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.”

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.

The heart all-clear, but what about the orthostatic hypotension?

I am so sick of medical-related posts. I want to get back to the silliness I enjoy everyday, and straighten out the mess my finances are in, and get back to work before the mortgage is due. But there’s so many questions I have– and have to admit– that idea of taking another fall like my last one is terrifying.

My normal, stumble-over-my-own-feet kind of falls are scary enough. But these… the sensation of suddenly being in the air with no tactile connection to the mechanics of the fall… are different.

The brain fog is still heavy, and I think most of what I am struggling with now are side effects from the beta blocker, or potentially hormonal, and I thought I had a TSH check today at my local quest. It was part of why I didn’t go back to work today, I wanted to discuss the heart monitor, my TSH levels and my orthostatic hypotension with my doctor. (Orthostatic hypotension means blood pressure that drops too low when you recline or lie down.)

I’m going to tell the story a little backwards…

Tuesday Morning

I originally set my alarm for 4:45 a.m. I planned for today to be a practice wake-up day for work tomorrow and I have a 6:40 a.m. appointment for a TSH blood draw at Quest. Then, I would hopefully discuss with my doctor today the state of my orthostatic hypotension (confirming that it is orthostatic hypotension and that I am not at an increased risk of falling since my work involves standing all day), the results of the Zio heart monitor and my TSH levels.

The cardiologist sent his report last night — the Zio patch heart monitor did not detect any afib, and he would like to keep me on the beta blocker as long as I tolerate it.

And again, if I’m honest, I think the beta blocker is causing the orthostatic hypotension, but in general, I think it has helped calm my system down a lot.

I woke at 2 a.m. I’ve been drinking electrolyte water in the evening and in the morning as suggested by my doctor, which meant it was 2 a.m. and I really had to use the bathroom. But, being the neurotic little patient I am, I had to take my blood pressure to see what happened when I moved around in the middle of the night.

When I woke up, my blood pressure was 96/56, when I arrived in the bathroom it was 113/80, after I relieved myself it was 118/74, and when I woke up at 5:45 a.m., it was 100/56. I had changed my alarm in the middle of the night, forgetting I wanted to take a shower and do stuff. When I realized in the Quest parking lot that my appointment was for tomorrow and not today, my blood pressure was 111/73. So I came home, made coffee, had breakfast (see the brioche bagel at the end of this post) and my blood pressure dropped to 103/64 by 7:30 a.m.

I am trying to incorporate more of my stretches into my daily activities, especially when transitioning from standing to sitting and vice versa. My physical therapy is going very well, but I feel bad that I don’t keep up with it nearly enough at home, but I have so much on my mind with my hand, lingering bruising from the fall which I can’t believe it’s been a month, my blood pressure, and lightheadedness.

Luckily, I try to get to the gym between physical therapy appointments and I try to do balance exercises and finger stretches as part of my day-to-day.

Some random fun food stuff

Yesterday, the Teenager gave me $100 and asked if I could do her grocery shopping for her. Because it’s Easter week, a lot of her pet sitting clients need her. She has almost 20 visits a day most days. I went to Grocery Outlet and bought things I knew she would eat and from her list. For breakfast: muffins, Morningstar breakfast patties, Danish banana pancake balls (which are so good), brioche bagels, orange-pineapple juice, Cookie Crisp, milk. For lunch: salami rounds from Hillshire, snack packs of cheese and meat, precooked bacon, pepperoni sticks. For snacks: salad fixings, bananas, clementines, baby carrots, hummus, diet sodas, Dr. Pepper, and sweet tea. For quick dinners: ramen broth, spaghetti, pasta, red sauce, sliced black olives. My total came to $84. Teenager said she might send me grocery shopping all the time.

The banana pancakes are very good in the air fryer.

I had one of the brioche bagels. They are fiendishly soft and freakishly just a brioche with a hole in the middle.