Before I continue, let me get the usual disclaimers/introductions out of the way.
Like many people, I had a rough 2020– I’m actually grateful to Covidfor slowing down my life and allowing me to survive some severe emotional stress that caused me to have high blood pressure, develop a bad comfort eating habitand end up anemic. I had a difficult job experience, lost that job, and now work in the Stitch Fix Bizzy Hizzy and deal with my daughter’s crazy dog, my stubborn cockatoo and a bunch of foster cats. I’m forty-something, a single mom, 20 lbs overweight and struggling to understand my body, specifically my cerebral palsy.
My day started with chasing the “pig pony” dog Bean (we call her that because she snorts like a pig and is the size of a small pony) around the neighborhood because she decided to jump the fence and ignore her recall commands.
I’m in my kitchen now, eating a public-school issued bowl of Cheerios with an out-of-date white milk leftover from the teenager’s recent school dates. I met with my trainer today (and my friend Janel who is helping me set up the FURR Coffee and Kittens event at Forks Community Center August 15).
I headed up the hill to Apex Training to meet with my trainer Dan. I finally remembered to ask Dan if it’d be okay if I wrote about him and our work together and he said yes, so I no longer have to be sneaky.
I’m comfortable with Dan. He’s laid back but he knows his stuff, understands the movements and the physiology, and keeps a careful eye without making you feel stared at or inadequate.
He almost seems apologetic that we’re going slow and using 5 and 10 pound dumbbells and not lifting at a pace that makes it a cardiovascular event. But that’s what I love! The anemia, when combined with the cerebral palsy especially, makes it so easy to get tired and clumsy and hurt oneself.
Today, we did some upper body work. 30 minutes, slow and steady. 3 sets of 2 exercises each. Pretty standard way to set up a 30-minute work out hitting the triceps, biceps, chest and upper back.
Five years ago when I did this, I did a lot of cardio, did calisthenic ab exercises every day and did ten to fifteen minutes of lifting focusing on just one muscle (i.e. biceps or triceps) not the whole group.
Like I said, I know what to do, but I’m a person and people get lazy. I need Dan right now, as I’ve said, for several goals:
Restart the consistent habit of training.
Increase energy.
Improve strength, flexibility and agility.
Build muscle and tone body.
Lose weight.
Many of us tell ourselves we can save money and do it ourselves but the reality is there is a big difference between we are able vs. the commitment of we will.
I fully intended to eat a banana every day to get more nutrients into my body as I recover from anemia. Did I?
Does it look like I did?
But back to the training… I find the actual activity of lifting, when I am working with a class facilitator or fitness trainer, meditative. Everyone should focus on their movements when strength training, but I really have to with my disability. Focus is required to make sure all the body parts move as they should. I have to count the reps, remember to breathe, and control the motions all at the same time.
When you are doing all of that, your mind empties. And you just flow with the movements of your body and the feeling in your muscles.
Like today was “oh hello triceps, are you still under all that arm jiggle?”
When I left Dan I was sweating. I was limber. I felt invincible. I was walking home reminding myself how powerful I am.
I fell.
I lost my balance on the sidewalk and just fell about half a block from my house.
My right arm is scraped from the back of my shoulder almost to my wrist. The upper shoulder stings the worst. It’s been two hours and it still stings. I also bounced on my hip and upper thigh— so that is already starting to bruise.
I called out from work tonight. Based on where I’m at in my menstrual cycle and the summer sun, I’m going to blame anemia for this lapse in balance especially since all day yesterday I had no energy. Anemia is awful. Anemia with a mobility disorder is a nightmare.
Today I woke up at 8:30 a.m., before my alarm, ready to start the laundry, unload the dishwasher and check on my split pea soup. I had my initial meet-and-greet, evaluation session with my new local, small business fitness trainer at 11 a.m.
At 10:30, I went down to the basement to get the linen wash and hang it on the line.
Oz, the big, scared and stupid cat bolted through my legs and out the door. In his mind, he was going to go eat some grass and relax in the sun.
Except the dog saw him escape. So he ran around the house and into our neighbors yard where our other neighbors were breaking up cement manually.
I was focused on catching the dog and they were very keen to tell me there was also a cat. I knew that cat would be sitting and waiting at my neighbor’s back door.
I catch the dog and clip her to the neighbor’s tie and turn my attention toward retrieving my daughter’s cat.
Grab the cat while the dog yowls in confusion. Toss him in the house, grab the dog’s leash, walk the dog across our small yard, and then watch her corner Oz and jump through the open window to chase him around the house while still wearing her leash.
By the time I crated her, I was already dripping with sweat.
And I barely had time to eat (after all, the wet laundry is in the basket in the yard) so I spoon some of my current favorite Cabot cottage cheese into my mouth and grab a pack of salt and vinegar almonds (both from the Grocery Outlet, of course) and an unopened bottle of plain seltzer.
I walk the five blocks to the trainer’s gym.
