Tag Susquehanna service dogs

Reflections on Health Improvement (and other updates)

Angel Ackerman 1 Comment

Part One: Reflections on Life Insurance

Earlier this month, I received a letter from my life insurance company. When I turned 50, my term life insurance policy could no longer continue at the rates I had paid for 20 years… after all, I am old now and the likelihood of my death exponentially increases.

I thought I had reduced the coverage– after all, the house is almost paid for now and the child is almost out of college so the need to have a healthy policy no longer seemed so important. Now I just want to make sure the child can burn me up and dispose of my ashes. Apparently, I never complete the process and find myself receiving a new letter that my premiums are almost doubling, after they almost tripled last year.

I called the company, spoke with an agent, and reduced my current coverage. But to maintain a long-term policy at stable rates, I needed to prove I was insurable. I scheduled an appointment for two weeks out to have bloodwork, urine and measurements done as part of a physical. For that two weeks, I drank no Diet Coke, ate no added sugar, avoided salt and processed food, ate lots of fruits and vegetables, drank ridiculous amounts of water and took my vitamins.

I lost seven pounds in that two weeks. All while thinking about the fact that life is so much harder when you’re not traditionally healthy. It doesn’t matter if you’re fat or disabled or diabetic. Part of the issue with my life insurance stemmed from the fact that I had an incident of Afib with RVR after a bad fall four years ago. Here’s some of that saga.

I believe, and my cardiologist agrees, that the Afib occurred due to bodily trauma. It was my second hard fall in two weeks that required medical attention and my body had enough. I have not been taking any medication, and my blood pressure has been fine. (And part of me still wonders if food doesn’t play an issue in that.)

But I find myself thinking once again about the gatekeepers who decide what our lives and our bodies are worth, and yes, I’m referring to life insurance and medical insurance companies. It’s exhausting to have to prove to corporations and to doctors what goes on in our bodies.

I finally had a chance to look up the numbers for my test results (and I downloaded the PDF and sent it to my doctor). Most everything looks really good and even the results in the cautionary zone of normal (all the stuff that relates to blood sugar and what not) are still normal. So, we’ll see if the insurance company declares me healthy.

Part Two: Service Dog Update

Yesterday while I was in Maplewood, N.J., with R. Diskin Black, the poet and writer and YA novelist who wrote The Night of Swaying Grass, (an experience I wrote about on my Substack newsletter here and hope to write more here in another entry) I checked my email while we were preparing to leave the diner where we had a classic New Jersey meal: eggs and hashbrowns at two in the afternoon.

I had an email from my service dog program where I have been on the waiting list for a couple years now. This might be the first post I made about filling out the application. 4 years and one month ago. They said then that the process took 4-5 years. This is a post about my early in-person interview. And here’s one from my most recent visit to the training center.

ANYWAY.

The email was from Deb Tack, the executive director at Susquehanna Service Dogs. I open it.

Hi Angel,

I am reaching out today to extend an invitation for a Meet the Dogs session. Please read the following information on how to sign uo and what to expect:

I froze. “Meet the Dogs.” Does that mean what I think it means? My heart skipped a beat.

Now, a few weeks ago, I admitted to Eva that I often felt like I was a failure because I haven’t been able to pay off a $20,000 personal loan I took out when I lost my job at Stitch Fix. It hangs over my head like a car payment without the car. I mentioned that in all this time I haven’t touched any of the money that I have saved to pay for my service dog (some of which came from that $20,000 loan) and that maybe that shows that I should be working harder to pay down my debts, that I do waste too much money, and maybe I should use some of that service dog money to reconfigure some household debts.

“But,” I said, “If I did that, the service dog people would tell me my dog was ready.”

So… Is my dog ready?

I didn’t finish reading the email. I mentioned it to Ray, who in his professional life was a lawyer. I offhandedly mentioned, “Of course, this could happen now. I have my little part-time job in a restaurant so I wouldn’t be able to bring a dog.”

“Why not?” he asked.

