Tag arthritis

The Physical Therapy Phone Calls

Angel Ackerman 4 Comments

If you’re a regular in my portion of the universe, you probably know I’m struggling with some issues that might be described as middle-age or might be complications of a life with cerebral palsy.

I have been talking about this journey more in recent days but certainly rather frequently in the last six months or so.

Today, I finished talking to the last member of my medical team about my plan for my health and my future. That person was my psychologist. And it sounds like he approved of my plan.

So having spoken with everyone— checking their professional opinions against my fear of an emotional response to my disability— I sent an email to my physician outlining my questions and my plan.

I had an email back within the hour from my physician saying I could set up physical therapy and that I should come into the office for a follow up this Thursday.

My doctor’s office had no preference or guidance regarding where to go for physical therapy so I called the generic phone line. They assured me that I could go wherever I wanted.

I asked for a nearby hospital as that is where my blind friend Nan has physical therapy and I hoped maybe we could car pool. Don’t worry— I wouldn’t let Nan drive.

But when they transferred me the person that answered asked me why I needed physical therapy. I said that the x-ray showed retrolisthesis and arthritis my spine that could be a complication from my cerebral palsy.

As soon as she heard “cerebral palsy,” she transferred me to the neurological physical therapy office. But when they looked up my chart, it said “back pain.” And they don’t do that.

By the very very cheery person on the phone and I had a chat— and I asked her— are we treating my back or the cerebral palsy that probably causes the back issues. We both agreed it’s a good question.

She put me on hold twice to confer with the actual physical therapists and they decided to keep me.

I go see them Thursday morning.

Another step on the journey: a discussion of what is happening in my spine thanks to cerebral palsy

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Learning about your own body, exploring treatment options and trying to survive while doing it is exhausting.

I shared my plan to advocate for myself with my life coach from Ginger. And we also discussed some of my fears of where this could go.

And today I asked Dr. Nicole Jensen of Back in Line Wellness Center her thoughts.

She was kind enough to get out her spine and explain things to me. And she said I moved beautifully today, which could be a sign that the short shifts I’ve had this week are taking stress off my body.

She had never seen retrolisthesis in a group like this — and reported that the pedicles appearing in tact was great news. But basically that slight shift in the discs from the retrolisthesis would put pressure on the nerves.

And that the disc space narrowing was arthritis.

So to continue my work with my trainer— and she is impressed by his attentiveness and ability to adjust workouts to medical needs, pursue physical therapy, and try an inversion table. It might stretch out those irregular curves of the lumbar spine. Core exercises will be super important, and I wonder if my commitment to my core throughout my adult life has contributed to this good report.

Dr. Jensen asked for business cards from Dan at Apex Training. Because based on what she’s heard from me she would recommend him to her clients.

I’m noting these discussions and plan to email my doctor Monday.

Another whirlwind and even less answers

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This post will be a mishmash of the last 48 hours and will discuss some of the frustration of dealing with my cerebral palsy, life as Midnight Society comes to a close at the Stitch Fix Bizzy Hizzy, a brief mention of the new Wawa dinners and a thank you to the amazing teenager for her thoughtfulness in hiring a cleaner to help get the house under control.

The supply chain issues still create work shortages at the Bizzy Hizzy warehouse so as Midnight Society prepares for it’s change to day shift in December, some of us are only working about 20-25 hours a week.

I’m using the time to edit manuscripts and make more plans for Parisian Phoenix Publishing and deal with my mobility and pain issues.

The last few nights at work have been good (and last night was my one year anniversary)— I performed at 98% last night in QC folding those Stitch Fix parcels and tonight I think I surpassed 100%. But bending is still troublesome and what I believe are my quads burn the entire time I am standing.

These photos try to capture my one year pin.

So today was an emotional day. My sweet, amazing teenager hired a cleaner to deep clean the house. The cleaner did the upstairs yesterday and the downstairs today.

The house looks incredible.

And it was fun to interact with someone who wanted to help, loved our crazy animals and commented about how awesome my kid is.

I noticed early today that my X-rays had arrived in my St. Luke’s Hospital portal. I read them and they said my hips were fine, and the only findings on them (other than my new IUD and tampon) mentioned items in my spine.

But when the doctor’s office called at 2 p.m., he just wanted to ship me off to physical therapy. And I’m not sure that’s the whole answer. I work out. I have had physical therapy for my lumbar region already.

Two important questions physical therapy can’t answer:

1. How does this impact my ability to keep doing my job?

When I mentioned this to the person on the phone from my doctor’s office, she asked me what I wanted, mentioning that they could sign me out of work. I said no, I am looking for a more permanent answer than that.

2. How does my general crookedness factor in? The doctor’s office made this sound like no big deal, but I hurt. More often than not. So does my imperfect gait add more stress to this problem?

