Angel Ackerman's Blog, page 16

Good news. The aneurysm is nothing to worry about.

I have no doctor appointments, nor tests, for the next month. It’s been three months and a lot of professionals later… with no official diagnosis but many clues. And I’m okay with clues. The tilt table study, as I thought, came back normal so I don’t have POTS and that is good news. My symptoms share some similarities with POTS, but I’ve never fainted so there’s that. Smug little doctor man was right, but he could have been less dismissive about it.

The lovely hatch pattern on my shoulder from my fall Monday is healing nicely and I don’t seem to have any more permanent damage from it. So that’s more good news.

I’ve been keeping up with my metrics at work, but my body has felt very awkward about it.

Today I am scheduled for a home visit from Susquehanna Service Dogs, and the teenager has been working hard not only on decluttering the house but also cleaning. I intended to help more, but I came home from the neurovascular appointment yesterday, canceled the gym, took a shower and went to bed without dinner.

I slept more than nine hours. And I noticed at the doctor’s office my temperature was 98.3, which is actually high for me as I am usually around 97-point-something. I checked my watch and sure enough my temperature has been steadily creeping upward, but so has the sunshine and heat outside.

Regardless, I wasted last night by spending it cuddled with Louise instead of accomplishing anything. I knew I should have stopped for coffee on the way home.

The neurologist I visited yesterday was located in the Doctor’s Pavilion at the hospital, recommended by my neurologist/physiatrist, to consult with me about my aneurysm. It was a tiny office on the sixth floor of the building with a list of doctors and physicians assistants that had to be thirty people long. The waiting room was also small, and like a good patient, I arrived at 1:50 p.m. as they asked me to be there by 2 p.m. for my 2:15 p.m. appointment. And by some strange coincidence, I found a very convenient parking space.

I had also completed all my paperwork, confirmation and check-in online. They had me in the waiting room by 1:52 p.m. And despite the fact that I had a very compelling brand new ebook on my phone, The 8-Ball Magic of Suzie Q by Jody J. Sperling, I was way too exhausted and a tad too lightheaded to read it.

Instead, I people watched. As the small waiting room grew more and more crowded. A woman in a wheelchair that didn’t fit in the actual seating area. Her caretaker. A thin woman with bronze skin who didn’t look up and had a cane. A woman with bold tattoos who argued in Spanish with a burly man who spoke on his red iPhone once she left for her appointment. (She appeared to be the only one close to my age.) A large African American man whose accent revealed he may have had cognitive issues either from a congenital disability or a stroke– I was in a neurologist’s office waiting for a neurovascular assessment. And several more who arrived as my name was called. It was very claustrophobic.

My medical assistant introduced herself as Franky, while her nametag revealed her full name was Francesca. She said she loved my name and said it was her brother’s name. My name harkens back to my birth story, so I always experience a pang of weird sensation when someone mentions it. It’s a mix of gratefulness to be alive and also a split second decision of what do I keep to myself and what do I share.

I usually keep to myself.

Franky warned me that my providers were running behind and that they probably would not arrived until 2:40 p.m. and if they arrived later than that, she would check on me. I spent the next half hour staring out the window, and studying the models of spines. Without touching of course.

By physician’s assistant arrived at 3 p.m. and used a lot of big words, showed me an image of my aneurysm (which is on the vessel between my left eye and my nose) and explained our plan of monitoring this tiny balloon of blood in my brain. (My phrase, not hers. I don’t know her big words.)

As long as the right side of my body doesn’t suddenly experience numbness or other hemiplegia (that’s my word– I know that one from cerebral palsy lingo) or as long as I don’t start experience the worst headaches I’ve ever experienced in my life, I’m good. With a less than 1% chance per year of something happening. But should either of those things happen, I am to visit the ER immediately.

After a thorough neurological exam, I headed home, leaving the hospital around 3:30 p.m. I don’t normally drive the highways at that time, and since the Lehigh Valley has so many medical professionals it seems the 3 p.m. time has a ridiculous amount of traffic. And I still can’t believe the number of people who cannot merge. You can tell from their driving that they are terrified.