He’s practicing his golf swing when I arrive. He knows my name. We chat. My seltzer explodes all over but I manage to minimize the disaster. His name is Dan. He has an infant. And dogs. Both trainers have kids and dogs.
He has similar problem areas in his hips and back from an accident. He gives me the usual rundown— we’ll start slow so we can build a foundation, results take time. We talk more. I tell him my most recent experiences with strength training/weight loss/anemia. I show him pictures of ripped, underweight me five years ago.
“So you know what you’re doing,” he says.
“I do, but I need someone to watch my form so I don’t hurt myself and motivate me as I’m still struggling with the emotional repercussions of a really bad work experience.”
“I can give you some guidance and a kick in the butt,” he says.
“That is what I need,” I reply.
I tell him my hopes: I want to start with light workouts to develop the habit and rebuild my energy as I recover from anemia-related fatigue. Then, we focus on full body weight training at so I can be as strong as the woman in the picture, but I don’t care what the scale says. And maybe we’ll work toward running a 5K. And if the relationship works out, I might pursue my dream of a bodybuilding hobby. Not competitive. Just for myself.
I think I saw him visibly relax. He liked that I understood what realistic expectations are and that I want to put in the work long term.
He gives me weights. He increases them after the first set of shoulder presses. He mentions that we’ll be able to capitalize on my muscle memory and that I have pretty good form.
I explained my lower body issues, and we did some body weight squats. He seemed pleased with my form and my concentration.
We talked about different things we could do, and he evaluated me in several exercises including one compound set I really liked, best described as moving from a sumo squat (with dumbbells) to a bicep curl using the hips instead of the back and finishing with a shoulder press. It loosened all sorts of muscle groups.
I felt invincible.
He explained that he would use this observation and discussion to build my program as he didn’t design anything until he met the client. I chuckled.
Another piece in my understanding cerebral palsy series
Technology can offer an opportunity for a great equalizer or perpetuate a divide. In both cases, there is a complexity that arises.
That sounds vague.
But allow me to try and explain.
My friend Nancy, a talented poet and essayist, is blind. She has seen the rise of all sorts of technology from computers, to tablets, to the gambit of “smart” devices. She has experienced that when looking for accessibility, those helping her (whether it be staff at organizations for the blind or everyday customer service employees) view people without what they deem standard technology— smart phones, online banking, PayPal, computers— as lazy, poor or stupid.
I’m thinking about this, in part, because of the podcast A is For Abled. I listened to the debut 2019 episode (recorded on October 6 which the podcaster announced is world cerebral palsy day) at the Stitch Fix Bizzy Hizzy last night.
I am realizing more and more that platforms that YouTube, Spotify, Facebook, etc., provide more and more opportunities to connect with real people so many of the “products” people put out there are amateur. And I am not knocking on that.
But when people talk about there experiences you need to keep in mind that memories are not the best source of fact.
The first episode of A is for Abled discusses the host’s background— Kyle, his sister Cheyenne and his mother have a pretty comprehensive discussion about their family attitude toward Kyle’s cerebral palsy, his upbringing, public vs. private school in regards to disability resources and quality of education, sibling relationships, the various therapy and surgeries Kyle has had and society’s reactions to disabled children and more specifically Kyle’s gait, which they call “swagger.”
Kyle was 32 in 2019, so this makes him more than a decade younger than me. His mother was 19 when she had him and he is the oldest child. They are also African American so they make some comparison/contrast between society’s reaction to the disabled and the reaction to African Americans.
Apparently the show has completed two seasons. And it sounds like Kyle’s condition is very similar to mine.
Between his family, his therapy, his various exercise classes that his mom encouraged him to try (yoga, aqua aerobics, tai chi), private school and surgery, Kyle had a lot of interventions I didn’t have.
Things A for Abled pointed out (I have not fact checked these statements):
Like Karen Killilea (if you don’t know who I am referring to I talk about the Karen books here), Kyle had surgery (twice) for his hips to straighten them.
People with cerebral palsy often develop arthritis in their thirties.
People with cerebral palsy get worse as they age because the muscles and tendons continue to tighten. That’s why physical therapy and stretching is so important.
Hot Yoga not only provides the much-needed stretching and flexibility but also the heat automatically loosens the muscles.
To explore A is For Abled, find their website here.
Although my current quest is to understand (after decades of life existence) my cerebral palsy, recent bloodworkhas shown that my body continues to flirt with anemia. I see my doctor at the end of the month.
It is time.
The last two years have been stressful— the dissolution of my marriage, a job that threatened my emotional wellness, helping teenager two, raising my own teenager, the pandemic, and the menagerie. This time frame has posed challenges and offered delights.
But the heavy fatigue I feel in my bones is not the change to a second shift schedule nor is it due to working in a warehouse with my disability.
I was diagnosed with anemia circa 2009-2010. My daughter was in kindergarten. I survived a stint in non-profits then, in a position that drove me to panic attacks.
Very similar to my situation today. Hopefully I have learned from my mistakes.
