [hang loose here guys– I have been interrupted from this post several times and it has tense shifts and all sorts of issues that I’m not fixing.)

Now, remember my “Alice’s Restaurant” reference? I had my Book of Kells reusable canvas tote filled with about 25 pages of spreadsheet data, a copy of my legal pad to-do list, and self-report ADHD surveys filled out blindly by Eva and I. As soon as I sat down, my MSW-shrink-by-proxy said, “I’ve talked to [primary care provider] and we believe you would benefit from an evaluation from a psychiatrist.”

Oh? The same one I wanted to see about 14 months ago?

Yes, that one.

I have been told and I knew from the beginning that the likelihood of this program helping me would be slight, and we thought it might be a way to get me further up the food chain. It did not. But that’s okay. I respected her for saying that she could not continue to experiment with medication to guess what I might tolerate and what might help.

I mentioned where my daughter receives her care for her ADHD, and my doctor’s staff made a recommendation on a physician there who might be a good fit.

So she didn’t look at my visual aids.

She sent me back into the waiting room where I intended to do my morning journaling.

A woman broke away from the medical assistant who had been sent into the waiting room to retrieve her.

“Excuse me,” she said. “I love your style. And the boots are great.”

“Thanks,” I said. “My business color is bright pink so these are my special event boots.”

“What business are you in?”

“I have a book publishing company, Parisian Phoenix.”

“I lived in Paris, and I worked in fashion for 15 years…”

Do I need to tell you that made my day?

I was about to head out to my car and grab business cards– because I had almost 45 minutes until my next appointment. But then, the medical assistant returned for me. My doctor was almost done with a patient and she thought he might get to me early. He did not.

I think she forgot it was working-with-residents day and that my doctor pretty much does everything over once the resident does it. I forgot that too. I sat in the exam room for more than 30 minutes, and then spent about 20 minutes with the resident. He opened with, “So what brings you in today?”

“I don’t know,” I answered. “Dr. Mathur has some concerns about my bloodwork and asked me to come in– I believe it was because of my low vitamin D and increasing A1C, but if you poke around in my chart, we can talk about anything you like.”

Short version: He wants me to watch my consumption of sugars/carbs, take vit. D and B12, and exercise. And he gave me all the standard advice. He asked if he could give me an exam. I said sure. He listened to my heart, looked at my knees (not sure why) and then gave me a neuro exam. Which I recognize at this point as I see a neurologist 1-2 times a year.

“Let’s see if you do this better than my neurologist did yesterday,” I said.

And he almost laughed.

He then left to “talk to Dr. [my doc]” and I didn’t see him again for more than 30 minutes. He returned with my doctor and suddenly my doctor and I are talking about veganism, my service dog, the macaroni and cheese at Chick-Fil-A, and the pizza at Spice Crust Pizzeria.

The resident smiles.

I explain to my doctor that it’s the Indian fusion pizzeria down the street. “They use what looks to be high-quality ingredients,” I add. “I bet he’ll agree.”

I gesture to the resident.

“It’s good,” he confirms.

Apparently, the resident is a “smart one,” according to my doctor, and he’s authored papers on vitamin deficiencies.

“You didn’t tell me that,” I said to the young doctor. I swear, he practically blushed.

Then we talked briefly of the medication debacle (Zoloft), and I told him why I had pursued this and the emotional regulation I experienced on Adderall.

But no one looked at my materials…

When I got home, I called the recommended psych practice and they require a good old paper referral. So once my doctor’s office faxes them that, I will get a call from them.

Over-firing

Angel Ackerman 3 Comments

I saw my neurologist/physiatrist yesterday. She’s a fabulous doctor and a dog lover. So at the end of my visit, I showed her the video of me working with South. She watched most of the video, paying attention to both of us.

She’s really excited and hopeful about the potential service dog placement.

She’s concerned about the recent changes in my movement and issues with my left leg and has recommended physical therapy, which I will do if I can do it before my deductible resets. I did, after all, hit my deductible for the second time this year.

She is okay with me taking up to 20 mg of baclofen 3-4 times a day. But she warned that experimenting with other medications for my mental health may impact my spasticity. Especially stimulants. I told her, anecdotally, the stimulants settle my brain enough that I don’t feel like I’m fighting my body all day. She expressed her doubt with a twist of her lips.

I understand the need for guidelines and best practices and the only value diagnoses often have is to put a label on something to render it necessary so insurance will pay for it. I am low on Vitamin D and have a history of anemia– I take iron fairly regularly so my ferritin is okay. My doctor followed-up with some vitamin B12 tests to make sure I don’t have an issue there– those were deemed medically unnecessary and I had to pay $500. As a small business owner who works several part-time jobs, that’s a significant amount of money to me.