Here’s hoping I can stay awake past 6:30 p.m. tonight.

Monday. Just Monday.

Despite waking yesterday 15 minutes before my alarm and falling asleep face down in my pillow as I tried to lift my phone off my desk to start my day, yesterday started as a decent day. It was slow, and everything seemed to annoy me. My body hurt, my heart rate and blood pressure seemed off, but my work metrics were good. Too good.

I was very thirsty all day, and ended up stepping away from my station three times during the day to use the restroom– which is not me– but my current symptoms include not being able to tell how urgent the signal to urinate is so waiting too long or not responding immediately might result in an uncomfortable outcome.

I returned to eating “real food” after a weekend of salty and sweet treats for my birthday, which made my body feel generally bloated and sluggish but had stabilized some of my postural issues.

And my hand, the one where the medical professional had done an exploratory IV last week, turned multiple colors that didn’t exist there over the weekend.

The coffee shop I had selected to meet Natalie Lowell of Exquisite Page turned out to be closed on Monday, as was my second choice, so she suggested the old familiar Terra Cafe. I had a lovely London Fog and the discussion flowed easily.

I learned along the way to the cafe that the Meet-and-Greet scheduled for FURR Louise for June 10 was actually a sight-unseen adoption, which makes me nervous with special needs cats and this one has been in my bedroom for two years and sleeping in my arms at night for at least six months.

I ate a small snack. From there I went to the gym, where Andrew– despite our schedules keeping us apart for a week– put me through a brutal workout, which really wasn’t that brutal but it felt brutal, reinforcing the idea that maybe my recent health problems are just a ramification of being 25 pounds overweight and out-of-shape.

And then I had a good old-fashioned fall on the way home. The kind that scraped my hands and bruised my thigh and chewed up the flesh of my shoulder. After a conversation with my Apple Watch, (“Looks like you had a hard fall.” “I fell, but I’m okay.”) I headed home, my pride more battered than anything else.

The Teenager made an enjoyable dinner and I had a Hostess cupcake. I could have finished the strawberry cream puffs from Sheetz. Those were surprisingly amazing.

By the time I took my shower, my wounds stung and my left hand was trembling. My heart rate and heart rate variability were low, my blood oxygen was 97% and my blood pressure was high. I decided to write a small blog entry, but when I opened my computer I saw a message from Gayle.

The content led me to believe that I sent her the wrong edited file of Larry Sceurman’s Coffee in the Morning, and so I opted to go to bed. When I woke this morning, I had received the truest of all motivational messages from Gayle.

DO NOT SECOND GUESS YOURSELF

So when I get home from work today, I’ll have to check the file. When I have more wits about me.

While normally my self-confidence wavers, Gayle’s right. I do not second guess myself. I move forward often boldly in a direction without worrying about the consequences.

I’m not sure I feel better today. That remains to be seen. I had strange dreams last night. A toilet falling over while I was using it. Having unexpected and messy female troubles. And my favorite– sitting next to my father after dinner at the table as we always did. He would be smoking his cigarettes and perhaps having a cup of coffee. The Teenager and my stepmom were sharing cheesecake as if nothing were wrong, and not offering me any. And then I realized that my father is dead, and that The Teenager and my stepmom didn’t see him. He was there just for me.

And once I realized that, he was gone, and all I had left in me was to weep.

I had fallen alseep last night with tears in my eyes. And I woke with Louise in my arms and tears in my eyes again, but this time, with the strength to face a new day.

Birthday, day three: The breakfast gravy with no biscuits

Today I slept in until nearly 6 a.m., waking only when I heard The Teenager rise and leave the house for her dog walk client. I laid in bed until almost 6:20. To me, that is the ultimate laziness as I usually begin work at 6:30 a.m.

It’s been another delightful birthday day of celebration. I started the morning with breakfast with some of my Stitch Fix crew, with Southern Candy arriving at Big Papa’s early to bestow the table with some decorations.

There were cards and laughter and Southern Candy ordered her regular biscuits and gravy only to discover the biscuits were not biscuits but English muffins. So much commotion ensued of the giggling and carrying on sort, making jokes about what to call biscuits and gravy that does not contain biscuits, because English muffins with gravy sounds gross.

