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.

WTF? (or ‘Another Cerebral Palsy aware day.’)

I woke up by my alarm at 4 a.m. yesterday, and for the first time in days, I thought I could actual get out of bed. My body has been heavy with fatigue and a steady post nasal drip. I suppose that might be from closing up the windows with a bird, a dog, and 11 cats in a house desperately in need of a vacuum.

But even so, I laid in bed until about 4:20 cuddling the FURR fosters in my bed: tripod Louise and kitten Jennifer Grey.

I drank two cups of coffee, one Supercoffee and one Dunkin Polar Peppermint.

I even wrote about 500 words on my next Fashion and Fiends novel that I have been struggling with for months.

I was stiff and my back was achy and yesterday I noticed some of that burning in my toe but I thought perhaps I could blame my shoes.

I saw the chiropractor the night prior, the amazing Nicole Jensen of Back in Line Chiropractic and Wellness Center. Nothing really seemed amiss and things were moving well.

Yesterday at the warehouse I performed 97%. So I thought… why not… let’s take one of my baclofen pills to see if looser muscles might mean less stiffness and aches. It was the first time I ever took one in the morning. I’ve taken them in the evening and slowly taken them earlier.

The pill helped. It felt like I could swing my legs again.

The medicine reminded me that I never heard back from the neurologist’s office about the appointment they needed to move and the paperwork I submitted. So I emailed. Now, the portal that allows patients to email medical staff has a strict character count. While in the newspaper business, I had a nickname: the word count goddess. This was in the pre-Twitter days when no one cared about character counts.

I composed a masterful email that addressed all my concerns succinctly, but maintained a polite air. I love this doctor and truly want to make her life as easy as possible.

I performed most of the day at 100%, by my employer’s numbers, which don’t account for our ten minute breaks. Their numbers suggest we do 16.25 units per hour, but don’t change during the hours we have break, which is twice a day. Their default calculation means the computer thinks one unit should take almost 3 minutes 40 seconds. So a ten minute break (and a small amount of time to move to and from a work station) reduces the potential productivity of that hour by about 3 units. So to compensate for that difference, if you wanted to keep every hour equal, the units per hour should be 17.

My first hour, I completed 18. My second hour I only completed 16. Then we had break, (and my neurologist had sent an encouraging email back by that point and her nurse had suggested a time for my next appointment) and I completed 5-6 in the twenty or so minutes before we had a department wide “power hour” in which I completed 19. So by the midpoint of my shift, and even when I clocked out for lunch, I was at exactly 100% with no accommodations for my disability. But by lunch, my ability to bend was decreasing.

I felt like the Tin Man in the Wizard of Oz when he begs Dorothy for oil.

I had a cheerful lunch with my friends, and went back to work, still maintaining the official numbers for 100%. Even by our last break at 1:30, I was still 100%. But I was stiff. And feeling sluggish. So for the first time ever, I took a second baclofen in a day. My doctor suggested up to 3 a day.

My toes were burning at this point, making me wonder if my pain from my two Morton’s neuromas had returned. OR if my toes were rubbing because I forgot my toe separator doo-dad. OR if my toes rubbing (because later I saw and felt the bony, protruding tender spot where it hurts) impacts my posture and triggers the neuroma(s).

If the issue continues, the neurologist wants me to call the podiatrist. I stopped by his office last week to drop off $11.32 in cash for my copay and his office was unexpectedly closed. In the old-fashioned manner, I slipped the envelope in the door.

I worked as hard as I could the remainder of the day, now trailing behind because of my ten-minute break and at 2:30 p.m., 30 minutes from quitting time, the support team brings me the “easy” work and tells me it’s a priority. I end the day one unit away from 100%. One unit.

And somewhere around 2 p.m., the neurologist had called and asked for $30 payment for the form fee for my FMLA paperwork. I apologized and said while I completely would pay the fee, I was at work and didn’t have my wallet on me and I would get back to them before the holiday. I called them at 3:10 p.m. from my car, and was added to a call back list, because the wait time was 40 minutes.

