3/4 of the year: The August medical update and ‘the feels’

Yesterday Nancy (my blind friend, poetry editor and my sassy mentor/ partner in crime) and I were in her bank. The other local branch of this big name bank had had some sort of building emergency. That office was temporarily closed, so the customers were lining up with us. The bank was understaffed (the man in charge had a lovely amiable personality and told us all if we wanted a job he needed two tellers immediately. I turned to Nan and asked if she wanted to apply. She laughed).

We were fourth in line, with a small brown man with an accent in front of us. He overheard me tell Nan something indirectly about my weight (the fact that I had worn jewelry made me jingle and I had on heels so I was unusually tall). And I said something about finally having the mindset to make an effort even if I hadn’t lost any of my stress-induced pandemic weight.

The man in front of us softly said, “you look great” (and when we left I got cat-called so it had to be true, I suppose). A few minutes later the man mentioned that seeing Nancy reminded him of the story of Jesus healing the blind man.

Now, before I continue this story, picture us in the chaos of an old-fashioned bank building, the arched ceilings and the old mega vault. Picture the long line, socially-distanced. Picture awkwardly-gaited me and the little old lady with the white cane on my arm.

I have heard the stories of disabled people dealing with religious folks who want to pray for them or with them. And this man muttered something about blindness being a blessing. And Nan mentioned something about disability teaching lessons to those around us and reminding us to have patience.

“It’s a blessing,” the man said.

Easy for him to say. It reminded me of something I heard on a podcast interview with a martial artist who has cerebral palsy. “I can do anything anyone else can do,” he said.

I mean, it’s the crap we always hear. And we can do anything anyone else can. But we also can’t. There’a footnote to that statement no one ever told me: you can’t expect to do it the same way they do it. You won’t look like them or necessarily achieve the same things in the same order. The able-bodied will never understand how different simple tasks that come easily for others can feel impossible to us. I spent my whole life trying to do what everyone else did, they way I saw them do it. But I didn’t understand that the physics of my body is very different from anyone else’s.

My legs and arms are often covered with brushes and scratches from bumping into things. I stumble and fall. But, I haven’t had a serious fall since August 3. That’s exciting. My average since the mallet finger has been every two weeks. I’ve now made it almost three. Today, I have my follow-up with my doctor, and I had called his office when I started the application process for a mobility dog through Susquehanna Service Dogs.

I’ve blogged about this most recently here. I connected some of my earlier posts about the process and decision here.

I asked his staff if he could fill out the medical form, because if he didn’t think he was the right person I could call my neurology physiatrist. She was/is amazing but I only met her once, two months ago. I have been with my primary care physician for 14 years.

His staff checked with him and they assured me that he not only fill out the form but that he would do it at my already scheduled appointment today. I normally see my doctor twice a year, in winter for my physical and in summer to review bloodwork and health issues that may pop up during the year.

When I ruptured my tendon in April, I visited him because my entire system was thrown off balance with the injury and although the specialist had allowed me to return to work (rightfully so), my hip was in pain and I was falling all the time. He signed me out of work for a short recovery leave of about three weeks, so I could work with Andrew, my strength and fitness coach at Apex Training, my occupational therapists at The Institute for Hand and Upper Extremity Rehab, and my talented chiropractor and physical therapy guru Nicole Jensen of Back in Line Chiropractic and Wellness Center.

I have documented this journey and have started writing my cerebral palsy memoir, Gravity is a Harsh Mistress with clever title by my estranged but still strange husband. Blog posts with connections to cerebral palsy are listed here.

My primary care doctor followed up with me after my specialist visit and allowed me to return to work at the end of May, even though my finger was still in a cast. We made this decision because the effort I gave Andrew had paid off and my hip was no longer bothering me. In addition, I had my first meeting with my physiatrist a few days later and I wanted to see how I felt after a week back-to-work to relay that information to her.

Anyway, point is, I haven’t seen my primary care doctor since May. He hasn’t seen my healed finger. He hasn’t heard about some of my rather dramatically majestic recent falls.

My weight today was 155, which is more than five pounds less than what it was at the gynecologist’s office last week.

