Tag cerebral palsy

Another day seeking answers

Angel Ackerman Leave a comment

This is another in a series of posts about trying to learn about my cerebral palsy and improve life in my body in general.

As sometimes happen, I woke in pain. I took two Tylenol PM last night so the pain didn’t keep me awake though my cat kept trying to intimidate one of my fosters so that made the six hours of sleep I got rather restless.

I woke to an alarm at shortly after 8 a.m. as I had to be at a doctor’s appointment at 10:05ish and the office is 20 minutes away.

To read about the connection between my gynecologist and my novel, visit the Parisian Phoenix blog.

Today was the rescheduled appointment to get my Mirena IUD that will hopefully reduce my heavy menstrual bleeding and my back pain from menstrual cramps. I had another new-to-me doctor today, and this one had an amazing sense of humor.

She was also the first doctor to ask me, upon hearing I had cerebral palsy, if there was anything she needed to do or be aware of to help me. In my case, the answer is no. But if I had worse issues with my flexibility and lower limbs, this would be a good question.

This is my third IUD, although my first Mirena. So nothing unexpected happened during insertion.

There was a pinch here and there and the doctor told me to take ibuprofen for the initial cramping. And to be prepared for a period that might be weird for the next few months. Every woman reacts differently but I may see my periods lighten or even skip cycles.

I did experience some light cramping and spotting but nothing to require OTC painkillers.

But, once I got to work, my right leg seemed to be impossible to control with my quad and knee burning. My ankles also started to burn. My lower back just throbbed, regardless of whether I was twisting or standing still.

By the end of the night I struggled to reach forward or to lift the pile of clothes.

I only QCed 92 fixes. That’s almost 71% of goal. Now granted tonight we were in the men’s Hizzy for the first time ever. It took me 4.5 minutes to do fixes that in women’s takes less than 3.

And they have such nicely organized work stations with drawers.

While listening to my first podcast of the night— 60 songs that explain the 90s— i discovered that Weird Al donated the profits from “Achy Breaky Song” to the cerebral palsy foundation.

My British colleague asked why I’m not on disability. That made me wonder how bad I must look if she says that to me.

In good news, let me regale you as I drink my last pins colada lemonade gin cocktail, the teenager is very excited about the new soap dispenser she bought.

I did a thing and did a soft launch on a Parisian Phoenix podcast on Spotify. I thought my blind friend, Nancy, would like it.

And if you want some fun pet items:

Nala the cockatoo plays in the shower.

Bean Dog tries to get bone out of tire.

I walked into the teenager’s bedroom and the kittens of the Celtic Pride were all in her laundry.

Celebrating the small victories

Angel Ackerman Leave a comment

Yesterday was a day of mixed signals.

The pain in my hips kept waking me the night before, despite a cocktail and a Tylenol PM. I woke grumpy, stiff and achy.

I didn’t keep that from affecting my workout with Dan at Apex Training.

Because here’s the thing about pain— sometimes it’s a warning that you need to stop but sometimes it’s recognition that your body is changing.

I did 75 lbs on the barbell incline press. And that reminded me that my body is not all bad.

But at the same time whatever is impacting my spine, hips & leg is making basic mobility difficult and my job folding clothes painful.

I slathered myself with my CBD Medic Arthritis ointment and somehow folded more than the requested 130 fixes QCed. I did 133.

I’m probably in half the pain I was last night.

And in seven hours I need to get out of bed and go to the gynecologist for my Mirena IUD.

A mid-week restart with Postmodern Jukebox

Angel Ackerman 1 Comment

This post is both a brief review of the Postmodern Jukebox performance at the State Theatre for the Arts and a brief update as to my current condition struggling with cerebral palsy.

Monday night I performed well at work, but by the end of the night my right leg and hip were screaming in pain, to the extent where I grew nauseous. I woke up still in pain but had no trouble performing an upper body workout with my trainer, Dan, at Apex Training.

The teenager, recovering from last week’s ear infection, and I did some barbell bench press.

But on the walk home, I was struggling with function in that leg and pain in my knee.

I knew I had a chiropractor appointment with my beloved Nicole Jenson of Back in Line on Wednesday morning so Tuesday night, I called out.

Since the warehouse is encouraging people to take voluntary time off, I called out for Tuesday, took voluntarily time for Wednesday, in addition to the planned time off I had scheduled for Thursday.

The teenager had an appointment with a new ENT today — he put her head under a microscope, pulled out her ear tubes and gave her ears a good cleaning. More importantly, he explained all the different functionality of the ears.