We had a discussion about making our own biscuits and bringing them and comparing making biscuits with shortening versus lard.

I ordered a spinach, green pepper and feta omelet hoping that the vegetables would help heal the damage done by my weekend of caffeine, sugar, fat and grease.

That might be too much to hope for as my blood pressure was 116/96.

The next item on the agenda was to take FURR foster tripod Louise to a meet-and-greet event at the Phillipsburg Petco, where she behaved like a trooper (even if she did spill her litter box so she could hide under it).

I was able to finish the last set of changes to Coffee in the Morning by Larry Sceurman on the laptop while chatting with another FURR volunteer to happens to be the only person I know eagerly and reliably waiting for my next novel.

I came home, cleaned up my room and finished Netflix’s Queen Charlotte, which, as all the Bridgerton tales do, has quite the sentimentality regarding love and relationships.

I also ate a rather large “elephant ear” with The Teenager that Little Dog’s mom had procured.

I’m off to check my blood pressure, take my evening meds, pack a lunch, and decide on dinner. But I just may allow myself a birthday beverage– as my birthday weekend officially launched with a gin gimlet with photography Joan and her other half, Randy.

Birthday, day two: Off to the races!

Yesterday was my official birthday and the festivities exhausted me so heartily that I have waited until this morning to write about it. Since the medical establishment has not discovered rhyme or reason about my recent health issues, I made the decision earlier this weekend to eat what I felt like consuming, have a good time and return to my disciplined habits tomorrow.

Currently, I am sipping my peppermint coffee, while combating a vague lightheadedness and lower blood pressure and taking my beta blocker. I miss the robustness of my strong Supercoffee dark roast and had I known my blood pressure was low, I would have made some, but I feared it was high from my diet of Sheetz spicy chicken sandwich, jalapeno poppers and a premium sampler of salty fried snacks, pastries upon pastries, and sugary candy galore… because it was my birthday.

Little Dog stayed with us for a few days and her mother returned for her yesterday, bringing with her the largest pastry I have ever seen which I later discovered was an elephant ear and what I am eating now, which appears to be some sort of blueberry scone with a touch of lemon if I am not mistaken. But someone must tell whatever bakery Jan is visiting that the term “elephant ear” is not meant to be life size.

The Teenager wanted so terribly to take me for a nice meal of my choice, but I told her– you know what I want? Some decadent road trip snacks to eat on our way to Pocono Raceway for the Sports Car Club of America Road Racing Northern New Jersey Region Joe DeLuca and Linda Gronlund Freedom Major. (scca.com)

One of my high school peers works as an official at the track, so he invited the Teenager and I to come sit in the pits and watch as many classes as we wished and potentially stay for the cookout at the end of the day.

But I get ahead of myself.

The Writing Stuff

Little Dog and I slept in until a delightful 5:30 a.m. yesterday and then I copyedited the text for the next title in production for Parisian Phoenix Publishing. (We have 11 titles out now, one a tad delayed but due out as soon as we make the final tweaks, and this new one is #13, which since it is a tarot journal seems apropos.) Anyone who wishes to make my birthday even more exciting should consider buying one or several of our books. Here is the whole list on Amazon, including one book that’s not ours but shares a title and confuses the algorithm.

I finished the text of the tarot book, sent it to Gayle to mock up some design while we wait for the author to approve the text, and then headed to a meeting at Panera Bread with Larry Sceurman to retrieve his final proof on Coffee in the Morning. As it was my birthday, Panera gave me a free pastry after I already ordered my asiago bagel with chive cream cheese and Larry paid for my refreshments due to my day of birth.

I am happy to report that the changes to Coffee in the Morning are minor, and very good catches on the part of Larry and his wife, Barbara. The team spirit at Parisian Phoenix creates an atmosphere where we all really are putting our best foot forward and making sure we all look good in the end.

From there Larry and I attended the Greater Lehigh Valley Writers Group to surprise Darrell Parry, who was giving the morning presentation and afternoon workshop on poetry. I may have left with an invitation to be the October speaker and a nomination to serve as the group’s president. More on that here.