There are so many things about trying to find relief for what bothers a person…And yes that sentence is deliberately ambiguous.

My daughter walked into the same office I am visiting today, at age 17, as one of her first visits to an adult family medicine practice. She asked for an ADHD diagnosis and medication and got a base dose of Adderall with no issue. Now, let me reiterate, that a true diagnoses of ADHD requires manifestation in childhood– and parent recollection counts. In my case, I have no such thing. My mother would probably shrug. My dad is dead. My biological father is also dead, and my mental health therapist thinks the ADHD comes from him. My grades were impeccable. I loved school. I talked a lot. ADHD was not a thing back then. I did not have a traditional doctor or routine medical care from around age 5 to 20.

My daughter, while her upbringing was much different, had an old school pediatrician who had patients my age. So emphasis on old. But he was good, and his office was about 400 steps from our house. That’s what I liked. We only had one car. Eva did, and still does, great in school. I would wager she has more intellect and capacity for greatness than I ever did– yeah, I’m implying that my kid is smarter than me and I think I’m pretty damn smart– but she’s got this streak in her… She calculates the end result she wants and the minimum effort it takes to get there. I am an all-in, competitive personality. She talks so much I don’t think she ever has a thought that doesn’t come out of her mouth. But, unlike my upbringing, which was a typical GenX “go outside and play” and adults did not really interact with children variety, I have encouraged her to speak her mind. I learned early on it was easier to hear her out and reason with her than enact arbitrary rules. She never stops moving, unless she’s asleep. And to get her to sleep as a baby, Darrell had to swaddle her so hard she couldn’t move or else her little limbs would slap herself awake.

But no one ever asked us if we thought she had ADHD.

Looking back, it makes a lot of sense. But when she was 17, no doctor really asked us. The school never said she might have it. Eva was a great student, and, while I was the traditional “teacher’s pet,” she became the kid who looked after the kids who had behavioral issues. The teacher would sit the disruptive kids next to her so she could help keep them in line. I wanted to impress the teacher, she wanted to help. Eva has always excelled at determining what has value to her and what doesn’t matter– the kid deleted all the invitations to high school and college honor societies– whereas I always reach for whatever achievements people tell me should be next.

But yet… we are the same.

I am 51 years and 5 months old. And about one month ago, I took a dose of Adderall that changed my perspective on the world so dramatically I get tears in my eyes right now typing this. THAT is what makes this journey exciting, frustrating and dangerous. If they offered me any drug that could make my brain do the things (or not do) like that… I would take it every day and probably pay a hefty price for it. It’s not about feeling “good,” it’s a chance to live my life without feeling constantly under threat.

And I’m so sick of doctors trying to say I’m depressed. I have close friends who have clinical depression, and a few peers with bipolar depression. I don’t see any of myself in that. I’ve said it before– I love everything about who I am and my life, and I recognize the good I do, what I have achieved, and (as my mental health therapist says) the value it what I have avoided. I have survived and thrived.

But sometimes, my brain tears me apart from inside my own head.

I carefully plot my time and my schedule to do the things I need and want to do. I choose commitments based on my personal values. But no matter how much I try to avoid it, I end up overscheduled, rushed and overwhelmed, and I happily but unwisely maintain an intense work schedule until my brain just stops (despite how much I love everything I do). I work, I work, and then one day I have no energy left and it feels like the soul has been sucked out of my body. No matter what I do my brain will not turn on.

I now believe, that’s BURN-OUT not depression.

And I do this over and over and over again. I have treated it like an emotion, like something inside me is wrong, and it’s just a different kind of tired. I never understood that until now.

At the arcade, when I was playing Mario Kart with the teens, I could play the game without tension, without feeling like my life was on the line, and I got a similar “rush” whether I won or lost. I enjoyed playing. I enjoyed trying. I enjoyed the camaraderie. I had never experienced that before.

There are a few special moments in my life when I experienced intense beauty, or better than usual sex, or a new level of emotion, when the world felt quiet and peaceful and warm, and I never realized until now that those instances of being truly in the moment don’t have to be that periodic. That…

Pause. 7:15 a.m. My alarm would have gone off now if I had slept more… and here I am now, crying. Typing this.

