Category disability

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.

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.

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.

Not looking for a mental health diagnosis, I’m seeking understanding and relief.

Angel Ackerman Leave a comment

In many common injuries, and with certain illnesses and diseases, clear trajectories and treatments exist/are followed. I think in reality, nothing is ever that simple due to all the quirks that make us all the people we are.

Last year, I asked every practitioner on my care team how they felt about Valium.

Even on my beta blockers and other blood pressure medication, my heart would have these periods of elevated heart rate, even as my blood pressure was under control. And when physical circumstances coincided with these events, such as muscle pain and discomfort from too many hours at the restaurant, I would find myself taking triple my normal recommended dose of baclofen. And it didn’t relieve any of it.

So, I wondered if a low dose of valium could be a breakthrough med to relax my muscles and my heart rate. But no one on my team was comfortable with an experiment like that. I got on a list to speak to a psychiatrist. A year later I am still on that list.

A recent experiment with a dose of Adderall showed that I may respond to stimulants and/or that I have a touch of ADHD. I set up appointments with my therapist and my doctor to discuss. I got a referral to a new in-office case manager who can work with patients and report to the psychiatrist so family medicine can prescribe medication.

Earlier this week, the case manager who works for my primary care p behavioral health matters called me. She said she would talk to the psychiatrist whom she works with on my behalf, but already in that initial conversation, some of my complexities popped up.

She called me back Wednesday morning and asked if I could come in that same day or Thursday as she had time scheduled with the psychiatrist Friday. The psychiatrist recommended some screenings to give us some more information and a letter from my current therapist — whom I have been with for the last 15 years.

That in itself is hard to believe.

So God Bless him, he wrote me a letter and emailed it to me. With minimal notice.

I walked into my primary care physician’s office and, because this case manager is a new addition to the staff, they have her tucked in this odd, closet-like room in the back corner of the practice. Which had no windows. And she lit with a tiny desk lamp. Which might make some people feel cozy, but I kept thinking, “We are in a closet. In the dark.”

I screened higher than I would on the depression screening. (Which today I would do significantly better on because my good mood and hope is back– so of course that led to a mood disorder screening, which suggested I might exhibit some bipolar symptoms.) I scored “high” on the anxiety screening. And I do show symptoms of ADHD but not enough for formal diagnosis and no clear childhood presentation.

Remember– I didn’t receive medical treatment between ages 5 and 21. Except for physicals and immunizations required by law for public school and those were administered by a semi-retired doctor around the corner who only accepted cash. And this was in the 1980s: things were different.

“Did your teachers or counselors notice anything?”

Ummm… schools for GenX did not have counselors. Remember all those memes that circulate around January 28: They put a teacher on the space shuttle, shot her toward the moon, and every school age child in America watched her blow up LIVE on television. Then, they shuffled us back to our classrooms (because at my school we watched it as a group in the multi-purpose room like an assembly) and pretended it didn’t happen. I was in fifth-grade. I was almost 11-years-old.

I think every GenX (and Boomer child) understood that we were expected to sit still, do our work, get good grades, and if we didn’t the school and/or our parents would punish us– and the school could even hit us if necessary. My parents never hit me, but my mother was/is the queen of silent disappointment and perpetually pointing out individual flaws. My mother dropped out of high school, but she never hesitated to make her first statement about my report card to be about the lowest grade.

“Why did you get a B+?”

A B+.

Couple that with the childhood trauma I lived with at home– slight food insecurity, sporadic but frequent domestic violence events or risky behavior from my parents, alcohol abuse, etc.– school was my safe place. My teachers nurtured me, educated me, (sometimes even fed me and protected me) and listened to me. I would have done anything to make sure my teachers would not be disappointed in me.

So I was the perfect student. But I talked. And I often spoke inappropriately. And despite my good grades, I struggled with studying. Repetition and lots of notes are still the only way I can learn new things.

And the organization issue? Developing systems not to forget or overlook things? I had a very unpredictable household. I had to keep myself together. And my mother loves everything clean and in its place– if I left something out of place in the common areas of the house, my mother would pile it on the stairs for me to take to my room. And if I didn’t take it up, she would nag me. And if I still didn’t take it up, she would. And when she did it, she would often clean and reorganize my room while I was in school.