Emotional eating has been a huge part of my existence and unemployment may have also caused my nutritional habits to plummet. And now my body feels the loss.
My largest downfall— not including the impulsive fast food buys and late night junk food binges— is not liking fruit. Not a big fruit person. That brings me to anemia tip #1:
Vitamin C helps the body process iron.
Pair iron-rich foods with fruit or vitamin C laden fruit juice. Example: cream of wheat with fresh strawberries.
Symptoms of anemia, by the way, include mixing up words, not being able to move your body as quickly as you are used to, and fatigue not lifted by caffeine, sleep or sugar. Your nails can pale. Your hair can weaken. I also have increased balance issues.
So I am now recommitted to improving my eating habits. Luckily, a lot of my favorite foods are iron rich. I believe that’s my body saying I need more iron.
But I am not a big carnivore and typically people turn to beef and other meats. I move more toward nettle tea, dark leafy greens, nuts and beans.
I also bought some liverwurst. I’m not a fan of “sausage” or organ meats, but it contains close to 30 percent of your daily iron and lots of coblamin, part of the B-vitamins, which promotes healthy red blood cells.
“Whole Foods” and lots of fresh vegetables providenutrients your body needs.
I’m a fan of spinach and kale wherever I can add it, and like mentioned above, iron-rich nuts or beans can top many dishes.
And even though it seems impossible to function, it’s important to limit caffeine.
Reducing coffee consumption can allow your body to absorb more iron.
But when you’re in the throes of anemia, coffee becomes an IV fluid. So it’s a double-edged sword.
And it’s important to know your particular symptoms and take supplements if needed— talk with your doctor and find out what supplements will benefit you.
You can often tell by your bowel movements if you are taking too much iron. The more iron in your system, the darker and harder your stool becomes.
Supplements can help, and can increase the body’s stored ferritin. Note that the body will deplete vitamin D before iron, so vitamin D supplements often go hand-in-hand with iron.
Regular blood work, a healthy diet and the right supplements can get your body back on track but it often can take months to fully recover.
And if it’s summer, the heat will sap your remaining energy.
This will be another long day-in-the-life style blogs. I never seem to know what will resonate with people so have it all, right? I’ll bold key words to allow easy skimming.
Cat Stuff
Misty
FURR Louise
FURR Louise
FURR Louise & Khloe
FURR Louise & Khloe
FURR Louise & Khloe
FURR Khloe
FURR Khloe
New Kittens: Em & Shady
Adult FURR (Feline Urban Rescue and Rehab) fosters Louise & Khloe are still competing for my attention and unsure if they like each other. Two very different cats with very different personalities. Both really cuddly and are going to be great additions to any household.
Parker and Extra Crunchy of the ten little kittens that got sick with distemper are now neutered and ready for adoption. They are such loves, especially fond of human snuggles as they were syringe fed.
And of course Touch of Grey (another adult foster) still thinks she’s the boss. She definitely is more cat than dog and we have good reason to believe she has neurological issues which may contribute to her agressive mood swings but the teenager is working with her.
My original Saturday morning plan was to prepare an outline of the coffee and kittens fundraiser, but our cat foster godmother had two kittens for us. One black kitten from a very feral litter, but he was not hissy spitty and one who turned up with a litter of small kittens who obviously was older than them and had been on his own. That one looked a little like Crunchy but was feisty.
I nicknamed them Fuzznuts and Fluffballs in my head, not knowing their gender. I also considered our “cats are gods” theme, but these two were not a litter so we didn’t want to use a whole pantheon for them. I considered Elohim and Yahweh, but my daughter vetoed it. I worried someone might get offended.
But foster godmother said, “people always get offended.”
A DMX song came on the radio in the car on the way home. DMX passed away recently and rappers also have that badass cat attitude. We knew the black kitten was a girl and the grey a boy.
“What about DMX and Diam’s?” I suggest.
“Mom, no one knows who Diam’s is,” she replied.
Latifah? Salt and Pepa? Then it him me.
“Eminem and Slim Shady,” I said.
“Mom, they’re the same person.”
“It doesn’t matter. The black one can be Shady and the other can be Em.”
So now we literally have a cage of two kittens, Em(inem) and (Slim) Shady in our living room.
Grocery Shopping
The teenager went to work at Tic Toc Family Restaurant at three, and I went for Nan, my blind friend. We had plans to visit Park Avenue Market for deli salads and meats and the Lidl for boring things like milk, cheese and half and half.
I casually walk through the store explaining every item I see, from snack items to spices to peanut butter in squeeze tubes and olives in plastic snack cups. I love food and I love weird so this is why Nan and I consider grocery shopping fun.
At Park Avenue, Nan indulged in some meatloaf and ham. I got the pickled Brussel sprouts, liver wurst, bacon maple potato salad, cranberry horseradish, and violet candy. And crab stuffed flounder we had for dinner tonight.
These will resurface tomorrow when Nan and I work and have lunch together.
At Lidl, Nan got yogurt, lemonade, milk, Mac and cheese and those amazing home baked cookies. I got produce, cheese, breads, chips, seltzer, butter and Brussel sprouts among others.