With my commitment to attend the races, I could not stay for the afternoon workshop. I went home and collected the Teenager and we drove over to Sheetz to collect our road trip snacks, redeem birthday points for gas ($2.92 a gallon) and head to Pocono Raceway with a Spotify playlist The Teenager carefully curated.

The Racing Stuff

I have not visited Pocono Raceway in 30 years. This area used to have two major racetracks, Pocono and Nazareth, and Darrell lived about a mile from the Nazareth track. It closed shortly after we graduated college, which is also damn near 30 years ago. I am not a NASCAR or Formula One fan, but my life tends to intersect with motorsports. My dad was a diesel mechanic known to race microstock, participate in tractor pulls and ride his Harley, anything to tinker with an engine.

When the Teenager was a year old, we went to the dirt track every Friday night to watch him race and when his racetrack closed, he told me not to attend his new venue as he deemed it too dirty and not family-friendly enough for the baby. I also have vague memories of going to drag races in New Jersey during my own childhood.

Once we found Bob and Erica up at Pocono, we settled in for our first class, Ford spec. Next came I believe a GT Lite class. Then the little min-formula one type cars with the small engines. The last class we saw was the Miata spec class, with three Minis and a Chevy Aveo sharing the track with them.

I definitely enjoyed the spec classes, as the cars are so similar that the race relies more on the prowess of the driver versus the classes where the cars have so many differences. In the mixed classes, the gaps between cars are much wider and that makes the race less interesting from a spectator perspective. The slow cars tend to be less interesting to watch also as they take so long to go around the track that you almost forget they are out there.

We stopped at Wawa on the way home for water and due to sale prices I ended up with fancy Hawaiian volcanic water for the same price as Deer Park.

And the special thank you goes to Santander Bank for making me feel ancient by sending me an email to remind me that my oldest account with them dates back almost 24 years and that they wish me a happy birthday.

Birthday, day one: Chicken and Waffles

Tomorrow is my birthday. I ended up taking voluntary time off from my day job to do some work for Parisian Phoenix Publishing and clean up the house. Neither of those activities lived up to my goals, but it’s been a very nice day.

I had more minor administrative stuff to do than I anticipated, but I did clean off the kitchen counters and use old glass beverage jars to sort and store my k-cups.

I arranged several meetings with my authors: to meet Joe Swarctz of Echo City Capers today to give him the latest shipment of Sometimes I Get… and tomorrow to see Larry Sceurman to get his copy of the final proof for Coffee in the Morning. Andrew had to cancel the gym today, so that made me a little sad, but gave me extra time not to rush around before a birthday dinner with the talented Joan Zachary.

Speaking of talent and birthdays, Gayle made me a font of my handwriting. And The Teenager already gave me my birthday present, a new pair of sewing scissors. Her dog ate the handles off my old pair. I haven’t sewn in a decade, but she has memories of me protecting those sewing scissors.

And apparently, she believes she ruined the blades long before the dog ate them. So her thoughtfulness and presentation and honestly made me tear up.

Around 10, I headed down to what is not my official spot– Big Papa’s Breakfast Bistro, on Northampton Street in Easton’s West Ward. I asked if I could sit in a corner, have a cup of coffee and work until my meeting with Joe over lunch at 11. I was welcomed. I also gave the restaurant my business card, explained who the various groups were that they would see me with, and that eventually I’d like to have events there. It was perfect. Exactly what I needed to finish some work.

And then Joe and I had another great meal.

Bride of Frankenstein: My tilt table test and one heckuva week

It’s been an on-again, off-again week of how I’m feeling. Same old, same old of issues with my hip, my legs locking up, and sometimes having the clearheaded nature to function like a normal person. Some days my blood pressure is high, other days it’s pretty damn perfect. Some mornings I wake up so lightheaded I stumble like a drunk, and… say it with me now… some days I don’t.

