So good morning all, and I have to say it’s a gorgeous Saturday and I had another great workout at Apex Training with my trainer Dan.
The photo is actually from Thursday’s workout, taken by Dan so I could tag #NickBestStrongman on social media, which I did and his official Instagram account started following me.
But today, the teenager got up early and came with me to the gym. The teenager is super strong and very balanced with the use of her body, full of power, so I wanted her to have the chance to really lift.
I think she’d be an amazing powerlifter.
And she did most of my weights at the gym today without breaking a sweat. Flexibility is her weakness. Balance is mine. Well, other than the cerebral palsy.
The teenager and I did a barbell bench press of 55 pounds, and did some hex deadlifts as well.
I came home and had an almost vegan breakfast— cream of wheat, vanilla soy milk, fresh artisan cashew butter from The Peanut Company in Cape May, dried blueberries, chia seeds and the one animal product, local honey. That was so delicious.
My body turned to me as I went to my car after work today, and as I fiddled with the radio (calling up Natalie Merchant on Spotify singing Space Oddity), my body said to me,
“Jesus, woman, what are you doing? We need to talk.”
Let’s start at the beginning, shall we? But we can’t spend too much time on all this as it is 1:30 a.m. and my aching body craves sleep.
The teenager was up fairly early today so I suggested she and our almost 1-year-old pit bull/mastiff/black lab puppy walk with me to the gym, about 5 blocks away.
Now if you’re new here… I’m 46 years old, a former newspaper reporter. I have an amazing 17-year-old daughter. Her father and I separated two years ago but he lives nearby and is still an important part of our household. I have cerebral palsy. He has a club hand. I have recently started a quest to learn more about my body, restart my bodybuilding commitment (I was really into it six years ago) as an alternative to traditional physical therapy, and hopefully lose the 20 pounds I gained stress eating to cope with the toxic workplace of the last nonprofit I worked for.
So, the teenager, the dog and I walked up to the gym. F. Bean Barker is learning new manners everyday and the guys at the gym thought she was a beautiful dog.
And then the focus changed to leg day. Now, on upper body day I get to train like a normal person. On lower body day, my poor trainer has to balance my physical deficits with my desire to kick ass.
Or maybe I’m just as awkward both days, and I just never noticed.
Today was session six. It’s the last week of two sessions a week and next week we increase to three.
Please note: I have been in gyms lifting weights since college, which was about 25 years ago, and in recent years I’ve been in physical therapy to learn to walk, for balance, for the strain of my lumbar region caused by trouble with my S1 joint and my broken ankle. Every body is different. Every ailment or disability is different. It is a quest to balance what works for you, what your body needs and what hurts.
I firmly believe that nothing fixes the body like the right exercises. But for people with disabilities or health issues, it’s hard to recognize what pain you need to work through and what hurt is bad. As a weight lifter, I know muscle recovery pain. As a person with a disability, I often experience burning pain.
As a society, I feel like we invest so much money in medical tests, mental health, drugs, organic food, but we don’t want to pay for a trainer.
My trainer is getting to know me. He knows how to observe me. He asks questions about my mobility. We test exercises by going easy at first and adjusting them based on my performance.
And he reads me well.
There are times I can tell he’s afraid of pushing me too far and then I do the exercise and he makes it ten times harder because I surpassed his expectations. This makes him a good trainer because it means he’s testing my basic form and strength so I don’t get hurt. And he readsmy body language to see how I’m doing— not relying on my words.
A good trainer has to push you out of your comfort zone. But he also has to make sure everything’s executed for best impact and in a way that you don’t get hurt.
I have to admit, I hated him a little today. But I also love his full body approach. But when he tells me to do sumo squats with a 15-pound dumbbell and my toes pointed out AND make sure my knees “follow” my toes… I don’t know whether to cry or punch him.
It’s the gym— both those feelings are valid.
But let’s examine the issue. My knees face in.
This means to perform the motion he has requested, I need to move one foot at a time carefully into position. I need to really concentrate on balance. As I move, I need to keep my head up, focus on stretching the knees to position in line with my toes (which is not the way they go) while holding a weight and trying not to fall.
