Update on the blood pressure issue

It’s hard when facing a health scare not to feel like a victim. Not to feel like another “oh, shit, why me?” moment has hurtled itself at oneself.

I try to take every new challenge and scare as an opportunity to make positive changes or do things in a new way.

So if my blood pressure is high, maybe this is the kick in the butt I need to cut back on the caffeine and encourage the discipline to stop my emotional binge eating.

I’ve upped my water intake, cut out my processed foods, and asked my trainer for his support sticking to a healthier diet and hopefully shed some of this excess weight. I have blood work scheduled on Saturday, and the doctor’s office called and asked me to visit one of the resident’s tomorrow morning.

I am doing my best to stay calm and wait to see that tomorrow brings.

And the medical fun continues… not the outcome I expected

So… when last we left our quest with the absence management company, I had mentioned that I sent my PCP an already completed form to expand the intermittent leave I had requested from work. Honestly, it’s getting more stressful than it is worth.

The doctor’s office sent me a message on Thursday last week that they had faxed the paperwork and I could pick it up when I was in the neighborhood so that I had the master copy in case the management company lost the fax like they did when the neurologist faxed it.

On Friday, I stopped by my therapist’s office and picked up the paperwork for my psychiatric evaluation for my service dog. During our chat, I mentioned that I had this physical feeling of anxiety that had not lifted since Tuesday, some tightness when I breathe, and the inability to relax, and I suspected high blood pressure since I was having headaches and constantly ringing ears.

He requested I have the doctor’s office run additional blood work and check my blood pressure. I said I would mention it. And that I was stopping in for my paperwork Tuesday, had my iron and Vitamin D blood draws scheduled for the following Saturday, and my annual check-up toward the end of the month.

The psychiatric evaluation mentions my struggles with stress and my past trauma and notes how I have worked through stuff, and also mentions that I display intermittent symptoms of general anxiety disorder and mild, recurrent major depressive disorder episodes. And I noted the diagnostic codes were the generic ones that don’t really say I have the condition, but that I’m teetering on the edge of it. (Is this why my health insurance won’t pay him? Do I not ‘require’ therapy in their corporate eyes?)

Then during the weekend, my fingers starting tingling. I contacted the doctor’s office and mentioned what my therapist had suggested and the staff scheduled me for a visit with the nurse today when I stopped to pick up my leave paperwork. And the doctor included some more blood work slips for me to add to my collection.

Meanwhile, I reduced my caffeine intake to two normal cups of coffee in the morning instead of my turbo-charged Supercoffee.

And today I tossed on my “Emotional Support Animal” t-shirt and for the first time since I have reached double-digits wore pigtails. And my new red glasses.

The Teenager called this my “Punky Brewster turns 40” look.

And then I took my vitamins for the second day in a row.

I did great at work today– I did 145 fixes, that’s 111%

Meanwhile… I’m out of PTO so my request off for the rescheduled service dog canine therapeutic evaluation was denied. I am fairly certain I can work that out with my supervisor.

I leave work, arrive at the doctor’s office, and when she’s available the nurse takes my blood pressure and doesn’t tell me what it is.

“We’ll do it again in a minute.”

The second result, based on her reaction, was no better than the first.

“The first reading was 150/98,” she said.

That sounded bad.

“The second reading was 150/96.”

That was not better.

She excused herself, and returned a few moments later, having discussed with her colleagues whether they should keep me in the office until they talk to the doctor, or if I could go home and they would get in touch with me later. Luckily, I was dismissed.

I came home, scanned the medical paperwork for the absence management company, emailed it and made myself a glass of cashew/almond protein milk with cacao powder. It wasn’t bad, for unsweetened non-dairy chocolate milk.

The examiner from the absence management company said she approved a leave of 1 day/8 hours a month, which is exactly what was put in one question in one segment of the paperwork. What is all the other information in the other four pages for????

And I’m loading up on water and I need to swear off the Little Caesars pizza and the savory food binges.

And to think it’s only Tuesday.

Busy, busy: Taking care of yourself takes time (but we always make time for adventures)

It’s been what, a week?, since I wrote in this forum. I know, I know.

I have been trying to write. I have plans to brainstorm ideas for BookTok, projects to edit, and I decided to make short, very real, unedited videos for BookTube.