But yesterday had one bright spot– my “partner” at Susquehanna Service Dogs who will handle the final phase of my mobility dog application emailed and asked of she could do my home visit this coming Saturday. Why, I said in reply, that’s my birthday but I can tweak my plans to accommodate a visit. And the idea of this got me very happy.

And so we set the plans.

Today, I went for my tilt table test. If I had a Dr. Frankenstein fetish, it would have been quite the event. If I had teased my hair to flow upward, I could have been a Bride of Frankenstein’s Monster, since I was strapped to a table with large straps and covered with wires and tubes.

To make it more fun, my dehydrated veins (I was not allowed to eat or drink for four hours prior to the test) would not cooperate with the poor older man who had probably done 1,000 IVs in his life. The first attempt was in the inner arm of my right side, as the left completely refused to offer up any juicy conduits.

But seriously, they hooked me up to the ekg and monitored my blood pressure every 10 minutes. They strapped me to a bed that stands 70 degrees upright, and after 10 minutes at rest, they stood me up for 45 minutes to see if anything happened. Nothing did. So perhaps smug little doctor man was right. My symptoms aren’t consistent with POTS.

You know, the man administering the study said, your beta blocker can do that. (Meaning the symptoms I described.) But, I thought to myself, I had these falls that caused injury and required medical attention before I started taking a beta blocker.

Before I laid down to start the test, my heart rate was more than 100 bpm because of some inherent stressors in my morning. In comparison, when I first wake my heart rate is usually between 52 and 65 bpm. At work, my heart rate is typically between 75 and 95. My resting heart rate average for today, according to my Apple Watch series 8, is 64. And my walking average is 130 today, which, again seems a little high.

When the bed rose, it make me feel like I was drinking alcohol. Not all out dizzy but the world swirled. But it cleared up. The scary part was when my whole right hand fell asleep– because if you have read my previous blogs you may know that my left pinky is often falling a sleep and I feel like it’s a warning sign of an impending episode.

The pressure on my head and chest when they lowered the bed made me feel like I was being crushed, and the strain of standing completely still for 45 minutes made my right toes feel like they were getting frost bite.

It looks like my ekg and other results of the study were normal. Even my blood pressure behaved.

So, with a headache from barely eating, I visited Gayle for a quick meeting (I never quite realized she lives probably 500 steps from the hospital) and then grabbed some wings and fries from Wing Stop. And now I’m completely spent.

What if after all this… maybe the only thing wrong with me is that I’m overweight and out of shape?

Then, I got an email from the service dog people rescheduling my visit to 5/25. And when I got home, I had a birthday card from my mom. And since we got in another ugly disagreement on Mothers’ Day, she sent a bunch of old letters I sent her in my birthday card. No personalized note. No mention of celebrating. Just old mail. It’s a habit she’s had lately. Her own special passive aggressive way of saying “you used to love me.”

My daughter has another way of interpreting her paper trail of past communications.

Whatever it is, it’s exhausting. Ever since my dad passed away, my mom has been even more dramatic. She’s experienced a lot of loss in the last two years, as many of us have. I’m at my wits end. I haven’t had a connection to my father’s family for about six months now, and with all my recent health problems, the lack of familial support weighs heavily on me. It’s terrifying to have a known congenital disability and have something else going on that doesn’t make sense.

And it makes one’s heart hurt when you can turn to your teenaged daughter, your soon-to-be ex-husband, your in-laws and your work friends, but your own mother can’t even give you a courtesy phone call when you are in the hospital. Or, say, maybe she sends some keepsake letters in a birthday card, so even on your birthday, you can be reminded what a disappointment you are and how rather than celebrate you, your mother would rather make your birthday about her.

I just want a mom. I just want a mom who can see who I am without constantly criticizing me, or emotionally blackmailing me, or making snide comments about how I might be living my life. When I was a kid, I idolized my mom. And there’s that little girl inside of me who still wants to.

She grew beautiful flowers. Has a beautiful smile. But I look back on my childhood, and I’ve survived so much and forgiven so much, and laughed off so many things… and to constantly have her blame me for everything that’s wrong with our relationship is just not fair.

Because in my experience as a mother, I want to be there, I want to help, and I would probably spam text my daughter if she ever fell out of contact.