And when I brought Nan home I discovered someone hit and run my car. This happened in July 2019, too. But that was a full side swipe. At work. In a church parking lot.
Someone hit my car. Sigh.
Nails and fun with Beth
I came home and put the groceries away and got ready to leave for my friend Beth’s house, formerly Nails by Bethy at Hyperion Salon. She recently started a new career in commercial insurance (I think) and so won’t have time or stamina to maintain my fingers and toes.
But tonight I was headed to her house for “cocktails, dinner and board games.” She agreed to have my pineapple coconut rum drink ready when I arrived. I met some of her friends. Beth made chicken poblano with black beans, rice, coleslaw and pickles. And as I mentioned yesterday, we all played Cards Against Humanity when my family arrived. Her father brought the teenager over so she could be my designated driver.
Brunch with Mom
My mom and I have a tumultuous relationship probably due to trauma we’ve experienced in our lives. My mom has not had an easy life. Let’s face it, most typical folks don’t.
We had a talk last weekend and I agreed to visit her today. She offered to take me out to a swanky breakfast and let us stay for the parade for IndependenceDay that would be passing by her house. I don’t really like parades, and I’m sick of eating out.
So I requested a grilled cheese on rye instead.
She obliged.
It was delicious.
The teenager brought the Bean dog to visit Mimi and Mimi’s dog, Dog, was a gracious host. Dog is a miniature poodle.
Once we arrived home, I read a little more Karen by Marie Killilea before I opted to take a nap. I then stripped my bed, worked on the fundraising outline and went for a walk with Buddy and Sarah.
I stumbled on the sidewalk, but did not fall. Knowing I had borderline anemia made me feel better that my cerebral palsy wasn’t running amok.
For dinner, in my continued effort to eat more vitamin rich food to combat anemia, I made the crab-stuffed flounder, brown rice with pistachios, and sautéed some leftover green beans and the cabbage, kale and carrots in a Green Goddess Salad I bought on clearance at Lidl yesterday. I topped it with some rather stale sesame sticks purchased at Forks Mediterranean Deli at our last visit (which was too long ago).
My goal for the rest of the night is to work on the Wheel of Life in my July Silk & Sonder planner and finish Karen.
Happy Independence Day.
Remember that the founding of this country can be seen from many perspectives: as destroying the lives and cultures of indigenous populations, as a place to promote white Christian values, and/or as a place where people came to live according to what they felt was right.
The last 48 hours since the teenager arrived home from Cape May have been a blur. The fosters Khloe and Louise from Feline Urban Rescue and Rehabilitation are very glad to have the dog out of my room so they can compete for my attention freely.
The teenager brought me some breakfast coffee from Cape May Roasters. I normally don’t like breakfast blends as they are typically light or medium roasts and I like my brews dark. Maybe it’s just because the teenager bought it for me or maybe it’s just good coffee, but I really like it!
Author’s note: I started this blog entry in the wee hours of Saturday July 3 after my Friday July 2 shift, after having three days off for teenager’s beach vacation. Someone had to watch the menagerie.
I have tried several times over the last 24 hours to finish this entry, but it is now 23:55 (or 12:55 p.m.) with cool air filling my room and idiot neighbors having fun with firecrackers.
And I’m no closer to posting.
But back to the Cape May souvenirs, which for me include a mini retro Pac-Man Arcade Game!
So we spent Thursday evening catching up and I almost finished Karen by Marie Killilea. Marie Killilea raised a daughter with cerebral palsy, took in a neighborhood teen, raised another daughter who had repeated bouts with illness including rheumatic fever, and later had a mischievous son.
I would say I’m 50 pages from the end of the book. It is Marie’s memoir about her work to champion cerebral palsy, promoting knowledge and encouraging research, while raising her sickly children. These children never seem more than cardboard cutouts.
On Friday, I returned to work at the Stitch Fix Bizzy Hizzy. I didn’t get to Style Card. I QC’d something like 36 fixes the first two hours, but by the half way point of my shift only hit 63. And continued to decline with only 123 for the night. The goal is to quality control check, fold and box 130 fixes per 8-hour shift.
Meanwhile, the cat group is discussing giving us new kittens and developing a new kitten-cuddling and coffee fundraiser that my daughter, my former employer from ProJeCt and myself are brainstorming.
So I guess I’ll have to revisit this tomorrow and introduce you to our new kittens and tell you about my evening with my friend and former nail tech Beth at her home with her friend Barb and eventually the teenager and my estranged husband. We played Cards against Humanity and I drank four very stiff pineapple juice and rum drinks.
This piece will also include discussion of the mental health app Ginger and a review of a probiotic carbonated beverage.
If you’re new here… I am a 46-year-old single mom who volunteers with a local cat rescue, has a bratty Goffin cockatoo, and is currently trying to learn more about my own cerebral palsy.
