Everything Wrong with America

I miss my more carefree days– which didn’t seem carefree, until now, when I have several appointments after each 8-hour workday in the warehouse, health issues to sort, a job hunt and debt to pay. Life is never simple or easy for most of us, but 2023 has, for me, felt like eternal optimism and hope while being bludgeoned. I get my proverbial sh*t together, and something outside of my control decides to parachute into my life.

When Stitch Fix announced closing the Bizzy Hizzy, they scheduled all sorts of guests and workshops for us as displaced employees. My separation date is September 15, so I have four more weeks, or two more paychecks, depending how you look at it. One of the workshops Stitch Fix hosted, and paid us to attend, was a visit from the state “Rapid Response” team to explain how unemployment and career services from the state work. They handed us a booklet that told us how to survive our layoff. (Surviving a Layoff: Your Guide to a Soft Landing and a Smooth Re-entry by Harry Dahlstrom. Mr. Dahlstrom, I’m sure you’re a very intelligent and likable person, but your advice is written for middle class Americans with two cars and their own house.)

“Remember that emergency fund with three-months pay stashed away…” Oh, Mr. Dahlstrom. Do you not have a child going to college this fall? Or medical debt? Or a used car that needs constant repairs? Or a teenager whose car insurance costs $500/month because of an accident? That’s just me. Others might have a disabled or unemployed spouse, student loans, bad credit that led to predatory loans for everyday items… or maybe they just recently got this job and had been using their credit cards to survive.

“Reduce your thermostat to 68 degrees.” Oh, Mr. Dahlstrom, mine has been at 64 for two decades.

“Trim your entertainment.” I don’t have cable. I don’t have any streaming services (though the Teenager has Spotify, which she pays for, and she also bought HBO Max and made for the year upfront.) I don’t even have home internet, relying on my phone’s hotspot and public connections. I think the last time I went to a movie was two years ago.

“Prepare a weekly menu” and “put back 10 percent of the things in your [grocery] basket.” Oh, Mr. Dahlstrom. I spend $250 on groceries for myself each month, that does not include the Teenager as she buys her own groceries. And I do get coffee or a donut out, which adds up to about $25 a month, which I consider reasonable as, as you mention, I search for discounts.

Other advice includes: “collect old debts,” “turn unwanted things into cash,” “change your lifestyle,” and “bring in the paying customers” using a talent or skill. Because my half-a-double home that I pay about $900/month for is full of useful items? I haven’t even had a vacation in about five years. And my talent? It brings in about $150/month on a good month.

“Unload the family jewels.” Mr. Dahlstrom, I’m so frugal I wouldn’t even let my husband buy me a diamond for my engagement ring. When we got married, we used Irish claddaghs so all I had to do was switch it to the other hand. I don’t own a single piece of jewelry or any item worth anything. My car is a 2015, my computer is a mid-range model, even my Brooks Brothers suit is 15 years old at this point.

But this is what’s wrong with our country. As a society, we assume everyone “poor” or experiencing financial trouble or unemployment is in that situation because they are irresponsible, stupid or did something wrong. And sometimes that poverty or situational bad luck is due to society’s expectations.

For example, starting with my generation (the GenXers) we insisted that our kids go to college and saddled them with loans to do it. Then, we flooded the market with bachelor’s degrees, which rendered them meaningless, and started pumping up the value of master’s degrees. For those of us associated with the arts or wishing to pursue an academic trajectory, a Ph.D. is now required and some perfectly talented individuals with MFAs are now trapped in a life of eternal adjunct status.

And the poor Millennials also fell victim to this higher education fiasco except the cost has skyrocketed and these poor kids are starting their lives with student loan payments that rival my mortgage and they can’t land a job with a living wage so they work in warehouses with the same people who skipped the education in the first place.

Now, add to that the way the medical system works. In my opinion, and this is just my opinion, more people than ever need some sort of medical support in their life. Whether it be disability, illness, mental health struggles or maintenance medication, it seems like more people than ever spend a ridiculous amount of their income on healthcare.