Yesterday, my daughter resumed her Adderall after the pharmacy did not have it in stock. Between her recent ear infection and the pharmacy issue, it had been about three weeks. So she split the pill with me. (Yes, this is a tangent, but bear with me. It’s pertinent, and this is the stuff that I will organize and edit when I write these things for real.) I experience some of those calm, beautiful moments throughout the day yesterday. Laughter with my friend, Nan, as we soaked in sun walking across the Staples parking lot, for example.

I went to work at the restaurant and learned I had a four-hour shift at the work center I like least and that hurts me most. No break. Just four hours of hell. I was very stressed about this before I clocked in. I even got a high heart rate notification from my watch. But I was also oddly resigned. Like we’d see how it goes. The first half an hour I was tense, but also steady. I said to the supervisor– the young one whose very energy increases my natural anxiety– “hey, I haven’t done a full shift in this work centers in six or seven months so I’m a little flustered.” And I communicated with her that I needed more supplies, and that I may need some help keeping ahead of what needed to be done.

Someone else asked if they could give me a hand– and we had had a special event that involved having children coming to get themselves ice cream at my station during the dinner rush– so perhaps that had me on edge, because I knew I had tp be on my best behavior and keep a tidy station… So I let them help, and this is someone who has energy closer to mine, though still he has the same frenetic tendencies the supervisor does, and it was fun. Because of the camaraderie. By the end of the night, I was having a good time by myself, and when I got behind, in the same way that often felt hopeless when I was unmedicated, I was able to listen to my rational brain and let go of the anxious thoughts. And I left my shift with good energy and minimal pain.

The emotional regulation piece of this is transformative.

I have always thought my brain was a hugely unreliable narrator. That I couldn’t trust it. I didn’t know when it was worthy of my trust. I now realize I have a highly logical and organized brain, but when it’s overfiring, and that’s the best way I can describe it, the thoughts fly faster than my poor little cells can file. Yes, I’m imagining neurons with little filing cabinets, and happy brain chemicals tossing balls of happy and calm around, and my poor little office workers being clumsy athletes.

This is where I would insert a shrug emoji if I were texting someone…

TO BE CONTINUED….

Some thoughts and preparations

Angel Ackerman Leave a comment

I have been thinking a lot about life in the modern age and how perhaps people were not meant to live in these conditions.

History shows us that disability, sexuality, health and other traits of the human body have always featured difference. Political systems and religions have persecuted some and benefited others since the dawn of time.

But as the world industrialized, we have distanced humanity from the natural rhythms of life.

Humans used to live and sleep by the sun and survive by preparing for each of the seasons. We lived with extended families and protected communities. The amount of labor that needed to be done also meant there were jobs for all, some easy and some hard. Work all contributed toward survival and jobs could be catered to the abilities of each.

We have introduced so many technologies and made our lives much less physical, and our bodies and our mental health pay the price. Perhaps the human machine was not meant to process so many electronic signals, strange lights and live in manufactured environments.

In my own life, well-meaning friends are always telling me to stop over-scheduling myself and to relax more, but I don’t think they understand that I have enough time and energy to do it all— I just can’t settle my thoughts enough to do it without urgency.

Today I visited my mental health therapist for the purpose of showing him my charts and my data regarding the idea that I may or may not have ADHD or AuDHD. I told him that even though my daughter and I took the same screening, at the same time, and had almost the exact same results, that of course the establishment would offer the teenager a stimulant and a diagnosis of ADHD and me, the fifty-something woman who has always done all the things, an SSRI and question if I have a form of depression.

“They want everybody on an SSRI,” he quipped, “not just you.”

I went to see my therapist because I know returning to my primary care physician’s office Thursday to see the shrink-by-proxy and my actual primary care physician– who has not heard about any of this yet will potentially be emotional, because while I have compiled all this data, the reality is that the most likely outcome will be the one-size-fits-all assessment. And I am not that simple, none of us really are.

My therapist can see how my experiences with Adderall have quieted the fire in my brain, allowing me to end the constant urgency in my everyday tasks, but still thinks my general organization skills dispel the idea of any sort of ADHD, but if there is a touch of Autistic behavior in there… who knows. But that it’s the everyday minutiae that spins me out of control, not a crisis. And we all know that it’s hard for me to adapt in environments of shifting expectations or no communication– that’s when my emotional regulation gets out-of-whack.

But I keep thinking back to the two sensations I have never had before, that I experienced on Adderall:

  1. I could relax on the couch and just relax, without thinking about what else needed to be done or how to boost my efficiency.
  2. I could have fun– play video games without feeling threatened, without the high of a win or an emotional landmine when I lost. Fun didn’t feel like a chore.

