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.
Yesterday I had hoped to do more editing on the bits and pieces left of the near-final manuscript of Manipulations, the first of three novels by me, coming soon from my little publishing imprint, Parisian Phoenix.
But then my graphic designer partner in crime (and this endeavor) encouraged me to start Karen by Marie Killilea. The book was in its 11th printing by the mid-sixties and I am reading a copy from about 60 years ago.
It’s part of my recent quest to understand my cerebral palsy, which ironically led to me discovering that my anemia has reared its ugly head. So maybe this quest isn’t addressing physical needs as much as emotional ones. And the neurologist’s office did return my call. My appointment is January 13. Yes, in six-and-a-half months.
While I certainly understand what these parents must have gone through (Karen was born in 1940 and died in 2020), this certainly was a different era. An era of institutions, a lack of knowledge and families and doctors sitting around smoking cigarettes together.
But so far, and I believe Karen is now 4, Karen is described as beautiful, but presented as a thing in the background. The memoir so far is about the mother and her thoughts and parenting techniques and her interactions with the medical community.
To me, the way Marie describes placing her in the backyard and going in the house to do chores… well, Karen slowly pulls herself by her arms inching toward whatever is of interest. The current chapter describes her playing in a mud puddle. She sounds like a fish caught between land and sea.
Honestly, to me it sounds cruel. I’m sure it fostered independence and strength but damn it sounds grueling for Karen. This is the beginning of the ideology of mainstreaming kids with disabilities— toss them in and let them adjust. And as young people with disabilities, emotions and intellect are still immature. So it is cruel in my opinion to let these children struggle with the physical, too. It’s this weird we get that we are different but we don’t have the life experience to understand why or how and while allowing a child to figure it out raises a fighter and someone not prone to accept help or pity, it would be nice to have some framework other than you can or cannot do something or are or are not like everyone else.
I see a potential multitude of nonfiction book projects in my future. My memoir will need to be three volumes: my childhood, my “squiggly” career (yes there is a term for people with eclectic careers like mine), and this health quest.
Speaking of non-fiction, I would like to publish my honors thesis from Lafayette College and do an anthology where I have select authors/artists to explore what I will refer to as identity politics. I have mentioned it to Nan, my blind friend, and Bill, my horror-loving freak friend, and both love the idea. I encourage you to read Bill’s novels, The Kink Noir series, which blend a dark 1940s detective vibe with kink and erotica while exploring some topics about what it means to be human.
My review of Bill’s most recent book is here: Debauchery
Speaking of Bill, my flower workshop got postponed last night, so Bill, fresh off of jury duty, came down to catch up and have dinner at the always charming Porter’s Pub in Easton, Pa.
Rib eye with Jameson’s Demi-Glace
Armed with the news that my iron is low, he bought me a steak and a lemony-smooth gin martini.
Upon arriving home, I finished taking out the garbage and recycling including two more 13-gallon trash bags from teenager two’s room. It looks like she’s officially ghosted me, and that makes me sad.
And I let the dog sleep with me. And as my room is the front room, she heard every noise in the neighborhood.
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.
And when I started working at Target, the baristas there extended my love of sweets to include various fancy overpriced coffee drinks. (Yes, Starbucks, that salted caramel mocha latte and the caramel ribbon Frappuccino are delicious.)
But when I started focusing on eating for health and bodybuilding, the sugar had to go.
Historically, I’ve never been a coffee drinker. But a bout with severe anemia ten years ago had me relying on a five-year-old making coffee because the afternoon sun had stolen all my energy on the walk home from her kindergarten class.
I would literally rest on the living room rug and that coffee would give me the energy to climb my way to the table.
So when I needed to end my sugar habit, I replaced it with a plain cup of coffee with a touch of cream. If I were hungry, that would stave my hunger until I made a proper snack. If I were eating out of boredom or emotion, the coffee gave me something to do.
But now, almost five years later, I realize I have become a stress-coffee-drinker. That if I’m gloomy, or tired, or bored, or upset, I go get a cup of coffee.
I’m still disciplined about sugar, though I am slipping back into my old ways, but I notice now I want coffee AND pastry.
Angel Ackerman 