And if we’re looking at my borderline results for ADHD and comparing them to other brain issues, we have to consider how symptoms of depression and anxiety overlap with ADHD. And how especially adult women get treated for a mental health condition when the issue stems from neurodivergence. So am I manic– or am I hyperactive/hyperfocused? Am I depressed– or am I in a burn-out phase? (And I would add how do these correspond with hormonal cycles. When I was traditionally ‘fertile,’ I had great mood and energy, when I am approaching menstruation, I crash.)

And fatigue is also a symptom of everything. I have a history of anemia, which causes fatigue. I have a chaotic sleep schedule, which interrupts my routines and causes fatigue. I eat primarily vegetarian vegan and my B12 is on the low side of normal, is that causing fatigue? I perpetually overschedule myself. This causes fatigue. I think if depression were causing my fatigue, I would be more prone to not get out of bed. I always drag myself out of bed on time.

So, in the end, it sounds like this case manager wants a mental health history of my biological father to be the determining factor on the ADHD issue. Problem is he’s been dead for like twenty years. His ex-wife whom I knew for all of the time I knew him, also dead. My biological half-brother, I’ve never spoken with them. The few people who friended me on Facebook who share his last name and said we are family– I’m not even sure who they are.

And then there’s the issue of trauma.

I have experienced a lot of different types of trauma from the unstable environment of my childhood, a period sexual abuse by my grandfather that could have escalated had I not made the decision to avoid him, and multiple experiences in hostile work environments. (One boss who randomly fired me after recuiting me for the job to hire a friend, One boss who threw things at me. Another who made me constantly fix her personal failings. And the final one: she was an all-out tyrant.)

I even mentioned to the case manager that I had spoken with my therapist on one point about why I ended up in so many of this situations: Was it me? And the case manager rephrased some stuff I have probably heard before, but didn’t really make sense until now: You will be more prone to ignore or not notice red flags. And that made total sense. That‘s how people end up repeating cycles. You can’t recognize the subtle signs and once you are knee-deep, you rationalize, as in “the devil you know.” Or, in the case of some family cycles, the child of a drug addict might think some overconsumption of alcohol and behavior related to that is okay, because it’s “just beer.”

Note that none of this addressed the fact that I also live with a mobility disability. And my medical issues– which I am considered prediabetic now and had gestational diabetes. I have always had a strong reaction to sugar and less reaction to caffeine and alcohol. And I also react to certain chemical flavors. (I would love to find out if I react to Red 40.)

As a woman with a mobility disability, I will be extremely hesitant about any SSRI that list side effects as weight gain– I have worked really hard to lose 12 pounds and need to lose at least 20 more. This is not due to vanity. This is due to risk of Type II diabetes AND the fact that more weight will put more stress on my body that already struggles to move.

Anyway, the case manager is meeting with the psychiatrist today to discuss my case notes. If I had to guess what they will suggest, I would say they will probably try to treat my anxiety with an SSRI and refer me to a trauma therapist to explore PTSD. And I suspect they may hint at depression, or even bipolar, expecting to treat it with whatever SSRI they pick.

But I think the constant interplay of some behaviors being driven by rumination or compulsion (“I must do the dishes if the bin is full”) and my avoidance of minor, personal tasks (I struggle to put my laundry away, every time, and I’ve never developed a system) and so many other things like:

  • focusing on projects I like to the extent that I won’t stop until I’m done
  • struggling to start projects I don’t like and giving in to every distraction
  • doing several things at a time and sometimes leaving some half-finished (moving into my office)
  • lacking proper mood regulation
  • obsessing over procedure, routine, documentation and details on items I deem important
  • missing details or skipping steps on things I cannot get emotionally invested in
  • writing down tasks in 5-6 different formats while doing them as to not forget and to not worry about forgetting
  • sharing and writing down important or “pretty” numbers
  • food issues: aversion to textures, difficulty motivating myself to eat or eating too much
  • inability to recalibrate when faced with unexpected change
  • must redo entire household financial plan 30 to 60 days out every time a purchase more than $100 is made or if receiving income in that range
  • pausing in the middle of simple tasks to complete a more appealing task (I picked up my phone today while putting on flip flops and left my foot half-inserted into the shoe. A flip flop!)
  • monitoring medical information more than necessary (Blood pressure: sometimes once a week, sometimes three-times a day; Weight: at least twice a day.)
  • unable to ask for help and will instead take on large projects and complete them alone
  • feeling worthless when I do not meet my goals, no matter how big or small
  • high level of rejection sensitivity
  • always making decisions based on my “gut.”