I arrived early. I was in my exam room before my appointment time. My friend Gayle was bringing me her laptop so I could work on the cat book edits. I told her to put it in my car as I didn’t have time to run to her house and didn’t know how long my appointment would be. She ended up at the wrong medical practice. There are two similar St. Luke’s affiliated family practices in neighboring buildings.

I was texting her and making notes waiting for the doctor. I noticed my phone buzz again. My mom had sent a photo via text. That’s odd, I thought to myself. Mom hasn’t said much to me since the Teenager and I surprised her companion on Father’s Day. She didn’t even text me when she went to Florida to visit family. So, what was this?

I opened it.

I shouldn’t have. It was my father’s tombstone. My mother, despite having divorced more than 30 years ago, visits my father’s grave regularly. She’s grieving him, as many people are, and she is also grieving two of her brothers who died in the weeks before my father.

I couldn’t hold back tears. I have not visited my father’s grave since the funeral, and even then I did not get out of the car. I don’t see the point. The funeral had alienated me, and I didn’t feel like I “belonged,” and that’s not due to my family. But my father wasn’t there anymore. It was a corpse. And I had no need to see it formally placed in dirt. He was gone. And no ceremony will change that. Even now, I’m crying again.

Several times I regain my composure and several times I lose it, until eventually the doctor knocks on the door. So, I had to explain.

I mean, I suppose I didn’t have to, but it seemed only fair.

That meant we spent the first ten minutes of my appointment talking about boundaries, grief, and therapy. I’ve been with my psychologist even longer than I’ve been a patient of my doctor and the two of them know each other and speak so sweetly and kindly about each other.

We moved on then I think first to my recovered mallet finger. We reviewed my bloodwork. I told him I had to go get more iron, as my previous bottle had run out and I was using a different iron that didn’t seem to be working as I told Nan yesterday that I “almost bought a pair of potato chips.” Now, when you’ve had a history of iron issues and anemia, word confusion is a symptom. And I have been using wrong words in speech for at least a week. So either the iron is dipping or I should be screened for early onset dementia.

I almost bought a pair of potato chips.

I used this opportunities to ask if there were any other adjustments he wanted to make to my vitamin regimen. He suggested sticking with the 2000 ius of Vitamin D3 (which I take with calcium).

Next, we tackled the form for the service dog. Much to my relief, he thought the dog would be extremely helpful for me. And he also commended me for the work I do to take care of myself. In the evaluation for the service dog process, I was telling stories from the gym and mentioned how my ankle finally popped for my chiropractor Wednesday night, and how after my last fall I asked the Teenager to evaluate my walk, then she told Andrew this info at the gym, and he monitored my movement, until the next day I went to the chiropractor and she had to maneuver my hip back where it belonged.

She said I needed to do more single leg muscle stability work, which I then told Andrew, and I relayed to the doctor the horrible exercises Andrew made me do. And my doctor chuckled.

He once told me that he doesn’t worry about me because he knows if he tells me to do something I will do it. And I think Andrew and Chiropractor Nicole see the same commitment in me. My doctor today said this is why I am in better shape than many of his patients, despite my issues.

He handed me the completed form, which is the type of thing the office signs decry “requires 7-10 days” and payment of form fees. I am so grateful for my team, their respect and their guidance.

Meanwhile, while I am setting up my annual physical for February 2023, I see a text from Gayle. Remember Gayle? Apparently, she forgot my current car was a Volkswagen and was wandering in the parking lot looking for a silver Nissan. (My last car was a red Altima.) I didn’t have my Stitch Fix parking permit on my mirror. The car was clean because The Teenager has her own vehicle now. And there were four silver cars– none of the Nissans– in the parking lot.

She meandered around so long that a staff member came out and asked if she was sick or needed help. When I left the building, Gayle was next to my car. I had been with the doctor for an hour.

“You’re still here?” I said.

“I’ve been out here 45 minutes,” she said. “So when you replied to my text I figured I might as well stay and say ‘hi.’ What’s five more?”

Only you, Gayle. Only you.