But, as I left myself 30 minutes to write this blog entry and “wasted” 15 minutes of that panicking over a medical form (all part of “things that have happened since last week”) I may have to leave you with a list:

  • The Intermittent Leave I submitted to my PCP was illegible once printed out, so I typed a new one over the weekend and sent it to the doctor’s office. I had not heard from them, so I double-checked the email this morning and thought the form I sent them was blank. I panicked, discovered my eyes had misled me, but had already messaged the office so now I probably have high blood pressure and look like an ass.
  • My favorite foster, Khloe the Sassy Princess and Cuddler, went to Chaar in Forks Township in search of a home. I went to visit her before the gym Wednesday and she made me biscuits.
  • My workouts have been brutal… I mean amazing, really I do. I’ve been doing what feels like some great weights and focusing so hard on form.
  • We had a heating oil delivery yesterday and I hadn’t anticipated that for another three weeks. $700. Ouch.
  • I had brussel sprouts three times this week. I do love my brussel sprouts.
  • I saw Nan Tuesday night and we practically made a comedy routine out of reading her junk mail.
  • My creative brain is swimming with ideas. Is that because I have no time?
  • I am soooooo close to fully performing at work. They messed up my accommodations Tuesday. My percentages are 98%, 103%, 103%. Accommodations make a difference.

But here’s my big take away:

Feel free to let me know your opinion.

Regardless of whether you have a disability or not, and that can even be a personal determination, getting older sucks… anyway… Taking care of yourself takes a lot of time. Monitoring your habits (food, sleep, exercise), health and treatments take so much time. Finding and visiting doctors. Physical therapy, training sessions or independent-led exercise. It’s ridiculous. Filling out that intermittent leave paperwork really drove home how much time I spend taking care of myself.

Maybe it is easier to neglect oneself. Maybe it would be so much less stressful to eat what I want, accept my “limitations” and live a more sedentary life. Maybe it is easier to stop fighting and be miserable. Maybe it takes an exhausting amount of energy to take care of oneself.

I’m a doer, a fighter. It’s who I am. So I will never stop trying. But now I think I see why some folks don’t.

Anatomy of a sick day (and a really cute Stitch Fix Freestyle blouse)

The Teenager received her remaining Freestyle packages from Stitch Fix yesterday– one from the warehouse in Indiana and one from the warehouse scheduled to close in Utah.

So, before I launch into another blog post about the frustrations of learning the limits of my own body, I waited to share this photo of her in a super adorable top I found for her on the web site. I’ve probably folded and shipped at least 20 or 30 of these. Every time I’ve dealt with it I’ve struggled with its fluidity, wrap front and floppy sleeves. I’ve thought to myself: This must be a difficult shirt to wear.

When it arrived at my house, I thought, “oh it’s that shirt.”

And when the teenager put it on, I saw that she pulled it off beautifully. In my opinion, she looks way better than the model on the web site.

Now onto the cerebral palsy update…

It’s been two years since I started this journey to learn what cerebral palsy actually is, how my body works, and what I can expect as I age. I had no real medical treatment from age five to age 20, which means this is all very new to me. And fascinating.

And it’s been a month since Stitch Fix changed their metric measurement system in our warehouse and graciously implemented my workplace accommodations. Keep in mind that until five years ago I did not consider myself disabled and I worked really hard to do and appear as typically-abled as possible. When I started with Stitch Fix, I mentioned my disability in my interview and it is because of the culture at Stitch Fix that I had the resources and the space to explore my physical condition.

Stitch Fix is in the news right now for some changes, including closing the Utah “hizzy” and asking the CEO to step down. The founder has resumed the role of CEO for now. So, this post is about me and my journey, but I also wanted to point out that it wouldn’t be possible with the support of my colleagues at Stitch Fix.

Last week was rocky. I did a shift on the men’s side of the warehouse, then returned to my home department on the women’s side to find that the support on the women’s side hadn’t completely worked out the kinks. I just repeated to myself that we were all adjusting, and this was a big change that impacted more than just me, and I jotted down the inconsistencies I noticed and pointed them out verbally but not in writing to ask questions about how my accommodations would work and how they effect operations in our department.

Because one incident of an accommodation not being met is a coincidence, multiple is a trend. And none of my concerns became a trend. But I did experience a fall last week, which undid my most recent chiropractic adjustment. Stress may have played a role in that fall.

The great news is that yesterday went without a hitch and I even got a chance to talk to more of my peers, hopefully reducing any tension that may have been introduced by my accommodations changing how the department operates. My numbers have steadily remained where they should be, and on Friday I even hit 105%.

Bad news is… I felt so good yesterday and was working hard and hitting numbers… and I did not take my Baclofen. I don’t normally take it on weekends, and I honestly don’t recall if I took it yesterday morning. I know I did not take it with lunch like I normally do.

Then, being the person I am, I went to the gym and completed my regular weight training which, on Mondays, focuses on upper body.

I came home, showered, had dinner, and by the time I did some other household chores, I dropped into bed a little later than usual. I woke up slightly before midnight with my legs very tight and my shoulder throbbing. It took about two hours to go back to sleep. At four, when my alarm went off, I got up and fed the cats and visited the bathroom. I stretched and changed the toilet paper roll.

