Tag baclofen

Well… That’s a first

Angel Ackerman 1 Comment

Every week, usually during the weekend, I walk down to my local CVS. It’s about a half mile away, and between my daughter and I, we usually have a prescription to retrieve. And if you buy items at CVS regularly, it triggers a variety of digital coupons that can have a domino effect and yield good deals.

Today I had about $5 in ExtraBucks, plus a $2 off a $12 purchase, plus some digital manufacturer coupons in the CVS app, and some product-specific CVS coupons that I planned to add to a 30% your full-price purchase coupon.

I bought a 90 count of Total Home kitchen trash bags (which were similar in price to a 100 bag box at Target), plus eight-gallon trash bags that were expensive for the number of bags in the box. BUT– I had a $5 off $15 coupon for Total Home trash liners AND the 30% total full-price purchase coupon, and the $20 box of 13-gallon bags would guarantee I hit the minimum after the 30% reduction.

Eva needed large bandages and some first aid cream, which was also full price. My bill came to about $43 and after coupons and discounts was $20.31.

On the walk home, I stumbled walking up my least favorite hill. I could feel my feet dragging but just didn’t have the strength to fight them. Here’s the odd thing– I lost my balance because my toes were dragging upward along the sidewalk. My arms went out, and normally at this point I do a bit of a corkscrew roll to minimize the damage as I attempt to fling myself onto grass.

But today something very unusual happened.

I recovered my balance. My hands hit the ground, but my body bent more like a hinge instead of crashing into the concrete. I didn’t even scrape my palms. I bent; I stood up. I walked home.

Never in my life have I recovered my balance once I put out my hands and braced for the fall.

Never. Ever.

Now, when I got up this morning, I gave myself a stern talking to because I did not go to 8:30 a.m. Boot Camp with Greg at Apex, my favorite local private gym. My back hurt and I was groggy and a host of other excuses. So I made myself promise that I would walk to CVS.

I need to do some straight leg deadlifts and other exercises for my back and legs but I’m not that motivated yet. And I stumbled at home trying to walk around the vacuum cleaner at the bottom of the stairs (Eva got a new vacuum cleaner, well, her third of the same model) and tripped after the CVS trip over a huge cardboard box right in front of my eyes. But neither led to a fall. Let me repeat, neither led to a fall.

I’m having more leg, hip and knee pain than usual, perhaps due to the dampness, the rain and the drop in temperature. Who knows?

I checked my phone and before I left for CVS in the first place my walking asymmetry spiked to 36% and before and after the near-miss fall registered at 2%. Now, let me reiterate (as my favorite doctor would say) that these phone figures are far from precise or even scientific, but they do seem to accurately reflect trends in my gait. My fall risk/walking steadiness consistently gets classified as “okay.”

But when you look at the last six months, you can see a drop. And while both are still within the range for “okay,” I wonder about it.

And for the record, last night, at my four-hour shift for my very part-time job that has somehow become 23 hours a week (thanks to some staffing issues and I can understand that), I worked at least five different positions.

I did some standing still, then a lot of walking around across a nice stretch of distance, and then I stood still some more until 2.5 hours into my shift, I was asked to cover a break delivering food inside the restaurant. At the beginning of that change, twice over the first five minutes, the asymmetry registered as seven percent. Did I notice it? No. Did it happen beyond those two instances? No. And after that 30 minutes, I went back to a position where I primarily stood still but also did a lot of stocking which meant moving to various storage locations and lifting boxes of various weights.

And the pace of the restaurant means my heart rate is usually between 120-130 for my whole shift. I noticed last night it reached 172 bpm. That’s my maximum heart rate at my age! My heart is supposed to be physically incapable of doing more than 170 bpm.

As I promised my doctor, I have been taking my allergy medicine, watching my blood pressure and taking the appropriate prescriptions and taking my baclofen. I’ve been good about taking at least 10 mg before my shifts.

PS– the anecdotal evidence is mounting that the Twinings Sleep + vanilla and cinnamon tea with melatonin not only tastes like a baked good, but it also increases the amount of deep sleep I get. I will still keep Traditional Medicinals Valerian in my rotation, but Twinings is a definite win.

PPS– I ate almost a whole can of salt & vinegar Pringles last night and gained a pound overnight. And because of how Omada measures your success as an average of the whole week, they have my weight listed as 163.5. It was 161.5 yesterday and 162.5 today.

