My mother-in-law mentioned that she was making fried chicken and potato salad for Christmas Eve dinner, so I of course said I would come. If there is something I love, it’s her fried chicken and potato salad. She also made ham and a honey glaze. And stuffed shells. I put honey glaze on my chicken.
My brother-in-law made figgy pudding. That was tasty.
My mother-in-law always has a heap of homemade Christmas cookies and the family fruitcake recipe is unbelievably tasty. And the goofy sugar/coconut/strawberry JellO crystal cookies are one of my favorites.
The Teenager says she likes when I come to family functions, because I liven them up a bit with my big mouth.
My mother-in-law makes a LOT of cookies
The kids opened presents– the eldest great-grandchild received a learn-to-tie-your-shoelaces wooden shoe (The Teenager received the same but in book form at that age) and “The Old Lady Who Swallowed The Fly” finger puppets (as The Teenager also did as a child, except the Teenager received a creepy old lady doll with a creepy gaping mouth). I tried to engage the whole family in a sing-along of There Was An Old Lady Who Swallowed The Fly, because all the children in the family, I believe even back to my husband and his siblings, were raised with that morbid song.
No one went for it.
If you don’t know the song, here’s a version on YouTube.
I’ll give you some nice holiday photos of the tree and The Teenager opening her exciting new clamps from her uncle, who always knows what she needs for her growing tool collection. And she also kept swapping out the baby Jesus in the manger for first a goose and then a turkey.
With our bellies bursting with cookies and figgy pudding– so yummy, I do love figs, we left Bethlehem to travel to Nazareth to visit one of my former Target colleagues who now works there. We exchanged some Christmas hugs. I put gas in the car. And The Teenager got a salted caramel hot chocolate.
I am determined this year to explore new Christmas traditions, so when my Jewish neighbor invited me to deliver Christmas cookies to her deceased family members in the cemetery I said sure. And even though it’s 9 degrees outside (yes, that’s Farenheit), I had a great time.
The neighbor in question is “Little Dog’s Mom,” who made a reservation for my dear Sobaka to visit in April. This is exciting! We always love to have the Morkie (maltese-yorkie) come to spend the weekend. She’s such a fun little dog. And total side note, speaking of dogs, I have been scheduled for my Canine Therapeutic Evaluation with Susquehanna Service Dogs on January 25.
This means The Teenager and I, because you must bring at least one support person, are heading to Harrisburg Mall to work with a service dog. It’s a test to see if the dog helps me or provides a challenge. And also gauges how I will interact with a service dog in public.
The three of us— Little Dog’s Mom, myself and The Teenager— bundled up and piled into Little Dog’s Mom’s car for the ride to nearby Easton Cemetery.
Parents and SisterAunt and Uncle
Little Dog’s Mom carefully explained each cookie, and lined them up nicely, while explaining that the squirrels and other animals would get a nice treat.
She tried to give everyone their favorites, and having lost my father last Christmas— which to me still qualifies as “just last Christmas”— it touched me to commune with relatives who have left this Earth even if they aren’t mine.
The outing had some levity after that as Little Dog’s Mom told us about a flamingo Christmas sweatshirt she had contemplated buying with her 40% off coupon at CVS.
We stopped to look at it, and The Teenager surprised her by buying it for her with our 40% off coupon. Then Little Dog’s Mom let me use her 40% off coupon to buy one for us.
To thank us, Little Dog’s Mom took us to McDonald’s for diet cokes.
I consider myself agnostic, animist pagan with a foundation in some Christian values and appreciation for religious myths. I wonder if maybe I would be a better Jew than Christian, but in the end I think our behavior overshadows our labels when discussing the “goodness” or “worthiness” of a person or a way of life.
I have struggled with my share of issues this past year– as many of us have and do– but yesterday was the start of Yule and the Teenager wanted to lean more into our pagan side.
She purchased a small live tree and wanted to decorate it with items in homage to nature, such as pine cones.
Today was my last day at work before the holidays and the leadership team have designated that I get all the pre-boxed work. For some reason I felt energetic and more myself in months, if not since my father died. So, I decided to take the early out from my shift, clocking out at 9:44 a.m. I came home, had a cup of coffee, did some dishes, and whipped up some really yummy macaroni and cheese.
It was that good that the dog and I licked the bowl and then the dog ate the spoon. Oops!
I invited Gayle over– because Gayle knows the fleeting nature of my holiday spirit– and she brought a summer sausage to share with the Teen and I as we ended up popping and stringing popcorn for our miniature tree for Yule. The Teen brought down the sewing kit which is really an old, plastic storage bin for Matchbox cars that we stashed yarn, needles and other small sewing implements on one side and The Teenager moved all our embroidery thread to the other.