I felt much better, but did I feel good enough to go to work? My brain said, “sure.” My body replied, “well, a hard day’s work might stress your already achy body more. And that would perpetuate the cycle.” My brain added, “And you’ve had somewhere between four and five hours sleep. Is it really wise to go to work sleep-deprived? You’re a fall risk on a good day.”

I reset my alarm for five a.m. It never went off because I laid in bed the whole time pondering what to do.

I hate “calling out sick.”

And then, after looking at my PTO bank, my brain said, “this is why you have an intermittent leave. This is a disability-related absence.” But of course, being me, I had to debate whether or not to go in late. I didn’t know when I would wake up if I went back to sleep.

So, I emailed my supervisors and “called out.”

I got out of bed at seven feeling even better than I did at four, though my shoulder still hurt and my healed mallet finger was very stiff and uncomfortable. But now at least I had had seven hours sleep.

I realized when taking my morning medication that I had not taken my Baclofen regularly. This may have proven that it does make a difference, a difference I might not notice until it exits my system. And I also recognize that I very much need to be sure to use both my left and my right sides when I retrieve and empty the fixes that come to my station.

A lot of trial and error.

I did what I could, but things don’t always change as quickly as you want them to

I have minimal patience for people who get stuck, accept it, and then complain about it without striving for change. But don’t worry– this isn’t a post about other people, it’s a post about me. Because the flip side of those who prefer “victim” status and inaction is when you do things and it’s not enough.

I have a funny conversation with my amazing chiropractor every time I see her. Whether I’m feeling good or bad, there is always so much chaos in my life that I have trouble labeling what helped or hurt the most. That’s probably one of my character flaws. If there is chaos, I dive right in. I say yes to help before fully considering the impact on my own life or those close to me.

Since December 12, my supervisors at my warehouse job have been trying to meet my new workplace accommodations for my cerebral palsy. This move for accommodations, on my part, was not spurred by a change in my physical condition, but my a change in how the company measures employee performance. Since I have been with the company for more than two years, experience has shown that I cannot meet the new standard. It took me about a year to consistently hit the previous measure.

My neurologist, who is also a physiatrist, and I adore her, literally wrote, “limit bending/crouching as much as possible to improve endurance.”

And so, during the course of the last several weeks, I have made most of my metrics with the support of the other staff in bringing me work that doesn’t require me pulling it out of shelves near the floor. We’ve slowly moved me to a work station near the back, so the support staff bringing the work doesn’t need to look for me or drag the work everywhere. We found a work station the right height and that directs the completed work to the left so I don’t have to stress my right hip.

This is after two weeks of a different table every day. Setting up a work station at the end of the day with supplies and my work to start the next day only to be moved somewhere else and given “standard” work in the morning. This is after the stares of my coworkers who are not on my team, as they linger around my work station wanting to figure out why I’m getting special treatment but unwilling to ask questions.

Until one of the nicer people, who still has the attitude of the others who don’t take kindly to us outsiders who originally came from second shift, offhandedly says, “because you have a real disability, right?”

I’ve been working hard in the gym, and set some new PRs on my weights, and since my holiday workouts my hamstrings have been super tight and spasming. The last time I did legs I probably overdid it. But everything was moving so well and I felt so strong so I hope this discomfort is my body trying to build new muscle and new connections with my nervous system, Because that’s my disability– my nervous system doesn’t communicate correctly with my lower body, making it impossible for my brain to tell my muscles to relax.

I don’t know if that’s why my mid-section, as in lower back and hips, has so much discomfort and burning pain, and why my legs ache. That workout was on Saturday morning and it’s Wednesday now. Maybe I’m being punished for binging Fleischman is in Trouble on Hulu for New Years or maybe I’m inflamed because I’ve been living on Christmas cookies and cake.

Who knows? But yesterday was hard and I couldn’t reach my feet or the floor and today I’m having more trouble bending. I see the chiropractor after work, so maybe she’ll have answers. I also forgot to wrap my toe yesterday. That meant that in addition to basic mobility issues it felt like someone had a knife in my toe all day.

But I hit my numbers, even did two extra, and set up my table with about 90 minutes of easy work and new rolls of supplies. And then I received work that I was being labor-shared today. And that has me upset and anxious. I’m folding clothes, just like I normally do, but today I’m supposed to do men’s clothes instead of women’s.

Last time I worked in men’s, it was awful. The clothes are bigger than I am and they don’t fit in the boxes, because the boxes are the same size of the women’s boxes but men have bigger bodies and much bigger feet. Plus, will they honor my accommodations? Will they put me on the left?

It took three weeks to get things comfortable for me in my own department. And my biggest fear is, when I return to my department, I’ll have to start all over with them.

Meanwhile, in the good news camp, The Teenager and I visited some friends last night so she could learn how to change her own headlight bulbs in her car and then she took me out for food. She might not believe me when I say it, but I really do love these small moments with her.

