Tag life

I have a big pencil

Angel Ackerman Leave a comment

I bought a gorgeous shepherd’s pie that I haven’t had time to eat.

That was the original first line of this blog entry that I believe I started Wednesday morning. It’s 48 hours later. The shepherd’s pie has been cooked and enjoyed for several meals.

I’m struggling today– I’ve felt on edge and pressured since I woke up from a nightmare which counteracted a good night’s sleep. And Oz posed for this adorable photo and then spilled C4 all over my desk. And deleted most of this blog entry. He’s almost 16 years old, and he is such a pain in the butt. But he’s a living, breathing stuffed animal so everybody loves him.

Saturday Morning

Here we are again… I now barely remember why I started this post… I thought I had exciting updates and with each day that passes, they seem less urgent.

Urgency plays an important role in my brain, in my life.

I do things with urgency or I don’t do them.

That’s what my recent journey has shown me.

I could comb my journal, my paper calendar, my random post-it notes… That would give me a sense of what might have been on my mind. That’s why I update this blog, to record the things I don’t want to forget, to have the in-the-moment memories. I found a reference to the fall where I broke my teeth and realized it happened it 2011, not 2009. A small difference but an important one. Anemia was 2009. Broken teeth was 2011.

Wednesday

I had an unusual free Wednesday morning as Nan and I were speaking to Gayle’s class at Northampton Community College on Thursday. I did laundry. I cleaned my email box that had been piling up for most of the autumn if not August, too. I am still maintaining that obscene spreadsheet tracking my moods, my blood pressure, my sleep, my food, my medication. The shrink-by-proxy social worker had asked me to make a four-column list October 7, and I don’t think they ever reviewed the data. I printed it out for my final follow-up and she never had a chance to look at the volume I compiled. And I’m still maintaining it. Because what if someone could use it? What if I can learn from it? One thing I have confirmed– my erratic sleep schedule and lack of consistent quality sleep contributes more to my anxiety than anything else.

One of my students in my Wednesday afternoon class said she “had me pegged” as someone with ADHD on the first day of class “But I don’t have the authority to hand out diagnoses.” I love my students– and this one in particular would get along fabulously with my daughter. Her project on blended families has a lot of potential… and she’s got true academic spark.

A quirky nerd after my own heart…

I received a text message from my primary care doctor’s office at the end of the day that they faxed my referral to the neuropysch practice I wanted to see for testing. It’s the same practice that formally diagnosed and treats Eva’s ADHD.

Thursday

10 a.m. meeting with a dean and a professor from the community college. They have a promising little book project and wanted a sample of my class content: how to vet a publisher and what to look for in a publishing contract. They got my red flags list, my discussion of how to analyze a publisher’s product, and a lesson on contracts and book math. I get energized by these conversations– especially after some of my recent proposals to the department were shot down and dismantled by some folks who didn’t even attend my presentation and came to their own conclusions. Political behavior exists everywhere.

In the afternoon, as soon as I had packed my purse, my books and my laptop into a plastic storage tote (Sterilite 15 quart) for the presentation at NCC, I recognized a number on my caller ID. It wasn’t a number from my contacts, nor was it a number associated with St. Luke’s, but I knew it looked important. So I answered.

It was the psychiatry practice. I had less than five minutes before I had to leave, but this was a call I did not want to delay.

“We have a referral from St. Luke’s for anxiety,” the woman on the phone informed me.

“Not exactly,” I replied. “I was looking for some testing to see if I have ADHD.”

“What makes you think you have ADHD?”

My mind blanked. “Well, my daughter thinks she inherited her ADHD from me…”

And then all sorts of random potential ADHD behaviors vomit forth. Including the spreadsheet (that was a Google doc so they could see it)… and the manic episode on Zoloft… and then, as it sounded like she– this poor individual who talks to people and compiles paperwork– might want to diagnose me with something… she asked:

“Do you see anyone now?”

And I told her about my 15-year relationship with my psychologist.

“Oh, I know his wife,” she said.

And I mentioned that she’s a physical therapist, and the woman on the phone confirmed that, and then I said that because of that my psychologist helped with my cerebral palsy, which is part of what makes my case a little complex, and that I also have a history of childhood trauma.

“You have cerebral palsy?”

“Diplegia spastic in the lower extremities,” I responded. “It’s mild.”

And reflecting now, I realize I never told her how my psychologist recommended I add a physiatrist to my medical team. And I don’t even know what else I did tell her.

Then, she asked for my insurance information. I told her I was on my way out the door, and that I answered the phone because the number looked important, and that I was bringing a friend to give a lecture at the community college, but that my daughter already used the practice so they had the information on file. She looked up Eva and copied the information from there.

The whole phone call was seven minutes.

The lecture in Gayle’s class went great. We planned to go to Wawa and get our annual Gobbler bowls but we didn’t have a place to go sit and eat them so we thought we’d try Sheetz’s Thanksgiving offerings, but despite having signs all over the restaurant, the app told us our store didn’t have the Thanksgiving stuff.

I picked up Nan, and we hooked up NASA+ in the car so she could listen to the spacewalk.