While it may be under three feet tall, and has only pine cones and popcorn on it, it stands in our living room like a marvel.
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.
I have faced challenges recently unlike the previous difficult times in my life. I no longer live with my husband. My father passed away a year ago this past Thursday. I don’t hear much from members of my family. The health issues that come from aging with a chronic condition like cerebral palsy, while my prognosis is static, present their own difficulties. My cerebral palsy will never change, or get worse, but the complications from having spastic muscles, scissoring legs, years of toe walking and leg bones that don’t sit where leg bones were designed to sit are very real.
This week, for many reasons ranging from family stress to communication difficulties and new and old volunteer commitments, pressed my mental health beyond the point I like to go. I watched a lot of TV.
I also spent much time cuddled into my new Stitch Fix zipper hoodie. But I did peel it off to wash it today, and put it right back on my body.
And my curls came out nicely today. Thank you, curls.
Television viewing
I caught up on The Good Doctor (and while YES! Audrey Lim decided to accept her disability rather than go through a risky surgery, at the midseason episode now the team decides she has recovered some movement on her own and a new less risky surgical plan might restore her mobility. Even her new boyfriend in a wheelchair says she has to do it, and he proposes, to prove to her he’s there whether she can walk or not. The episode ends with her in surgery. If the surgery succeeds, I will be pissed. Will they then feature an interabled relationship? Why must she walk again? Why can’t we have an able-bodied fancy surgeon become a wheelchair user and excel at it? It’s ridiculous that mainstream television starts to show an able-bodied person accepting a serious disability and then again reverts to the idea that she must walk again. And disabled people know, no one complains louder, no one takes adjusting harder than an able-bodied person suddenly rendered less able.)
Wow. I didn’t expect that tangent.
With that caught up, I tried Little Women: LA and a few episodes of Little Women: Atlanta. I learned some of the varieties of dwarfism, and was forced to thing about discrimination in hiring, but as with most reality series, the focus seemed to be on drama. The Atlanta spin-off really heightened the drama. Within two episodes, we had a pregnancy with an indifferent father and jealousy and cat-fights in the clubs. Because if you use Little Women: Atlanta as a source (which I would not) apparently stripping is a great way to make a living and still collect your disability checks. I was not born with that kind of disability.
I heard a podcast featuring Randall Park and thought I would try his Netflix series, Blockbuster. That was also a disappointment. The humor fell flat for me, and I struggled with the concept. There is one Blockbuster video store still in existence, in Bend, Oregon, and USA Today wrote an article comparing the fictional last Blockbuster and the real one and honestly that just confused me more.
So, I went for Hoarders season one on Hulu. It’s amazing after having binge-watched later seasons during previous times of emotional crisis to see how unpolished the initial season is. You can see the crew determining what works and what doesn’t. The cinematography is more dramatic, but the professional only have two days to clean massive hoards and they slowly tack on more time.
At this point, I renewed my Motor Trend streaming service and will stick with Mike Brewer and Marc “Elvis” Priestley on Wheeler Dealers.
Rocking New Boots
I finally got to wear my new Marc Fisher over-the-knee boots! The Teenager worried about me leaving the house in higher-than-usual heels. They were so much fun to wear and didn’t feel any more uncomfortable than other boots.
I left my house around noon. I had promised to bring Maryann some books as her tavern is featured on the cover of The Death of Big Butch. I delivered her copies, visited for a moment (but not as long as I thought I would because the traffic and road closures in downtown Easton made it impossible to drive the three miles to her. It took FORTY minutes.), and heading for my lunch with Bill Prystauk, the author of the Kink Noir series and a long-time writing friend.
We had a lovely meal at Gap Diner in Wind Gap, Pa., a midpoint we select between his location in Stroudsburg and mine in Easton. He had a spinach and feta omelet where the rye toast had this perfect dark line around the edge but the bread remained flexible. The potatoes were also picture perfect. They had this crisp outside and looked soft on the other side. I had pepperpot soup and the buffalo chicken Caesar salad. I was a tiny tiny bit disappointed that the chicken was chicken fingers cut into bite sized pieces but honestly, the beauty of the shredded romaine and its luscious green color won me over.
It was a good eating day as the Teenager brought home fresh bagels from the bagel deli and I had had a salt bagel with piles of kale and spinach and hummus for breakfast, an iced coffee for an afternoon treat, and a dinner of heaps of vegetables (kale, squash, potatoes, sweet potatoes, cauliflower and zucchini), a vegan chicken tender and a token amount of pork.
Much better than yesterday when I ate a double steakhouse cheeseburger from DQ, cheese curds, pretzel sticks with queso and a blizzard (snickers/brownie) so large in came in a medium soda cup.