In other thoughts, when I get through my current financial straits (I have $3.92 in my checkbook and a $700 medical bill, the garbage bill is rumored to have gone up 200% and I’m still paying off my new ceiling and new computer), I really want an Apple Watch. I wonder if it could do a better job tracking my mobility and my activity. I’m really curious what all that clothes-folding counts as.

A Monday mammogram, a dose of anxiety, some more commentary on cerebral palsy (and fitness) and a really yummy dinner

I had a mammogram scheduled for this morning with my “regular” radiology tech. I went into work late, which meant I could sleep in and isn’t that the best way to start a Monday morning? At five a.m. I woke and starting cuddling my foster cat, Tripod Louise, debating whether or not I should get up. I normally rise for work at 4 a.m. so I have time to do Parisian Phoenix stuff or creative writing before clocking into my shift at 6:30 a.m.

But as I lay there at 5 a.m. today, I realized that I had set up the delay feature on my amazing coffee pot, and yes I still adore my Ninja K-cup, travel mug, and standard carafe brewer. I had coffee waiting in the kitchen. If I waited much longer it might not be fresh. If I fell back to sleep, it might not even be hot.

I fed the fat cats their weight management food and went downstairs where I promoted my latest idea, the photo scavenger hunt book. Check Parisian Phoenix’s submission page for more info.

I arrived at the hospital for my mammogram at 8:05 a.m. I went into the lobby and grabbed my registration number. Luckily it was two away from the last number I heard called. I started rooting through my purse for the doctor’s order and found it crumpled and stained with coffee.

A Dose of Anxiety

While I don’t normally suffer from panic or anxiety, when my stress levels increase I am prone to physical sensations of anxiety. And I had forgotten how stressful I find doing any outpatient procedure at the hospital. Grab a number, sit in the main lobby, go to the registration office, go across the hall to radiology, check in at radiology, get called to mammography, traverse the hall, get changed, go into the mammography suite, chat with the tech, get smooshed.

It’s a lot of steps in rapid succession. I could feel my hard pounding and had to keep inhaling deeply through my nose to keep my chest from closing up.

Was I nervous? No. Afraid? No. Shy? No.

It was pressure. I felt rushed and out of control.

Building Up Another Woman

Once in the mammography suite, I learned my favorite tech would be retiring in eight days and staying on per diem because if she works one day a month she will maintain her medical insurance.

I told her I was happy for her, but also disappointed, because she did my first mammogram and she always made me feel comfortable. I told her I’m sure she helped a lot of women and that I hoped she enjoyed every minute of her retirement.

She called me sweet.

And she remembered me by my tattoo. Which is on my breast.

Foster Kitten Jennifer Grey and Bean the Dog

When I left the hospital, I got the sweetest text that our foster kitten Jennifer Grey (who moved to the Teenager’s room last night for better socialization) is adjusting well.


Forgive me, but I’m finding myself too exhausted to continue,

so from this line down, I am writing about Monday on Tuesday


4:30 a.m. Tuesday, drinking exceedingly strong coffee as prepped on the delay setting by the Teenager.

Measuring Challenge at Work

My anxiety from my hospital visit followed me to work. I clocked it 9:07, which made it hard to do the math of where my numbers should be for the day, but I settled on a total of 85 fixes. And I hit 85 fixes. I was at a table on the right, not my regular table on the left, which meant a subtle shift of balance and more pressure on my right hip. The warehouse outbound supervisor herself brought me 22 refixes, or the work already in a box, which were pivotal in keeping my numbers where I wanted them.

I heard rumblings among my colleagues that no one is hitting “full performance,” so I’m not the only one. We were joking at lunch that in a few months they may reduce their workforce by 50% if they dismiss everyone not meeting the new numbers. I don’t think they’ll do that. The company has always been more than fair in the past. At lunch, Southern Candy gave me homemade fudge. I ate too much of the deliciousness and spent the next couple hours a little queasy.

The murmurings report that employees that are shared to other departments must still hit 90% of the new numbers and that their performance in those other departments will count toward their monthly miss-the-mark allowance.

The goal for my department is 16.25 per hour, but does not include time off for our ten-minute paid breaks. So I use my own numbers. Hour one should be 17, hour two also 17, then ten minute break, and 15 to finish the third hour to reach the official numbers. It’s two more hours until my lunch, and I try to maintain 17 per hour to “make up” for our final ten-minute break of the day.

So I missed two hours and 37 minutes of work yesterday. If I divide one hour (60 minutes) by 16.25, I get 3.7 minutes per box. (For argument’s sake, let me point out that doing the same using 17 unites is 3.5 minutes. So we are talking about the impact of seconds, but it adds up.) I missed 157 minutes of work, so using their numbers I should have lowered my goal by 42.5 fixes but I couldn’t do that math in my head. We are six days into the new system and I’ve already missed my two days a month. I thought I made it with 85 fixes, but my official target might have been 87.5. That means I did 97%. We’ll see what they say today.