And these are the things I would like to explore… how to dial down my brain. How to focus on one moment or one item at a time without thinking of all of them.

I shared my spreadsheet with my mental health therapist, and he said he hadn’t even seen anything like the spreadsheet I had prepared. And that’s when I mentioned that the spreadsheet might place me on the Autism sprectrum. And he chuckled. And gave a slight nod.

Data doesn’t lie. It might not have all the answers but it doesn’t lie. Numbers, charts and data bring me solace. Solace amid the chaos of life.

My mental health therapist asked me why my last appointment with the shrink-by-proxy had hit me on an emotional level– and I realized that her responses to me, very standard responses based on the average person, had suggested that she had reached the end of her ability to try and understand me and had made her judgment about who I was.

As a woman with a disability who has always been quirky and outspoken, I don’t get to fade into the background. I will always be noticed, remembered and the person who sees me will have an opinion about who I am and what I stand for. Or what I am capable of. Or what is wrong with me.

So I lean on my team to reassure me that I know what I am doing. And I have always used therapy as a way to organize my thoughts, my priorities and make a plan to improve, and apparently I do that in a way that is much more “buffered” than the standard. My therapist mentioned that today, and I wonder if some of that is the storyteller in me, automatically relaying the tale in a more palatable manner.

But my therapist also pointed out that the psychiatrist’s office’s assessment that I may need to deal with my past trauma more may not be entirely accurate– and he admitted that he is not a trauma therapist so he can’t really say– but that in all the time he’s known me he’s never heard me say that I had a flashback of a traumatic incident, or that it came up during a recent part of my life. This also adds more complexity to who I am.

In the end, I wonder, will my primary care provider prescribe a test run with Adderall if only to allow me a few days to track the results? Because this exploration has done wonders in giving me fresh perspective. What if my intermittent symptoms of depression are actually burn out? What if my “anxiety” is an inability to set one task aside while doing the other?

More to think about. More to understand.

Well, Zoloft was a wild ride

Angel Ackerman Leave a comment

I took my first dose of generic Zoloft yesterday at 11 a.m. I know that’s late in the day to in start an SSRI, but it was a fairly quiet day and I knew I wouldn’t get to bed before midnight. I figured that would give me plenty of time to test how well I tolerated it.

And this weekend is the Easton Book Festival, and I have tabling events and a panel. So I need to have my wits, my strength, and my charm.

I took 50 mg and forgot to eat, so I got immediately nauseated. Knowing I had a long day ahead, I made what we call an “ooey gooy egg sandwich.” I fried some peppers and tomatoes from my garden in Irish butter, added two eggs and a big heap of nutritional yeast. Meanwhile, I toasted two slices of Eva’s homemade garlic-infused bread and put a slice of smoked gouda on each side and ran it under the broiler.

The nausea did not end. I managed to keep it under control by minimizing what I ate and what I drank. Because even liquid gave me trouble. And the diarrhea started fairly immediately. And occured every couple hours,

Mentally, I had less creative spark but not the fatigue that often accompanies the drug. I did feel calmer, but that changed later… I thought everything was manageable.

I went to bed around midnight as I expected. Woke up wide awake. And it was dark outside so I looked at my watch. I hoped it was around 5 a.m. so I had enough time to get some good sleep before the alarm went off. But it was 1:15 a.m. And I was more awake than I usually feel in the morning. I got 90 minutes of sleep. None of my normal techniques for falling back to sleep worked. At 1:50 a.m., I went to the bathroom. I didn’t really need to. But I thought the walk down the hall would show me how tired I really was and I would go back to my bedroom and get some sleep.

Didn’t happen. It scared me how awake I was. And for some reason, I decided to groom my pubic hair. That killed some time. And then I thought I’d go down to the kitchen, make some Valerian tea, and then while that steeps, file my toenails. I’d drink it and go back to bed.

At 2 a.m., I start the tea. Do some chores and my belly starts gurgling. Loudly. Uncomfortably. File my toenails. Drink my tea. Watch TV. The tea makes my nausea come back full force. I almost buy an Apple Watch series 12. Mine is a series 8.

I feel the tea relaxing me so I head back to bed at 3:30 a.m. I toss and turn, realize I have hurt my shoulder sometime, and play with the cat, and repeat. At 4:15, I give up. I go downstairs and get ready for the book festival. At 5 a.m., I get dressed.

By 8 a.m. we head to the book festival, while in the car I realized I have been wired since 1:15 a.m. and that I’m still wired. This is how I expected Adderall to feel.

