I am not a superhero

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

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….

GoodTimes

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.

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

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

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.

Do I need to put on clothes today?

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

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

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

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

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

Just not what I intended.

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

Why Aldi? I wanted chicken salad and shelled endamame.

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

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

I did not want to get dressed. Until later.

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

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

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

“Your blood pressure is great,” he said.

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

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

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

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

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

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

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

Is Nurse Jackie an unreliable narrator?

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

Interesting thought.

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

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

My response is typically that it doesn’t matter.

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

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

My parents were alcoholics.

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

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

Strange food for thought.

The Medical Refund I Didn’t Ask For

I keep promising myself that I won’t let this blog anguish and fade into nothing, and then I fail. If you miss me, check out Parisian Phoenix Publishing on the web or social media or sign up for my weekly-ish Substack newsletter. (Which you can do here.)

While I keep intending to do more jovial hometown adventures and life updates about the cats, the bird or the dog, it doesn’t happen. (We have TWO dogs this week as we have a jovial mutt with us as a boarding client. He’s a joy to be around, and he’s such a confident and stereotypical dog compared to our depression-prone backyard-bred pit mix.)

Eva’s dog has received a custom muzzle as a safeguard against her fear-based reactivity. And the difference it makes in our ability to trust her with new dogs and people and her comfort while wearing it is amazing. If you have a dog with issues, a custom muzzle is a game-changer.

But today I want to talk about what happened when I returned from Ireland regarding my emergency room visit two months prior. And I might sound like a conspiracy theorist, but it is what it is.

I have a high-deductible, employer-sponspored health plan through my husband, but as we are separated, I do not ask him to use his HSA. The HSA absorbs a lot of those out-of-pocket expenses. And my husband’s employer gives him money for the HSA as an incentive to take the high-deductible plan.

I have done the math. As a family, we have had the high-deductible PPO plan for 20 years. It sounds scary at first, but the monthly premiums are way cheaper than the other plans and the PPO allows us to see any doctor we want when we want, and when you have chronic issues, that’s important. I briefly had an HMO in the late 1990s when I had never had any health insurance before and no real medical treatment post age five, and my primary care doctor sent me to a podiatrist who specialized in ankles for my gait issues because he was pretty much the only provider in network. He told me there was nothing anyone could do without finding a provider in a major city.

And by the way, he was wrong.

If you don’t know, a high-deductible plan means that the insurance company pays nothing of any of your expenses until the deductible is met. In my case, that’s $3,500. BUT, my out-of-pocket maximum is $5,000 a year.

The ER Bills

As you may recall, (if not here it is: the original post and the ortho follow-up) in early January I had a fall and I debated between going to the ER or the urgent care because of my history with afib after bodily trauma… I was not in afib, but I did break my thumb, which has not fully recovered.

That fall led to about $800 in out-of-pocket orthopedic specialist bills and about $3,000 for the emergency room. Now, I use AblePay which allowed me to schedule payments for these services and gain a cash discount. For the ER bill, I opted to pay more than $2,000 in one lump sum of my American Express because it allowed me the largest discount. I then used the AmEx PlanIt feature to schedule that into monthly payments for a fee instead of accruing interest. In the end, I didn’t save money but it allowed me to space the payments.

But then… randomly, a full month after I paid 100% of the ER bill in a lump sum of on my credit card, my insurance company (Capital Blue Cross) decided to renegotiate the bill– which remember, they did not pay. I did.

I did not know this was happening. I was less than $200 away from my out-of-pocket maximum for the year so I scheduled regular chiropractor appointments and a mental health check-in with my therapist. The chiropractor appointments help me not twist my body into weird contortions that further cause complications from my irregular gait, and since my chiropractor Nicole was originally a physical therapist, she helps me stretch and monitors my gait to make sure my feet “do feet things.”

So, while I have debt from the ER visit, I can now have chiropractor appointments every other week for a small coinsurance amount ($40). And that is a huge help to my mobility.

On a Friday afternoon, I get an email from AblePay and a notification from AmEx that I had a $1700 refund on my recent medical bill. Which sounds great, right?

I logged onto Capital Blue to see what was going on, and indeed they had renegotiated my bill, which rolled back my previously met deductible and out-of-pocket maximum. And I had two chiropractor appointments and two therapist appointments that I was now responsible for. That’s about $700.