I have been extremely fortunate that my mathematical brain allowed me to calculate costs and I determined that the free to me high deductible health plan, when you included the employer contribution to my health savings account and a $50 contribution from me to that same HSA each paycheck, paid for most of my medical costs this year (except for my mental health therapist, who for some reason, the medical insurance company likes to pretend doesn’t exist. They just won’t communicate with him or pay him).

Now, before I continue on this rant, I don’t understand why healthcare in this country is primarily connected to employers and employment. Why is it an employer’s responsibility to provide access to healthcare? Eliminating this ridiculous practice might be a good first step to getting healthcare under control. If you meet certain criteria, you can qualify for government-sponsored insurance, which also dictates the level of care you receive, and the open marketplace for healthcare is expensive.

I just don’t understand why everyone isn’t pushed to the open marketplace OR why everyone can’t qualify for government insurance. If everyone went to the open marketplace and insurance companies had to compete for individuals instead of corporations perhaps the access to care would change. In other words– even a company like Stitch Fix– has thousands of employees. If insurance company had to court those individuals and families, they would have to work a lot harder to court them versus convincing one corporation to allow them to insure a large group of individuals.

I missed a month of wages after my hospitalization, which due to the one week waiting period, even with my employer-sponsored short term disability insurance, only provided three weeks of wages at less than 67% of my normal wage, and on top of that the company administering those payments misplaced my paperwork which meant I had to repeating submit paperwork and did not get the last week of those wages until one full month after I returned to work. And my doctor had to submit three sets of paperwork. Which, technically, costs $25 a form for the doctor to submit.

And because I have a congenital and permanent mobility disability, I always need physical therapy. But physical therapy sessions cost hundreds of dollars and insurance companies limit access to them. So I hired a personal trainer and pay him $25 a session (which bless him, he has now reduced his rate to contribute toward my fund to pay for my service dog which is another $5,000) and I bet Mr. Dahlstrom would say I should eliminate that from my budget as an extraneous expense.

But Mr. Dahlstrom, I imagine, does not live with a disability and has probably never experience what it’s like to have a leg that just suddenly stops working or a hip that feels like it’s waving to people from my butt. And since my muscles and my brain literally cannot communicate, I have to physically show them what to do so that movement is reduced to muscle memory and does not have to include the brain.

In closing, I’m going to end this long and winding blog post with a celebration that also highlights everything wrong with America. My friend Southern Candy from Stitch Fix turned 65 yesterday and she asked to go to Shady Maple Smorgasbord. That place was SO BIG, I think my whole d*mn town could have dined together. They had so much food and so many cooking stations I think we could have fed a village from a developing nation for a week.

The staff was amazing. The food was quite good. The gift shop was enormous. And in general, it looked like people were only taking what they could eat. But we all ate too much. I had three dinners and two desserts and spend several hours thinking I might vomit. The cajun catfish and the carrot souffle were my favorite. And I really wanted to punch an old man in the face because as I was reaching for the last piece of coconut custard pie, he snatched it away from me.

And the reality of how much food, how many steaks, how many excess calories we were all consuming filled me with such guilt and shame. Our culture, and you can disagree with me, is so centered on gluttony and selfishness. So while I was happy to spend time with my friend, and take a road trip with her, and laugh with her– I have to ask: how can such a place exist? I’m sure the intent, because Shady Maple started decades ago, was to provide a place where people could dine and have a wide variety of choice and not have to chose, or for families to dine together while pleasing difficult eaters. But this was insane.

The highs and lows of 24 hours

I write. It’s what I do. I got a random text last night from a colleague of a friend who I think would mesh with me on a personal level. We’re scheduled to have lunch on Monday. She texted last night– she’s a fellow journalist– hoping I could review her application for a special project. Let’s just call it a grant.