But we’re all different people I guess.

Flirting with control

I have no idea what this blog post will say. I’m only writing it because I came home from work, took my blood pressure, swallowed my medication and made a cup of coffee… and wasn’t sure what I wanted to do this evening. But I knew I wanted to write. So here I am.

I titled it “flirting with control,” because I’m looking at my house and my list of phone calls I need to make (check with physical therapist, reschedule Ob/Gyn, schedule annual service and car inspection, see if I can get a rental car from the insurance company of the person who hit my car in February.) Thinking of the chores I need to do. And everything I want to achieve for the business…

And I realize, everyday I am merely flirting with the idea of having control of my own life.

My blood pressure was 115/73, which is excellently consistent. I have to say I had a few times today where I felt off– so I used the EKG function on my Apple Watch and hit the heart rate button periodically. It’s been two weeks since I had my last “high heart rate scare” and today I saw my heart rate jump from 90 (which was already on the high side for standing at my table at work) to 165 in one movement. Not gradual, just BAM, and back again. It did this at least twice. But the watch registered a 176 also around this time that I didn’t notice.

To be on the safe side, I took the voluntary time off offered for tomorrow.

I don’t feel bad. In fact, I feel 90-95% of myself. But I get tired easily, and I often get a weird sensation that I describe as lightheaded, but it’s more like my body internally swaying. And my ears have been ringing for months and my headaches are getting more frequent.

After hearing about my unfortunate experience at the cardiologist, I have been collecting opinions from people. Some requested, some not.

And among the solicited type of advice came this gem: “You might want to get a second opinion from a FEMALE cardiologist. Its known, researched, and documented that female patients have a greater chance of being untreated for cardiac concerns. Just consider.” That person even recommended a doctor, though by the time I got the name, I had already booked a doctor from my own research.

I don’t know if the average person realizes this, but with the modern computerized booking systems, most hospital networks will allow you to schedule appointments online, even with specialists you haven’t seen, because most physicians have an open scheduling block even if it is only a few appointments once a month.

So I researched female cardiologists affiliated with the hospital with which I routinely deal. I scanned their reviews and quickly discovered that the hospital has a women’s heart center and encourages, at least according to the web site, any woman with concerned to schedule an appointment.

And that’s what I did. I won’t see her until August, but by then all the other specialists will have run their tests and hopefully we will have more answers. And regardless, I want to sit with someone and review what has happened to me, what’s normal, what’s not and what of that is concerning. My current cardiologist doesn’t want to see me again for six months, and his schedule hasn’t been released that far out, so I may not even go back.

I told all of this to someone at work, and he reminded me of something he has said to me in the past. The Lehigh Valley sometimes lacks medical talent. And then he added, “and I suppose I can tell you that I always seek out female physicians.” And proceeded to explain that women have a different attention toward symptoms and how they fit together.

In the meantime, I also have a list of other professionals I want to see as I hash out my own plan for how to care for myself. I know I already mentioned a hospital-affiliated dietician, but I also want to talk to the clinical pharmacist at my doctor’s office because I don’t think I should be or need to be on some of these medications together.

Oh and I got a survey for the smug little doctor man. I gave him a 5/10. I wish I would have recorded my comments which went something like this: “I didn’t ask questions because I couldn’t put my finger on it but he seemed dismissive. I went home and read his notes and realized he had come to conclusions about my symptoms that he did not discuss with me and were based on assumptions made because of my congenital disability which contradicted the concerns of my entire care team. That was a shame as he was a charming man and his office is close to my home.”

Reflections on a Range Rover Runner

I drove to work this morning and got behind a black Range Rover covered with bumper stickers “13.1” and “26.2” and “Run.”

And I looked at the car and I thought, how white collar and/or affluent do you have to be to drive a Range Rover and run that far for a hobby? Now, if it is your hobby, I don’t mean any ill will. More power to you! Enjoy it! I applaud you!

But I think of my dad who spent much of my youth as a diesel mechanic, or I consider my mother-in-law growing up on a farm.