These make life/diagnosis complicated.

I have spent about two hours on this post. It is 12:30 p.m. I have not eaten yet today. I need to pee. Because of the SEVEN medical appointments I had in the last two weeks, I am behind on some projects due Oct. 10.

And tomorrow I have a business road trip.

And Sunday, I am meeting new friends for tea.

So I need to get shit done…

Meet the Dogs

Angel Ackerman 4 Comments

Yesterday, I met the dogs.

Today, I woke up from a terrible anxiety dream for the second time this week.

The first anxiety dream had me working in the newsroom again and I was behind on stories because of my other jobs– and I missed a council meeting because of job conflicts. I considered quitting one of the other jobs and remembered the newspaper hadn’t paid me in a long time. (Yeah, about 18 years.)

This morning I woke one minute before my alarm from a dream where I was traveling, and I was attending some sort of Asian-themed conference in France. I suddenly found myself without plans for dinner and thought I would visit a nice restaurant. And at the last minute, I remembered my traveling companion M was in the hotel. I opened my phone to text and invite him and none of the apps would give me his number. I took out my iPad (I last had an iPad when they first came out, it was a first gen) and it wouldn’t work either. And then some guy tried to steal my iPad, realized how ancient it was and gave it back to me.

And then I got up and walked to the hospital for my bloodwork.

This is what happens when you overschedule, have been life events, and stuff happening.

So, I came to the magic table at Panera to write down my thoughts about the dogs.

We left around 11:20. It’s a 90-minute drive to Grantville, where Susquehanna Service Dogs has a beautiful training facility. Our appointment was for 2 p.m. but when traveling long distances for important appointments, I leave wiggle room for traffic, accidents and construction.

On this particular journey, we always stop at a certain Sheetz before Route 81 that we never remember where it is until we almost miss the exit. We stop here because it has a wall of icee and smoothie flavors. On this particular day, this is extra important because Eva has an ear infection. It is the same exit for Eva’s favorite Girl Scout Camp, Wood Haven.

We always think maybe we’ll stop somewhere else or visit something, but there’s not much out there.

But Eva got her icee. I probably should have gotten gas, but that place is always crazy. I still haven’t gotten gas, and that’s on my mind.

We arrived at the facility early. I checked my email and answered some business messages. We got out of the car and went to the building at 1:45 p.m. We went into the classroom at 2:05 p.m.

I met a whole panel of employees. Many of whom I’ve met before, some were new. The head of the agency was there. Everyone had tablets and paperwork. They asked me about my health, my life, and we reviewed all the tasks that I requested.

And then we got to meet some lovely yellow labs.

This process is long, and weirdly precise. They’ve had several weeks of people meeting various dogs. And they take notes on every interaction to try and match the person with the right dog– personality, energy, brains, willingness to do the tasks needed. If I match with one of these dogs, they will tell me I matched in about a month. But I won’t be told which dog. They train the dog for your jobs before they tell you who it is. Because it could happen that a dog couldn’t learn an important task, or that another dog was better for it. Or maybe a dog completely washes out of the program.

There’s a lot of moving parts.

And as someone who’s worked with animals my whole life, volunteered in cat rescue and dealt with/helped rehab difficult cats, and learned about dogs and dog training from my daughter and her business (and I inadvertently trained a chicken alert dog!), I get it. I trust them to know their dogs and to stand behind their work.

I met four dogs. They use the information from those four dogs to weigh options in the future if this doesn’t work out. So even if this doesn’t come to fruition, it helps get me to the best dog possible.