I know I talk a lot about the numbers at work, but honestly it’s part of what I love about the job. 1. Numbers don’t lie. You can discuss why the numbers are what they are and develop strategies to meet them. I find calculating the numerical benchmarks to be soothing and an objective way to see how my day is going. And, while my employer would hate to hear this, it’s a good reminder that sometimes you can’t work harder only smarter and not everyone had the capacity to hit 100% of arbitrary numbers every day.

The calculations and my podcast keep my mind busy and allow me to brainstorm what I need to do for my publishing business. If I have to work full-time, I would rather work the blue-collar warehouse job than a white-collar office job that destroys my intellectual capacity and short-circuits my brain with stress. 2. I preserve my creative energy for myself. Listening to publishing-related podcasts, various sources of news, other creators and even some bizarre non-fiction stories keeps my mental focus on my goals and allows me to give my full effort to my employer while still working toward my personal goals.

3. I love the clothes. I have followed Stitch Fix since they launched, when The Teenager was a preschooler and I still had a subscription to vogue. I love seeing, touching and preparing the clothes for their clients. I love seeing the fixes, their color combinations, their textures and I love imagining the person who would wear them. I also like to make judgments of whether or not we could be friends based on their box. Because if you’re on fix #72 and I think all the clothes are hideous, that’s your style and we can’t blame the stylist or the algorithm. And since I write fiction in the fashion world, I love seeing the new trends and which items become perennial offerings.

I also took two muscle relaxers, after not taking them during the weekend. I’ve been curious if some of the strange feelings I have in my legs are from when the muscle relaxers wear off or from missing a couple chiropractor appointments due to other doctors’ visits. The jury is out– but the bottom line is with the muscle relaxers, working out and chiropractic care my body moves easier.

A much awaited visit to Back in Line Chiropractic

After work, I filled my water bottle and headed to my friends at Back in Line Chiropractic and Wellness Center. Not only is former physical therapist and chiropractor Nicole Jensen super smart and personable, but the staff contributes some extra care as well. When my schedule got out of control, office staff person B (as I don’t know if she would want me calling her out in a public forum) made sure I got not only one but two appointments so I could survive the holiday season with my mobility in tact.

I apologized to Nicole for letting three weeks go by without an appointment, and reassured her that I did not fall out of love with her. I summarized how life had gotten away from me, and by the time my trainer Andrew noticed that my legs were turning inward in an unusual fashion and I noticed I felt like the Tin Man in the Wizard of Oz, I luckily had called B and had my appointment on the books.

The noises my body made were brutal, but it’s a weird feeling when you stand up and your feet and legs feel loose, move freer and have a more easygoing gait. It’s disorienting. But it’s a good reminder than sometimes I need more help than I realize.

Nicole then shipped me off to Andrew at Apex Training.

The brutal workout at Apex

I love Andrew. I really do. I respect the way he has learned my quirks and can read my form. He has learned ways to troubleshoot what my podiatrist calls my “challenging gait” due to my cerebral palsy. But last night was a killer core and shoulders work out. It was awesome, and murderous. I am gaining so much upper body strength and am very impressed with my lower body function gains.

We missed some workouts recently because Andrew caught a cold and then took some family time for the holidays, but I told him it wasn’t fair that he was punishing me with heavy weights when we lifted and high reps in the more cardio-based exercises. After all, he had canceled not me.

Needless to say, when I got home I ate the lovely dinner The Teenager (lamb, broccoli and hand-cut, homemade parmesan fries) prepared and collapsed in bed. To wake at 3:56 a.m. before my 4 a.m. alarm.

Toe-day at work

I ran out of juice yesterday. Fatigue, lack of good sleep, adrenaline from publishing Larry Sceurman’s The Death of Big Butch (see a post by Larry on the Parisian Phoenix website today, click here), anxiousness regarding doctors’ appointments and my service dog application, the toll of my various foot and leg issues, and the excitement of my traveling companion, M, coming to visit all caught up with me.

Let’s start with a joke. Because it’s Monday. And we can all use a laugh. And this is clever.

What’s the worst thing you can read in Braille?

Emma Tracey, the Blind Co-Host of the BBC All Access Podcast

Before work, I went through my collection of protective toe devices. The little foam doo-dad the podiatrist gave me is looking rather worn and tatty, especially since or perhaps despite the fact that I’ve been hand-washing it.

The larger gel separators I wore over the weekend, held in place with the bunion wrap, seemed too big and the pressure hurt my toe more.