People aren’t meant to be sedentary and then run for a hobby. And the idea that people work in offices or as professionals is a modern construct, before that our lives were physical. We hunted, fished, farmed, foraged. Humanity as a species did not always have a WalMart. They had to make things, not buy them.

We hear all these talk about circadian rhythms, blue light, organic produce and carcinogens where in the past our ancestors worked in coal mines with canaries as the only safety equipment.

So when I get home from work after folding clothes in the Stitch Fix warehouse, my Apple Watch thinks I’ve walked 15,000 steps because that’s how much my arms move in a shift. I’m getting up before sunrise, going to the time clock and standing at a table for eight hours a day.

When I get home, it’s hard to drag myself to the gym. But I do it, because my body requires it. But run 26.2 miles? Never going to happen.

I don’t have the energy, the physical prowess or the financial resources to have that kind of free time.

Smug little doctor man

I might have to fire my cardiologist.

He’s personable and easy on the eyes, but he certainly had his decisions made without listening to what I had to say. And when I got home and read his notes… I don’t know if I can say I felt betrayed or even insulted. I knew what was happening while I was there. It was a gut reaction and I felt myself shutting down.

He said I was fine, my heart monitor was fine, and my EKG was fine, and then he asked if I had any more episodes. I asked for clarification on what he meant by episode and explained that as of last week my heart rate had calmed by about 20 beats per minute. And that I had two more unexplained episodes of lightheadedness that almost ended in falls.

I pointed out that I wrote everything down if he had any questions about my symptoms and also said that I bought an Apple Watch.

He didn’t seem interested in any of it, only in my episode of a-fib. And then he noticed that my primary care doctor had ordered a tilt table test. “That’s odd,” he said, looking at my record.

“He wants to rule out POTS,” I said.

He gave a little nose grunt of disapproval.

“Do you have any questions?” he asked.

Not that I was willing to ask. Based on how he seemed to be judging my primary care physician there was no way in hell I was asking questions of this man.

When I read his summary of our visit when I looked at my online chart, he blatantly called out my primary care physician for considering POTS and said my symptoms were not consistent with that, and blamed my falls on my poor balance.

I might have cerebral palsy, but I don’t have “poor” balance. It’s not “good” but it’s not “poor” and I have the physical therapy records to prove it. Actually, I was released from physical therapy today. When these episodes happen, I can feel that the problem is not my legs. So my heart looks fine, and I’m very happy about that, but I’m angry that he just attributed the whole stint in the hospital as caused by my poor balance. The night of the accident I had been showing off to my trainer Andrew how well I could stand on one leg.

When I read his notes I got even more upset, because he’s blaming my orthostatic hypotension on dehydration and makes it sound as if I don’t drink water. I said symptoms are worse on the weekend, probably because I don’t drink as much water. I drink about 60 ounces at work alone, which means on a typical weekday I drink about 80 hours of water, maybe 8 ounces of another beverage and 12 ounces of coffee. Subtract about 60 ounces water off that on Saturday and Sunday.

And he also says I drink more now, especially when my blood pressure is low, and what I said was that I keep an electrolyte powder by my bed and mix a portion of that to drink in the morning if my blood pressure drops, as suggested by my primary care physician.

So I looked at my ekg– my heart shows a normal sinus rhythm and arrhythmia.

I emailed my primary care doctor and said the cardiologist is not a match and after I get the next couple weeks of appointments done, I want to follow up with him (my PCP) to talk about my medications. And I’m also thinking of asking about a registered dietician and some nutritional resources.

Today my heart rate is up. My blood pressure is low. I have headaches and everything in my body hurts.

Working for the Weekend—The pluckiness of the modern author

Happy Monday everyone! I wanted to do a long blog post about Lehigh Valley Space Fest with Nan but I wore out of steam. I used up all the words in my brain on this post over on Parisian Phoenix.

And while it doesn’t detail the fun Nancy had playing with a meteorite and fondling a zero-G Smurf… it at least proves that I do do more than go to doctor appointments.

If you’re a reader, God bless you. You are the butter to the writer’s bread, the sustaining force whom we drive to please. But if you’re an author, …

The pluckiness of the modern author