I needed that last night. I received a text from her this morning. She’s never requested my professional skills before, and I didn’t really think about that before I agreed to help her. I just heard, “I need someone to look at my thoughts.” And the former managing editor/grant writer in me just kicked in. She was on a tight deadline, and I was close to bedtime. But I did what I could.

Her text this morning said, “Holy shit. You’re good.”

But let me back up… and let me tell you why I’m struggling to digest the 24-hours of my life that started with 3:30 p.m. on Valentine’s Day and ended after work yesterday.


Happy Valentine’s Day, The Teen!

So, The Teenager considers the hamburger chain Fuddruckers one of her favorite restaurants in the world. Which is funny when you consider her favorite, favorite restaurant in the world is Kachapuri in Moscow. And mine, too.

We had a Fuddruckers a few blocks from her grandparents house for a couple years when she was in preschool. Her connection to this place goes back that far.

They closed it when she was about four. The two closest Fuddruckers now are in Hershey (1.5 hours away) and in New Jersey (1 hour away). We drove by the exit for the Hershey Fuddruckers during our service dog appointment Monday. But I wasn’t hungry, and at this point I can confirm that poor diet spikes my blood pressure.

Somehow, we negotiated a trip to Fuddruckers in New Jersey for Valentine’s Day. But a wrinkle came to the plan when her car’s service appointment took longer than anticipated, and more money than anticipated. But we decided to go anyway. Because at this point, the poor kid is miserable. She got nailed with owing federal income tax, her car insurance has doubled and her car is an enormous money pit that might be a ticking time bomb. Really, the transmission might be next. But we’re working on manifesting luck and joy. Hamburgers, it is!

I locked up the house and I discover an envelope in the incoming mail. The design of the envelope itself ruins the surprise of what’s inside. These kids today, they have all the tension stripped from their lives.

Now, our trip to Fuddruckers was officially a celebration.

And this Fuddruckers, according to the Teenager, is way better than the Hershey Fuddruckers. We’re apparently connoisseurs now.

Note to self: my bacon bacon jamburger was amazing.

Conversations in the car got a little heavy as conversations in the car normally do, and I went to bed missing my family. But that’s another feeling for another day.

Wednesday, February 15

I performed well at work on Tuesday. Perhaps too well, at 132 fixes. My official observation was nearly 107%. I felt the warning creaks in my body Tuesday night that maybe all the car rides and the full day at work might have stressed my lower extremities.

This story takes a turn, and could have ended in tragedy, but it didn’t. But it’s a lot of emotion and a friend nearly lost their life. So if that doesn’t appeal to you, stop reading.

There’s a crew of us at work. We all used to work second shift together. Then we moved to the 10-hour Sunday cohort, Then we moved to day shift. When they rearranged to break schedule to make larger lunches, we gravitated together. And I’d like to believe we have a bond.

One of us went to the hospital Superbowl Sunday with chest pains. This person has a history of past heart attack. And the hospital, from what we understand, tested for hernia, gall bladder and gave an EKG but never did cardiac enzymes. They sent our friend home. This person has been in intense chest pain on and off since Sunday. This person forces themselves to come to work on Wednesday, because we all need to work. We’re not living lives of leisure and passive income.

We’re sitting at our normal morning gathering spot in the breakroom, and we had seen the car of the person in question, but this person had not arrived in the breakroom. We figured this person needed to talk to supervisors. Makes sense.

I receive a text. “Are you at work? If so come to my car.”

I do.

My friend was sitting in the car, tears streaming, clutching at the chest, stating there was pain in the arm. My friend was about to throw up from the pain. Apparently, my friend planned to drive to another hospital after a supervisor offered to call an ambulance. We went into the building, where my friend went into the bathroom. Another colleague had to escort her out of the restroom.

This is when another friend declared that an ambulance had to come and told our supervisors to call. And our security head monitored vital signs.

Our most confident and bossy colleague went to the hospital and we’re told she kept the staff on their toes.

Our friend had a heart attack in front of us.