The audiologist gave her a hearing test and she rapidly discovered— the teenager, not the audiologist— that her musical inclinations have allowed her to inadvertently fake the hearing tests at her childhood ENT’s office.

So the audiologist said that the teenager is a good candidate for hearing aids.

We had a leisurely afternoon which included a delivery of apples from my friend Joan who has tasked me with converting them into applesauce and apple butter.

And then… we (the teenager and I) finally embarked on our date, much anticipated by me. The teenager took me out for pancakes.

And then we headed downtown to the State Theatre for the Arts to see Postmodern Jukebox. #pmjtour

The amazing parking spot we procured had a three hour limit, but both the physical meter and the parking app would only let me apply 1 hour and 24 minutes. So, as that was set to expire at 7:23, I used the app to apply that final 45 minutes from inside the theater.

On the way there we passed Hoza, the new African/Zimbabwean restaurant downtown. Very excited to try it.

But the show— blew my mind. The vocals and musicianship was incredible, the costumes a delight and the arrangements of the music on point.

To see bits of the #pmjtour I shot, click here.

And at intermission, my lovely daughter bought me that Yuengling I’ve been craving.

Food box blunders, ear infections and a good workout

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I’m feeling exceedingly optimistic today.

I “fixed” my roomba, had a therapy session that left me sobbing in my psychologist’s office, had an incredible workout (full body as I will be traveling this weekend, but we did a lot of work on hip mobility), and cooked.

The business cards for Parisian Phoenix came in. Thanks to my trusty business partner Gayle.

Perhaps the chaos of earlier this week is finally settling down.

Seen in downtown Easton

So, last Saturday I got my regular Hungryroot order. And Tuesday was Purple Carrot. I wasn’t going to get a box from them this week but they had West African Peanut Stew on the menu.

And then I got a text that Green Chef was on the way.

I promptly canceled Green Chef so there would be no more surprises as they were my least favorite. But that box was on the way.

It arrived yesterday after I left for work. I received this message today.

I certainly hope there is no more food coming.

Because the teenager came down with an ear infection and has so much phlegm in her throat that she can’t swallow. But don’t worry she took some antibiotics and some DayQuil so she could enjoy a Hungryroot burger.

I prepared a bag of greens and a Green Chef meal for Gayle as I am supposed to go to DC this weekend and I can’t physically prepare it all. And M, my host, said I can’t bring it. The result— I now can say I pay my art director in groceries.

Purple Carrot has a $75 Thanksgiving box available. I ordered one.

And today I cooked:

  • Green Chef Mojito Cauliflower
  • Purple Carrot Buffalo-style tempeh and roasted sweet potatoes and garlic
  • Brussel Sprouts

But much to my chagrin— Purple Carrot swapped out the peanut stew for a grilled tofu meal.

Addendum:

From Gayle, after making her Green Chef meal.

I came home and just put everything in the fridge. Brown bag and all.

Pat looked at the recipe when she headed to the bathroom. She made vomiting noises. Not surprising.

I thought I remembered it saying 30 minutes. About 4:30, I started working on it. I didn’t look at the recipe earlier and didn’t realize it had two sides. I was overwhelmed when I saw all the instructions on the other side. I quickly realized that they were dummy proof and that made them longer.

I got the farro on and started the oven, then cut the squash and picked the tarragon. That was the most tedious part of the whole thing. That all went in the oven and I opened the chard. It was nasty. One leaf was probably okay. Glad you gave me other chard. I’m not a fan of raw chard so I wilted it. The nasty stuff went to the compost pile.

The rest of the prep was easy. By the time the farro and squash were done, the rest was too.

I made two portions. One for another day and one for supper. I did not put the apple on the leftover portion because it was already browning.

I was left with two large piles. One was compost and the other was plastic bags. So many bags. One said to pull off the label and recycle it. The rest had no numbers, no nothing so they went in the trash.

It was nice having all the ingredients and a recipe. It was fantastic having something different to eat.

Fitness update: Where did that leg go?

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Last week, I moved my follow up bloodwork from Friday October 15 to yesterday in part because I am planning a trip to DC over the weekend.

The morning yesterday started in a discombobulated fashion as my mornings generally do. I was so mixed up by the time my appointment rolled around that I drove right by the office.

The events of the morning had my anxiety on high, and revisiting my past issues with anxiety has not been fun. I even find myself fighting some of familiar behaviors, like stressing about how much money I have in savings and going over budget on food.

At the same time, I had a lunch appointment with my mother who recently lost a brother to cancer and anticipates losing another to the same cancer.