So, today I tried out the gel-line toe protector sleeve, which, according to the instructions, they make long enough for your finger. Doesn’t that make it a digit sleeve?

As instructed on the package, I held it up to my toe and then used scissors to trim it to the right size. And I wondered if the piece that remained after the cut might be large enough to use like a toe right to cover the damaged flesh and the portion of toe that rubs. This wouldn’t actually separate the toes, but it might eliminate the friction.

I decided to try it.

It fit! “Waste not, want not,” after all.

I wore my obnoxious patterned Vans sneakers (that came in one of The Teenager’s fixes. She proclaimed them hideous but I fell in love with them.). Ready for work.

We won’t talk about the fact that I struggled hard to get my socks on this morning. Sometimes my lack of mobility makes be feel like a T-Rex when I need to do stuff with my feet.

Today I handed my doctor-filled-out, official form for workplace accommodations to my supervisor.** Now my supervisor has been working in the other side of the warehouse. He will be there relatively long-term. This had me nervous, and I kept checking my work email seeking some sort of acknowledgement. None came.

Until first break, I clocked in at 100% of the Daily Minimum Expectation. But I fell behind after break. The official numbers don’t account for our 10-minute paid breaks. By official numbers, I was probably 102% or more before first break. By my numbers, I was around 98-99%. My numbers account for the breaks.

Around the halfway point of my shift, I had fallen to 97%. And then I got a phone call and Siri read me the voicemail. My examiner had called, stating that she would be denying my intermittent leave request if she did not get my form from my doctor by 5 p.m. Apparently, she’s in Arizona. Her 5 p.m. and my 5 p.m. are two different things.

I had filed for intermittent FMLA leave November 9, because the shift change I was forced to make in late October has made scheduling my doctor’s appointments nearly impossible. The company that administers the claims for my employer sent a form to my doctor, but it took nearly a week for me to find out which doctor, because I had given them the name of my primary care physician and my specialist.

The neurologist received the form November 12. (I know because the neurology office sent me a receipt and the parent hospital sent me a bill, which I had to scan the receipt and mail to the hospital over the weekend.)

My specialist couldn’t start the form until I paid the fee. For some reason, the office did not tell approach me about this until November 22. They called me while I was at work and I had to call them back once I had my wallet and was off the warehouse.

When I called them back, of course I was placed on a call-back list. I received the follow-up phone call mid-shift the next day (November 23), but luckily I had my HSA credit card in my pocket and I answered the call. I paid the $30 with funds from my HSA.

Now, the paperwork had a due date of December 9. But remember, November has a little holiday called Thanksgiving. Thanksgiving occurred on November 24 this year. My physiatry/neurology specialist called me around 1 p.m. Monday November 28. We had experienced computer problems in the warehouse and I had come home early. She spoke with me while she filled out the form and promised her nurse would fax the forms by the end of the week.

I had an appointment with my specialist December 9, so when I hadn’t heard from the examiner by the end of my work day December 8, I emailed her. I wanted to confirm she had the paperwork. And I wanted to file an absence for December 9, as I had two doctors’ appointments that day. She did not response until today, December 12, because she had been out of the office December 9.

Because she had been out of the office, she gave me the extra time to file the forms. But that extra time was four hours. I can’t even reach my specialist within four hours.

I emailed both the examiner and the neurology office, but heard from neither by the time the neurology office closed today. I guess this means my claim for a leave will be denied. I hope I can open a new one and either resubmit the prior form or ask the specialist to update the date on the form, or worst case contact my primary care physician and have him do a form and also attach the specialist form. “Luckily,” I’m still having issues with my toe which means I will probably see plenty of doctors.

Sigh. I mention this because this is what I’m obsessing over while I’m struggling to get my numbers at 100%. And I’m mentioning this because I am capable, and I can often find work-arounds other people don’t think of. But what if I were a disabled person that relied on caretakers and support staff? What if I had to rely on more people to coordinate these things? What if I had communication difficulties? It is exhausting to advocate for oneself.

Fast forward to lunch. I want to say my stats were at 96% or so. Our employer offered full day Voluntary Time Off for tomorrow and at this point I was stressed out enough to apply for it. I don’t have the money, but I also don’t feel like I have the stamina.

After lunch, my stats kept falling. They had reached 94% when someone “in charge” approached me to ask what my accommodations were because one of my peers (my sassy friend) had mentioned it to her. My supervisor had mentioned my accommodations to this person but she misinterpreted his concern to be about something else, until my sassy friend inquired about me. I think my sassy friend has become our elected leader.

After our final break, one of my teammates (who always supported me when we were on our own shift) brought me the easier work for me to do. Basically, he brought me the work already in boxes so I didn’t have to retrieve the items in the cart. I finished the day at 98.4% of DME which is amazing when you consider that about 75 minutes earlier I had been on track to complete 94%.