“It’s food service. I could bring the dog there to eat, but I can’t bring the dog behind the counter.”

“Isn’t that discrimination?” he replied.

“Put your lawyer brain away!” I told him.

We continued our outing, and checked the oil in my car with a dryer sheet from Food Lion, and read the email in the car, quickly, and forwarded it to Eva without finishing it.

I texted her.

I sent you an email. If you want to call and talk about it, give me ten minutes to find the highway.

Eva, the practical one, replied: I’m leaving for work. We’ll talk when you get home.

When I get home, I don’t have a chance to talk to Eva right away. I book an appointment for September 25, because it’s the only day that Eva and I can both go. It means I have to reschedule my day trip with another author, Geraldine Donaher, but I think she’ll understand. Or so I hope. Then– and only then– do I print and read the letter.

– What is goal of Meet the Dogs? The goal of a Meet the Dogs session is to begin to understand what type of dog you fit best with and what definitive task list our trainers will need to train your dog to perform. We intentionally invite more Partners than there are dogs available to ensure that we are able to make a match. Not every Partner will match during their first session, and some may need to come back for multiple sessions in order to find their match. Overall, our goal is to match you with a dog that you will be able to have a successful bond and work well with for many years to come. 

– What happens during a session? Members of the Partner Services and Training staff will meet with you for your session. First, we will spend time discussing any pertinent updates and then delve into which tasks and cues would be most beneficial, as well as places that a trainer should focus on taking your future dog to train. Then, you will have the opportunity to meet 2 to 5 dogs-in-training, work with each individually for a brief period and provide your feedback. 

– What happens after my session? Following the session, the SSD team will meet to discuss their observations of the interactions with each dog along with the dogs’ responses and strengths.  Approximately six weeks following your Meet the Dogs session, you will receive an email regarding whether you have received a tentative match along with information regarding Team Training. 

– Can I bring someone to the session with me? Absolutely- We highly encourage that a support person/s are present. While they will not interact with the dogs during the session, they will be able to be a second set of eyes, help with building the task list and take pictures and videos should you choose. 

As you can see, there’s a lot of “maybe” in this whole letter– and there’s more when you schedule the appointment. The confirmation reads:

“More potential partners have been invited than there are available dogs to help us ensure we find the right placement for each dog. We know everyone has waited a long time, and those who do not receive a tentative match will experience disappointment.”

No, I won’t be disappointed. I have no doubt the dogs will know. The right dog will find me and any potential disappointment will be flanked by resolution and commitment– that the closer I get to meeting my dog, the more I have to take care of myself, the less excuses I have, so that my service dog and I will have a good life together. When I think back to the animals in my life that meant the most to me, I didn’t pick them. They picked me.

And this dog– this dog is a working dog. This dog has to want to work for me.

Some things are worth the wait.

Some general background

I have applied for a light mobility service dog to improve my gait and help me recover from falls. Statistics show that walking with a dog automatically helps people with an unsteady gait walk better, and my dog will do small tasks of retrieval (fist aid kid, light folding stool), potentially carry items if I need my hands, get my phone if I need help, or pick up items from the floor if I can’t bend. Crazy to think that the steady walk of a dog, and being near it, could decrease my likelihood of falling.

The program with which I am working breeds their own puppies, sends the puppies to families for raising and basic obedience, and only when they are two years old can a dog ethically be cleared for light mobility work. The dog must be cleared by a veterinarian to be healthy enough, big enough and have the bone structure to do such work. If I understand correctly, once the dogs return from their puppy raiser families, they learn certain tasks ALL their dogs learn. Like how to walk with different gear.

And depending on the type of mobility gear– only certain dogs will do that work. A mobility service dog can wear a hard hardness, a soft harness with strap, or just a leash. The bulkier the gear required, the more likely a dog might not want to wear it. In my case, I would be fine with just a leash, though a strap might not be the worst thing.