The Teenager is on Day 2 with her grandmother in Cape May, a trip the teen has been planning since she starting working as a waitress this winter. I am home alone with her dog, our four cats, my birds and five fosters.
Yesterday after weeding, Extra Crunchy thought my sweaty, outdoorsy smelling body was a wild animal. (He is available for adoption; he’s a miracle kitten who survived distemper. And has the most soulful deep grey eyes.) Video: Extra Crunchy Attacks My Dress
Meanwhile the dog ate the case to my air pods while I was listening to Alex Hooper’s podcast Achilles’ Heel and making vegetable stock.
I had my second Ginger session yesterday with my coach. I still had the feeling many of her answers were stock, and that sometimes she may have been balancing more than one client at a time. We ended up talking a lot about how because of a dip in self-worth can cause discipline related and motivation issues— why should I take care of myself and commit to good habits if I’ll still be the same insecure person no one seems to value?
But I did do triceps and shoulders yesterday despite intense heat here.
An old friend popped by for a text last night and the nostalgia made me cry. Perspective is a beautiful thing, and sometimes we all need to remember behavior viewed as “bitter” can come from hurt or anger. Understanding can make a huge difference in an interaction.
By 10 pm, I couldn’t end the circle of thoughts about regret, hurt and the pain of seeing someone you once cared about experience something you know isn’t good for them.
So I texted an evening Ginger coach. At first the answers seemed stock and that she was copying/pasting and distracted by other clients, but that rapidly changed. And she and I had a good discussion. It was only about 20 minutes but it ended the loop of thoughts in my head.
I definitely think this service will help keep me focused with my therapist and allow me to get help for the more everyday issues as a situation is happening. Being the curious type I am, I want to know more about how the system works for the employees.
Of course, with the teen being gone, the dog is sullen and bereft. Last night she kept checking if the teen had come home yet and it was very difficult to get her to go to bed in her crate in the teen’s bedroom without the teen.
At 5:40 am the poor dog starting crying, so I went to her, got her out and took her to the yard and just let her stay free in the house. There was no way I was getting up with only 5 hours sleep.
I woke to find her in my bed with me and I actually liked knowing where she was. We got up for the day at 9.
As I drank my cup of coffee and starting feeding animals, my primary care physician’s office called. They are concerned about my iron and the doctor wants to schedule an appointment to discuss me going for a GI work up.
Now about a decade ago when I switched to his care, I did so because my doctor at the time to refused to treat my anemia. I had stress-induced super heavy menstrual bleeding that had reduced my stored ferritin to a 4. The nurse in the office at that particular doctor said that the adrenaline in my system from the stress is the only reason I was walking around and not in the hospital.
I had a three-month wait to see this particular new doctor. By the middle of the summer I literally could not get off the floor unless my-then five-year-old made me a pot of coffee and brought me a cup.
I called my OB/GYN and begged his staff to help me. The nurse practitioner saw me a day or two later and I left his office with a bag full of prescription-strength, special absorbing vitamin D and directions to take an iron pill with every meal.
So after two years of stress, and my period is still heavy, and eating mostly junk food for the last year, I don’t think we need a complete GI work up to fix this. When I see the doctor, and his residents, I’m going to ask if we can see if diet and supplements will return my numbers to better levels based on whatever deadline he prefers.
But it has me suddenly thinking— the recent falls, issues with hitting my numbers inconsistently at work (I literally said to a supervisor “somedays I just can’t make my limbs move faster.”) I have been blaming being out-of-shape and lazy and my disability for some recent issues, but compounding that is anemia.
And I honestly can’t remember the last time my iron was checked. The only reason he checked it now was because I reminded him of my history of anemia and that if my vitamin D was low, the two go hand-in-hand. And the highest my vitamin D has been in the last decade was 37. 30 is the lowest vitamin D result that counts as normal.
(By perusing my online medical regards I learned I don’t nor have I had HPV, HIV or Chlamydia.)
And this was all before coffee.
After coffee, I put on my favorite sun dress and ventured into the 90 degree heat (at 10:30 a.m. — that’s insane.) I walked over to Nan’s apartment six blocks away to bring her the Seeing Stars super soft lounge set/pajamas I bought her at the Stitch Fix Bizzy Hizzy. Giving a blind woman things with nice textures is always fun.
I walked home, sat for a minute and left at 11:15 to walk to CVS to pick up the teenager’s prescription toothpaste before they restocked it. I treated myself to a Booch Pop withmy 40% off coupon. It’s a carbonated probiotic drink of only 40 calories that tasted like a zesty ginger beer.
There was also a coupon for free candy so I got a generic assortment of Gold Emblem Swedish fish and a trail mix with pistachios and almonds on sale for $2.99.
I stopped at our public library. Our library opened in 1962 so in our archive “stacks” as they are called we have the original hardcovers of the “Karen” books which were bestsellers in the mid-sixties. The adult librarian asked me if I would prefer she find a newer edition and I said no. The originals add to the experience.
I came home with 5,000 steps done from errands and made Bean and I breakfast of chicken, eggs and rice. I put some of my fresh vegetable stock on my rice.