I hope including this much detail might show how difficult it is to pursue medical care and to pursue official accommodations in the workplace. Medical care itself is a labyrinth. Navigating your way to a provider who not only cares but has the knowledge to help, maintaining the patience and persistence to pay the fees and follow the paperwork, and taking responsibility for lifestyle changes that only you can make. I’m fortunate that I can do these things myself. What if my disability prevented that? Would I be treated the same way?

Just throwing that out there.

So now the happiest part of my day— hanging out with my blind friend, poet and essayist Nancy Scott.

She needed to go to the bank and she wanted to go to the Dollar Tree to check out the Christmas decorations. We had a great time roaming the aisles with me describing all the goodies. Nan fell in love with an elf.

I said to Nan, “my leg is not working.”

I meant it off-handedly but I checked my phone later. And sure enough— my walking asymmetry was way off. Normally I fall when the spike hits 10 percent. It was 50 percent.

Hopefully today will go smoother.

The Toe Update

I asked for a table on the left today, because my body was so stiff, my hip sore and my toe felt like someone forced a knife through it and used it to anchor me to the warehouse floor. It happened about every hour, when the clock struck 20-something for some reason and lasted about four minutes as the pain slipped up the inside of my calf and hit my knee.

By 9 a.m., I had had enough. Interestingly, whereas yesterday I did 85%, today I believe I did 95%, and at 9 a.m. I was still about 97%. The left table had alleviated most of the stress on my hip.

I called the neurological physiatrist, and they could see me in April. The person who answered the phone would leave a message for the doctor, and her nurse would give me a call. Now, for the record, I missed that call which was around 4:45 p.m. because I was in an appointment with my chiropractor. But it looks like they may see me next week.

I also called my podiatrist, whose office manager scheduled me for 2:15 p.m. Friday and asked if she had a cancellation if I could come tomorrow. I said yes.

Around this time, a form went around via email asking who might be interested in a day off tomorrow. So I filled out the form.

I rushed home to take off my shoes and socks, and the toe looked fine. Well, red and a little swollen but not as bad as it felt. When I poked my toe and bent them all, my sore toe throbbed for several minutes afterward. So I elevated it.

I could feel the stiffness in my body and the phone kept registering asymmetry. I was very much looking forward to my visit with Nicole Jensen of Back in Line Chiropractic and Wellness Center. Even lying on the table, it felt like my right hip was higher than the other. And when she put her hand against it, she verified that it was. And she pushed on it, like her palm was kneading bread. But in one motion, not back and forth. Okay, maybe the analogy is no good.

We both agreed that the toe thing needed to be sorted out, and that skipping tonight’s workout with Andrew might be best. Nicole manipulated my toe gently, and asked what hurt, and since nothing really bothered me at the angles she was working, she started adjusting my toes. They made some funky noises.

I also feel two inches taller and as relaxed as I can get when she gets done with me…

The predominant theory of what is happening: (according to Andrew, myself and Nicole) I had some intense turning inward of my left leg this week, which may be in part because of a 5-day-a-week work schedule when I’m used to a 4-day schedule in two different jobs versus just one now. Add this to the fact that my table is on the right, forcing me to constantly rely on my right side to move shipments, stand on tip toe to grab boxes and twist to get clothes. When my left leg twists, my right side compensates. And all of this might have caused me to stand forward on my toes more. The added pressure and their curvature made them rub and irritated them and maybe some nerve pain is resulting. And maybe a blister. Or not. Who knows?

But a year ago, I would have horrible pain and difficulty moving. Around the beginning of the year, I started falling. That makes me want to investigate and not take the chance that this toe could start the downward spiral all over again.

Unlike that magic splinter I got. But that’s an old story. Read it here.

Let’s hope the podiatrist has some ideas for prevention and relief.