And I still have diarrhea. And coffee makes me sick. But I’m also calm. Eva and I describe it as my emotions being forced into a bottle, corked and put under pressure, with a layer of calm on top not letting them through, My weakness is my ankles and knees is worse. I fell after the book festival. I have eaten a Gobbler bowl from Wawa and had about 10 ounces of liquid before 4 p.m.

At 3 p.m., I fought the urge to vomit and managed to succeed in not puking. At 4:15 p.m., I was not so lucky. I barely made it to the bathroom in time to find myself puking in the toilet. I had last eaten at 9 a.m. and I was violently heaving and croaking like a frog. When I stood up, I realized I had pissed myself.

I told Eva and M– no more. I refuse to take even one more dose. M told me he didn’t often weigh in on people’s drugs but that this one is poison and I obviously can’t tolerate it.

“Stop taking that shit,” he told me.

I looked up how long the half-life is of this damn drug– single dose can last two to three days!!! So I looked up how long the side effects last if I stay on the medication. It says in most cases they abate in two to four weeks. Weeks!!! Aw, hell no! I do not tolerate lack of sleep. I struggle enough with emotional regulation so if I also did not sleep for a month, I would have a psychotic episode.

Now, I will accept that part of this is on me. I did not think to tell my new shrink-by-proxy that I am a lightweight when it comes to medication (which is part of why I am troubled by my increasing use of baclofen. I have gone from 5 to sometimes 20 mg in a dose, and 3-4 doses in a day without relief). When they put me on a beta blocker after my incident of Afib, I could not get off the couch on the dose they gave me. They told me to cut the pill in half and I was fine. Same thing happened with the sodium channel blocker. (Neither of those are still in my medication routine, so while my life insurance company has deemed me uninsurable, my cardiologist has deemed me healthy.)

I see two options: I text my doctor in the morning something like “I tried the Zoloft over the weekend. One dose. Bad side effects. Stopped.” Or I could call my shrink-by-proxy and explain what happened. Either way: I am NOT participating in any more medication roulette until they give me either a true ADHD test or a trial dose of ADHD medication. If the medical establishment is willing to play with my well-being with these ridiculous experiments, they can at least try the medication I tried and tolerated well.

It’s now 6:30 p.m. I still haven’t eaten since 9 a.m. but I have had a glass of water and about 24 ounces of electrolyte water.

Meanwhile my spreadsheet is looking wild. Because I am tracking it all.

Diagnosis by Subtraction

Angel Ackerman Leave a comment

I understand the complexity of modern medicine, and I also understand the ridiculousness of it. One of the greatest advancements of the twentieth century was the discovery and use of antibiotics to cure sickness and disease. With that, came more people and more people who live longer.

As someone with a congenital disability, only alive on this earth because of modern medicine, I say what I am about to say with much deliberateness: The modern world offers more opportunity to more people to live, and live better, but there is always a lingering “God power” in the relationship between physicians and patients. So many factors determine who lives and who dies. Resources and access hold tremendous sway. These two concepts overlap. Resources primarily translate into money and support. If you have money to buy healthy food, prevent stress, and pay for services and devices, you will lead an easier life. If you have support, which can be financial, familial or interpersonal, you have more opportunities to receive help. If you have money and access, that means you have transportation to appointments, therapies or grocery stores, and that they exist near you with the services you need. It’s not only about if they can accommodate a disability. Resources and access and sometimes luck (or God if that is your belief) decide who lives and dies. And as we can treat and improve quality of life and save so many more people with so many issues, it brings up the question of who determines what constitutes acceptable quality of life and how the severely sick and disabled can interact with an increasingly technological and not natural world?

I know and recognize that if medical professionals hadn’t “done everything they could” when I was born prematurely in 1975, I would have died. It’s why my mother named me Angel. If you didn’t know the origin of my name, there you go. I was supposed to die. And my mom– who was 21 years old at the time– wanted God to give her little baby a place in heaven.

Shrink’s office vs. therapist

I wrote my post yesterday immediately after my doctor’s appointment, wanting to preserve some thoughts of how I felt in the moment. Well, today I am here to tell you about the rest of my day. After that appointment, I spent three hours fighting anxiety. I did things, and I did what needed to be done, but the whole time, the physical sensations of anxiety filled me: thoughts that would not settle, the back of my neck hot, it felt like my heart was racing when it was not, my chest was tight, and my mood was difficult to regulate.

