More good news: I passed my home visit

Although I have not received the official email, the representative of Susquehanna Service Dogs who came to tour my home today gave me the verbal confirmation that I will soon be on the waiting list for a mobility and balance dog. I’m just about one year in to the four year process, and the representative confirmed that it will be 2-3 more years until I receive a dog.

But that’s good as I have to pay off some debt and save the $5,000 to pay for the dog.

From what I understand of the process, I will spend some more time working with dogs so that the organization can evaluate exactly what I need from a working dog companion. I will meet puppies when my name gets further up the list, and eventually one puppy will bond with me and they’ll send that puppy to a puppy raiser for basic training and then it will complete its specialized training with Susquehanna Service Dogs.

When that dog turns two, a vet will evaluate him/her to make sure its joints and health are adequate for mobility work.

Then I’ll spend several weeks training with the dog before bringing him/her home.

I think by the end of the visit with us, the representative of Susquehanna Service Dogs might have been afraid we were going to pull even more animals out of some random places.

The teenager did a great job explaining all of her animal training techniques and procedures. Even if she did babble a little due to CVS running out of her ADHD meds and her forgetting her hearing aids… but the representative of Susquehanna Service Dogs was polite, loves cats, couldn’t believe how nice our neighbor was to let us use her fenced in yard, and seemed genuinely appreciative of The Teenager’s creative ingenuity regarding household problems.

So, yeah, a new adventure awaits.

Bride of Frankenstein: My tilt table test and one heckuva week

It’s been an on-again, off-again week of how I’m feeling. Same old, same old of issues with my hip, my legs locking up, and sometimes having the clearheaded nature to function like a normal person. Some days my blood pressure is high, other days it’s pretty damn perfect. Some mornings I wake up so lightheaded I stumble like a drunk, and… say it with me now… some days I don’t.

But yesterday had one bright spot– my “partner” at Susquehanna Service Dogs who will handle the final phase of my mobility dog application emailed and asked of she could do my home visit this coming Saturday. Why, I said in reply, that’s my birthday but I can tweak my plans to accommodate a visit. And the idea of this got me very happy.

And so we set the plans.

Today, I went for my tilt table test. If I had a Dr. Frankenstein fetish, it would have been quite the event. If I had teased my hair to flow upward, I could have been a Bride of Frankenstein’s Monster, since I was strapped to a table with large straps and covered with wires and tubes.

To make it more fun, my dehydrated veins (I was not allowed to eat or drink for four hours prior to the test) would not cooperate with the poor older man who had probably done 1,000 IVs in his life. The first attempt was in the inner arm of my right side, as the left completely refused to offer up any juicy conduits.

But seriously, they hooked me up to the ekg and monitored my blood pressure every 10 minutes. They strapped me to a bed that stands 70 degrees upright, and after 10 minutes at rest, they stood me up for 45 minutes to see if anything happened. Nothing did. So perhaps smug little doctor man was right. My symptoms aren’t consistent with POTS.

You know, the man administering the study said, your beta blocker can do that. (Meaning the symptoms I described.) But, I thought to myself, I had these falls that caused injury and required medical attention before I started taking a beta blocker.

Before I laid down to start the test, my heart rate was more than 100 bpm because of some inherent stressors in my morning. In comparison, when I first wake my heart rate is usually between 52 and 65 bpm. At work, my heart rate is typically between 75 and 95. My resting heart rate average for today, according to my Apple Watch series 8, is 64. And my walking average is 130 today, which, again seems a little high.

When the bed rose, it make me feel like I was drinking alcohol. Not all out dizzy but the world swirled. But it cleared up. The scary part was when my whole right hand fell asleep– because if you have read my previous blogs you may know that my left pinky is often falling a sleep and I feel like it’s a warning sign of an impending episode.

The pressure on my head and chest when they lowered the bed made me feel like I was being crushed, and the strain of standing completely still for 45 minutes made my right toes feel like they were getting frost bite.

It looks like my ekg and other results of the study were normal. Even my blood pressure behaved.

So, with a headache from barely eating, I visited Gayle for a quick meeting (I never quite realized she lives probably 500 steps from the hospital) and then grabbed some wings and fries from Wing Stop. And now I’m completely spent.