And I’m feeling my body thinking — my right leg isn’t working. I woke yesterday in no pain whatsoever yet something felt very wrong with my right leg, like maybe it was too close to the left one or pointing the wrong way. Very disorienting feeling.

I asked the teenager to take a look and she confirmed that it indeed look “very wrong” so we called Back in Line so my chiropractor Nicole Jensen could take a look.

This meant the whole day involved running from place to place which led to more stress, which increases the tension and the cerebral palsy stiffness in my muscles.

Nicole adjusted me again and aggressively stretched my hips. She also commended me for trying to know my body.

And at work I felt it. Keenly, painfully. Started in my hip, then my spine, then the left side of my lower back, and then the right. Everything hurt. I finished the night at 92% because of the pain.

The pain bothered me all night, and I woke up with it, and believe it or not struggling to carry the 80 lbs of cat litter I needed upstairs may have helped— by relieving tension.

Thank goodness for the gym, as my trainer Dan at Apex Training is very cognizant of how I am moving and has catered my workouts to my health levels.

I’m struggling emotionally right now, and I am physically in pain across my lower body. I can’t afford to stay home from work and I fear tonight will be worse than last night.

This morning, my bloodwork returned. My TSH is normal. My iron is creeping up way slower than I had hoped. My vitamin D was increasing but it hasn’t budged in four months.

And I also got an email with the results of the Artful Dash— officially Gayle beat me. Which she did not. I was a clear two feet ahead of her in the finishing chute.

Dahlias from a friend

The Artful Dash: Romping on the Karl Stirner Arts Trail

Angel Ackerman 3 Comments

I grew up in a rural township about 30 minutes from where I currently live. The “small town” I own a home in now literally seceded from the neighboring city 101 years ago. I love the mix of quaint and urban, and that we have small town vibes of Halloween parades, tiny public libraries and a school system where every teacher knows my daughter’s name regardless of whether she had a class with them.

But I also love the nearby city of Easton, Pa., where my husband and I had our first apartment downtown and our second apartment in a rather questionable neighborhood on the south side.

About two or three months ago, I noticed the Karl Stirner Arts Trail was hosting its Artful Dash 5k to raise money for this fun and unusual trail along the Bushkill Creek. The trail links Lafayette College’s Arts Campus to the 13th Street Silk Mill, snaking along Rt 22 in the process.

Gayle and I registered. It was my idea. We used to do 5k events about once a month until Gayle got poorer and busier and I developed more issues with my spine.

My last race was a Girl Scout event and I intended to run it, as I had also run the Yuengling Lager Jogger. The Girl Scout race ended up being a disappointment because I dropped a 15-lb dumbbell on my toe six weeks out. Also: Read about that race here.

Today was almost 65 minutes. Another disappointment. Especially since this was a great race. Well marked, friendly volunteers, small but big enough, nature, flat surfaces.

But I did slow down at one point deliberately because I just had a major adjustment on my hip Wednesday and it didn’t feel up to heavy effort.

So that was that.

Here is Gayle’s report on her walking blog.

Friday update: some health news and some silliness

Angel Ackerman Leave a comment

Yesterday must have been “doctors return patient messages” day because I heard from both my primary care physician’s office and my gynecologist’s staff.

But before I get to that… because that info will primarily be about the female reproductive system and how my issues in that area are compounding the impact of my cerebral palsy (and I know that’s an exciting topic), let me start with the humor in this beautiful Friday morning.

But perhaps the humor started last night with the fire drill at work. The fire alarm itself sounded like crickets chirping in a field. I supposed the sound gets lost in the depth of the warehouse.

The Bizzy Hizzy released us at 9:30 p.m. last night, which is fantastic for my aching body that is still trying to figure out what the hell happened to my hip. (Read about that here.)

I got up this morning hoping to be well-rested and pain-free. I woke up a cuddly Khloe and another phone call from my gynecologist— but I’m skipping those details for now. Let’s just say I have an appointment with them on October 22 and the person who made my appointment has a cat named Mr. Doodlehead.

Khloe

I go downstairs, let the dog out and noticed the Met-Ed truck at my neighbor’s house. The noise of the bucket truck scares the dog. We go inside. I put coffee in the Keurig.

The power goes out.

The bucket truck drives away.

Our own neighbor tries to chase down the crew. Another neighbor starts pacing the sidewalk. A third guy— yes all these people are men— stands in the yard and stares. (He’s the apparently live-in boyfriend of the resident. It’s a weird situation because they met on the internet and I was told it didn’t work but now he appears to be living there after two dates.)