Energized

Angel Ackerman 2 Comments

I’m energized in a way I haven’t been for a long time. And hopeful.

And once again I find myself greater for a strong, smart medical team that genuinely listens and cares.

It’s been a while since I had a medical update, and part of the reason for that is because of my high deductible medical plan that makes it more expensive to receive care. I am a big proponent of high deductible plans– because with an HSA they can save a lot of money, but I do not have an HSA. My current plan has out-of-pocket costs that are twice that of my previous plan. I’ll be paying $120 a month for the next two years to pay off my MRI from earlier this year.

And you haven’t seen any fitness entries because I haven’t worked out in a very long time. My coach at Apex Training took a hiatus for a family emergency and has not returned, and I no longer have the money. I have a feeling the guys at my gym would offer me some sort of deal– they have always been reasonable people, but life is so uncertain I just didn’t have it in me.

And food has also been an issue. As my food budget is also highly restricted.

These realities, especially for someone proud and stubborn like myself, are a constant reminder that it is not easy to be poor and take care of yourself, even without factoring in a disability. I believe having a mobility disability, which in my case is diplegia spastic cerebral palsy, makes me more away of how important diet and exercise are.

We all hear it all the time– that all of the body’s systems work together and that food, rest, and exercise provide the foundation and potential to fix a lot of problems. And in my case it’s easy to see the impact. It’s been about six months since I stopped working out, and my spasticity has reached a new level of inconvenience. I have spent much of my life in jobs that did not involve sitting behind a desk, and that, coupled with the lack of gym routine, has taught my muscles that we sit. And when my muscles learned something, they remember.

I need to start healthier routines. Eva is remodeling our garage and will move all of our weights, resistance bands and other equipment out there. And I am walking more. I get what I consider reasonable step counts about three times a week. I might even start walking the dog.

But about two weeks ago, I had my second episode of crippling muscle spasms after a day of walking. And I walked with a cane for a day. That also drove the reality home. I have never used a cane before.

In the midst of all of this, once I realized how out-of-shape and out-of-breath I was, I scheduled an appointment with my neurologist/physiatrist. This was a couple months ago and she couldn’t see me until Dec. 31 at 4 p.m. But they put me on a cancellation list and moved me to November 6.

My doctor arrived and immediately called me stylish, not knowing I picked my clothes to keep my weight the lightest possible and when she noticed my red boots, I had to let her know that they were on the floor next to my desk and I didn’t have it in me to look for other shoes. (But later in the visit, she acknowledged how my choice of boots also makes walking easier and the ankle height of the boot gives me more support. All part of why I love boots!)

She also commented about how long my hair has gotten, at which point I had to remind her that we hadn’t seen each other in more than a year. “Really?!?” she said. I nodded. (We set up another appointment for April so that doesn’t happen again.)

She gave me an exam and noted all my muscle tightness and had me walk around the office for her. And we talked about my hopes to improve my habits– because I know my role in my situation accounts for most of my everyday problems.

(And my cardiologist never got back to me about going off my beta blocker, but I did stop taking it. I have seen more incidents of high heart rate, but nothing significant or repeated, and most of it can be explained by diet or exercise. Eat a Little Caesars pizza? End up with a racing heartbeat. Do short stints of rapid walking? Also high heart rate.)

She suggested I resume taking my baclofen regularly and to up the dose to 10 mg if needed, up to 3 times per day. I took it regularly while working in the warehouse and have been taking it now when I feel I “need” to.

As she made a written note of all my lower body muscle issues, she asked if I might be interested in an ambulatory referral to a medical fitness exercise specialist at St. Luke’s Anderson Fitness & Sports Performance Center. “Sure,” I said.

They called me while I was driving home.

And when I learned it was $99 for the three-month fitness program and that insurance might even pay it, I really was glad I decided to go see my doctor. I made an appointment for intake evaluation on Monday and maybe soon I’ll be using my Clever Fox Fitness journal.