What if after all this… maybe the only thing wrong with me is that I’m overweight and out of shape?

Then, I got an email from the service dog people rescheduling my visit to 5/25. And when I got home, I had a birthday card from my mom. And since we got in another ugly disagreement on Mothers’ Day, she sent a bunch of old letters I sent her in my birthday card. No personalized note. No mention of celebrating. Just old mail. It’s a habit she’s had lately. Her own special passive aggressive way of saying “you used to love me.”

My daughter has another way of interpreting her paper trail of past communications.

Whatever it is, it’s exhausting. Ever since my dad passed away, my mom has been even more dramatic. She’s experienced a lot of loss in the last two years, as many of us have. I’m at my wits end. I haven’t had a connection to my father’s family for about six months now, and with all my recent health problems, the lack of familial support weighs heavily on me. It’s terrifying to have a known congenital disability and have something else going on that doesn’t make sense.

And it makes one’s heart hurt when you can turn to your teenaged daughter, your soon-to-be ex-husband, your in-laws and your work friends, but your own mother can’t even give you a courtesy phone call when you are in the hospital. Or, say, maybe she sends some keepsake letters in a birthday card, so even on your birthday, you can be reminded what a disappointment you are and how rather than celebrate you, your mother would rather make your birthday about her.

I just want a mom. I just want a mom who can see who I am without constantly criticizing me, or emotionally blackmailing me, or making snide comments about how I might be living my life. When I was a kid, I idolized my mom. And there’s that little girl inside of me who still wants to.

She grew beautiful flowers. Has a beautiful smile. But I look back on my childhood, and I’ve survived so much and forgiven so much, and laughed off so many things… and to constantly have her blame me for everything that’s wrong with our relationship is just not fair.

Because in my experience as a mother, I want to be there, I want to help, and I would probably spam text my daughter if she ever fell out of contact.

But we’re all different people I guess.

The update on life, service dogs, what it feels like to live with cerebral palsy, and other things I know at least one faithful reader is waiting for

I haven’t written in a while. Again. I’ve wanted to– I’ve started blog entries and not finished them. I’ve posted on Parisian Phoenix’s web site. Please, if you haven’t subscribe to the mailing list over there or on Substack. Or buy a book. From Parisian Phoenix directly or wherever you prefer to buy books. We have an affiliate shop on Bookshop.org, that’s another option to consider.

Meanwhile, forgive the cornucopia of prepositions in that title.

And I think it’s time to give another work friend an official nickname. I’m going to christian another work friend, the one with the stylish purple glasses that really complement her skin tone, as “Faithful Bizzy Reader.” She is one of my tribe, one of us who has migrated from Midnight Society to the Sunday cohort to traditional day shift at our Pennsylvania Stitch Fix warehouse. Those transitions, as brutal as they’ve been over the last 16 or so months, have made us a raucous bunch. At least, that’s how we behave at our lunch table. She’s noticed my sporadic posts, and today I admitted that my physical health has drained me to the point where I have nothing left to write.

The disability/cerebral palsy/dog stuff

As I’m sitting here, my Goffin’s cockatoo is grooming me, and I’m trying to get her to trim my hangnail. She’s really good at hangnails and splinters. If you never heard the story of the raisin that fixed my gait and how Nala the Goffin removed my splinter, you can read that story here.

I have dealt with various levels of pain on and off for more than a week now. I prayed that it would end with my chiropractor appointment last week, but it didn’t. It went from an eight to a two, so I was happy with the improvement, but then cycle of vacillating between slight and excruciating burning continued for days. My glutes, my lower back, my quads and sometimes my knees scream horribly. And when an “attack” comes upon me, standing there takes all my energy and makes me want to vomit. The burning sensation never goes away. My quads and lower back are throbbing with about a two of pain right now, seated in this chair at my desk. And my calves are pulsing. Maybe even spasming.

I tried taking more muscle relaxers. I tried exercise. I tried rest. Nothing seems to make it better or worse. I even brought Sobaka with me to the gym. (If you look at the photo on the right, that’s Greg who founded Apex Training with our neighbor princess dog who has been staying with us this week. Also, my name is very close to the upper left hand corner on the chalkboard wall.)