I was dripping sweat by the end of this session— before he hands me a kettle bell to end the work out with kettle bells swings.
When I got home, I made a massive high protein vegan pasta. See me make it here (this can also be my official “before” video.)
I ate 90% vegan today. Only animal products I had were half and half for my coffee and a pack of beef jerky at work. I almost had iced tea with local honey but the teenager spilled it when I left it on the dog crate.
This was dinner:
Speaking of dinner— tonight at the Bizzy Hizzy my team competed in the Stitch Fix olympics. We won the gold medal in the egg toss. I was relieved they weren’t real eggs.
In other news:
I almost started editing William Prystauk’s latest novel in the Kink Noir series.
My Poppy Z. Brite books have arrived.
I hurt. I hope it’s the good hurt.
My friend Joan not only brought us old linens, but scored a cat carrier and animal crate at a yard sale.
Well, if yesterday made one thing apparent… it’s that sometimes answers lead to bigger questions.
And questions often shake our foundations.
I have had an appointment every day this week before work. In the last ten days or so, I have seen my therapist, my personal trainer, my chiropractor (who has a background in physical therapy) and my primary care doctor and one of his new residents.
My heart was genuinely excited for the visit as I’ve made a lot of positive health habit changes and my primary care physician and I have a great relationship. Normally my care is a discussion and we work together to resolve my issues.
Since Covid, the practice has seemed much less organized and attentive as usual. They also recently took on some family practice medical residents. I waited in the exam room for 75 minutes.
I went into my phone to record my blood pressure on iHealth. And that’s when I noticed— iHealth has been recording my double support time and my walk asymmetry for a year. (This morning I compared my walking and balance statistics with my teenager’s and her walk is more screwed up that mine! My walk is consistent and consistently “off” but hers gets severely skewed every time she gets plantar warts. Turns out my neighbor has more issues in this area than I do, too.)
So, at 12:15 pm — as I am lusting for a glass of water and breakfast, I had nothing yet but a gargle of purple listerine— the resident enters the room and apologizes for the tardiness. I told her I was about to order GrubHub out of fear they forgot me.
I told her everything about me (as she had never met me before) and relayed that the doctor wanted to see me. I also mentioned that muscle relaxers might be a better fit to ease my periodic pain than ibuprofen or acetaminophen because it might be more due to the stress on my joints and the tightness of my muscles as a side effect of the cerebral palsy.
Now, remember, my anemia started more than 12 years ago with work stress, gaining weight and heavy menstrual bleeding. And I came to my current doctor because my former one refused to look into the source of my anemia. And that doctor made me cry. And I had started having panic attacks.
Now I am back in a similar symptom situation but I have better mental health and a way better doctor.
The resident goes and gets my doctor. I propose waiting several months to see if the anemia improves with the mesures I am pursuing now. He is worried about polyps in my colon. We agreed I will use some stool cards for a home test.
I didn’t feel heard about my request to find solutions for my body pain because then we discussed my mental health.
And he wanted me to visit their new staff psychiatrist to rule out any issues (like bipolar 2) that might require a mood stabilizer.
Now I complete understand why his said this: I had mentioned some dramatic temper incidents previous to some of my recent lifestyle changes, I had asked to restart the prescription for a very low dose of lexapro that had been prescribed for high blood pressure to see if it would even out some premenstrual mood swings, and I had mentioned some highs and lows in the past.
But I also said the isolation of the pandemic gave me the space I needed to deal with some heavy duty stress, and that good things were developing for me and I felt like this was one of the great years in my life. I talked about having rid myself of anxiety and being able to look back at that former period of my life with understanding of myself and pride. And that my therapist and I were finally looking at my childhood trauma as I scored 6/7 on the ACE test.
And he knows I have been in therapy for more than a decade. And that my therapist recommended him. Shouldn’t he let my therapist request that type of referral?
So I felt betrayed and it reintroduced feelings of anxiety and insecurity, not being sure if my medical professional was really paying attention to me and what I was saying. I had just mentioned delving into childhood trauma for the first time in my life. I am having other health issues that I need to address. So now, in my opinion, is not the time for questioning my brain chemistry.