And man– looking at these videos I feel so old and frumpy. I hate watching myself walk, and I had frumpy even more.

I did attend the session with no muscle relaxers in my system after a long car ride. I wanted that dog to interact with me when I was more prone to need help.

Dog 1: Marlin

Three out of the four dogs were large and male and from the fish-themed litter. Marlon was the name of the local police officer who would come break up the fights when my mom and dad would have violent fights.

He was big, but not huge. He did his job well, had his basic obedience down. His only interest was food. He didn’t really want to interact with me socially, he actually back away a few times. But he did what he was asked to do. When we walked together, his heel was a tad drifty.

Dog 2: South

She was the oldest (by two weeks) and the only female and from the Wanderer litter. South is also cardinal direction associated with fire and creativity, but I can’t pick a dog on my witchy ways. At first I thought her name was Sal, then I thought Sol, like Sun. But when they said it again, I realized it was South.

Angel, a trainer, and SSD South

She had a bright pink collar. That’s my business color. And when I touched her– she didn’t feel like a lab. She felt soft. She was like a stuffed animal I wanted to cuddle. She came out and greeted me. And she was excited to meet me and interacted with me more than looking for food. She prances when she walks. She has a really nice gait. When we didn’t tell her to do anything, she sat down and focused on the treat pouch. When we still didn’t ask her to work, she flopped down on the floor and waited.

And she was small. Compared to the boys. I liked that about her. Some of the trainers said some people found it hard to treat the smaller dogs because you had to reach down. And her heel was tight– so much that when my treat pouch shifted she followed it. And because of that I thought I was failing her, when it reality, the treat pouch had moved. And when we were sitting and it came time to treat her, she patiently put her head in my lap instead of getting pushy like the boys.

They asked if I could take a dog home today, fully traied, who it would be. I said South. Eva said South.

Her small size would make my life easier with the strange and crowded types of public access we might encounter. And there’s a good chance this dog will end up on a plane or at the very least a train. But her mellowness when we weren’t working is great for my office days. And I believe the incident with the treat pouch shows she can walk on the right. That’s the main task we need.

Dog 3: Skip

My father’s brother was Skip. So another dog with a name from my past. And another fish. He was massive and a drooling mess. And I was told he was not a candidate, but they were giving him a chance to learn and practice by meeting me. He had me covered with drool. He was the biggest dog. And he had so much energy and pushiness. And he struggled with basic commands.

Dog 4: Pike

Smaller than Skip. Bigger than Marlin. Another fish. High energy. But fairly patient and responsive. If I needed a big dog, he would be my choice.

Am I Alice? The White Rabbit? Or the Mad Hatter? Or the Queen of Hearts?

Angel Ackerman Leave a comment

Who doesn’t love a good mystery?

Anyone who deals with serious medical issues has experienced a sense of Wonderland. Is your regular life Wonderland? Or is the medical system Wonderland? Who is Alice? Who is the White Rabbit leading Alice down the rabbit hole?

We all have a lifetime of experiences. Some good, some bad. Some of us got “good” bodies, some of us have bodies we hate. Some of us have learned to accept our bodies. Some of us work really hard to change our bodies.

Some of us want to understand. Some of us want only to survive.

All of those things are okay.

We all have Alice in Wonderland moments.

It’s been a couple of weeks since my daughter, who has ADHD, floated the idea that she inherited the ADHD from me. It’s been one week, almost to the minute, since I took 10 mg of extended-release Adderall to test her theory, at least to give us data on if the drug brought me up or down. And the answer was down, pointing toward something not neurotypical.

And as you will see later in this entry, one of the stumbling blocks to determining what exactly my brain needs– whether that is treatment for ADHD, anxiety, depression or nothing– is, as my daughter would put it, I mask so hard even I don’t see the problems.

I have always been extremely organized, and I forgot nothing. And yesterday, at my second doctor appointment of the day, the clinician got out the standard short ADHD screening and asked the questions related to inattention. I don’t have a problem there. But I am realizing more and more, I write everything down multiple times. I write in my journal, on my paper calendar, on post-it notes, on my electronic calendar, in this blog. I write down when I take my medicine. My blood pressure.