In addition to all of this, I never did hear back from the neurologist nor the examiner. The neurologist’s office is closed now. And when Arizona time reaches 5 p.m., my claim for intermittent leave will be denied.

And remember my toe? I had substantially less toe pain today than over the weekend, and no general foot pain.\

And I got the VTO for tomorrow.

Now the answer to our joke…

What’s the worst thing you can read in Braille?
Don’t Touch!

Emma Tracey, the Blind Host of the BBC All Access Podcast

And yes, I called Nan and asked her if she had ever heard this joke. When she heard it, she nearly bust a gut.

** If you’re new here, I have diplegic cerebral palsy and have worked in a warehouse folding clothes for two years. Today they changed the system of how they measure our efficiency. We used to get our weekly numbers averaged into our performance figure but starting today, they evaluate the figure daily. Without official accommodations, I won’t meet the daily figure. My typical performance is pretty similar to last week, when I did 101%, 101%, 101%, 94%, and 100%. When you average that, my performance is 99.4%. But I miss the mark usually one day a week. Now they only give us two days to miss in a month.

A Saturday with M, food at Allentown’s Damascus, an empty bathroom and a burning toe

Today is the day The Teenager planned to work on the downstairs bathroom, installing a new floor and finishing the paint. Our fellow cat foster has agreed to help her with this project, which is very kind of her. Originally, The Teen had off today, but at the last minute her boss added some clients to her roster.

So, as I write this, I have a belly full of pleasant Middle Eastern food after going to Allentown with M to visit the restaurant Damascus, which was once the establishment of our college peers whose parents emigrated from Syria.

My washer, dryer, toilet and floor have been removed from the downstairs bathroom and I have a burning, burning toe.

Where to begin…

I think the logical start might be our meal.

We arrived and inquired about the history of the restaurant, only to learn that the cousins who lived down the hall from me in college did indeed come from the family who founded and operated Damascus for 25 years.

We also learned that the family sold the restaurant about 7 years ago, but they still made amazing food.

I ordered the falafel sandwich and M ordered the garlic labneh, hummus and zaatar/oil.

My falafel came in a tight cylinder of pita, stuffed with crisp lettuce, hot peppers, tomato and dripping with tahini. It was lovely brown and crusty (in the good way) on the outside of the falafel, but soft and flavorful on the inside. They put a few hot peppers on, just enough to give the tahini some zing but not too many, protecting the flavor integrity of the falafel.

The hummus was smooth. The labneh creamy and rich with garlic. And as M loved to point out, the zaatar had the sumac he loves.

After our lunch, we shared some of the most photographic baklava I’ve ever seen and sipped Turkish coffee. I don’t know about you, but I love a strong Turkish coffee so rich it almost reminds one of chocolate. I didn’t add sugar, preferring to alternate bites of the succulent, picture-perfect baklava with the coffee.

The man behind us explained to his date in detail how they make baklava which involved lots of repetition of “they crush pistachios” and “they layer phyllo dough and honey” over and over and over.

M and I talked for a while sipping coffee in tiny cups and then drove to the Parkland area to see the new mosque under construction a friend had told him about when they met overseas.

On the drive home, my damn toe started burning again, so badly that I could not wait to get home and rip off my socks and remove my new toe separator. I believe I mentioned yesterday I bought each variety of toe separator available at my local CVS: the gel separator, the bunion wrap with toe separator and the gel toe protector.

My toe no longer looks inflamed, but the skin is still painfully tender and red with skin peeling all around.

I decided to wear gel separator with the bunion rap today. The gel separator felt much thicker than my normal toe separator cushion from the podiatrist. I really liked the wrap, but I really think the gel separator might have put too much pressure on the toe.

Festive Friday’s life (and cerebral palsy) updates

My traveling companion M is in town so I stopped very briefly to say hi. He’s staying at a hotel between Sheetz and Wawa, and he’s never been to either, so I have a Pennsylvanian duty to educate him.

His hotel has a few artisanal touches in an otherwise uninteresting and rather lackluster environment.

I received a message from M last night while I was at Barnes & Noble at the Noble Quills poetry open mic where Darrell was featuring. (See YouTube video below.)

My most-exhausting-work week ended with a few lessons. I noticed that no pair of shoes I own will alleviate the foot pain I am experiencing, though experimenting with different tape/toe separator arrangements I can select the type of pain I prefer to experience. With this in mind, I have purchase three different varieties of toe separators from CVS today. ($22 worth of merchandise that I got for $15 and I paid with my HSA debit card.) I achieved 101%, 101%, 94% and 100%.