So we agreed to discuss my anemia and my psychological state with my gynecologist (whom I see Monday) and my therapist and revisit the issue when I return in three months to discuss the follow up blood work.
This left me shaken and wanting to scream, “Stay in your lane.” I went to the doctor because he asked me to come discuss my anemia— how did a shrink come into play?
I often think this is how people get misdiagnosed, not by bad doctors, but by doctors trying to rule everything out and in the process convincing patients they need different help that they actually need. Like when people see a commercial for medicine and later “ask your doctor if (this expensive drug) is right for you.”
I emailed my therapist from my phone as soon as I got into my car. By 3:30 pm, he said he disagreed with this assessment— that I should be screened by a psychiatrist— but that we would discuss. Honestly, he is the only person I would trust with a decision like that. We all need to build teams we can trust. And this is how I advocate for myself.
When I got home, around 2 p.m., I finally had my morning coffee and made this— what I would call my “summer vegan sandwich,” courtesy of my stress shopping last week and a Hungryroot delivery. (See the teenager unboxing here.) Lightlife bacon tempeh, Hungryroot lemon tahini, romaine, deli pickle on 12-grain bread.
I didn’t take proper care of the animals (loosing almost four hours of my day to a doctor’s appointment that normally takes one hour).
I QCed 123 fixes, which is far better than the 116 the night prior. When my favorite Stitch Fix supervisor said hello, she asked how I was, I said okay. She looked at me askance and said, “only okay?”
She told me if I needed anything or if there was anything she could do to let her know. But she can’t fix the emotions in my head. So I thanked her and went back to some of my standbys— showtunes!
I listened to the soundtrack of Avenue Q as we used to in the makeshift temporary newsroom of Lehigh Valley News Group, and I can still remember one of my favorite young editors with her big headphones on, fighting her stress and her insecurities with a dose of “What do you do with a B.A. in English/It sucks to be me.”
Speaking of the newspaper days, I’ve reached out to some Chronicle colleagues for help with promoting the FURR Pop Up Cat Café August 15. The man who hired me for that newspaper (the boss of my best boss ever) mentioned that my daughter has grown up in the blink of an eye (which he has seen thanks to Facebook).
And that brought back great memories as I think the teenager was the only baby born to a staff member during the run of those newspapers. I realized I was pregnant while planning a political debate sponsored by the newspaper in Phillipsburg, N.J.
So yesterday was hard, and I managed to avoid slipping into those old panic-prone mentalities. I am drained today but luckily only have a four hour shift.
This weekend was a strange blend of trying to catch up, trying to get ahead and trying to touch base with friends I haven’t seen in a while.
Bill Prystauk (the author of the Kink Noir book series) took the teenager and I to Jasmine for sushi and sashimi. We had a love boat where I tried and enjoyed sashimi for the first time: white tuna, salmon and some clam thing that tasted like a seafood gummy bear.
This week I have a commitment every morning and the Bizzy Hizzy every night. I don’t anticipate voluntary time off because the warehouse won’t have computers on August 2 so that will be another 3-day weekend.
The FURR Pop Up Cat Café is reaching some critical mass as FURR volunteers get more involved and excited. Tomorrow I have a 7:45 phone conversation scheduled with my cat foster godmother and an event planning meeting at 9 will Janel. Still no update on a coffee provider… I’m getting nervous.
But Joan Z agreed to take photos, Gayle is helping design some games.
Then at 10, I’ll be meeting Nan. And at 1, I’ll cook lunch and get ready for my Stitch Fix shift.
This week, I have two training sessions with Dan at Apex Training. Tuesday and Friday. As part of my recovery after these workouts, these might be my main days to do my edits and proofs on the final file for Manipulations. Official launch date is September 11.
Wednesday I visit the chiropractor (and I can’t wait to see what she thinks about my new fitness routine) and Thursday I see my primary care physicians and his residents about my anemia.
I mention all of this because these are the weeks when one has to focus on food prep, proper rest and activities to maintain mental balance.
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.
Improve strength, flexibility and agility.
Build muscle and tone body.
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 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.
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
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.
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.