This is the second in what will probably be a babbling series of updates about the interactions of many areas of my life.
My new quest is to understand more about my disability— cerebral palsy— since my generation and certainly those before learned not to question these things. In the early to mid-twentieth century those who couldn’t pass as normal able-bodied people were institutionalized and parents of such children told to forget they ever existed.
I did receive a referral from my doctor to call the neurology office and explore this and I suppose I should put down the blog post and call before I forget. I wasn’t told to call a certain person so I am left with questions.
Does anyone in the office know CP? Like really know it?
Will this be a nice consultation or a medical appointment where I become an experiment?
Will I have the nerve to ask these two questions?
I did take the time to call, and I put on my “journalist voice” as my daughter calls it. I explain that I am a 46-year-old woman with Cerebral Palsy and while my medical team has done a wonderful job treating my body and helping me understand my physical defects, no one has ever explained the brain-body connection or what kind of CP I have.
And I emphasize that I want to understand so that I can age as gracefully as I am able, since some issues might reside in my brain and physical therapy won’t fix that.
A very nice person put me on hold. Time passed and with each minute I filled with fear. What if they don’t have someone? I chastise myself for the thought. It’s a neurology department at a major regional hospital network— someone should have some experience with CP.
But somehow, it doesn’t settle the fear. I think that’s another disability-related trait. Because some of us were taught to “pass” as able-bodied we don’t want to break the illusion and we certainly don’t want to bother anyone when obviously these medical professionals have real sick and injured patients who need them.
So while I was on the phone debating whether or not they just didn’t know how to help me or whether they just didn’t want to be bothered with the pesky person who had questions, I unloaded the dishwasher. And reloaded. And made iced tea. Because it took ten minutes.
And then all of a sudden a person from the hospital central scheduling answered the phone. Turns out I had been lost in the phone system.
After a charming conversation with the scheduler, and bidding her adieu hoping I have no major tests in my future that require her services, I called the neurology office back.
I introduce myself again and say there must have be an issue on either my end or their’s as I ended up transferred to central scheduling. I repeated my cute little tale and the person answering the phone— it was either Megan or Lisa (the other was the lovely person from central scheduling)— said she’d send a message to the physician and when he found the right person they would call me back.
If I could back up for a moment, today the teenager left for her Cape May vacation with her grandmother, her father’s mother. They took my car and I am so excited for them. The teen has worked so hard to pay for this trip for her grandmother. She took my car so I’ll be home alone until Thursday night, caring for the menagerie and getting caught up on housework and hopefully putting the near final touches on my debut novel.
That’s a lot for three days. Tonight I plan on doing my yard work and tomorrow I need to gather some more of the teen’s birthday bomb as it is garbage night. I will also continue taking garbage from teenager two’s former room as she no longer reads my messages and left a room full of garbage, dirty dishes and about 30 empty cat food cans and a dirty cat box with cat waste also on the floor. I think I found all the partially consumed (human) food, and I also found some broken dishes and destroyed linens.
She did thank me for everything I did, but I’d still feel better if I didn’t have to clean up her filth.
Many more of these to come.
There’s a heat wave browbeating everyone so I’m filling a lot of water bowls and passing out ice cubes. These new Feline Urban Rescue and Rehab tumblers make it easy to stay hydrated.
Yesterday before work I went for my follow up blood work. I always get blood work done before my annual physical. This year’s January blood work showed low vitamin D.
He asked me to start taking vitamin D, which isn’t unusual. Most people don’t get enough. He asked for a follow up in six months, and, because of my history of anemia (which was very severe when the teen was in kindergarten) I suggested he check my iron. My vitamin D has increased by 10, but I’m seeing that both D and iron are low/normal. We’ll see what he has to say about that.
And some fun stuff related to my previous blog post… I know it was long and rambling but I want people to experience the string of connections as I feel them. My stress regarding being on hold with the neurologist may resonate with someone. And two of my friends did point out some connected resources. I do love resources.
First, a good friend mentioned she used to read and reread the memoir/biography Karen by Marie Killilea (and there’s a sequel From Karen with Love) about a mother’s journey mid century with her daughter’s CP, when mom was told to institutionalize the child.
Another friend mentioned the podcast Achilles’ Heel hosted by a close relative. Alex Hooper on the podcast interviews guests on a wide range of topics from empaths to panic attacks encouraging listeners to tackle head on their own Achilles’ Heel. I listened to enough last night to know this will be fun.
I also had another Ginger coaching session, but that’s going to have to wait as my typing fingers are tired.
I may have said this before, but even if I have it’s a message that can be said again: I am blessed to have a talented and caring medical team. In addition to this team, I have also been harvesting resources for my physical and mental help.
I am recording this week’s journey so others might consider different ways to find their own resources.
On Monday, the teenager resumed therapy with a new therapist who attended Moravian College at the same time I did and is loosely a friend of my traveling companion M.