Visiting her Ladyship Maxine
From Wind Gap, I traveled out to Point Phillip through some scenic roads to visit photographer Joan and deliver her copies of Big Butch, which apparently I would trade for celery and pears. Joan and I are often trading edibles.
I met the younger stepson, the grandson, and even got to pet the adorable Maxine, a striking cat of great renown. As soon as she heard that I was the one who alerted her people to the existence of Tiki Cat cat food with shrimp, she sniffed and rubbed against my boots providing me with the ultimate blessing.
And Joan gave The Teenager, myself and her own self a Yule present: a game called Ransom Notes, basically Cards against Humanity but with magnetic word stickers. The Teenager cannot wait to play.
All in all, I think I put 50 miles on the car.
I received a phone call from a journalist trying to convince his editor to write a story on Big Butch. And I participated in a speaker phone call with The Teenager and her grandmother (my mother-in-law). She revealed that she would be having fried chicken and potato salad among the offerings on Christmas Eve so I may now have a social obligation that night. I love my mother-in-law’s fried chicken and potato salad.
I last checked in with this blog on Monday, December 12. Today is Friday. I have diplegic spastic cerebral palsy and my workplace recently changed the way they measure our performance. The company switched from a weekly average to a firm daily number. I work in a warehouse folding clothes, and I’ve been there more than two years. Why do I do physical work when I have a disability, skills/talents and plenty of higher education?
Because I’m tired of emotional stress and the politics in a white collar office environment. I’m tired of being underappreciated, never getting credit for the good stuff I’ve done, and I’m tired of my creative, intellectual energy benefiting some entity other than myself.
I also love the mindlessness of my current work, listening to podcasts and brainstorming my own projects during the day, and my team. Working in a warehouse environment has brought together a diverse mix of people that I wouldn’t get to interact with otherwise. And I feel like this particular company, this warehouse and my supervisor and team give people opportunity and respect when other people/companies wouldn’t.
I have been struggling with my body for about a year. And my employer has never given me any trouble due to my disability. But, I also know that I will fail in this new metric system. So I applied for workplace accommodations and intermittent FMLA leave.
The leave request ran into some complications when the fax never seemed to make it to the absence management company. On Monday I contacted my neurologist to ask if they could fax it again.
On Tuesday, I took all-day VTO and ended up getting some frustrating communication from one of my volunteer activities. The kind of stern communication that feels like a betrayal and makes you reevaluate some relationships and commitments. I spent most of Tuesday sleeping and watching Hoarders. Because nothing makes you feel more psychologically grounded than seeing the homes in Hoarders.
The neurologist’s office followed up with me on Wednesday. I contacted the claims examiner via email to update them, and it was Wednesday afternoon when I received an email with the document and uploaded it to the claims management company.
This was the same day my supervisors at work asked me to submit the accommodation form I had given them to my claims examiner. Which I happened to have a scan of that document on my phone so I did.
I received word today that my intermittent FMLA leave was approved.
As for accommodations, Wednesday a friend from my roster saw to it that I got some work that was easy for me. By my calculations I hit 101%. But I was told I hit 111% because I receive extra non-production time for talking with people about my accommodations.
Before we left on Wednesday, one of the kind people from the original day shift brought me some of the work that was already boxed for me to set at my station for the morning. I also took the time to box the items from the bottom of my previous cart and get that ready. But when I returned to work Thursday morning, someone had taken my nicely packaged work.
It also happened to be the one year anniversary of my father’s death and I was at work when I got the call that I needed to come to the hospital and say goodbye. So, my emotions are on edge because of that, my anxiety is acting up because of the issues with my leave and my accommodations and the other things in my personal life.
My friend from my roster tried to get me pre-packaged work. I took VTO at 11:30 and I thought I hit 105%. The official number was 103%. I would estimate that half my work was the stuff that is easier for me. Thanks to that friend on my roster.
Today I again took VTO, this time at noon. I packed 89 fixes, by the skin of my teeth, which should be 100%. Only 24 of those were prepackaged. So less than 30%. I received more troubling news about three-and-a-half hours into my shift that made me realize that no one that could be considered my family has invited me for Christmas. I’m 100% okay with being alone, and Christmas usually ends with me in a panic attack, but I didn’t anticipate that suddenly at 47-years-old my daughter would be my only family.
My toe has been feeling much better, but I’ve only worked part-time this week. But I think the gel protector ring is helping tremendously. No nerve pain. But my right leg definitely feels turned in and clunky.
I think my life has been challenged on every front recently. The nice thing about such challenges is that they can inspire new beginnings and allow you to mold what you want out of life and stop living to other people’s expectations.
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.
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.
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.
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.
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.
Angel Ackerman 