Our friend received the care needed, but THREE DAYS after first going to the ER.

THREE DAYS.

I’m angry at the system. And I feel guilty for not pushing harder for better care sooner.

But right now, we’re all solemn and grateful that we didn’t lose a friend.

ADVOCATE for yourself and your loved ones.

3/4 of the year: The August medical update and ‘the feels’

Yesterday Nancy (my blind friend, poetry editor and my sassy mentor/ partner in crime) and I were in her bank. The other local branch of this big name bank had had some sort of building emergency. That office was temporarily closed, so the customers were lining up with us. The bank was understaffed (the man in charge had a lovely amiable personality and told us all if we wanted a job he needed two tellers immediately. I turned to Nan and asked if she wanted to apply. She laughed).

We were fourth in line, with a small brown man with an accent in front of us. He overheard me tell Nan something indirectly about my weight (the fact that I had worn jewelry made me jingle and I had on heels so I was unusually tall). And I said something about finally having the mindset to make an effort even if I hadn’t lost any of my stress-induced pandemic weight.

The man in front of us softly said, “you look great” (and when we left I got cat-called so it had to be true, I suppose). A few minutes later the man mentioned that seeing Nancy reminded him of the story of Jesus healing the blind man.

Now, before I continue this story, picture us in the chaos of an old-fashioned bank building, the arched ceilings and the old mega vault. Picture the long line, socially-distanced. Picture awkwardly-gaited me and the little old lady with the white cane on my arm.

I have heard the stories of disabled people dealing with religious folks who want to pray for them or with them. And this man muttered something about blindness being a blessing. And Nan mentioned something about disability teaching lessons to those around us and reminding us to have patience.

“It’s a blessing,” the man said.

Easy for him to say. It reminded me of something I heard on a podcast interview with a martial artist who has cerebral palsy. “I can do anything anyone else can do,” he said.

I mean, it’s the crap we always hear. And we can do anything anyone else can. But we also can’t. There’a footnote to that statement no one ever told me: you can’t expect to do it the same way they do it. You won’t look like them or necessarily achieve the same things in the same order. The able-bodied will never understand how different simple tasks that come easily for others can feel impossible to us. I spent my whole life trying to do what everyone else did, they way I saw them do it. But I didn’t understand that the physics of my body is very different from anyone else’s.

My legs and arms are often covered with brushes and scratches from bumping into things. I stumble and fall. But, I haven’t had a serious fall since August 3. That’s exciting. My average since the mallet finger has been every two weeks. I’ve now made it almost three. Today, I have my follow-up with my doctor, and I had called his office when I started the application process for a mobility dog through Susquehanna Service Dogs.

I’ve blogged about this most recently here. I connected some of my earlier posts about the process and decision here.

I asked his staff if he could fill out the medical form, because if he didn’t think he was the right person I could call my neurology physiatrist. She was/is amazing but I only met her once, two months ago. I have been with my primary care physician for 14 years.

His staff checked with him and they assured me that he not only fill out the form but that he would do it at my already scheduled appointment today. I normally see my doctor twice a year, in winter for my physical and in summer to review bloodwork and health issues that may pop up during the year.

When I ruptured my tendon in April, I visited him because my entire system was thrown off balance with the injury and although the specialist had allowed me to return to work (rightfully so), my hip was in pain and I was falling all the time. He signed me out of work for a short recovery leave of about three weeks, so I could work with Andrew, my strength and fitness coach at Apex Training, my occupational therapists at The Institute for Hand and Upper Extremity Rehab, and my talented chiropractor and physical therapy guru Nicole Jensen of Back in Line Chiropractic and Wellness Center.

I have documented this journey and have started writing my cerebral palsy memoir, Gravity is a Harsh Mistress with clever title by my estranged but still strange husband. Blog posts with connections to cerebral palsy are listed here.