Cracker Barrel & Vitamin D: Blending the Mundane, Building Friendship

I started my day by leaving the house at 7:15 a.m. to visit my friends the phlebotomists at Quest Diagnostics. With my history of anemia and fluctuating iron & vitamin D levels, I tend to get iron & vitamin D checks with my annual bloodwork.

My vitamin D was low during my January 2021 physical (22) so I started adding vitamin D + calcium supplements to my diet. With my multi & my slow release iron.

By June, that had jumped to 32. I stayed that level for the next six months. Today’s test would see if I had gained more— 30 is considered normal.

I started laundry before I left so I could wear my new cat t-shirt. I had a much anticipated meeting with social activist-journalist Dawn Heinbach scheduled for the afternoon at Cracker Barrel, a location I thought would be convenient as she lives several counties away. She submitted some material for the Not an Able-Bodied White Man with Money anthology. I had some books she wanted. I know she’s a cat person so I knew she would love my French pun cat shirt.

When I got home from Quest, I made an egg sandwich and took a photo to my artist friend Maryann whose mixed media postcards appeared in Not an Able-Bodied White Man with Money. She thinks all my food photographs are well-played and pleasingly styled. I told her she’ll have to come for dinner.

I put the laundry in the dryer and eventually changed into my cat shirt. I did some paperwork before I picked up my good friend Nancy to provide a ride to the doctor. Nancy is my poetry editor at Parisian Phoenix Publishing and she’s blind. She keeps me in line both with my writing and my business and occasionally has to make sure I’m facing my disability in an intelligent fashion.

While at the doctor’s office a very senior citizen’s phone went off. The ring tone was the opening notes of Usher’s “Yeah.” I had to bite my tongue to keep from laughing. He looked mortified. Did a grandchild prank him?

I finished Tylia Flores’ Handi-Capable while in the waiting room. I posted a review on Amazon.

We did a couple other Nancy errands and I pointed out I needed gas in the car, and asked if she’d mind a detour to Wawa. I think Nan made out on that one as she went home sign a turkey sandwich, some sour cream and onion potato chips and some half-and-half iced tea/lemonade.

Somehow the two of us can do absolutely nothing but laugh while doing it.

I spent the afternoon blogging and catching up on some work for the business before it was time to go to Fogelsville for my early dinner.

The sky opened, as they say.

I told Dawn I would hang out in those amazing Cracker Barrel rocking chairs. I didn’t know it would be in a deluge.

Luckily I had my umbrella in my car.

The servers came out and danced in the rain. An old man complimented my Eiffel Tower umbrella and said he and his wife were going there next.

Ever the grammar nerd, I said, “really? From Cracker Barrel right to Paris? I hope you love it.”

Dawn and I had a superb conversation about what journalism should be, and she lives in the geographic region served by my protege at Berks-Mont newspapers. We talked cats— and she did like the cat shirt. And my turkey dinner was disappointing but Dawn and I chatted for two hours. We shared a cup of coffee after dinner before going our separate ways.

I bought the teen a Scooby Doo mug and myself a coconut peanut butter candy that tasted like toffee both in flavor and mouth feel.

On the way home, my 2015 jetta played a horrible prank on me. The gas gauge and miles per gallon/miles until empty screens didn’t display any information. Luckily I got gas with Nan so I knew I had plenty. On the highway. 26 miles away from home.

Upon reaching home, I took care of some correspondence and received an update from my doctor. My vitamin D is now 37!

Fitness update: Where did that leg go?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dahlias from a friend

Baby steps: Attitude and habits to fight anemia

Although my current quest is to understand (after decades of life existence) my cerebral palsy, recent bloodwork has 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 provide nutrients 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.

Day 2 alone with the menagerie and continuing my health quest

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.

Part 1: Finding the Resources to Grow

Part 2: The Teen Leaves Me With The Menagerie

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 with my 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.

If you have two minutes and you want to watch our dog eat breakfast, here is a video: Bean having Breakfast with Mom-mom

Tonight I am attending a pick-your-own bouquet workshop at a local farm. Joan is bringing me. I wonder if she will bring her little people.