And I know what you are thinking, that still leaves me $1,000 ahead. But oh no it does not. Because remember, I had only paid one payment of my planned credit card charge. So the whole refund went to the charge, and I still needed to pay the remaining several hundred.

I negotiated a payment plan with my therapist and canceled all my upcoming chiropractor appointments.

I wish I could tell you that was where the story ends.

Present Day Repercussions

When I was in Ireland, I walked a lot more than usual. A lot more. As it was a relatively last-minute trip, I didn’t have a chance to try and get myself in shape. So I attributed the discomfort to my out-of-shape-ed-ness and called it a day.

But I am experiencing problems again. For the last week, I have been experiencing increased muscle pain in both my legs. My left leg usually does not hurt. My right leg always hurts. Like every day, I experience at least a pain level one but typically two or three. It’s like there is a braid of muscle that splits the back of my thigh muscle and presents with a constant pulsing, ache. But increasingly, my calves are experiencing extreme, painful muscle stiffness, in both legs, and my knees hurt.

My flexibility is better than usual, and I have no problems with my back, but if I touch the floor, it kills me to straighten my legs.

And this morning, after a week or so of this, and several days of feeling like my legs aren’t attached to my body when I walk, I started to cry. I caught myself, but I still started to cry. I took an extra dose of my baclofen– at double strength, and that made the calf pain go away. But I’m struggling to use my legs. And I’m getting damn tired of it.

I have tried to find and label what muscle hurts, but I can’t.

I suspect I need physical therapy. I have tried to take short but regular walks, making sure that I hit at least 5,000 steps daily, but I think it’s too little too late, and my muscles have forgotten how motion works. This winter was hard, long and cold; and with my part-time fast food job laying me off, I don’t stand and walk as much as I have during the last year.

But that leg pain I refer to as a braid? That started shortly after Stitch Fix closed. I think because I went from a job where I stood eight hours a day to a sedentary job. That’s almost three years of the same pain. That has now intensified.

So, why don’t I call the neurologist?

Because she costs $220.

And if she wants tests, I can’t afford those.

And If she agrees that I need physical therapy to stretch out and retrain muscles, that’s thousands of dollars. It sounds ridiculous. That a six-week physical therapy session would rack of thousands of dollars, but when I broke my ankle, which was TEN years ago, that cost me $5,500. That deductible and co-insurance adds up.

This is when I miss my Medicaid.

Becuase I work hard, everyday, and I just can’t afford the treatment and maintenance that would improve my quality of life.

And it sucks.

To make a choice everyday to deny yourself care you need.

Because of money.

And I believe– and maybe I’m wrong– that Capital One renegotiated my ER bill because I hit that out-of-pocket maximum and they didn’t want to pay my upcoming bills.

Our health care system, specifically for-profit, employer-sponsored health insurance, sucks.

It’s broken.

Day 2 of my Spring Break: The National Zoo with my daughter

Last night didn’t go exactly as planned… there was a horde of children ages 5 to 8 and even kids in arm floaties in the hotel pool loudly playing Marco Polo at 8:30 p.m.

So Eva and I got our massive can of bar nuts out of the car and watched Treehouse Masters on HBO Max. Apparently, that’s one of her favorite shows from middle school that she used to watch when she slept over at her grandmother’s house.

Departing DoubleTree

We got up this morning and headed to breakfast– which made Eva very excited as they had a nice selection of bread and smoked salmon. I found it rather mediocre, but perfectly serviceable. It was not included with the room, but I paid for the add-on, so it was $25 for the two of us.

The server was delightful, and when I asked him about my breakfast with the room, he asked for my coupons, which they did not give me when I checked in. We went to the front desk and got them. He was very attentive and tried to find Eva dill pickles when she requested them, and he must have thought he succeeded because he brought her a very substantial pile of more bread and butter pickles.

Now, if I had to leave a review for this particular Doubletree, I would give it a three out of five stars. Do not compare this rating to any guidebook or official system. It was a decent hotel. It also smelled amazingly clean. But there are a few things that disappointed me:

  • They charged me twice for parking. I guess I’m going to have to sort that out.
  • They forgot my breakfast coupons.
  • They did not have towels in the pool area, despite stating we did not need to bring ours from the room.
  • The rooms seemed small.
  • My past experiences with Doubletree felt more full-service. More amenities, more things to do, better dining and room service, which this hotel did not have.
  • They had specials at the bar advertised that had ended three days prior.
  • The refrigerator didn’t seem very cold.
  • In general, I don’t like the coffee at Hilton. Especially the coffee left in the room.