My primary care doctor followed up with me after my specialist visit and allowed me to return to work at the end of May, even though my finger was still in a cast. We made this decision because the effort I gave Andrew had paid off and my hip was no longer bothering me. In addition, I had my first meeting with my physiatrist a few days later and I wanted to see how I felt after a week back-to-work to relay that information to her.

Anyway, point is, I haven’t seen my primary care doctor since May. He hasn’t seen my healed finger. He hasn’t heard about some of my rather dramatically majestic recent falls.

My weight today was 155, which is more than five pounds less than what it was at the gynecologist’s office last week.

I arrived early. I was in my exam room before my appointment time. My friend Gayle was bringing me her laptop so I could work on the cat book edits. I told her to put it in my car as I didn’t have time to run to her house and didn’t know how long my appointment would be. She ended up at the wrong medical practice. There are two similar St. Luke’s affiliated family practices in neighboring buildings.

I was texting her and making notes waiting for the doctor. I noticed my phone buzz again. My mom had sent a photo via text. That’s odd, I thought to myself. Mom hasn’t said much to me since the Teenager and I surprised her companion on Father’s Day. She didn’t even text me when she went to Florida to visit family. So, what was this?

I opened it.

I shouldn’t have. It was my father’s tombstone. My mother, despite having divorced more than 30 years ago, visits my father’s grave regularly. She’s grieving him, as many people are, and she is also grieving two of her brothers who died in the weeks before my father.

I couldn’t hold back tears. I have not visited my father’s grave since the funeral, and even then I did not get out of the car. I don’t see the point. The funeral had alienated me, and I didn’t feel like I “belonged,” and that’s not due to my family. But my father wasn’t there anymore. It was a corpse. And I had no need to see it formally placed in dirt. He was gone. And no ceremony will change that. Even now, I’m crying again.

Several times I regain my composure and several times I lose it, until eventually the doctor knocks on the door. So, I had to explain.

I mean, I suppose I didn’t have to, but it seemed only fair.

That meant we spent the first ten minutes of my appointment talking about boundaries, grief, and therapy. I’ve been with my psychologist even longer than I’ve been a patient of my doctor and the two of them know each other and speak so sweetly and kindly about each other.

We moved on then I think first to my recovered mallet finger. We reviewed my bloodwork. I told him I had to go get more iron, as my previous bottle had run out and I was using a different iron that didn’t seem to be working as I told Nan yesterday that I “almost bought a pair of potato chips.” Now, when you’ve had a history of iron issues and anemia, word confusion is a symptom. And I have been using wrong words in speech for at least a week. So either the iron is dipping or I should be screened for early onset dementia.

I almost bought a pair of potato chips.

I used this opportunities to ask if there were any other adjustments he wanted to make to my vitamin regimen. He suggested sticking with the 2000 ius of Vitamin D3 (which I take with calcium).

Next, we tackled the form for the service dog. Much to my relief, he thought the dog would be extremely helpful for me. And he also commended me for the work I do to take care of myself. In the evaluation for the service dog process, I was telling stories from the gym and mentioned how my ankle finally popped for my chiropractor Wednesday night, and how after my last fall I asked the Teenager to evaluate my walk, then she told Andrew this info at the gym, and he monitored my movement, until the next day I went to the chiropractor and she had to maneuver my hip back where it belonged.

She said I needed to do more single leg muscle stability work, which I then told Andrew, and I relayed to the doctor the horrible exercises Andrew made me do. And my doctor chuckled.

He once told me that he doesn’t worry about me because he knows if he tells me to do something I will do it. And I think Andrew and Chiropractor Nicole see the same commitment in me. My doctor today said this is why I am in better shape than many of his patients, despite my issues.

He handed me the completed form, which is the type of thing the office signs decry “requires 7-10 days” and payment of form fees. I am so grateful for my team, their respect and their guidance.