And this morning– I went to blow my nose. Allergies are hitting in full force and Eva has an ear infection. In the middle of blowing my nose, I put the tissue down so I could take a Zyrtec before I forgot. I do not remember if I took the Zyrtec. I did not log it in my phone. The cap is off my water bottle, but did I take the pill?

Could my “obsessive” habits, like checking my bank balance several times a day, be not a form of soothing my own anxiety but something I do to prevent myself from missing something?

And even right now, as I write this, Eva has interrupted me and the entire train of thought for what I was writing completely disappeared. I had to reread the whole paragraph and reconstruct what I was trying to say. Is that normal? I’m honestly asking. So before I get too much more ahead of myself, let’s talk about yesterday.

Yesterday, I met with my longtime mental health therapist. I wrote a quick entry yesterday about that visit, posted it, somehow managed with a same day appointment with the practice who handles my everyday care, realized that the post was worse than I thought it was, and so I took it down with the intent to do a better job with new information.

And here we are.

Some observations from that appointment with the therapist who started treating me for anxiety more than 15 years ago. (That seems crazy. It can’t be that long. It just can’t.)

  • My individual complexity may prevent a simple diagnosis/solution. My history of childhood trauma and neglect, my family history of addiction, substance abuse and domestic violence. My physical disability (to which he adds “never discussed nor treated). So my brain could be doing anything for any reason. I believe this is why I’ve developed many of the habits I have that are masking how I feel on the inside. Whether we attribute this to ADHD or anxiety, that is part of the mystery.
  • Even looking back, with my history of doing and achieving all the things and doing them pretty well, it would be difficult for a clinician to trace this back to my childhood. Childhood presentation is one of the required elements for an ADHD diagnosis. (But, again, I was dealing with a lot of things, things I didn’t understand… from my body and my environment.)
  • My therapist theorized that if I have ADHD, I may have inherited it from my biological father. And that was a lightbulb moment for me. The first time I met him, I was

(I picked up my phone while typing this. I have no idea why. Got lost scrolling Instagram. Put the phone down. Realized I was in the middle of the sentence. And don’t remember what I was saying. So I distracted myself?)

  • … impressed by the breadth of his creativity and the projects he undertook. But I also remember that he had decided to remodel the bathroom and had never finished the one wall. It was still primarily the framing. Functional. But no real wall on the inside of the room. And when he and my mother split up, he went with his dog and lived in a cave in the woods until it got cold. Then it built a shelter. And when he and his wife split up, he left in his pickup truck, with his dog and a duffel bag and moved to the midwest. Where he got a job at Russell Stover chocolates.
  • My therapist can provide a letter of support to my primary care provider, and he reminded me that it didn’t matter the diagnosis if we could find a treatment that could bring relief. (And my therapist and doctor know each other so that helps.)

Now, I know “euphoria” is one reason people who don’t have ADHD take Adderall. And I’ve taken other types of medication: Lexapro for work stress and then depression (which helped in that “take the edge off” kind of way); beta blockers to control my heart rate (which failed); and Ativan for panic attacks (great, as long as I just wanted to come down and not do anything for the rest of the day). When I took Adderall, it wasn’t euphoria– it was the sensation of being able to let go of the adrenaline, the sense of doom and the constant muscle tension and being able to effectively regulate my emotions because normally my emotions also stress me out because I can’t do anything to work through them. I could on Adderall. If anything, that is what I want. I want that.

I asked my therapist: What would you recommend as my next steps? Since I have not been able to get past the waitlist for a psychiatrist, should I make an appointment with my family doctor?

I went home and called the office.

(Right now I am sitting here, forcing myself to finish this because it’s important. I need to pee. I’m very hungry. It’s 9:22 a.m. and my daughter and I are leaving for Susaquehanna Service Dogs which is sooooo exciting and stressful and… but if I don’t do this now I will not do as good of a job if I do it later and I don’t want to forget a single detail because the details can mean the difference between finding answers and getting the run-around from the medical establishment. This is how my brain works.)