We did not stick around so Eva could take her swim, and digital checkout (and parking right next to our room) made leaving a breeze.

“Hurry up!” Eva told me. “We have relaxing to do.”

I do lament we could not try the taco truck across the street as it had very good reviews on Google maps.

We checked the oil in the car, and at 9:15 a.m. we headed to CVS. We purchased an eclectic variety of items, not because we needed them on this trip but because we were curious what selection they might have. And they had soooooo many hair products for my curls and I had coupons…

We left CVS at 9:36 and arrived at M’s house at 10:15. By 11, we were in the car because Eva wanted to visit the National Zoo.

Smithsonian National Zoo

The Zoo parking was full, so we set the GPS for M’s old apartment and decided to try our luck at the back entrance to the Zoo. Eva found a spot on street that we thought was nearby. It ended up being almost a mile, and an uphill walk. But we certainly got our steps in!

But we did get to see this beautiful mural of Marilyn Monroe. We passed a Nando’s.

The Zoo was crowded. It was also everything Eva remembered. She spent most of her time commenting about the habitats and how well the zoo provides enrichment for the animals.

The exertion made my walk a tad unstable and I experienced some exercise-induced asthma and some high heart rates. Probably got some sunnburn too.

And then Eva got the idea maybe we could leave from the back of the zoo and not have to walk back up the hill.

We could not.

We were also pleasently shocked to see how many alcoholic beverages were available at the zoo– and how many moms with open cocktails were chasing toddlers.

We left the zoo at 2:45 to return to M’s house. We stopped at Manhattan Market for beverages. And I showed M my DK travel guide to Ireland from 20 years ago and my Irish/English dictionary.

Day 1 of my Spring Break: Harrisburg, Pa., and Gaithersburg, Md.

Eva and I are traveling to Washington, D.C., so that I may grab a flight to Dublin with my traveling companion M on Wednesday.

M. and I have not traveled in about a decade, and this is probably the first time we are traveling someplace where they are not shooting each other.

But that’s another story.

Eva is on spring break and for some strange, serendipitous reason, she has no pet clients this weekend. She’s exhausted after finishing her home renovation project on our hallway.

I could have taken Amtrak from Philly to D.C., as a matter of fact that is how I am getting home. But Eva wanted to visit D.C., and thought it might be nice to visit the National Zoo. She had hoped she could introduce her boyfriend to our friends in D.C. but he is traveling to a welding competition.

Now, Eva didn’t want to make the 3.5 hour one-way trip to D.C. and then turned around a few hours later and drive home alone.

But we learned none of our friends would be home Saturday until late.

So we booked a room at the Doubletree in Gaithersburg, MD, basically because they had a breakfast, an indoor/outdoor pool and who doesn’t love the warm cookies?

And Eva never had the warm cookie experience.

So at 9:30 we checked the old in the car– she’s an old girl and has been acting a tad funny lately about her oil. It disappears and then reappears. Maybe she has some build-up. We know she’s burning some… but to be safe, we check her often. And today we checked her cool in the flat garage

She looked good. But we have oil with us just in case.

We headed to Sheetz, and by then I already needed to pee. Eva put gas in the car. I hoped to find the cookies and cream puff things but every since I decided to try them, they never have that flavor.

Next, we went to Grocery Outlet. I need my famous $7 pen set. This cheap set of gel pens comes in a plastic case and I love them. Each set lasts about 6 months before my favorite colors start running out.

Meanwhile, Eva was in charge of road trip snacks. She selected:

  • 2 C4 energy drinks in zero sugar, very fruity flavors. I find these are easier to stomach than coffee or soda when temperature can not be maintained. Plus we both like them so we can share, and save space in the cupholders.
  • A present for someone’s birthday that has nothing to do with this trip
  • sunglasses
  • A massive can of bar mix nuts
  • A fairly big box of those nutty buddy style wafer bars that Little Debbie makes but instead they were made by Nature Valley and trying to be fancy. 20 of them.
  • A bag of beef jerky– some plain, some ranch, some buffalo, all mixed in one bag

We were on the road by 10.