Nan got a bowl of mac and cheese (with chili), hot chai and an apple pocket. I got the Big Mozz and a dirty coffee coke. I have not had full sugar coke in decades… I was going to get a smaller sandwich but I think everything at Sheetz has the same number of calories.

That brings us to…

Friday

I spent yesterday an anxious mess. Was my sleep impacted by all that grease and sugar? Is that why I woke up anxious and half-dead with high blood pressure?

Yesterday was tough, and I found myself doing things required in the future versus things that should be done now. I wanted to do some simple things I don’t like that I had been avoiding. And I didn’t.

But Eva made the old recipe for Bok Choy salad– and she was very skeptical. But it was yummy. We used the greens from last weekend’s cover shoot.

And then I met with my psychologist. Often we end up chatting more than all-out therapy because I have a good sense of what is happening and why, but I struggle with so many outside influences trying to put me neatly in boxes that I need someone who knows me to confirm that my logic is right.

And then I went to the restaurant. Where I had one of my favorite positions, but I spend a good deal of the evening anxious and bored. And then I moved to a station where I do okay but can challenge my tendency toward urgency and my distaste of chaos, but for some reason last night it really fit. I excelled at both work centers, or so I think. And Eva came in for ice cream.

And now it’s Saturday. Have a great weekend.

Choosing what to treat, what to fix, and how to do it

Angel Ackerman Leave a comment

I went to the dentist on Tuesday.

I switched dentists last year after an approximately 35-year run with my former dental practice. I met the owner of that practice as a teenager when she had first graduated from dental school and moved with her when she opened her own practice. I stayed with her her entire career and when she retired and sold the practice… I found a dentist closer to home.

In May 2011, when I was finishing my second bachelor’s degree at Lafayette College, I was walking home from taking Eva to school when I tripped and fell about three houses away from home. My chin was the only thing to hit the sidewalk. I was bleeding profusely and spit out a tooth, so I immediately called the dentist.

Fun fact: This blog started in 2013. So none of this adventure exists online. I cracked several teeth, learned that the one I spit out was only half a tooth and that the other half was still in my mouth, and that I needed stitches in my chin. And that the dentist’s staff was very impressed I had not broken my jaw.

I remember that fall like it was yesterday.

I didn’t eat solid food for six weeks after that fall, surviving on yogurt and soup and smoothies. Darrell and I made the most amazing cheesesteak soup, where we seasoned tomato soup to taste like savory sauce on a cheesesteak, added the appropriate cheeses and Darrell sliced cheesesteak meat razor-thin so I did not have to chew it. Here is the recipe.

After my final filling to my damaged teeth and my weeks of tooth repair, the family and I went to Red Robin where I ordered the chicken salad sandwich on croissant. Still soft. And I spit out my brand-new filling.

I think that is the same tooth that my dentist wants to crown now– and if it is, it’s the same tooth they were never able to get a filling in until the dentist who took over at my old dentist. He insisted he could repair it, and he did. But it was painfully sensitive for months afterward. And that experience was one reason why I decided to find a new dentist.

Before this fall, I had great teeth, and a trauma dentist told me my strong, healthy teeth prevented worse damage with the fall, and that I was very lucky.

But I don’t exactly like going to the dentist now.

And now some of those repairs from almost 15 years ago need repairs. And I don’t want any more crowns. I have one crown on a back molar and an implant crown, both from the fall.

The suggested repairs will cost me out of pocket about $500.

The repairs were caused by my mobility disability. Society doesn’t often consider the associated risks of disability. Or how everyday occurances, like a brief bout with high blood pressure, can impact us in a different way. High blood pressure can change your balance, and my balance is already compromised. Exercise is good, and walking is a great way to have low impact exercise, but when you are a fall risk, walking can be dangerous.

I used to weight train. I spent a lot of money at a local gym, and I loved every minute. Physical therapy is expensive, so the gym was cheaper. But life changed and I don’t go to the gym. The changes in my body have been proportional to my lack of full-body strength training.

I called the physical therapy office last week as I now have an active referral, have hit my $3,500 deductible (for the second time this year, but that’s another story) and am not that far from my out-of-pocket max. But the physical therapy schedulers have not called me back.

If they do– do I schedule physical therapy and hope the co-insurance doesn’t bankrupt me? Do I fix my body or my teeth? And not to mention, I’m in the pipeline now for an appointment with neuropsychiatry– what if insurance claims that’s not medically necessary? What if it’s a choice between my teeth, my body or my mind?

Sure, every medical professional out there thinks their specialty is the most important, but as a disabled woman with limited income I have to make choices every day that balance how much energy and how many financial resources I have against the item most detrimental to my health.

And sometimes teeth that should be fixed don’t top that list.

And those teeth wouldn’t need fixing if I didn’t have cerebral palsy.

I am not a superhero

Angel Ackerman Leave a comment

I have been trying to write this blog entry since late Thursday– and I have failed to find the time. Each time I approach the task, I find I have a new take on what I want to say.

I have lost my footing.