But there is one potential hang-up for my dog… In my evaluations, if I remember correctly, we determined that while they train the dogs to walk on the left, my dog needs to walk on the right, and the ambassador dog I was working with did not like walking on the wrong side and fought me a little. Apparently, according to Eva, I walk like a drunk with the dog on the left and walk in a straight line with the dog on the right.

Once the dogs are tentatively matched– and the dog could still wash out so even that is not guaranteed– the dog spends time training for the tasks for its handler’s specific needs. Then, a few months later, the dog and its handler spend more than two weeks in an intense in-house training program.

So, it’s an exciting time, and either way, I’ll meet some cool dogs.

Balance Assessment at Susquehanna Service Dogs

Angel Ackerman 1 Comment

About three years ago, Eva– my daughter, in the beginning of her career as a pet caregiver and dog trainer– said she wanted to train me a service dog. She wanted something to babysit me once she left home or when I was home alone.

She showed me some videos and I did some research and thought she had a point. When she leaves home, I will be a 50-something woman living alone with a history of falls and accidents. The presence of a dog in my life would keep me active and prevent spasticity issues, improve my gait as a dog’s gait never falters, and perform small tasks like bringing me my phone or picking items off the floor.

I have no doubt that with the right puppy and the time, Eva could train a service dog. But I suggested that for our first experience in the realm of service dogs, we should apply to an official service dog program.

Working with a program would teach us how the dogs are trained, give us support, guarantee good breeding and the physical fitness of the dog, and have some added legitimacy should people question my dog’s work.

Now there are no rules that prevent individuals from training their own service dogs. I think this is why one can encounter a variety of “fake” service dogs doing public access work. [I saw two service animals in the same restaurant this week. One looked like a well-trained Labradoodle with a handler who wasn’t cognizant of her surroundings. The Labradoodle was lying across the main floor area of the restaurant and not tucked under a table. The second was a small dog, perhaps some sort of schnauzer who barked and begged and whined and scratched at its owner’s leg for food the entire time. So, either that handler was having a medical emergency and the dog’s alerts were being ignored or the dog was not properly trained. A working dog should not make noise in public and it should not be distracted by food.]

I understand that training a dog with an agency or a professional trainer is expensive, but people who insist on using dogs for public access that are not properly trained make life harder for those people who have working dogs that don’t misbehave. Improperly trained dogs with public access are the dogs more prone to cause an incident with another dog.

And once I pay for my dog– which will take ALL of my savings– if that dog is attacked or threatened while working in public, that could impact its ability to do its job in the future. My dog might become afraid and unable to focus on its job. So I will have invested all of my money in a dog that won’t leave the house.

In the United States, there are no rules or governing agencies that regulate service dogs. There are, however, rules about what people can ask to a handler of a service dog– Does this dog do work that mitigates your disability? What tasks does the dog do? That’s it.

I have chronicled my service dog adventures on this blog. Here are most of the entries. (I am also working on a disability memoir.) There’s a lot to the process. My dog will be a light mobility dog.

They say the average placement takes four years start-to-finish. We filled out the application with Susquehanna Service Dogs in Summer 2022. I went to their facility and had an interview, fill out a survey of my life and health every six months, did an assessment while working with a dog where they recorded me, brought Eva with me to do public access work in a mall, passed a home visit, collaborated with a case worker to develop a plan of what my dog would actually need to do, and now yesterday, I went back to the facility with Eva for a balance assessment.

They had a mobility professional join us– I believe she was a physical therapist– and I worked with the dog and showed them how I get up off the floor and answered questions about my life and recent fall history. I love when Eva can come because she can tell them her insights. Apparently, she was annoyed because physically I was having a good day yesterday.

I worked with Captain. What we learned was that my dog will need to walk on my right. The dogs are trained to walk on the left, but when the dog is on my left I struggle to walk in a straight line. When the dog is on my right, my posture and ambulation is much more natural.