Meanwhile, while I am setting up my annual physical for February 2023, I see a text from Gayle. Remember Gayle? Apparently, she forgot my current car was a Volkswagen and was wandering in the parking lot looking for a silver Nissan. (My last car was a red Altima.) I didn’t have my Stitch Fix parking permit on my mirror. The car was clean because The Teenager has her own vehicle now. And there were four silver cars– none of the Nissans– in the parking lot.

She meandered around so long that a staff member came out and asked if she was sick or needed help. When I left the building, Gayle was next to my car. I had been with the doctor for an hour.

“You’re still here?” I said.

“I’ve been out here 45 minutes,” she said. “So when you replied to my text I figured I might as well stay and say ‘hi.’ What’s five more?”

Only you, Gayle. Only you.

The Concept of That Thing, Compliments from the Chiropractor and Ingenuity in Training

Sometimes, these entries feel repetitive. I hope they don’t feel like that to you, the reader. But, in many ways, life is certainly repetitive.

Whether it be the old house always needs attention, the dog is always sick, a struggle with weight, mental or physical illness, a bad boss or money problems, each of us seems to have that troubling thing with which we grapple.

If you don’t have that thing, I would love to read your memoir (or maybe not— I might throw it across the room).

So if you keep stopping by or my blog posts keep popping up somewhere in your life, I know I’ve been talking about cerebral palsy a lot. It’s that thing for me, especially right now, as I topple through the second half of my forties.

I have spend most of my life— until the last decade really— denying that that thing made my life difficult. I laughed off accidents, tried to hide my legs, carefully picked my shoes and didn’t talk about it.

But also, and very important in the chronology, until that point, it hadn’t really been an issue. I occasionally feel down, scraped some knees and hands and laughed about it.

But then I started breaking bones, having issues with my spine and hip, and when I fall now, it’s more serious that wash up some scraped flesh and laugh it off.

So, if you don’t already realize, these blog posts are meant to be informative for those seeking situations involving demiplegic spastic cerebral palsy, but also chronicle my acceptance and journey into how to live my life with my disability instead of pretending it doesn’t exist.

We’re learning to co-exist, cerebral palsy and I, in a way that allows me to stay active, be whole, and keep myself safe.

On Monday, I had an uncharacteristic fall at work that seemed to come randomly out of nowhere. I wrote about it here. It scared me because it didn’t feel like my other falls.

I left work at 11 a.m. and came home to rest and write and emotionally decompress. I was scheduled to go to the gym at 6 p.m.

I texted Andrew, my strength and fitness coach at Apex Training. He moved my session to earlier in the day and The Teenager and F. Bean Barker accompanied me to the gym to study my walking and confer with Andrew about the possibility of a work out.

F. Bean Barker, hard at work

We scarcely made it two blocks and The Teen says, “Holy Shit, Mom. You’re right knee is hitting your left leg. You can’t feel that?”

She proceeds to mimic my gait. After half a block, she looks back at me and says, “No wonder your body hurts so much all the time, my hip is killing me already.”

It might seem mocking for her to imitate me on a city street, but for me it’s helpful since I can’t see myself move. That’s why I also like her accompanying me to various assessments as she has no problem telling doctors, “She’s having a good day today. When she’s tired that leg is much fuckier.”

She and Andrew studied me and they stared in bewilderment. They agreed that my left hip was definitely out-of-whack. The Teen left and Andrew got me stretching and doing a thorough workout that safely challenged the muscles that seemed to be malfunctioning.

As happened on Monday when I was achy, the workout made me feel better (which is why I didn’t want to cancel). I have never been good at not overdoing it, so the concept of “being gentle with myself” as my therapist says and “taking it easy” (both emotionally and physically) as my dad would remind me if he were still here, does not come easily to me. It’s especially hard because spasticity means my muscles don’t relax, so motion and exercise really can relieve my symptoms. But if my issues are joint and/or fatigue related exercise can make it worse. And I don’t often know which course of action will help.