I had my follow-up with the neurologist-physiatrist today. The Baclofen appears to help my stiffness, and though I do experience a weird jerky stiffness at the end of the day after I sit and then get up, I have not fallen and I seem to move easier. She filled out my accommodations paperwork… so hopefully I will get a share of the easier work. I offered several ideas of how to provide easy accommodations. (I shared the same letter with my doctor and Stitch Fix.) The doctor remarked that my gait had noticeably improved and I think she laughed when I told her I preferred walking in cowboy boots because of the sound and the feel. (She was wearing a mask, so I can’t be sure.) She also seemed to make a quiet noise of approval upon the mention of a service dog.

I had an hour between appointments and in that time, I hung out with The Teenager’s dog (F. Bean Barker). It was Festive Friday at work so I wore my favorite “Fleece Navidad” Christmas sweater.

I then met with my therapist. He was one of three people who served as references for my service dog application and because I mentioned I had a therapist on my medical team, they sent him a psychiatric evaluation to fill out. He wanted to review it with me, because he wasn’t sure of the weight of his role in the whole process. He was much relieved to hear that I had had the in-person interview last week (read more about that here) and that I had received the email an hour earlier stating that my home visit and canine therapeutic evaluation would be scheduled early in the new year.

So I said I would approach the paperwork as if they just wanted to know if I was stable enough to care for myself and the dog.

By the time I returned home from that appointment, the UPS man had left a special package on my doorstep. It was Larry Sceurman’s debut novella, The Death of Big Butch. And some other books from Parisian Phoenix Publishing. As is my custom, I did an unboxing on film.

Buy Parisian Phoenix books from Barnes & Noble here.

The Teenager and I did some chores around the house and loaded up the car with the dog and the books and made deliveries: to the author (where books were signed) and to people anticipating the release. And, because Larry lives near a 7-Eleven, the teenager needed to stop for a Mountain Dew Slurpee.

She happens to have one of her new sweaters on from her latest fix.

And the joy of bringing Larry his books warmed my Grinchy heart.

And watching Larry decide how to sign his books, debating which of his signatures should be his author-specific nomenclature, also had an impact. I’m proud of his book. I’m proud of the product the Parisian Phoenix team made– and I’m told the effort and the quality of the book are more than Larry had ever expected to see from his stories. After all, when he pitched his stories to me, Larry had figured he had a short story anthology to offer the world.

And poor Larry, I told him he had a novella in Big Butch, and still had enough stories for the anthology, and that one of the longer anchor stories in the anthology really should be a full length novel. He’s stuck with me for a while.

Barbara gave us some cut-out cookies. Buttery, not thick not thin, with a lemony or vanilla-y hint of something so scrumptious. Roll-otts as my Pennsylvania Dutch in-laws would say.

Larry and Barbara also gave me a large bag of cat toys, which we gave to foster Khloe for right now. She’s protecting them and sleeping with them like a dragon hoarding treasure.

Maybe I’m naive or egotistical, but I really love the craft model of publishing I’m creating– including my authors in every stage of the process and creating a book we all believe in, from the author to the publisher, the artists to the designer. I never thought publishing could empower, but I’m learning so much that I never realized I wanted to explore. Talents always feel better when you share them.

Almost there check-in

Good morning. It’s Thursday morning as I write this. I have hit more than 100% at work all week. I’m exhausted and behind at chores at home which appears to be my natural state these days. On top of that, we have no caffeinated beverages in our breakroom at work due to a countertop upgrade. I think we’re all about to mutiny.

Yesterday, The Teenager did a Dunkin run for our lunch break and made me and several of my friends very happy. Today, we all pledged to bring Thermoses.

I called my podiatrist on Monday and left a message with his answering service. According to the service, they should have returned to the office Tuesday afternoon, but I have not received a call.

I have been experimenting with shoes and toe arrangements. This had yielded less pain in my foot. I have found using the toe separator between my big toe and the next toe and taping both toes together has decreased the workload of the troublesome toe. My data might be too preliminary.

The pain from the neuroma only acts up about twice a day now. When exactly depends on which shoes I wear. And what type of pain the rest of my body experiences also connects to the shoes. Do I want generic foot pain? Hip pain?

Big Butch officially releases tomorrow. The print copies have left the printer, Amazon (and probably Barnes & Noble) will accept preorders, and the ebook is live on Kindle.

My diet has been a mix of trash and veganism, thereby counteracting the recent weight loss I had when I initiated eliminating potentially inflammatory foods from my diet.

This weekend I hope to edit the Parisian Phoenix website and take kittens/cats to the adoption meet-and-greet, while the Teenager works on the downstairs bathroom project.

Tomorrow is my big appointment with my absolutely amazing neurologist/physiatrist where she will fill out my official work accommodations form. Speaking of which, the hospital just billed me a second time for the intermittent leave paperwork I asked her to file.

And I still haven’t rescheduled last week’s chiropractor appointment.

Oh… and the Teen got a fix yesterday. Unboxing here.