Tag postural hypotension

The follow-up and the next fall

Angel Ackerman Leave a comment

Yesterday, I visited my primary care physician. He was thrilled because my blood pressure has stayed at 100-110/70 for the last six months. I am disappointed that my weight has not budged.

Around the last snow storm, I noticed my sinus troubles got so bad that only a day of Sudafed would stop my sneezing (see more here or via the publishing company’s Substack newsletter here) and that since then the mild lightheadness and congestion have not abated. And since I took a flying leap out the warehouse door March 1, 2023 and following that with stair acrobatics at home March 13, I had to ask my doctor– could my sinuses be contributing to my fall risk more than we realize?

So, he changed up my allergy medicine to move me from OTC remedies to prescription medication.

I also mentioned that my heart rate has been stable, even when I have no caffeine or overindulge in the stuff, and that salt has a strong effect on my heart and my weight. But I was no closer to keeping my heart rate under control first thing in the morning.

He asked me to tweak my beta blocker routine to take it before I get out of bed in the morning. And to be completely attentive to it at night. For a month, I am to take both half-pill doses as close to 7 o’clock as possible to see if that prevents my heart rate from jumping from 60 to 80 when I sit up, and then from having another jump from 80 to 100 when I stand. If that balances out my heart rate, he may move me to an extended release medication to maintain my heart rate. Especially since I have a small aneurysm in my brain.

The new allergy medicine he put me on– shifting me from Zyrtec and Flonase to prescription strength Claritin and Nasonex– was ready at my pharmacy by dinner time last night.

“It’s a preferred medication of your insurance,” my doctor said, “so it shouldn’t cost you too much.”

So, the teenager and I took the dog on a walk to CVS this morning where the generics of these two medications, for a one-month supply, cost $93. I know my Zyrtec and Flonase probably cost similar– but I never pay full-price. I use coupons and extra bucks and buy the generic, and on top of all that buy the twin pack and split it with my friend Nancy.

We walk home, and I don’t really complain about the price because I need to know if sinuses are increasing my fall risk and I want to know if I can reduce that risk so the investment is worth it.

On the way home, the dog was frolicking on a small hill, and she came trotting down to catch up with the teenager. She misjudged or maybe lost her footing and raced down the hill right at me, hit me in the legs and sent me flying. I landed on the sidewalk. My knee has a hearty scrape, my hands are sore, and my nervous system is done for the day.

What makes today a good day might change tomorrow

Angel Ackerman Leave a comment

This week presented many challenges. Monday I was hurting, probably from too much computer work during my 10-hour weekend editing sessions each day. I survived Monday, but barely, only to learn that Tuesday I would be moved to a different station in the Stitch Fix warehouse.

Change is never easy– but in this particular instance, as a person with a documented disability and doctor-derived medical accommodations, I struggle in my normal environment to perform at the same level as an ordinary employee. And that’s my job, to do the work, with a reasonable amount of help.

The main consideration used by management to determine assignments on the warehouse floor is table height. Is the work surface the appropriate height to match the ergonomic needs of the employee? In my case, my performance also relies on which side of the line I am on and who is “on support” that day. I work on “the B side” which does not mean I am not a radio song. It means the conveyance system that moves the fixes to the next stage of the process is on my left side.

I rely on my left side for balance. Therefore, to minimize potential issues with my hip and ensure my balance and stability, I need to work on the side where I turn to the left to put my boxes on the line.

My original table assignment for Tuesday was on the right, or the A side.

Requesting a B-assignment got me moved from line two to line four, which meant I would no longer have my regular support team. (That’s the role of the people who deliver work and supplies to those of us who fold the clothes.) I have been told that it’s my job to remind these folks of my medical needs. And they don’t always like that. So it makes me uncomfortable. Because in my view, it’s not my job to tell someone else how to do their job.

And to make matters more fun, it’s up to the individual to decide how to provide my accommodations. The deviations are small, but the impacts are major. The cart typically arrives with eight fixes on four shelves, with five to eight boxes lying horizontally on top of the cart. Most people move the boxes (I often take them) and pile the work from the bottom of the cart on the top. Some people even put the fixes from the two bottom shelves and place them in boxes on top.