I proposed this theory to Andrew: Since cerebral palsy means the brain and the nervous system can’t always communicate, I feel like sometimes those messages goes haywire. That’s when a good, supervised workout (where Andrew can guide my motions and direct me as to what body parts are doing unnatural things) helps my brain re-learn those communication skills. The muscles start to do what they should do because I am thinking consciously about how to do it, which helps the muscles get into the groove, and from there muscle memory takes over, and through doing, the brain resets.

Just my theory.

I woke up Thursday morning with minimal discomfort from my fall (and a new lump and bruise where I walked into a weight bench at the gym, which made Andrew feel terrible). I was looking forward to my appointment with Nicole Jensen of Back in Line Chiropractic and Wellness Center on College Hill in Easton, Pa.

Her daughter had joined her in the office. That made it interesting to have a different kind of conversation about my condition. I was a good example of two things: every patient is different and some patients have self-awareness about their body. And according to Nicole, I am one of the most self-aware in the practice. I was also an unusual example of someone who often “does better” in heels because of the fact that my heel parts (tendons? ligaments?) are so tight. I’m a toe-walker. My heels natural fall at an angle so a slight “kitten” heel replicates the shape of my feet.

I told Nicole about the latest “random” fall and this worried her, because she’s noticed (and I have tracked on a calendar) that my falls have gone from every six weeks to every two weeks. I mentioned that I applied for a mobility service dog through Susquehanna Service Dogs. She loved this. She agrees that I am the perfect candidate for this and that a dog could be a game changer.

I explained that I had mailed the application last week (Friday to be exact) and that The Teenager and Little Dog’s Mom had said they would write my letters of support (which means they support the placement of the dog with me and will take responsibility for making sure I take proper care of the dog once it is in my home). The Teenager planted the idea of a service dog in my head and it took some time, research and more falls to help me accept the idea that I have a disability and that a dog would be able not only to help, but would probably improve (and protect) my quality of life. The Teenager works for a local pet care company.

Little Dog’s Mom has known me for 20 years, trusts me to care for Her Ladyship Sobaka, and is a very responsible dog owner who takes often thrice-daily walks and has a magnificent fenced back yard. A potential service dog would have my small yard for potty breaks and the opportunity to run and play across the street at Little Dog’s house.

My doctor’s office assured me that if I bring the medical assessment form with me to my August 19 check-in, that my primary care physician would not only fill out the form but he would also do it while I was there. I asked my estranged husband of twenty years (and The Teen’s father), the president of the cat rescue where I foster (who left the social work business after decades to open Apricity Pet Care), and my therapist (who has known me for a decade and whose wife is a physical therapist) to fill out the personal reference forms. They all agreed. But back to the chiropractor…

Nicole also said to stand on one foot throughout the day to stabilize my leg muscles. Physical therapy is a fascinating science, the simplest movements can impose the greatest change. My blind friend Nancy discovered that a good portion of her shoulder pain and finger numbness stemmed from not stretching her neck up. As a blind person, she never has a need to turn her head toward the sky or ceiling or someone speaking from the stairs or seeking something on the top shelf by looking for it.

When her very clever physical therapist suggested stretching her neck regularly, her symptoms decreased significantly.

There it is. A lot of words. A lot of thoughts. I’m hoping this post will give you food for thought, reassure you that I am not totally a disaster waiting to happen and/or offer you information on my journey and hope for you if you need it.

Roller coaster

What an insane week it’s been.

Monday we had a paid day off for President’s Day and, as I have mentioned, my primary care physician called and scheduled an appointment for me with a physiatrist they recommended.

You may recall this made me very happy.

Nan and I even went out for coffee to celebrate.

But yesterday, as I did what I do folding clothes at the Bizzy Hizzy, I got a call from the physiatrist that they didn’t think they could help me as they specialized in orthopedic care and I probably needed neuromuscular care.

The very kind staff person asked me questions and said she would talk to the doctor on my behalf but that they might cancel my appointment.

I literally started to cry.

And I emailed my psychologist.