Interestingly, my trainer Andrew said my posture in some of my core related movements looked good. But man, every exercise was a struggle. Even the “pop-squats” he asks me to do, merely sitting down and popping back up as soon as my butt hits the bench required a lot of concentration. And I honestly don’t know how I survived hamstring curls as my legs haven’t wanted to cooperate with things like basic walking or stretching out my quads. But I did it. I was really hoping the extra blood flow would help.

But it didn’t. And after so many days of inconsistent pain, I just want to sleep for a week and stream TV.

My toe and my Morton’s neuroma have not been bothering me, but I did order my latest pair of shoes a half-size bigger.

And in positive news, I received an email from Susquehanna Service Dogs that they received my post-CTE (canine therapeutic evaluation) paperwork and will be reaching out to schedule a home visit. The final step between me and the waiting list for a service dog. “Both you and [The Teenager] provided awesome, valuable feedback in your emails,” my coordinator in the program wrote. “I’m glad that you had yet another chance to work with Miss Katydid– she is spunky!!”

The Stitch Fix stuff

I’ve been struggling at work. Luckily my stats, even at my worst days have remained around 100%. I’ve been on a downward spiral ever since I got sent to work in inbound processing for a day. That day, working on the back of a line on a table forcing me to pass baskets pretty far forward and to my right, shifted something. I don’t have an injury, but ever since that day, the pain I’ve grown familiar with in my hip has moved into my tailbone and quads. It’s nice that my femur no longer feels like it’s poking a hole through my pelvic bone, but now my muscles of my lower body always feel like they are overtaxed.

Anyway, whatever is happening in my body caused me to miss metrics three days in a row and now I’m in the middle of a probationary period of sorts known as “focus,” a first warning where Stitch Fix, my supervisor and myself work together to discover how Stitch Fix can “support me” because four rounds of “focus” can lead to termination.

Or I’m guessing will lead to termination.

I don’t know what to think– and once again I find myself placed in a situation where I need to be more of an advocate than I ever wanted to be. I enjoy my job. I love the people. I find the wages and benefits fair. But will it come to the point where I have to argue that 1. Their lack of following my approved medical accommodations during that day in inbound may have caused this whole situation (and I did not advocate enough for myself at the time, because I didn’t know it would f*ck me up) and 2. I have worked for the company for nearly two-and-a-half years and I have always experienced periods where I just cannot perform like the average person. Their recent change in metrics have placed me at a disadvantage, and I still have the capacity to do just as much work as the average person over longer periods of time, I just cannot do it every day. And the two days a month of grace they allow us does not fit my body.

So… keep in mind… yesterday I did 136 fixes, which is 105% of the daily minimum expectation of 130 fixes. I could have done 140, but I slowed down toward the end. In the old system, those extra fixes would have cushioned my numbers. Today, I did 130 while fighting nauseating pain and fighting for balance. I could have done 131, but again, it won’t matter. But in the old system, had I done 140 and 131, that puts me 11 fixes ahead for the weekly average, which means if I only made 120 later in the week, I would still hit my numbers.

I understand that they need consistent performance, but if you know an employee is giving 100% and that employee has a documented disability, that employee deserves a little bit of leeway.

I have a lot of questions about this “focus” concept. But, if once I get out of my focus period, how long do I have to perform at 100% before I end up clear of my record of first focus, because it’s only a matter of time before my body can’t do it. So, how long do I have to last before receiving a second focus, versus another first focus?

The fun Stitch Fix (fashion) stuff

There are several items in the Stitch Fix inventory I have wanted for a very long time. One is the Papermoon ember sweatshirt in dark gray that reads, “Weekend.” I love the cut of the Hiatus t-shirts. There is a Lagerfeld ruffle, striped tank top. Some Liverpool plaid pants. I could go on…

And since I received my discount back from The Teenager, I went on a bit of a shopping spree and bought some sale items. But, meanwhile, I kept thinking of the Skies are Blue Hannah modal blazer in magenta. It’s normally $88, incredibly silky, and the perfect color to represent Parisian Phoenix at events. Don’t confuse this with the Skies are Blue boyfriend blazer in magenta– the Hannah blazer is sleeker, softer and less boxy.