Around 11, we got a phone call– the dog had bit the neighbor and the neighbor went to the ER. Now, it was a minor bite, but it broke skin, and the neighbor wanted to make sure he didn’t need shots/antibiotics. But that’s another story. But it sure did put a stressful spin on the next couple hours.

At 11:30, we arrived at Midtown Scholar Books, once voted bookstore of the year by Publisher Weekly. See my review here on the Parisian Phoenix blog. (It was $4.35 to park for 90 minutes in downtown Harrisburg.)

Eva had a doctor appointment via Zoom at noon so she took that in the car and then we visited Broad Street Market. Apparently, oldest market in America in continuous operation. We weren’t hungry– all those road trip snacks but they had all kinds of ethnic food from Chinese (I think) to Korean, Jamaican to African.

1 p.m. We crossed the state line into Maryland while on the phone with Larry Sceurman.

At 2:10 we arrived at Doubletree Washington DC North in Gaithersburg MD (about 40 minutes from M’s house). We got our cookies and our parking pass. We didn’t really need our keys because I used Hilton’s digital check-in, chose my room and they had emailed me that it was ready and activated my digital key which I can use from my phone.

I picked a room on the end of the lower level, away from any noise but fairly close to the indoor/outdoor pool.

And there’s a frozen yogurt vending machine in the lobby.

Panera and CVS are within a third of a mile and there’s a food truck in the shady looking parking lot across the street that has good reviews on Google Maps. I wonder what time they open in the morning… They don’t… the internet says they are closed Sundays. I might have to head out there tonight…

Eva and I went to Habit Burger and Grill because it was three-in-the-afternoon and we were hungry but not insanely hungry and while it is a chain, it’s not one we knew. I saw it had a free self-serve pepper bar with jalapenos, banana peppers and pepperocini. So we had to investigate.

I had a nice fish sandwich and limeade.

We came back to the hotel and I did some stuff for the business while Eva did some schoolwork. We plan to go swimming tonight.

The misadventures with the curb that hates me (and the anniversary of my father’s death)

On Thursday night, I left my very part-time job exhausted. Eva had asked me to come pick her up at her father’s so he wouldn’t have to leave home again. I made a wrong turn on the drive I’ve made 1,000 times– and almost got lost.

I wasn’t wearing my good glasses. I didn’t have my readers and the perscription was a couple years older than my current one, but they were the glasses that best matched my outfit and I didn’t expect to be driving outside of my normal routine.

And then I reached the hill at the intersection 13th, West Lafayette Street and Bushkill Drive.

I hit the curb at this intersection fairly often; I think a lot of people do. Knock on wood– it’s the only thing I usually hit.

I last hit the curb in September 2024, causing a bad flat. This was about two days after I drove by myself from Atlanta home in one day, 13 hours! Without incident.

I couldn’t have been going that fast because I’m fairly certain I had stopped at the light. But somehow I not only hit the curb, I think I drove over it.

The tire pretty much exploded.

I pulled onto the side of the road and texted my daughter to contact AAA. She and her father came and Eva attempted to change the tire herself, and she got all the nuts off. But she didn’t have a good enough jack for a car parked on ice on a hill. And she didn’t chock the wheels.

So after the car almost rolled over her arm, we waited for AAA.

Eva took the car to Mavis the next day and as we knew, the tire was shot. But we… no, I mean I… bent the wheel rim.

I called the Volkswagen dealership and they said it would take 4 days to get the part. And I thought to myself, I have a 2015 Jetta. There’s got to be a million of them in junkyards with perfectly good wheels.

That was my dad’s voice.

So Eva called the Hubcap store, and an hour later we found ourselves in West Easton in their industrial park facing a perimeter-guarding goose and an ominous gate.

If you look at the photo, there’s a small triangular roof behind the garages. That’s where we needed to go.

And the building had a sign up at the crown of the roof but not on the door.

And when we walked in, they had our Jetta wheel rim on the floor. It was $175. I had $100 cash in my wallet that I intended to take to the bank and put the other $75 on my Amex.

And then Eva went to Mavis and made an appointment to get the wheel mounted the next day.

And then we had a snowstorm. Which Eva handled like a champ with our crappy spare tire

Eva returned to Mavis the next day and two tires (another tire had a bubble) and $415 later we had all four tires again.

Now it’s almost midnight on Monday, on the day by dad died four years ago, and I find myself wanting to tell him so badly:

You didn’t even have to tell me and I found a wheel rim for my car.

Or maybe he was with me all along.