Then, I called my therapist– the same one that my shrink-by-proxy suggested I should be seeing more regularly, and her comments made me wonder if she was implying that he didn’t do a good job and it was his fault I was in the state I was in because he didn’t see me more regularly. I have been seeing him for 15 years, and he knows how much I’ve grown. I’m okay. And folks– when you have a diagnosable psychiatric condition, one of the criteria is that the symptoms interfere with your ability to function. And folks, if you know me, you know I might not always be the most stable, but I always get the job done. I never have trouble getting out of bed, I approach each day like the wondrous clean slate it is. It’s just a question of how long it takes me to lose my optimism. Sometimes, it’s a few minutes. Sometimes, it’s a few hours. Sometimes, it’s a good day.

When I called my therapist, I called the wrong number and could not leave a message. I did not realize my mistake, so I wanted an hour and tried again. Still no luck. So I emailed. He emailed me back about 90 minutes later. He reminded me of the correct number, so I texted. He called me back. I asked if I should make an appointment.

“I’m happy to schedule that,” he said. “But I don’t know. We’ll put it on the books and if something changes you can always cancel.”

And although I had emailed practically everything, I told him why the visit had upset me.

“It’s not the issue of the medication,” I said. “We both expected that. It’s that she told me to make a budget and stick to it. That upset me, and I think perhaps I visit with you will help keep me from getting upset at my next appointment.”

“She gave you conventional avdvice that would work for most people,” he said. “But she doesn’t know you, and she doesn’t know how unconventional you are in just about every area of your life.”

And what she doesn’t know, we discussed, is how successful I have been at breaking the generational cycles that run in my family. How I have avoided addiction, gotten an education, never had to endure domestic violence and bought a home, all while also contending with a disability. In my case, success can be measured by what I have avoided in addition to what I have achieved.

My therapist continued talking: I have asked myself many times over the years, he said, if I have done right by you, if I could have pushed you harder. But, he continued, I think if I had, I would have pushed you away. You would not have come back. You took what you needed from each of our sessions, and you worked with that, and came back when you needed more.

“You know what you need.”

I was getting teary-eyed at this point. He warned me that I won’t fit in anybody’s neat, little clinical checklist. He warned me that psychiatrict’s “add, they rarely substract.” And I believed him and proceeded with caution. And in that phone call yesterday, he reminded me that I could “politely decline” their medications and their suggestions. That my decisions, as unconventional as they are, are rarely (if ever) wrong. And that I know how to pace myself. (Which is a funny statement since I don’t pace myself in life– I do too much all the time. All the time. Which is a trait that points to ADHD.)

I will try the Zoloft. Who knows… It may help. My past experience with Lexapro suggests that an SSRI will take the edge off, but will it give me the calm, the peace, the increased circulation (which all relaxed my muscles and not only improved my mind, but my mobility)?

I understand– even if I do not understand and agree– that the medical process often diagnoses by ruling out vs. solving a puzzle, but I find it counterintuitive to suggest that my response to this SSRI would rule out serious psychiatric conditions, while no one has given me an actual test for the condition that may be the true problem (despite my experimentation with a medication, which, if their process involves judging the response to medication, shouldn’t the date from our family’s experiment also be valid?).

Eva, on the other hand, plans to download some psychiatric tests from the databases at school and administer them to me, and send me to my next appointments with them in hand.

The week of Oct. 26-30 I have FIVE appointments: Monday, therapist. Wednesday, annual visit to neurologist/psyiatrist. Thursday, shrink-by-proxy followed by primary care physician (who has not heard about any of these recent events from me). Friday, chiropractor.

Speaking of the chiropractor, Nicole (my chiropractor who used to be a physical therapist) believes I may need physical therapy. I have been thinking the same thing. Especially since now I have met my deducatible for the second time this year.

PS– When I first met my therapist, I had extreme anxiety connected to my finances. I needed my accounts to be at certain figures. I needed to know where every cent went. (I still do.) I searched for value. I made purchases based on usefulness. I was so extreme that I would not buy food that I deemed too expensive or not nutritionally dense. I would not buy things because I liked or enjoyed them.

Now I do more things because they bring me pleasure.

This is part of why the comments about needing a budget bothered me– because it felt like she was denying me pleasure and implying my incompetence. If you know me, you know, I plan everything around the budget. That’s part of why I rarely vacation. I won’t vacation if it costs more than $500.

The Day Has Come

Angel Ackerman 1 Comment

In the early days of exploring how to stop the fire raging in my brain, I mentioned that I firmly expected to be prescribed an SSRI.

The day has come.

I handed it my complex spreadsheet to my shrink-by-proxy, and the surprise on her face said a lot. The doctor had already made his recommendation based on the assesments from last week– so I’m not sure I understand the point of collecting all that data.