I earmarked the blazer as a favorite in my Stitch Fix account. It popped up in my proposed looks, as it does in the photo to the right. I already own that bag. I love that bag, the Urban Expressions utility tote in mustard if memory serves. I love the dress, but my middle-aged saggy mama belly couldn’t pull it off, and I would certainly wear those boots. But seeing this look made me cave and buy the blazer. Thank you employee discount! It headed out from the Breezy in Atlanta and should be here Friday.

The boring stuff

Finally, in household stuff: I still need to finish my local and state taxes, and pay the per capita tax. My drivers license renewal form came. I cleaned the air purifier in my bedroom (primarily caked with that chalky white bird dust) and must do a deeper than usual clean of the two cat boxes in my bedroom because I’m smelling ammonia in there. The Teenager had chicken quesadillas on the menu tonight. And I have a library meeting on Zoom at 7 p.m. I serve on the board of trustees at my local public library, the Mary Meuser Memorial Library.

So, there will be no sleeping for a week or streaming TV. Instead, I will attend my meeting and collapse in bed in exhaustion and get dressed out of the laundry basket in the living room because I just don’t have the strength to carry it up the stairs.

The Canine Therapeutic Evaluation (with Katydid) for a mobility service dog

The Teenager and I left for a bizarre mini-round trip down to the atrium outside the Bass Pro Shop at the dying Harrisburg Mall. I say dying, because the folks at Susquehanna Service Dogs reported that they will soon have to find a new spot to do their evaluations as the mall will soon be razed, except for the Bass Pro Shop.

The mall provides an open but indoor public environment for service dog trainers, handlers and dogs themselves to work with people who may wish to pursue a service dog. These dogs are commitments, and the idea of navigating in the world with a large dog can be overwhelming.Therefore, it’s logical to let people considering a dog the opportunity to see how it feels, in public, to work with a dog.

I had to bring a support person with me today, and that was The Teenager. I worked with the trainer and the dog, Katydid, the same dog I worked with at my in-person interview in late November. The Teenager walked behind with the case manager, who asked questions about what I could use in a service animal and filmed my interactions with the dog.

I thought my right leg was being obstinate, it felt stiff and rickety. The Teenager reported that the right leg looked great, even faced the correct direction, whereas my left leg “looked like a worm on a string.”

Everyone had a great time, and I walked about 4,000 steps with my friend, Katydid, exploring the different between leash walking, strap walking and a hard harness. The hard harness makes it really easy to feel my place in the physical space and match the dog’s gait with more confidence than with the leash or the strap, but it may also be just as good to have a thicker, sturdier strap on the dog that could give the same feel as the harness and be easier for the dog to wear. And I bet over time, as the dog team works together, both the dog and the handler develop a rhythm.

The dog can be trained to counterbalance, to retrieve things, to find help, to empty the dryer, to bring your phone, to help you up, etc. Your dog can learn where your first aid kit is and to bring it when you fall and need to clean your wounds. It’s truly amazing to see these animals excitingly perform tasks, especially these ambassador dogs who will gladly work with anyone who has treats.

The Teenager and I made an adventure out of the day– stopping at Sheetz for drinks, where we discovered this Sheetz had an entire aisle of slushy machines. We loaded up on slushy and sodas, ranging from cherry Coke Zero to Mango Pepsi to Cheerwine.

The mall itself also fascinated The Teenager, with its taxidermy animals and its creepy trees in the Enchanted Forest children’s area. The creepy tree looked eerily similar to the one in The Teenager’s bedroom.

We also visited 2nd and Charles where she read The Unofficial SIMS cookbook and had to buy a new floormat for the porch, a Dungeon and Dragons mat that reads, “Roll for Initiative.” She is her father’s child.

And then on the way home we stopped at Cracker Barrel, because that’s just the tradition when this family goes on any sort of road trip. I think we had the sweetest waitress ever. And The Teenager picked out a gigantic jawbreaker and a roll of Bubble Tape bubble gum that came with a label maker emoji toy. And I picked out the butterscotch peanut butter cups which I shared with The Teen in the car.

This is how we start 2023?

It’s 4 a.m. on Sunday, January 1, 2023.