I asked if she was comfortable treating my daughter, because we have circulated in similar arenas in the past and my 17-year-old daughter struggles to connect with therapists who work with teens and is too young for a therapist who treats adults.
From what I knew of her personality from the few interactions we’ve had over the years and the information on her web site my gut said she would be a good fit for the teen.
And in my teen’s eyes, I was right.
My daughter is far from a troubled teen, but she has two parents with disabilities, a mother with trauma in her background and an extended family history of addiction.
Her strong empathy and witchy powers can make her experience of the world intense. (Speaking of which— I gave her my tarot cards on her birthday and she cried. I knew she would understand the significance of the gesture but I didn’t expect her to get so overwhelmed she cried.)
On Monday and Tuesday, my work performance wouldn’t crack 88%. I was frustrated and in pain and just moving slowly. After mapping my pain patterns for years, I can say that my back pain is worst when I ovulate and when I menstruate.
Wednesday was, as mentioned in other posts, the teenager’s 17th birthday. I had a tele-appointment with my therapist of about 12 years. Coincidentally I discovered his birthday is the same as my daughter’s. That’s just another reason we get along.
It’s fun to have a professional in your life for a long time like this because I get to see his practice grow and develop, sometimes in parallel to my own life.
I recently took the ACE Childhood Trauma test, which gave me a different outlook on some of my experiences. My parents did the best they could, but they had their flaws and their own battles to fight. So between their own struggles and life events they couldn’t control, stuff happened.
I can’t explain why it’s time to face some of this now, but that’s the way things go sometimes. We all come to certain aspects of self awareness in our own time.
On Thursday, I visited my beloved chiropractor, Nicole Jensen at Back in Line, who leveled things out, told me I was stressed and talked with me about different physical therapy stretches I need to do to fight the pain. We both agree that the pattern of pain increases on those certain days in my menstrual cycle.
I came home and ate cake and ice cream for breakfast. Not the best decision as I have been 20 lbs overweight for a year.
I suddenly remembered that Stitch Fix offers employees access to the Ginger Mental Health app. So I made an appointment for an initial consultation for Friday.
My hope was to use Ginger’s coaching to set goals and recreate/spur my discipline and good habits regarding food and exercise. For instance, I haven’t lifted a barbell in a year. I miss strength training. I still think I could be an excellent body builder.
My Ginger coach is Kathryn, who has a master’s degree in social work. Our session, completely done over text, seemed to be two sessions in one.
The first hour, she asked basic questions about me. The second hour we set up a plan of the topics we’d like to address. This week we will start making and implementing goals. It doesn’t always feel like talking to a human, though the occasional grammar or spelling error reassures me that it is a person on the other end.
Some of her thoughts include: “Sounds like a great idea! So in your case, a plan I might suggest would be to start by addressing your feelings of stress, [being] overwhelm[ed], and lack of motivation by incorporating mindfulness into your daily routine, which can help bring some relief from challenging emotions and help you see more clearly how your thoughts and emotions are impacting your behaviors so that you can feel more grounded, intentional, and comfortable being yourself. This can also include exercises centered around relaxation techniques, positive distractions, mindful awareness, developing awareness of triggers (when feeling stressed and/or overwhelmed, taking time to notice what the root cause is and look for a pattern), pattern recognition, scheduling and time management, and identifying and building on your current strengths and resources. We can also discuss accountability/working with providers (i.e. therapist and coach) and explore sleep/exercise/diet as needed.”
A lot of that feels copied and pasted, but it’s okay in my opinion. Sometimes just having someone help you pick a direction or even commit to a new direction can be the change you need.
Also on Friday, our dog F. Bean Barker got spayed at Canyon River Run, a vet we really love.
On Friday night, I learned a new work center at the Stitch Fix Bizzy Hizzy— style carding. My colleagues cheered me on in learning this new role and I very much enjoyed it, even when my computer monitor broke and I had to use a computer on another line and lean way over to grab my boxes.
Basically, the associates who “style card,” grab all the completed fixes that come off the QC line and use the packing slip to print a style card that includes a personal note from the stylist and lists each piece in the fix and offers examples of how it can be worn.
Working with anywhere from 6-8 fixes at a time, the “style carder” folds the packing slip and style card and places them into an envelope before returning them to the box.
A quick check that the box is correctly wrapped and the style carder lines up the boxes and shoots them down the table onto a metal conveyer line operated by sensors. This takes the boxes to “OB1” or the outbound/shipping department which inserts the return envelope, tapes the box shut and prepares the boxes for mail pickup.
The pickers assemble 920 items a shift, which breaks down to 184 fixes. Each QC associate folds and packages 130 fixes a shift, each style card associate aims for 900 fixes a shift, and the Bizzy Hizzy itself ships about 6,000 fixes a day.
During this time, our tasks are fairly simple, automated and monotonous so we are allowed to listen to podcasts or music. I’ve used the time to explore a lot of topics via podcasts on Spotify.