I was offered an appointment with my regular provider October 13 or I could see another doctor in a couple hours. I took the appointment in a couple hours. I knew nothing would get resolved quickly, but wanted to position myself “in the system” to get the process working. That’s the hardest part of the medical system. Positioning yourself to get access to physicians and presenting the case with evidence, not anecdotal experiences.

That was why I started with my therapist. While he’s the most expensive provider on my list of medical professionals, he was the most qualified to give an opinion. Offering his opinion, based on our experience of 15 years, will hopefully show this is a legitimate possibility and not just a drug-seeking behavior. I specifically work with this therapist because he is a Ph.D. psychologist– I wanted someone who could help me grow as a person, not just medicate my brain. I have done a lot of worth in those 15 years, but recent years have shown me how much I fight myself and that I could have a chance at actually slowing down and enjoying more of my life, not just frantically surviving it and celebrating sporadic moments. Because in my brain, nothing is ever safe, or enough, or helps me overcome the doubt and doom.

(Okay, I need to get up and pee now. I’ve had 10 ounces of coffee and like 24 ounces of water… Be right back.)

(Hi, me again, I stopped to look in my protein bar basket. I should eat something. My belly hurts I’m so hungry. I have these blueberry breakfast biscuits that taste nice but don’t have any real protein. I also have a cookie dough protein energy bar from Aldi that is high in protein but full of chemicals, sugar and preservatives… I can’t decide. I have them both on my desk. I really want a piece of toast, but then I need to find and decide on bread, wait for it to toast. I should make an egg sandwich, but that is a whole undertaking of cooking. I guess I’ll open the breakfast biscuits… The taste bad. They usually don’t taste bad. And they smell weird. Are they spoiled. “Best if used by August 2025.” Did I mention I tend not to eat food I like because I might want it more another day? And then I panic that it’s not the best day to eat it? And now I’m sad that I let them spoil. Like really said. But honestly– they were Dollar Tree biscuits. So now I feel bad that I feel bad. I don’t need to beat myself up that much.

Now, do I eat the protein bar? Because I do not want to eat now. I threw out the biscuits. But I put them in my office garbage can. And the dog often gets in that can. Maybe I should empty it. Yes, let me do that quick. BRB. Again.)

So the doctor. She’s a great doctor. I mention that my daughter, and I both use the practice and my daughter does have ADHD. I tell her that I know we won’t have answers today, and I don’t expect that but I would like to start investigating this. She listens attentively and we explore the classic short ADHD. I have the anxiety-laden portion of hyperactivity impulsivity but not much else– and I ask her– I probably do fidget, but I have a spastic muscle disorder that means my legs cannot move. So how do we know? And I have similar I don’t know answers to some of the other questions. The test is inconclusive. She mentions other SSRIs. And that Wellbrutin has shown to improve symptoms of ADHD that coexist with symptoms of depression but it makes anxiety worse. And then she adds, “so that would be a bad idea for you.” And she wonders if I should try other SSRIs.

Her plan becomes three-fold:

  1. Get the letter from my therapist.
  2. Book an appointment with my regular doctor ASAP because he’s a busy guy. (Did not expect that.)
  3. She gave me a referral for a behavioral health case manager. This professional should be reaching out to me to prepare my case for review by a psychiatrist. It sounds like she does the evaluation, makes notes and gives them to the doctor so I can get medication through primary care… or through that psychiatrist. It’s a program designed for people like me who don’t have dangerous behaviors or immediate needs. And reduces the waitlist problem. That people never get off the list.

(I don’t want to write this anymore. I am forcing myself to do it. Just so you know.)

I leave the office. Hear from Eva that she got antibiotics for her ear infection. I email my therapist but then decide a phone call is more expedient and professional, so I call. He leaves me a voicemail a little later that we will get the letter together. And then the funny part– my actual primary care doctor comes to the restaurant, drives up to me in the drive-through, and chuckles when I ask what name to put on his order. He knows nothing of what I have gone through this week, or maybe he does, but I don’t think the other doctor finished her notes yet.

And that’s where all that stands.

Now if you’ll excuse me, it’s cold this morning and I am debating making a can of Spaghetti-O’s for breakfast.