The Teenager is on an overnight for a client, petsitting. Her dog is sleeping in her crate in the living room below my bedroom. I have Louise, the sweet foster tripod cat, sleeping in my arms. Bean, the Teenager’s dog, whimpers.

You see, I normally get up for work at 4 a.m. She knows this. I fall back to sleep and wake to barking at 5 a.m. Poor Bean thinks no one is home and she will be left to rot in the crate. So, I get up, let the dog out, and make coffee.

I struggled with my mental health yesterday. I was prone to depression, anxiety and even anger. I had to see some people whom I no longer trust, and whom I feel betrayed me. I’m stressed about some recent financial upheavals: an unexpected medical bill that I should have expected, uncertainty about heating the house and the borough announcing that the garbage service we have used for the last 20 years has changed, the rules have changed and the days have changed and the rumor is that the price has tripled– starting tomorrow.

All first world problems. Except for the relationships gone wrong. It hurts when people don’t listen to you or respect you.

I hit a new PR on the squat at the gym yesterday, 145 lbs. Everything felt like it was moving well, and I even did impressively on my hamstring curls (and my right hamstring is reminding me of that fact today.)

Our New Year’s Eve involved finally remembering to retrieve our medicines from CVS. I grabbed a couple of clearance Russell Stover Christmas hearts with three milk chocolates inside. And I used my 40% off coupon to buy a Duncan Hines EPIC Fruity Pebble Cake Kit. The Teenager was soooooo excited she baked it right away. We washed down the cake with some leftover Jewish Christmas cookies from Little Dog’s Mom. She makes incredible cookies.

Little Dog Sobaka, Little Dog’s Mom and I listened to the recent Christmas episode of This American Life, where comedian Alex Edelman discusses his first and only Christmas. It’s a great story of experiencing Christmas as an Orthodox Jew. It also looks like Little Dog’s Mom will be able to accompany The Teenager and I to the Harrisburg Mall on January 25 for my Canine Therapeutic Evaluation with Susquehanna Service Dogs.

I also made this weird little treat: I took a sprouted flat bread, spread it with vegan cashew cheddar, sprinkled it with organic parmesan and herbs de provence and drizzled it with cold-pressed extra virgin Lebanese-imported olive oil and toasted it.

But this morning, things took a turn. I texted the Teenager about a run to Dunkin on her way home. She arrived with her tea, my bagel and some hashbrowns.

“Where’s my coffee?” I asked.

But quickly it became apparent that the Teenager was doubled over in pain. I have never seen her like that. On Monday, the Teenager and her uncle came down with a fairly violence stomach bug that seems to have originated with the Christmas Eve gathering at my mother-in-law’s. The Teenager’s cousin and her family got it. My husband got it. I did not. Though I did fart heavily most of the week. My guts did churn a bit so I think I managed to fight it off.

As a consequence, the Teenager did not eat for about three days and her meals since then have been tiny but frequent. The smell of the hash browns in the Dunkin bag triggered intense pain. The Teenager nibbled a protein bar with her hash browns and laid down for a nap. I am waiting for her to come back downstairs. Here’s hoping she’s okay.

Of course, her dog became extremely distressed that The Teenager was not well. And the Teenager did not want to dog all over her in her discomfort. So, I opted to take the dog and run to Dunkin to get my missing cold brew.

“Bean,” I said, “Do you wanna go for a ride?”

The dog looked at me confused, as if saying, “did you say what I think you said?”

“Do you want to go for a ride?”

The dog leapt to her feet and ran to the front door and then the back not sure if we were going to the garage or the street. We headed into the garage. Bean hopped in the car. Dunkin made me a fresh cold brew and I bought the dog some munchkins which I fed her at every stop sign along the way home.

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.

A visit to Susquehanna Service Dogs for an in-person interview regarding mobility assistance

That title stinks.

But I’m exhausted.

The euphoria of today is wearing off after miles of traffic, construction zones in the rain, and accident after accident at the roadside.

I got up with my 4 a.m. alarm after an uneasy night of sleep, primarily because I knew I was driving down to Susquehanna Service Dogs’ new training facility about 75 miles away. Alone, as the Teenager had clients. Which made her very unhappy because DOGS.

Took a shower. Drank some coffee. Even did some work on my novel, Road Trip, the next volume in the Fashion and Fiends series.