We also decided that my dog will be guided by a leash, versus a strap or a mobility harness. A mobility harness is rigid and has the most feedback between human and dog. In the photos, I am using a red strap on the far right. The strap was okay, and it’s an intermediary step between the harness and the leash, but it didn’t feel natural. (And the benefit of using leash only is that it gives the dog more freedom and space to get out of the way when I fall. Some dogs are trained to do things when a handler starts to fall, but I want my dog out of the way.)

It also seems like I’m at the proper place in the timeline. The next step: When they have a group of dogs that are flexible enough to work on the right and the right size to work with me, I will get to meet them. It might take a few meetings to find the right dog. Once the right dog is selected and assigned, I believe they will do any specialized training while boarding on site and then I go to their facility for a three-week training session.

The dog itself has to be two-years-old and fully grown and cleared by a veterinarian before entering the work force. Moibility dogs have some of the hardest and most physical jobs out there for service dogs.

All things fitness, mobility and service dog

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The last week or so I feel like my strength in the gym (Apex Training) has been dead on– the lifts have come easily and even as my feet/lower body doesn’t cooperate, I seem to get the job done without compromising my other body parts. Andrew, my fitness trainer and strength coach, has been a wonderful support and motivator as life has gotten dramatic and hectic for both of us.

Today I lifted a new PR on bench press– I am up to 80 pounds! As for flexibility and core strength, from my angle it fluctuates every day but Andrew points out a lot of his observations which suggest I am improving more than I might realize. I have noticed that I stumble less, even as my toes drag and my balance falters, knock on wood I have not fallen since Sept. 30.

I have gained back all of the weight I lost, between gin sours and peanut m&m’s and all sorts of chips from the Dollar Tree. And too much pizza! Even with The Teenager home after having her wisdom teeth plus a back molar removed, I’m still eating too much junk– milkshakes, cheese curds, the Wawa chicken fingers and french fries, Macs received for free with minimum purchase of a Diet Coke for me and a Sprite for the Teen all in the name of surgery recovery.

Meanwhile, I can see my muscles gain definition so I know if I’d stop putting junk in my body ALL THE TIME, I could really lean out and have great tone. But the immediate satisfaction of treats and savory, salty foods steals my discipline and knowledge every time.

As if that alone weren’t enough to kick my ass back where it needs to be, I’m starting to believe that the occasional out-of-breath episodes I’m having are symptoms of exercise-induced asthma. My allergies have been bad. The weight doesn’t help. And I noticed more and more that it comes on all of a sudden, even when I’m walking on a flat surface setting my own pace and not with anyone else, and I cannot get air into my lungs until I repeatedly take breaths through my nose and get a breath deep into my chest.

Today, it happened at the gym. I have never had anything like this happen at the gym. I was doing sets of 25 crunches on the exercise ball and really had trouble catching my breath at the end of the set. And I love those crunches! I normally knock them out like a beast!

Light Mobility Service Dog Update

Yesterday I was scheduled to meet with my caseworker at Susquehanna Service Dogs on Zoom. She asked if we could please reschedule for today and as I kept the end of the week open not knowing how the Teen would do with surgery, it worked out fine.

Today the Teen, myself and the caseworker met to discuss what my dog might be trained to do as a task for me, any concerns I might have, and some more updates about my lifestyle. The number one goal I have for this endeavor is to be able to go on walks by myself without fear. I miss my days of going for a 4-mile walk in the morning. I want that piece of mind. The other tasks that I asked for are help retrieving things from the ground when I can’t bend, carrying items I might have in my hand if I find myself struggling for balance, and getting a first aid kit if I need one.

When survival means blending the personal and the professional

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This week I have been laid off for two months. It’s hard to believe how the time slips by so quickly. I look at my calendar, perplexed at how it can always be so full and wondering if it will ever yield anything of note. And perhaps it doesn’t even matter.

I haven’t offered much in the way of personal blogging recently. I have been piecing together clients, hustling to make a buck, volunteering and showing up more than I should in order that I might build relationships that go somewhere. I hope some of the ties I have forged in the last eight weeks will create the kind of ties that yield interpersonal rewards even if they don’t present professional ones. Because in the end, if you foster the personal relationships, people trust you with their business.