Eva warned me it would happen. I don’t understand it, and I can’t articulate it well. The closest thing I can say is that I realize that had rigid systems in place to keep myself together, and now my atittude toward those systems is more fluid. That leads me to have a more flexible approach to those systems, making myself believe I can function without such structure, and my productivity falls apart. Or, perhaps another way to put it, the more I recognize the patterns and behaviors that drive me, the more I interrupt them. This makes me calmer, but eradicates my ability to get work done.

Or very simply: I work like I’m in the midst of a manic episode or I don’t work at all.

Yesterday I started realizing all of this, and I thought, “I am not a superhero.”

I don’t know if that makes sense to anyone else, but in that moment, I broke down and cried recognizing that all the jokes other people had made about my capacity to do all the things were true. That is was not normal to approach work with the urgency I did/do. That I performed at some ridiculously high frequencies, that weren’t healthy, and I don’t know if I can do it anymore.

My superpower has always been innate time sense, and I feel like fading away.

One of my dear friends sent me this email responding to a blog post from earlier this week, which I am quoting here for future reference in my own world:

I have no doubt that adderall works for you; there’s a different level of calm in you when you take it. It’s hard to describe from an observer’s point of view, and many might not see anything different, but in borrowing your own image of the filing cabinets, it’s like instead of all this frantic opening and slamming of filing cabinet drawers going on in your head, with some files just landing in the air or on the floor, instead there’s a different set of office workers calmly opening and closing drawers as they file thoughts and ideas away — productively and with a quiet focus, but still getting the job done faster and more efficiently. Not sure that makes sense, but I think those closest to you notice it.

This morning I received another email from a friend who works in the psychological field who, unbeknowst to me, has been reading the blog. She commended me for my willingness to embark on this journey on this potential disaster train.

To top off my adventures with potential undiagnosed ADHD, I reached out to an old friend about some emotions I’ve been having– yesterday was my 27th Wedding Anniversary after all and my estranged husband seems to have really found himself (I am truly happy for him)– and the old friend and I ended up in an argument which made me cry more, right after I got this email from Susquehanna Service Dogs:

Thank you so much for joining us for your Meet the Dogs session and also for your patience as we conducted additional evaluations. I’m sure this waiting period has not been easy.

After reviewing your session and our evaluations, we have determined that there is not a tentative match in the group of dogs that you met.

So friends, that means South and I did not match. I have to trust the process on this one. South was adorable and soft, and smart– which means that hopefully all the future dogs I meet will have the features of Ms. South, and that if I loved South, I will find the future matches even more of a fit. On a practical level, it’s a relief that the process has been delayed. The reality of taking a month off during the college semester, right before the Greater Lehigh Valley Writers Group Conference that I chair, and when Canyon, the cat who formerly lived under my bed, has made such progress… it’s a lot. I don’t think I realized how close to having a dog I was, and once I get that match I have four months to prepare financially. That means I will lose income, empty my savings account and add a member to the family with minimal time to prepare.

On a medical level, this disappoints me. I have been struggling lately and might be so bold as to say I have been in a period of decline. My neurologist put me in for physical therapy, and if I can get on their list before the end of the year, I will do it, but the reality is I can’t afford to do physical therapy once my deductible resets.

Today Eva and I went to the Nazareth Farmers Market to hear the delightful Larry Sceurman tell Halloween stories… Hopefully, that will be my tale for tomorrow. We also went to Barnes & Noble yesterday to look at the planners, and we each bought one. That should be an entry.

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….

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.

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.

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.

GoodTimes

Angel Ackerman Leave a comment

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.

Let’s talk about fidgeting (and diagnosis and disability)

Angel Ackerman Leave a comment

My daughter– the one diagnosed with ADHD and mild social anxiety– and I were discussing fidgeting. I told her that I have realized more and more that I fidget more than I ever realized.

“Mom,” she said. “You fidget more than I do.”

“I almost wish you could come with me to my appointment Thursday, because you and I have the same symptoms, but I really think they’re going to want to put me on an SSRI. Why do you get Adderall and I get an SSRI?”

“Because you are disabled.”

I must have given her a confused and shocked look.

“I am a white woman. You are a white woman with a disability. You are even further away from the standard white man. No one likes comorbidities they don’t understand.”

So, I’ve been thinking about fidgeting.

Whenever I wear jewelry, I constantly play with it. I resumed wearing my Celtic knot pendant before I traveled to Ireland in late March. I have been spinning it, touching it, and putting it in my mouth several times an hour.

When I wore a wedding ring, I spun it. And since I stopped wearing it, I rub my fingers where it used to be.

When I wear earrings, I turn them. When I had a nipple ring, I turned that, as long as people weren’t looking.

I run my fingers through my hair.

If I touch my nose or my eyebrows or my ears, I struggle to stop.

And I take notes, lots of notes. More often than not, I have a notebook and several pens in my hand. And I take photos. Of everything.

I don’t sit still well. Professionally. Personally. I excel at jobs that require sorting, organizing, finding and planning. I live life like a chess game– planning moves and tasks before they happen. Funny part is, I suck at chess. I can’t get the strategy planned out far enough ahead.