He gave me a choice of taking 50 mg of Zoloft for 2 weeks, followed by increasing the dose to 100 mg for two more weeks or doing six weeks at 50 mg.

They are concerned about my scores on the screenings for anxiety and depression.

If we could have ended the appointment there, I would have remained agreeable, even though several of the potential side effects of this drug could make other symptoms worse. Apparently, one common side effect is drowsiness and fatigue, something I currently struggle with due to my history of anemia. And dizziness, great for someone with a history of orthostatic hypotension. It may cause shaking and tremors, and my hands already shake. And it could cause problems with my sleep and sex drive. And I’m a monster if I don’t get my sleep.

But I’m willing to do their experiment…

But I got angry in the appointment and had to hold back my reaction. My practitioner went into therapist mode, and suggested I should be in regular therapy at least once a month. I know and understand my issues, I told her, but I struggle to get past the reaction I have to my triggers. And I told her about how I woke up in a wonderful mood but it quickly disappeared when I saw I got my paycheck. It was exactly what I expected but it still made me anxious and I had to look at all my finances. Yet, I helped my daughter buy a new vacuum without a second thought (because she agreed to pay me back by buying groceries– which I tend to not do because everything is so expensive).

She suggested I make a strict budget and adhere to it because it would make me feel better.

If any of you know me, you know how ridiculous that it. I have lived under a strict budget that goes six weeks out for the last 25 years.

And now I’m angry for the first time in weeks, not frustrated or overwhelmed, but angry.

I don’t know what happens next, but I am feeling a tad misunderstood, which is common in our medical system and I will have to have more patience and wait it out and prove my point with data, not emotions.

No one is even considering that on the four times I took Adderall, all of those symptoms went away, and I slept better than ever.

They won’t consider that until they rule out anxiety disorder and major depressive disorder.

The Dave & Buster’s revelation

Angel Ackerman 1 Comment

My Sudafed is wearing off. These last two weeks of severe allergies have been exhausting and maddening as I drown in phlegm. I took my Zytrec, my Flonase and Sudafed this morning.

I learned at 9:15 a.m. that in order to make my 11 a.m. social commitment at Dave & Buster’s, I would need to accompany Eva to two clients and sit in the car from 9:45 to 10:45.

One thing about me: I can be really flexible, but once plans are made, I don’t handle change well. I am slow to recalibrate my thinking in the face of change. I had already threatened to back out of the social engagement, but now it was too late, and I would be a jerk if I had said I was going to be there and then not show. There were a limited amount of tickets, and someone else could have gone if I decided not to.

I love Dave & Buster’s, but I don’t do well in social environments. So the promise of some of my favorite arcade games– including a version of Hungry Hungry Hippos where you sit on the hippos and have to shovel the balls in their mouths– forced me to go. And more often than not, I force myself to social engagements despite social anxiety because I want people to know that I would like to support them or spend time with them.

And sometimes it can be fun.

At this point, Eva looks at me, and somehow we get to the idea that I could use a dose of Adderall. “You’d be doing me a favor,” she said. “I haven’t taken mine in more than a week, and I shouldn’t take a whole one for my first dose.”

So we split it.

By the time we got to the arcade (and I got to pet some dogs on the way), I was calm and not antsy about things. Eva came along to play some games with me, and I noticed they had removed my Hungry Hungry Hippos. I played some games, had some food, and even asked one of the teenagers to play Mario Kart.

Now, here’s the interesting part:

I struggle playing video games. My heart races and I get really anxious as if the games had real stakes. I’m really uptight about it. And Eva doesn’t like to play with me, because I’m too competitive and I get grumpy when I don’t.

Today, I played Mario Kart and enjoyed it, without stress, carrying no physical angst of the competition. I didn’t care if I lost, and even more shocking, I felt nothing when I won.

I felt no different whether I won or lost, either way it was just good fun.

It’s almost 5 p.m. now and my blood pressure is 110/69.

Overwhelming

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I slept really well last night and woke to a hungry cat lying beside me with anticipation in his eyes. That’s a great development for a cat that spent four years under my bed.

A few minutes after I woke up, I heard a young man speaking very loudly. I thought maybe he was walking and talking to himself. But the sound didn’t move. I looked out my bedroom window, and the young man stood in the middle of the street, gesturing quite animatedly and practically dancing with his mannerisms and yelling. At 7 a.m. on a random, rainy Sunday morning.

By 7:10, the first police car rolled up. At about 7:15, the second arrived. About 7:30, a third car arrived, and the young man reluctantly got into it.