But I realized yesterday, that I spend probably 8-12 hours a day reading, writing and/or editing and my poor brain never gets a break. So, I called Southern Candy and invited her over. She brought our favorite doughnuts (ours meaning she, myself, and The Teenager; flavor, sour cream) and despite the fact that I had a discount milkshake from Sheetz for lunch, I had a dougnut for dinner.

It looks like I gained back every ounce of weight I had lost since the gym initiated its Christmas resolutions challenge. With about eight weeks to go, my hopes of reaching my goal had dwindled thanks to free Big Macs and too much Dollar Tree snack products.

My mobility has been rocky. When my gait is stable, my pain seems high. When I’m not in pain, I tend to fall. Since I’m unemployed, I applied for medical assistance and if approved, maybe I could do some physical therapy. I can always use physical therapy.

As if reading my mind, I received an email today from my caseworker at Susquehanna Service Dogs about creating my Personal Placement Plan or my P3. I scheduled that Zoom meeting for the end of the month and have to say it’s exciting to think about what my service dog might be able to do.

It’s also interesting to see how different people react to a lay-off. I’ve had people seem as if there’s something wrong with me that I haven’t found a new job yet. I’ve had friends and clients ask if The Teenager and I are financially okay. And I’ve heard some interesting news that some people think they know and influence my financial affairs even though they haven’t spoken to me since before the lay-off.

The holidays are coming up, with Thanksgiving kicking off the season next week, and with so many family members who seem to have disappeared, including my mother and stepmother who don’t reach out to me anymore and I don’t understand why, I’ll be trying to create my own traditions and my own sense of what I want my life to be. But sometimes, and lately more often than usual, I miss my family.

Random Thursday nonsense: a trip to the neurologist, strange items brought home from a warehouse, the start of goodbye… and caramel apple coffee.

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I feel a little guilty right now because The Teenager has a sore throat and what appears to be the start of an ear infection. It’s a common occurrence for her and nothing says “back-to-school” like an ear infection on a 95-degree September day.

I had a good day, and despite my ongoing sensation of exhaustion (none of us who work at the Stitch Fix Bizzy Hizzy sleep well these days) I am experiencing an emotion I think I recognize as joy. It is bittersweet as I had to say goodbye to two work friends today, and many more will go tomorrow.

Speaking of the warehouse closure, I’m starting to feel unsure whether we are closing a business or a preschool. Today’s free pile included lanyards, insulated branded lunch bags, gift bags, inflatable guitars, bingo cards, and raffle tickets. Yesterday I brought home stickers, pipe cleaners, serving trays made out of cardboard-ish, egg carton material and I almost had a collapsible storage cubby but a random elderly colleague came over, took it out of my hand and said, “excuse me, that’s mine.” I handed it over because 1. I’m not acting petty over free things and 2. I was taken aback (but not surprised) by the gall.

My neighbor whose nickname I can’t recall had the other cubby and she offered hers to me, but I declined. She picked hers up fair and square. And really, I don’t need more random stuff.

I’m going to bounce around in this blog post, but I’ll try to use subtitles.

Sharing my words

So I went to my neurologist/physiatrist today and I gave her one of the Parisian Phoenix books, Not an Able-Bodied White Man with Money. We had talked about it the last time I saw her and she told me to email her the info because she wanted to buy it. No one has ordered that book since the last time I saw her, therefore I thought it was safe to bring her a copy.

She started flipping through it right away. She teasingly chastised me for distracting her, and I told her that next time I would save books for the end of the visit. She also mentioned she had a patient whose wife was considering approaching a breeder about a mobility dog prospect for her husband, and she (my doctor) wanted to know the name of the program where I am on the wait list.

My doctor believed it would be too much expense and too much of an undertaking for this couple to buy a dog and have it trained as a service dog, especially since they don’t even seem confident that a dog is right for them. My doctor suggested looking for a program, and I offered to speak with them if they so desired.