After a little while, I realize I don’t want to open the fridge but I really should have breakfast so I’ll go out. My leg and spine still feel weird after Wednesday’s rather dramatic adjustment— I veto walking to the teenager’s favorite mini-mart gas station. Besides, they might not have power either.

At this point, the dog brings this from the kitchen:

Poop in a can

As if the cat food can wasn’t delectable enough, the teenager must have tossed a bag of animal poop in it. Poop in a meat can! What a treat.

I put on my shoes about to take the dog to Dunkin’ and I realize— I have no idea how to open the garage door manually. So I sit back down and work on the memoir I am proofreading.

But I need food.

So eventually I brave it.

The dog had tried to convince the kittens to play and lost that battle so she needed a pick-me-up, too.

The trip was uneventful. Except I had to drive around the building an extra time because I got to the speaker before I had my order ready. You can see me feed the dog a turkey sausage, egg and cheese wrap here.

And when I got home I realized—

I have no idea how to reconnect the garage door opener.

Now the health stuff…

I am on day three of taking CBD oil.

I am recovering from anemia caused by stress and heavy menstrual bleeding. My menstrual cramps hit me in my spine every two weeks, first for ovulation then for the actual bleeding. My spine already has issues with my SI joint because of all the years of walking crooked due to cerebral palsy. Despite my history of an active lifestyle and my current training program, the pain is getting worse and harder to treat.

CBD cream has been very successful in relaxing tense and spasming muscles in my back.

The gynecologist ordered some blood tests — I go Monday — and the PCP won’t see me until November 2 and I have instructions to follow up with my gynecologist in the meantime.

They requested and I got abdominal and transvaginal ultrasounds which revealed small growths (a benign cyst and a fibroid) in my uterus (looks like adenomyosis) which due to my age will probably cause more pain until menopause.

To alleviate this, they are going to give me the Mirena IUD in two weeks. Which is funny, because the proposed treatment for my back pain is a contraceptive device when I’m 46-years-old and haven’t been that kind of intimate in more than two years.

Fingers crossed that it helps. And that insurance covers it because it costs a thousand dollars.

I had two copper IUDs (Paragard) in the past. The first one lasted the whole ten years. The second was so painful I asked them (honestly begged them) to remove it after the first year.

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.

Getting sick of electronic devices and words

Angel Ackerman Leave a comment

I haven’t written in a while and I may keep this one skeletal.

I called out sick from work on Thursday and skipped my workout as I woke up in the same pain I had when I went to bed.

I thought I would rest in bed with my laptop and work more on the Parisian Phoenix website, my erotica collection, or even book four of the Fashion and Fiends series, Road Trip.

But instead I had my first Big Mac ever (which is especially odd since I worked my way through college at a McDonalds), ate too much candy and slept for 12 hours straight. The cats did not know what to make of that.

Are you curious how I responded to the Big Mac? See that here.

Friday I moved a little slow but still got decent numbers in QC folding clothes and after work ate too many cheese curls.

But, in my defense, they were amazing cheese curls— sour cream and cheddar— that I found at my local Dollar Tree.

Speaking of food, I also made my final Green Chef meal. Video here. I cheated a bit, adding beef tips, and forgot the pecans and the vegan aioli but it still tasted great.

Tonight I made Purple Carrot’s Fieldstone sausages with roasted fingerling potatoes and vegetables. Another great dish. I also made a side of “leftover sauce” pasta, mixing up every scrap from the fridge.

This morning, the teenager and I met up with Dan at Apex training and I did some lower body while Dan taught the teen to do barbell squats. He started by giving her the bar and evaluating her form and then he gave her some weight.

I think she used some muscles in her knees and legs that she has never used before, not with that range of motion. Let’s just say she was walking like me on the way home.

Then we treated ourselves to some egg sandwiches, grabbed the dog and went to the Feline Urban Rescue and Rehab Yard sale and cake auction. The child spent all my money— but we didn’t buy any cake. She got dog supplies and the massive dog now has a mermaid flotation device and a puffer jacket. And I have my third tea pot in two years. The teenager kills my tea pots.

Even the cats got goodies. See the new water fountain here.

I never saw a cake auction before and it was certainly more fun than the livestock auctions I’ve seen.

The dog was so tired she couldn’t keep her eyes open in the car on the way home.

Then I came home and made a video I’ve been putting off. I kept planning to get a little dressed up, do my makeup, set up a cozy spot on the sunporch and made a video of me reading a little of my novel.

Instead, I did it in sweatpants on the couch with the dog. See it here.