This is what the website says:

Medically-based exercise programs for those with a chronic disease and / or disability. Designed to increase exercise tolerance and enhance functional capacity. For all ages.
Join us and get ready to THRIVE!
$99 three-month fitness memberships are available to all patients and clients referred from St. Luke’s Weight Management, Physical Therapy at St. Luke’s, St. Luke’s Cardiopulmonary Rehabilitation, St. Luke’s Physicians and St. Luke’s Oncology.

https://www.slhn.org/fitness/fitness

Three-point fall

Angel Ackerman Leave a comment

I am so sick of disability-related posts. My goal today is to start the March newsletter for Parisian Phoenix, which I will be distributing via Substack. Yesterday felt like a beautiful spring day and today, today there is two inches of snow on the ground.

I’m tired. And sore. And stiff. I called out from work today, although I’m fairly certain I have no paid time off for it. The Teenager and I have major bills do this week, and they scare me, but I have (and she has) placed every spare penny we have into paying them. And they will be paid.

So, before I back up, and explain exactly what happened since I closed my computer yesterday afternoon, let me say that my plan has been to take better care of myself. To stop pushing myself to keep up with the people who don’t have the same issues that I have. To ask for help. To be honest– not only with others, but with myself.

I have planned to organize regular long weekends every three-to-four months to give my body time to recuperate from the stresses of being on my feet folding clothes all day, and to give myself time to finish larger projects for Parisian Phoenix Publishing. That hasn’t happened, in part because I’ve spent so much time sorting myself out with medical appointments, and also because November through February incorporates a lot of paid holiday time.

I closed my computer yesterday afternoon and The Teenager asked if I wanted to take the dog for a walk.

Now, let’s think about the conditions yesterday:

  • It was a beautiful pre-Spring day and the sun made everything alive.
  • I woke by alarm at 6 a.m. to meet Southern Candy at the diner, where I ate salty food and drank three cups of coffee so my blood pressure was creeping up.
  • I went to the orthopedist, but was unable to get an appointment with the hand rehab people.
  • I was going to the chiropractor in about an hour, for the appointment last week that I had to reschedule because of my fall.
  • I have not gone to the gym in a week because of the fall.
  • My legs are covered in painful bruises.
  • I was a little hungry.
  • I had taken Baclofen* in the morning, but not since.

Interesting side note: CVS ordered my baclofen refill last week, as they did not have it in stock, and I haven’t heard from them since.

I felt good. Nothing hurt. I hadn’t noticed any balance issues. So, although I felt a little wiped out, a short walk sounded good.

The Teenager suited up the dog and put her cat in the cat-backpack and we headed up the street. We made it halfway up the block, cat screaming in fear, when the dog noticed other dogs and got nervous. And I had what The Teenager called “a three-point fall.” I immediately assumed it was a basketball reference but she explained. I stumbled, froze in the air for a second, and then fall. I believe the fall at work was a three-point fall as well. That frozen time she witnessed was me actually making a decision what to do next. That is the second where I have to decide whether to fight the fall and try to regain my balance or use that second to frame the fall and try to control the impact.

In this case, I opted to throw the fall to the left to protect my already injured right hand.

The sidewalk and the meat of my palm met as I aimed for the grass, now a barely visible scrape. The Teenager declared we would turn around. I told her I could turn around and she could keep going, but she promptly declared this was a less-than-ideal experience for everybody.

Now, at this point, I have a new short-term disability claim open with Matrix, waiting to hear when and how often the hand rehab people want to see me. With past experience, I’m fairly certain it will be once a week. But, before committing to returning to work, I would prefer to talk to them and was hoping they would call back and see me today, and then, if necessary, I could email or hand-carry paperwork to my PCP to decide whether we would pursue the new STD claim for my hand or amend my intermittent leave parameters that cover my cerebral palsy.

My claims examiner is confused, and since I have not received all the information I need to make a decision, my answers are rather wishy-washy.

Also, the weather is calling for snow. And I have this nightmare of me leaving my house in a snowstorm when I already have mobility and hand issues.

I head to my beloved chiropractor, ready for her insight and her physical therapy knowledge. Meanwhile, my neurologist/physiatrist who I had had a brief texting conversation earlier in the day, texted and asked if anything else could be happening in my body to cause these issues. I’m typing the list of answers: lack of chiropractic care, lack of gym, lack of Baclofen, bruises on my legs, high blood pressure. I am scheduled to see her in early April.

And meanwhile– we still don’t have an answer for why my quads were burning a couple weeks ago and why my “normal” issues in my hip joints seem to be moving into my sacrum.