Went to work. Only performed about 89% despite getting the refixes. My toe was burning, my neuroma pain was back at between a 6-8 and my hip was uncomfortable, feeling like it didn’t want to bend. I didn’t want to take my Baclofen, because even though I have had success taking it in the morning… it felt like tempting fate in a bad way to take a muscle relaxer before a solo road trip on a rainy day.

I opted to wear my Kassy Boot by DV/Dolce Vita from Stitch Fix. I agonized a bit over which shoes to wear. Did I wear my work shoes so I could walk as I do in flat soled Vans? I decided on my cowboy boots because it shows how I walk in public. And I can always take my shoes off.

The drive to the facility was boring thanks to the rain. I had hoped to stop for coffee once I got my bearings near them, but I had forgotten how much nothing there is in the area around the Rt. 78/81 split.

When I arrived, a service-dog-in-training came to greet me, as a test of his interaction and focus with new people around. I was told to pet him only when he successfully remained in his “sit” after his trainer told him to “stay.”

We tried three times, but each time he stood. So we didn’t get much petting done.

I read some of my book, made some notes in my journal and willed myself not to look so red. I got very nervous when the candidate before me seemed much older than I am and had a cane. Of course, my immediate thought was, “I’m not disabled enough to be here.”

I got to meet the woman I have been working with so far, but at this stage of the process I will now be working with someone new. The interview team included a volunteer, a handler, the administrator in charge of dog training and the person who I will be partnering with for the next stages of the process.

Today allowed them to ask me questions about my condition, what I think a dog could do for me, about me in general and I got to work with an ambassador service dog. She showed me all the tasks she could do and I got to walk with her using different techniques: just a leash, a soft strap, a stiff mobility harness and a leathery mobility harness that is softer for me to hold but more snug on the dog.

They videotaped me walking, with shoes and without, with the dog and without. The dog was such a goof and a show-off. I think she knows her job is to make people at ease and happy as much as it is to show people what a dog can do. The staff and volunteers complimented my boots.

The drive down took 90 minutes, but the drive home took almost three hours. But you know what? It was an amazing experience. To work with a trained, experienced dog and get a feel for the people– paid and volunteer– that do this incredible work.

A dog is an incredible commitment, but I also see how much the dog can do and what a valuable relationship a service dog and handler team can have. I’m so glad to have had the opportunity, and if the day comes that Susquehanna Service Dogs can place a dog with me, I’d be very grateful.

Work on the Cortisone Foot and Service Dog Update

The cats woke me up at 3 a.m. today and perhaps it was the cortisone shot but I could not for anything get back to sleep. But when I got up, the foot looked good except for some cute round bruises and I didn’t feel anything but stiff. By 4 a.m. I was drinking coffee and working on my NaNoWriMo word count for the day. And with all these photos I am taking of my feet I am sad and embarrassed that I haven’t had a pedicure since my friend left the business.

I got to work jittery from too much coffee and optimistic that I would slay the day. Until our 9:30 break, I was at 100%. No pain, though occasionally depending how I stood on my foot I could feel pressure or as if a bubble were on the bottom of my foot. By about 12:30 (which is after six-plus hours of standing) I had some ache in the toe but no nerve pain.

But my numbers had fallen to 89%.

You see, recovering from this means I know have to learn how to move my body in an efficient way again. And since I’m exhausted and trying to reclaim my performance, the combination is leading to some jerky movements that are stressing my back.

Meanwhile, my neurologist/physiatrist’s office called. They wanted to move my Friday November 11 appointment to Wednesday November 9. I asked if they wanted the same time. The nurse asked me if I wanted the same time. I told her that it didn’t matter I just needed to inform my employer.

Turns out that the doctor was not scheduled to be in the office that day and planned to come in just to see me. I told the nurse that wasn’t necessary as I had seen my podiatrist and now had a foot full of cortisone which was providing a perfectly adequate temporary solution. She insisted I needed to be seen. So I’m going in at 3:30 after work.

I forgot I had a chiropractor appointment at 3:45 that day so I moved that to Monday, November 14 because I’m not about to call the neurologist back and make her change the time.