I’m going to talk to my trainer tomorrow, and my chiropractor Friday. I think there are more questions that need to be asked and I’m not sure what they are.

And in final ridiculous news… I tried a Wawa burger.

It was cheaper and heartier than I expected.

Health Update: There was a Crooked Hip

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I still haven’t heard from either my gynecologist or my primary care physician— and the mental and physical struggle has been rough. It’s ironic, since my daughter thought she say worms in the dog’s poop and within 24 hours she had lab results and preventative medication.

Luckily, I’ve been able to engage my chiropractor (the beyond amazing Nicole Jensen of Back in Line Wellness Center in Easton, Pa.’s College Hill neighborhood) in this journey to discover and maximize the potential of my disabled body.

(Which I am told today is World Cerebral Palsy Awareness Day, not that I ever even heard of it or noticed anybody celebrating.)

I told her this past week has been hard and strange with familiar pain and symptoms coming at the wrong time of the month and new symptoms happening now.

But I also admitted that some of these symptoms— like my swollen legs last night— could be explained by my behavior. Cheeto binge this weekend, for example.

Last night, I performed at only 83% when I had folded those clothes at 100% or higher all week despite pain. My knees had intense intermittent pain and my legs felt completely wooden, like they didn’t even have joints.

The chiropractor laughed at my ownership of my Cheeto binge and said that, yes, that might have something to do with it.

And she commented during my adjustment that my body and I are managing life and my symptoms much better in general.

But here is the “good news”—

My hip was crooked. The right side of my hip was significantly higher than my left and probably had been since the pain started last week. I attributed it to the same old pain but it was probably new and unique pain.

So then the chiropractor mentioned what I have been trying to articulate.

I used to have periodic bouts with high levels of pain when joints would seize and shift and muscles would spasm.

Now, with my exercise regimen and some of my other behavior change, I am experiencing lower levels of pain more frequently, but that pain is emotionally disturbing because I am aware of and used to the conditions that send my body into a flare and am doing everything I can to prevent those situations.

So it’s a perpetual game of anticipating what might be next. And how bad it will be or get before I find relief.

I told her I have had much success with CBD cream and she recommended trying a daily dose of the oils to see if that could help from the inside out.

I’m enthusiastically giving it a shot as over-the-counter painkillers like acetaminophen and ibuprofen don’t help.

And the “not knowing” because of slow response time from my medical team is crippling to my mental health.

Pun intended.

I actually emailed my therapist yesterday and it must have been a good email because I got a response asking if he could call me for a check in, which I said yes to, and he called to do a wellness check to make sure I was safe.

Odd how that can make a person feel “loved.”

Now my hip is back in place, I took my vitamins and my CBD oil and prepared my final Purple Carrot meal from my box. This one— apricot sticky rice— even the teenager loved.

Health update: Liverwurst for medical purposes

Angel Ackerman 8 Comments

This is another in my ongoing series about life with cerebral palsy, a disability no one I know seems to understand.

I have eaten thousands of extra calories this weekend. I can’t stop myself. My weight has hit an all-new, all-time high and I am deeply ashamed of my behavior.

I wrote my primary care physician an email midday Thursday after I called out sick from work, but before I slept 12+ hours. I told him: I know you don’t have the answers regarding my cerebral palsy and its long term effect. I know I walk funny and that has caused arthritis type issues in my hip, my SI joint specifically. I understand from working with my chiropractor (Nicole Jensen, Back In Line) who used to be a physical therapist that the instability in my lower body, especially as I compensate when I am pain, comes from these complications. But the only thing that helps the pain is the CBD creams I get online— Charlotte’s Web and CBD Medic specifically.

I have 2-6 bad days a month, usually a couple every two weeks, reinforcing the idea that my late 40-something menstrual cycle is compounding issues. I only get cramps in my back, but I’m also experiencing pain at ovulation.

And it’s bad pain. Just like all my other pain. All in my lower back.

My new gynecologist listened to my complaints of long-term anemia (which makes me too weak to properly deal with all these other struggles), heavy bleeding, pain every two weeks and massive blood clots exiting my body, and prescribed a couple ultrasounds.

The results have been in for almost two weeks and I can see them but I don’t understand them but they did find things, even if not large and scary, but internal organs are small.

I told him, I work with a personal trainer three times a week, and except for stress eating, I eat well and take all my vitamins. I even scheduled my upcoming follow-up bloodwork.

So which doctor do I need to talk to because my schedules anemia follow up is Nov. 2, and I would like to know if any of this can be treated and/or how permanent it is and/or will it get worse?

Meanwhile, my blind friend Nan and I visited Park Avenue Market, one of our favorite places. We both order liverwurst from the deli.

The man slicing our meat, who knows us at this point, comments that he doesn’t know how people can eat liverwurst.