So when Nicole the Chiropractor gets her hands on me she declares that my hips and my sacrum are all locked up and my lower body is stiff. She gets everything moving and pushes everything around. And I stand up feeling like a jelly fish, so loose it takes me a while to remember how to walk.

I haven’t heard from the hand rehab people. The neurologist has probably finished her day. My right side is starting to ache a bit. I drive The Teenager to the post office and we stand in line behind a Karen who criticizes every customer in front of her for not using the post office correctly, gets to the counter, and very promptly gives my favorite postal clerk a hard time when she discovers that Priority Mail box she has packed her materials in is a Priority Mail box and will cost $17.10 to mail. Even before she hears this news, she badgers the postal clerk about how much it will be, and he’s confused because it’s a medium flat rate box so it’s $17.10. And she then snapped that she had to text the person receiving the package because that person will have to pay her back. The postal clerk suggests maybe she buy a different box from the postal supplies station in the lobby and then he could mail it for $10. But she grumpily agrees to pay the flat box rate.

We return from the post office– having mailed cookies to a friend of The Teenager who has joined the service– and I head into the house and realize I left my glasses in the car as my prescription sunglasses are on my face. I head back out to the garage and walk down the narrow cement steps to the car bay. Half way down, my ankle gives out, twists underneath me, and I somehow manage to lower myself to the ground without falling down the stairs.

I pick myself up. Everything feels solid. I text the neurologist. I return to the house. The Teenager expresses concern as I took too long to walk to the garage and back. I explain what happened.

She orders me out of the kitchen and she says she is going to make dinner and I am going to sit. I use the time to email my supervisors and call out for today, because I think it would be best if my body had some rest. I email my claim examiner and tell her to cancel my hand-related claim, because this whole incident is definitely something we have to deal with as a cerebral palsy issue. And I tell her if I need to contact my primary care doctor and have my intermittent leave parameters amended I will.

I ate a pile of peppermint kisses, a moon pie, and a rice krispie treat after dinner and washed it down with Diet Coke. Despite that, my weight is down more than two pounds this morning and my blood pressure is fine. My lower back and right side of my lower body hurts, but I’m hoping my morning dose of Baclofen will reduce the stress on my joints. My arm still hurts from my Tdap booster.

I don’t know what will happen next.

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

Angel Ackerman Leave a comment

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

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

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

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

Now onto the cerebral palsy update…

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

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

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

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

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

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

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

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

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

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

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

I hate “calling out sick.”

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

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

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

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

A lot of trial and error.

Festive Friday’s life (and cerebral palsy) updates

Angel Ackerman 1 Comment

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.

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

Angel Ackerman Leave a comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Just throwing that out there.

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

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

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

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

Hopefully today will go smoother.

Is it time for Botox… in my hips?

Angel Ackerman Leave a comment

Before I get rolling on this, my second blog entry for the day, let me show you Jennifer Grey (Dixie), the foster kitten who still doesn’t trust people much. Here she is, nestled in my sock bin and hiding from the world. And another photo of her with her brother Giorgio. Giorgio is the sweetest, quietest boy and looks gigantic next to her. But then, I think foster Jean-Paul Sartre, two months her junior, is also bigger than her.

So, I went to my specialty neurologist, the physical rehab doctor. Who laughed at my “Emotional Support Animal” t-shirt with the image of Animal from The Muppets.

She thanked me for being flexible and moving my appointment, and we started chatting. She agrees that some of my problems may have resumed with the recent shift change at work, and that Morton’s neuromas make sense after decades of toe walking.

My primary care physician had prescribed me Flexeril to try when my body felt stiff. My neurological physiatrist switched it to Baclofen and suggested I might take it up to three times a day when I feel stiff.

She was impressed when I showed off my quad stretch without leaning on anything.

But she studied my shoes and watched me walk and noted that my right leg is sliding more, that I’m not lifting off the ground like I should, and that my left leg scissoring is more pronounced. I also have less mobility in my right ankle than my left. She’s concerned about the increase in my spasticity and wants to see me again in a month.

And if my gait and spasticity doesn’t improve, I may need botox. In my hips. I’m not real keen on the idea of injecting neurotoxin into my system.

But my curls were sassy!

And then I came home and made sandwiches for my work lunches. With spinach and Hungryroot spinach artichoke dip.