Because the difficulty I am having finding medical care seems a tad ridiculous— and every hurdle I cross makes me feel like less of a person.

Or perhaps just less valuable.

When I returned from my first break, the powers-that-be at our Hizzy transferred me to the returns department. Now I love women’s returns processing, but it hurts my body. It must be unloading and swinging the packages around. But I can’t figure it out.

By the end of the day, I wasn’t too horribly in pain, but I definitely felt out-of-whack. I had “vague-booked” on Facebook that seeking medical care should not make one cry.

One of my friends, whom I have known for probably five years now, replied that he might be able to help research doctors. We’ll call him the punk Viking.

Meanwhile my neurologist finally returned my email from several weeks ago recommending another physiatrist.

I called the Punk Viking on the way home from work. He has social work experience and is recuperating from a significant medical intervention. He and I have made a pact of sorts to support each other through our health journeys and try to bring a little more levity to each other’s lives.

And then I woke up at 3 a.m. keenly aware of the fact that my hip had shifted. And I was uncomfortable.

And I went to work uncomfortable.

A bunch of us were scheduled to work women’s inbound processing— which is about 700 steps from the main breakroom for my short legs, the far end of the warehouse.

At 8:50 a.m., we trekked to the breakroom for first break. On the way, my chiropractor’s office called and asked to move my Friday appointment because of the anticipated winter weather. They are calling for snow. I fought tears. They wanted to move my appointment to Monday— but I’m already uncomfortable.

(According to the iPhone my walking was asymmetrical today. It looks like once a week my walk is getting measurably off.)

So, I take an appointment for 5 p.m. Monday. And put in a last minute request to leave early Monday.

We returned to our stations at 9:05 and at 9:15 we had a team meeting back in the breakroom.

During that meeting, the physiatrist’s office called. I can’t answer. So I can only assume they are canceling.

But instead I discovered they have agreed to do an assessment.

I get back to my station at 9:38, and I have a second interview for my application to the safety team at 10. It’s on the complete opposite side of the building— about 1300 steps. When I arrive, I find out the location has been moved to a different room. One, get this, just beyond the breakroom in women’s inbound.

You know, where I started.

The interview went great.

And I had more than 8,000 steps today.

I came home, talked to the Viking, and did some cleaning with the teenager. I’m exhausted. Achy. Stiff.

But if all goes as I hope it will— I should be able to get my business bank account for Parisian Phoenix tomorrow. My LLC came in today!!!!!

The joys so easy to miss

If you’ve read some of this blog, you probably know that I have a relatively new job in a brand new field that is giving me tremendous potential to grow as an individual and a professional. It’s challenging and rewarding and it allows me to do some good in the world.

But in any new job there comes a learning curve and change can be exhausting. On top of my career change, my husband and I separated six months ago.

So that’s another part of my life in flux.

Last night, I went to the podiatrist as my toe has been bothering me. It’s the same toe on which I dropped a 15-pound dumbbell almost 2 years ago. I also broke that ankle 4 years ago now.

I was fairly certain I just had a blister in a weird spot that went a little wrong but with my cerebral palsy I didn’t want to take chances.

When I got to the doctor, after waiting a week to get the appointment, I realized I forgot my wallet. Luckily I had ways to pay them and my daughter texted me the information in my wallet but that stressed me.

And then the doctor trimmed my toe nails and removed all the pretty nail polish from my recent pedicure. Now I know that is something he needed to do, but it made me very very sad.

Then he prescribed me an antibiotic because it looked like the toe did have a blister, got infected, and maybe it was going to be fine but why take the chance.

So I had to go home, get my wallet, and go to CVS.

My daughter came with my and as we waited, read this joke book to me:

I laughed at a few, despite my best attempts not to.

When they built the Great Wall of China where did they go for supplies?

Wall-Mart

And then she begged for the book, and the cashier pointed out I had a 30% off coupon on my CVS card so now we own a $3 joke book.

And she’s been reading me jokes ever since.