I told him I don’t even like it. It is a little nasty, but that this liverwurst is better than off-the-rack liverwurst. That I’m not a big meat eater and I struggle with getting enough iron as I have a history of anemia. With the right cheese, it’s not so bad, especially with lettuce and good bread.

It’s inexpensive— so if I get sick of it I feed it to the dog and the dog loves me.

He laughed.

“So, you’re buying liverwurst for medicinal purposes?” he remarked.

Disability Update: Weight training, the warehouse job and unboxing of CBD cream

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A mish mash of disability related updates related to my life with cerebral palsy

I’m somewhere around week seven with my weight training with Apex Training and dreaming of a day when my stiff limbs might become those of a Paralympic powerlifting. I want to be a barbell athlete.

I missed Saturday’s session— I normally train 45 minutes on Tuesday, Thursday and Saturday. But I picked up an overtime shift at the Stitch Fix Bizzy Hizzy.

I told Dan, my very talented and diligent trainer, that I would do a home workout over the weekend. I did not. And the lack of long hours and the mix of chores and resting I did over the weekend meant that I was not tired nor was I sore for Tuesday’s workout.

And he says he went easy on me, but he had me doing incline bench presses with 25 pound dumbbells. Now, for comparison, about 4-5 years ago when I was lean and strong, I was just ready to make the jump to 25 pound dumbbells but I couldn’t afford to buy them.

That’s when the teenager and I joined Planet Fitness, which lasted until the pandemic. Almost two years.

Yesterday was upper body day at the gym. That’s probably a good thing as my premenstrual hormones left me so stiff today I couldn’t bend at the waist or walk well. It also might have been impacted by the severe thunderstorm we had.

But somehow I hit 129 in QC at work. 130 is goal. At 11:41 p.m. my supervisor stopped by for an observation. I told her I almost called out but I knew she had to see me on a bad day. But when I started folding the clothes, I hit 35 in the first two hours (goal would be 32.5). But then I slipped and only got to 64 by lunch (goal is 65).

By third break I was at 97, which is shockingly on point. And at 11:41, she rolls up with her laptop. I’m both relieved and terrified.

She needs to see my struggle.

The cart I was working in had 3 refixes— out of 8. I don’t know why they call them refixes. They are fixes that are messed up and need fixing. So I guess the fixes need to be fixed again.

It was arduous. I was tired, sore and stiff. I had two damaged items of clothing and I wondered if she would think I damaged them. (Yes, I know I am insecure. My therapist says I “sell [myself] short].”)

I QC’ed in my observation at a rate of 115%.

And my boss had a suggestion to alleviate my struggle.

When I hurt I need to ask for refix carts. Those are the fixes coming out of the refix department once they are corrected. They come boxed on top of the cart so I don’t need to bend to get them.

They really do want to help.

And finally…

A few weeks ago, I asked the teen how her dad’s arthritis was. He has a club hand, so his left hand does most of his daily tasks. As a result, he has bad arthritis between his thumb, wrist and forefinger.

Turns out, his mother gave him Charlotte’s Web CBD cream and he swears by it. So I ordered some. And I ordered the CBD Medic Arthritis Cream as well.

They arrived today. So I took a shower, suffered through the contorting needed to shave my legs, and upon return to my room, I slathered the Charlotte’s Web cream on the knot in my back. The relief was instant, and I don’t want to think it had anything to do with the gin and limoncello cocktail I am drinking.

More details to come on the creams but it is so nice to go to bed without pain. And I think the knot in my back is loose. But I also must remind you—cocktail.

Can I touch my toes?

Yes.

And I didn’t even bend my knees.

This might be the best thing since Epsom salt.

Saturday rumination—how do I move forward with athletic aspirations?

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I woke. My birds started chirping about 6:30 a.m. due to the light that creeps around the edges of my black-out curtains.

I had coffee, started some laundry and dishes and came up to clean the bird cages and touch up my room.

The lack of activity is causing more discomfort in my S1 joint. It makes me think about how my awkward gait from cerebral palsy might be destroying what fitness I have. For a while, I was quite athletic.

The issue is on my left side. It started when I started working more or less full time at my retail job which was a few months after I broke my ankle.

I wonder if I will ever be able to fulfill my dream of running a 5k or if my body just can’t handle it.

After I broke my hand, I started weight training to regain strength. I added cardio and walks of 2-4 miles a day (in addition to working on my feet/walking a mile an hour at the cafe) when my weight became an issue.

Life has changed— and my job leaves me sedentary, the gym is closed and I just don’t seem to have the energy to work out at home.

But before I started working so many hours, I was muscular and my back rarely hurt. Only twice a year or so when I “threw” my lower back out.

And sometimes I did that sneezing or standing up from a chair.

Just something to think about— how to rebuild a strong body from an aching one. Or do I attribute it to my age and move on…