Spotify is still a new platform for me and it’s slowly gaining exclusive proprietary rights to a lot of the podcasts I listen to. I heard on several news broadcasts that Spotify paid 60 million for Alex Cooper’s “Call her Daddy” where she talks about sex often with an emphasis on blow jobs.
I listen to her because she has some funny stories of the ridiculous escapades she has had: dating a professional athlete, offering blow jobs as a way to sneak into sporting events, etc. But she also sometimes interviews people— like a retired Playboy bunny who left the Mansion and points out the realities of such sexual exploitation. Alex can be really insightful but she also can misuse her vocal range to try and make the podcast more interesting to listen to and that hurts me ears.
In addition to Kristen Bell, Dax Shepherd, Mayim Bialik, and Conan O’Brien (and in addition to the news and fashion), I searched for cerebral palsy podcasts. From TheMighty.com, I learned that the name “cerebral palsy” is an umbrella term for several brain-related disorders. And I don’t really know anything about which CP I have.
I learned CP can interfere with the neurotransmitter GABA which is why our muscles and our brains don’t communicate effectively. I learned that muscles that don’t get used correctly and don’t get the right messages can stiffen and become spastic. This causes pain and lack of control.
The two main classification differences I have heard are hemiplegia and quadriplegia which you may recognize from the words paraplegic and quadriplegic. These terms explain the parts of the brain/body affected. I would assume I have mild hemiplegic CP, as I think it only affects my lower body. But sometimes I think I see it in my hands so I don’t know. And I think I am low spasticity as I seem to have fairly good muscle control for someone with this disorder.
But I don’t know. So I did what I like to do, on Saturday, I called Nan. If you don’t know Nan from this blog, she is often my partner in crime. She has been blind since birth. Like me, we were raised in able-bodied families and never knew life any other way.
Nan is older than I and, despite her disability, has lived independently for most of her life. She attended college. She married. She has a hobby writing career and attends poetry open mics. She was a teenager when NASA put a man on the moon, but despite having never seen the moon, she has been fascinated and following the advances of NASA ever since.
Nan is closer to my aunt’s generation than mine. My aunt has what would now be referred to as developmental delay, but what was called the now insensitive term “mental retardation” in her day. In school, she didn’t learn what the other kids learned. She had basic reading skills and could add and subtract but never learned to multiply or divide. I know because we used to play school, except I really taught her things.
My aunt, then a few years later Nan, and even a few more years later me, we were all part of 20th centuries advances. Medicine had found ways to help us survive, but technology and society had not discovered ways to help us thrive.
None of us have thick medical files that detail the specifics of what is wrong with us. You were thrown into the mainstream to sink or swim. And if you couldn’t swim, you were institutionalized or kept home. Therefore, families didn’t talk about disability as much as they pushed functionality— they urged us to act as normal as possible and pretend the differences about us were not even noticeable.
I mentioned some of this to my primary care physician when I transferred to his practice more than a decade ago (some friends and my therapist recommended him). At that time he guided me to specialists to explain what is wrong with my specific body, but I am realizing now that he might not know that I know nothing about what my disorder is.
So, also on Saturday, I emailed my doctor. I asked him to help me find someone who can talk to me about cerebral palsy. I know children with the disability in today’s world work with a pediatric neurologist.
And it hasn’t all been work and reflection. My daughter and I got mani/pedis for her birthday/upcoming trip to Cape May. It was our last appointment with “Nails by Bethy” at Hyperion Salon. Beth has a new full time career that should offer her more stability and room for advancement.
We met Beth 12 years ago on the same date she ended her nail career. And the teenager and I got to be her final clients.
And yesterday I tried the new strawberry popping bubbles at Dunkin. I had them in an iced matcha latte. I must say, this is the best matcha latte I ever had at Dunkin but the bubbles had such an artificial strawberry flavor it tasted like someone poured chunks of jello in my drink.
If Dunkin’ wants to capitalize on the boba trend they should stick to normal tapioca.
This is (kinda) my first full month with a Silk & Sonder planner. I say “kinda” because it arrived a week into the month.
But I realized today, that even if some of my prompts are empty, and even if I stare at the same exercise day after day, that I am still performing the reflection actively and being present for/in myself.
The new July planner is, according to a tracking email I got this morning, out for delivery today. This is very exciting as I feel like now I can perhaps slowly ease into the upcoming them and actually use the planner as a planner.
I’ve experimented with various ways to log what’s important to me and honestly I still struggle with “what should be where.” I can’t determine what should be on my monthly habit tracker versus my weekly goal tracker.
I have quasi-decided that my monthly habit tracker reinforces habits I have established and the weekly goal tracker helps me tackle specific projects or establishing/renewing habits.
The other “problem” I have is using the weekly health planner— it’s been blank each planner I have received. I don’t meditate, never have and don’t intend to. I haven’t reliably reconnected with flossing. I haven’t lifted a dumbbell in months. Once upon a time I did yoga…
But that also brings up the idea of how many times can you list something as a goal and/or put it on the tracker and not do it at all.
Angel Ackerman 