They offered early dismissal at work today, so when I went into the system to cancel my time off for November 11, I added paid time to the day I took off yesterday and took the early out. I wanted a nap.

Fosters: Jean-Paul Sartre (almost 4 months), Giorgio (almost six months), and Tripod Louise (five years)

But when I got home…

These guys had other plans. (See photo of cats cuddling on me.) At one point, J-P didn’t realize the hand petting him was mine and he freaked out and attacked my arm as if he were defending my life. Until Louise snarled at him.

And in other news, I received an email from Susquehanna Service Dogs:

“Your application has been reviewed by the Partner Selection Committee, and we have added you to the list for a preliminary interview…”

Another form to have a medical professional fill out, this one attesting to my psychological health.

“… Our preliminary interviews provide an opportunity for you to ask questions as well as a chance for us to get to know you better. It will include two staff members, a volunteer and a demonstration dog that will be used to show you the ways in which an assistance dog can assist in mitigating a person’s disability. The interview will be held at our facility.”

So that’s exciting.

More on the service dog process here.

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

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

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

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

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

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

“It’s a blessing,” the man said.

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

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

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

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

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

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

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

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

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

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

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

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

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

I opened it.

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

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

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

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

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

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

I almost bought a pair of potato chips.

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

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

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

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

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

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

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

“You’re still here?” I said.

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

Only you, Gayle. Only you.

How to Deal with a Heat Wave: Ice Cream Dog Walks

“You better put in that application for a service dog.”

We hadn’t even made it half-way down our block and I already stumbled and fell. The teenager, her dog, and I had left our house at 7 p.m. on just another high-90s day. We were headed to CVS for ice cream.

The CVS is a 2,000 step walk— there and back— so we thought it would be good exercise for the whole family.

Plus, I had about $3.75 in Extra Bucks and a 40% off coupon. A pint of ice cream is $6.99 at CVS so I grabbed a whole bunch of singles and a handful of change.

The dog behaved really well on the walk, but my left foot did not— it kept twisting under me. I felt like I had to lift up my feet in exaggerated steps not to fall. Like high knees marching.

I stumbled twice on the way home but did not fall again.

The teenager made her remark about the service dog. I’ve spent a lot of time with her dog this weekend and thought… just imagine if this dog were useful.

I already did 90% of the 54-page application packet. I talked to those people I want to be my support letters (the teenager and my neighbor, as they would be my literal supports) and my references: the teenager’s father, cat foster godmother (who used to be a social worker) and my long-time therapist (whose wife is a physical therapist).

That leaves one thing: the medical evaluation. My own insecurities make it very difficult for me to ask for help. And it’s taken a long time for me to learn to speak up and out and advocate for myself.

I am nervous to ask my doctor— my family doctor of more than a decade— to do it. Part of me wants to wait until my appointment on August 19. But if he says no, that only leaves me two months to find someone else.

I think I need to call the office tomorrow and leave him a message to ask if he’d do it if I bring the paperwork August 19, or sooner if he wishes.

Again, I have doubts. What if I’m not disabled enough? I don’t want to waste anyone’s time. I don’t want to take a spot away from someone who needs a dog more than me.

But I’m struggling and I’m scared and I’m getting older. And I can do so much on my own but a dog would give me that much more.

I spent a lot of time on the application. Pretty much a whole day. What do you want the dog to do? What’s your typical day? Do you work? Do you volunteer? What are your interests and hobbies? Do you own a home? Do you have pets? Who lives with you? Do you drive? Can you handle travel? Can you take care of the dog? Are you able to train the dog?

If I can get ahold of the doctor’s office, as soon as I know someone will fill out the papers— I will tell my letter-writers and references to do their thing.

My therapist and I had a chat about it. His professional association discourages therapists from doing medical evaluations for service dog applications, but since I was asking for a reference, he was okay with that. He had no idea how many things a mobility dog could do.

He mentioned that in our current times, the emotional support animal and assistance dog phenomenon seems to be getting more and more prolific but that in my case, I’d obviously put a lot of thought into it, done my research, and found a program that could really benefit me.

Fingers crossed, I guess.

Oh, and the ice cream… it was $1.86 after my discounts. I had a $5 bill, five singles and 87 cents in my pocket. I paid exact change.