When I left the office, I discovered organizers of the Artful Dash on the Stirner Arts Trail here in Easton reached out via Instagram to ask if they could use photos from my blog to promote this year’s 5K. I, of course, gave them permission.

Medical stuff

Today was my last specialist appointment before my benefits change. My team and I seem to be on the same page, and they appreciate the fact that I pay attention to my body and try to implement lifestyle habits to counteract any health issues.

My gynecologist, primary care physician and my neurologist/physiatrist all agree that some of my current stiffness and bladder issues may stem from a combination of stress and change in exercise habits. Now that my increased sodium intake seems to have eliminated my orthostatic hypotension and decreased my fall risk, I am working on losing weight (ten more pounds off by Christmas I hope) and paying more attention to my urination issues. My current management of my potential incontinence symptoms includes using a toilet every time I see one, and honestly, unless I start having recurrent issues in public I’m not concerned. It could be, my neurologist said, that my theory that my days of bad spasticity means my bladder might be having spasms, too.

And the random tingling limbs so far is not a cause for concern. But, as always, I have a list of symptoms to watch for.

Random Caramel Apple Iced Coffee

We received Wawa gift cards at work last week and I stopped yesterday and got a caramel apple iced coffee. Now, I don’t normally like Wawa’s iced coffee. It’s too weak for me. But the cold brew was a $1 more and I’m cheap.

It was delicious, though I do wish the coffee were stronger and they never put enough ice in there so it’s always warm by then end. Because I don’t normally drink sugary coffee I was buzzed by the time I got to the gynecologist.

7 more days

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I wake up at 4 a.m. It’s ridiculously early, but it allows me a bit of writing and thinking time before delving into my day. And the reality is here that I only have to do it seven more times. Some of my friends are leaving Stitch Fix this week, one is done tomorrow. We are all human so some people leaving tomorrow I won’t miss, and many I’ll never talk to again.

Every job loss experience is different– and no matter how much warning you have or how prepared you think you are, it takes a toll.

People will offer advice, or enthusiastically recommend avenues of employment that won’t work. Some people begin to critique your finances, which isn’t any of their business, as they gently suggest maybe you shouldn’t have taken your daughter to the movies last week. (We saw Strays and the Barbie movie, because both have some significant statements on society’s behavior while maintaining humor and also, well, being a certain level of amusingly dumb.)

My daughter started college at Lafayette, and I wanted to celebrate this milestone with her, but we both have more commitments than time and sense. So to sit in the dark together and laugh seemed a good use of our time and money.

My doctor sent me a note that he’s concerned about my elevated cholesterol, total 183, “bad” cholesterol 107, which has me a tad perplexed because it’s been at this level for three years and we all know my diet needs work and has had some recent challenges, especially when I’ve used fast food to quickly raise my sodium levels.

I reviewed my food diary from this summer and there were only two instances all summer where my daily cholesterol was more than 200 mg/day, when the daily recommendation is under 300 mg/day. I think as I focus more on returning to a better weight, as I work to improve my mobility, this situation should improve. Probably more than half my diet is plant-based.

Speaking of health and mobility, Susquehanna Service Dogs sent me my paperwork for my six month check in. Everyone on the wait list must check in every six months.

Today I go to the gynecologist for my annual. Tomorrow I have my final check-in with my neurologist/phsyiatrist before losing my insurance. (We’re going to discuss my increased stiffness and recent reliance on my chiropractor and my urinary issues.) And Friday I visit my chiropractor.

I also received my first shipment of products through Amazon Vine. Amazon contacted me since I tend to leave reviews on the products I buy and offered to make me an official product tester. They asked me to test a purse organizer, which seems a strange product to offer, but The Teenager has put the item to work. We also received a pair of pet nail trimmers, which were very nice, and a bird toy which the cats loved but Nala is not so sure yet.

More good news: I passed my home visit

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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

Angel Ackerman 1 Comment

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

Angel Ackerman Leave a comment

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

Angel Ackerman Leave a comment

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.