So after that opening to the day, I opened my bedroom door to go take my shower and got ambushed by Touch of Grey, the adorable menace cat. She intimidates Canyon, the cat who lives under my bed, and I had to turn on the Roomba to extract her. When I returned from my shower, the Roomba had gotten itself stuck under a chair.

I came downstairs and grabbed the remnants of Friday’s iced latte from Plants & Coffee. Came to my desk and updated the spreadsheet I am keeping for N., my shrink-by-proxy. (For more explanation of that, it’s mentioned here. If you want to start with the beginning of my journey to explore whether or not I have ADHD, click here. And fun fact– there is a valid reason to label me neurodivergent already as I have cerebral palsy which means my brain doesn’t work normally.)

By the time I reach my desk– okay, if I’m honest I would say by the time I finished getting dressed– I am stressed. I have a social event later today at Dave & Busters. I knew when I signed up I was pushing myself outside my comfort zone, but I love Dave & Busters.

But I worry I will be the oddball in the group and not have a good time because none of my people will be there or that the people who will be there will have other people who they want to see.

And I also worry I will eat the wrong food and struggle more with my weight. I have gained three pounds recently.

I have given up on any sort of order in my life. It’s been that way for the last six months or so. Several of the things I thought would create order in my home have happened and yet the disarray still exists and I can’t fix it. And I can’t blame anyone other than myself. Let me explain.

The house is a cluttered mess. We reorganized the kitchen. Never finished the job.

We created an office for me to work in. I never finished putting stuff away.

Every room in this house is a mess.

I haven’t put my laundry away in months.

My desk is a mess– and I could fix that in ten minutes. But I don’t.

I am terrified to continue these projects/start these tasks because I worry I do not have the emotional or physical energy to finish them.

Meanwhile, tomorrow is my workshop with Laurel Wenson on The Creative Power of Journaling as part of the Easton Book Festival. This weighs heavily on my mind. I sat down to organize my final notes and in the hour since I wrote “Easton Book Festival Prep notes” in my journal, I have looked for one missing computer files, packed some pens to take to the workshop, wrote this blog entry, and haphazardly scribbled down some notes. Because I’m really struggling to focus.

And I finished the sugary latte that has made me shaky.

More assessments and more unmasking

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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.

GoodTimes

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I often walk over to Easton Hospital to do my regular bloodwork. Yesterday, I walked by the new GoodTimes coffee shop in the basement of the building at 20th and Fairview in Wilson Borough. I had noticed the work going on in the space over the summer before they opened and was very excited to see what actually opened in there.

Someone recommended them on a Facebook local group and I found their Instagram page. I learned they have an Aussie influence like my good friends at Pie + Tart and that they are open early mornings for the most part now. Which is great for me, because I am often out and about at 7 a.m. When Eva was young, this location was close to one of our favorite trees on 20th, across from the unused parking lot. I wonder what would have happened if this coffee shop existed when I was walking the neighborhood kids to (and from) elementary school twice a day.

This location is on what was our regular route, because I usually walked the kids down Ferry, to Ferry and 20th, where one of the neighborhood boys had a grandparent, up 20th to Lehigh, so that we would then walk past the hospital, and then the final block to the elementary school was up 21st. That way the kids, if they walked the route alone, could easily be found OR have a safe place to go in an emergency.

I have this fantasy now, of imagining myself carrying my own backpack and stopping at the coffee shop once I deposit the children at school. I could read a book, journal, or have my own quiet time…

But alas… the schoolchildren are all in their 20s now.

When I walked by this place yesterday, I saw a man standing outside with a reusable shopping bag at 6:57 a.m. I thought, “Wow! They have a line before they are even open.”

A woman came out, opened the door, and let him in.

Later that day, I was at the restaurant (wearing my super-awesome, blinking, floral crown because it was Glow-in-the-Dark night. It was around 8 p.m. I think. I was the person delivering food outside, which I normally don’t do. And honestly, I am still a little unnerved that I was put on this position for 5.5 hours with teenagers and young 20-somethings who lolly-gagged and made me do all the WALKING. I walked about 14,000 steps in less than four hours, OUTSIDE in TRAFFIC as someone with a mobility disability prone to falls. Why would you think it’s a good idea to send a fall risk unattended into a busy parking lot? For hours?)

A man in a black truck accepted his food from me and asked, “Hey! Did I see you this morning at my coffee shop?”

So we had a brief but pleasant conversation and now I’m supposed to stop in for a free coffee. I offered to bring him a free book.