I don’t even ask that pack slips be placed with them. I have myself trained to flip them to match the new order. Which confuses everyone but me.

This particular day, my support person, who I believe is a delight, so this is no reflection of who she is as a person, decided she would place the clothes around the boxes without moving the boxes at all. She tucked them all over the boxes. Which meant if I moved the cart to my station or reached for the boxes, the clothes fell on the floor. How does this help me? Keep in mind– I go through three carts an hour.

I eventually complained to a supervisor and said something like this:

“I know it’s too late now, as we’re closing, but there really should be a system in place where Stitch Fix defines what the accommodation is for the doctor’s orders, because it really shouldn’t rely on individuals who don’t understand the disability. And maybe it’s a violation of privacy, but those of use who need the extra attention should be arranged together so support automatically knows if we’re in that section, we have an accommodation and it would also cut down on people requesting accommodations when they haven’t done the paperwork.”

The supervisor said that was a great idea and lamented that I hadn’t mentioned it earlier. I didn’t mention it because it’s basic logic.

Somehow, I survive, and I make numbers. My body is so twisted I can feel that if I move wrong I’m going to pull a muscle in my lower back. But it’s okay because I have the chiropractor on Wednesday.

And then I get the table from hell on Wednesday. It’s the right height, right side, good support people. But it’s a front-of-the-line table, so I have to keep pushing the boxes toward the end. The fan keeps blowing my pack slips, which means I need to tuck them under my craft paper roll instead of on my laptop keyboard. But I keep forgetting, which means every cart I repeat chasing a paper, and tucking the others under my craft paper roll. My scanner keeps disconnecting from my computer. And if I need to go get a large box, which is common now as we are transitioning into winter clothes, I have to walk to the back of the line to get it.

These things add ten to thirty seconds to every fix. That’s 40 minutes over the course of the day. And I finished at 91% which is bad enough to get me a warning. And so I’m stressing, which tenses my muscles, and since my neurological condition already creates issues with my muscles not relaxing just makes everything worse.

And midday, the leaders got out an inflatable beach ball so every one could bounce it around to each other. That upset me more because I don’t have time to have fun. How dare they think I might be able to survive this and have fun?

Nicole Jensen of Back in Line Chiropractic aligned my lower body and stretched out my legs and I left her able to stand up straight and move my legs without stabbing pain.

This is where the difficult mental part of disability takes over. It’s so much easier to give in, to rest, to eat ice cream and watch TV and be done. But I knew my body needed to stretch and move in order to correct whatever issues had been caused by my misalignment and muscle tightness.

My brain and my muscles don’t have good conversations– so it seems like I can to manually perform a motion for a while to teach my body how to do it, even if that is reminding it how feet go or how a gait is supposed to work. That’s why I go to the gym. Not just so someone forces me to exercise, but also so someone can make sure I am using body parts correctly.

But I have to tell you, I dreaded going to the gym. I had been in pain all day. I wanted to take a hot shower and go to bed.

Andrew texted. He had a situation at work. Maybe the universe thought I needed a break. When Nicole works on me after such bad body pain, I’m often achy the next day.

Then Thursday went fine. Great even. But the pain crept back Friday, not nearly as bad but it took me most of my day to get my metrics at work to solid ground. And Friday night I went to the gym, and despite how I was feeling, I had fun and did well with some heavy weights.

I made some salmon and trendy smashed potatoes with vegan tzaziki sauce for dinner and the Teenager loved it. I fleshed out the writer’s proof for the erotica book. And went to bed feeling like I had been successful.

This morning I got up, discovered I had low blood pressure after I took my beta blocker (oops) and had a light breakfast– coffee with PB2 and cream, PowderVitamin Electrolyte Powder Plus in strawberry cucumber and these breakfast biscuits from Olyra. I thought they’d resemble a Reese’s peanut butter cup or a Tastykake Kandykake.

They were hard, dry and the peanut butter cream was minuscule and didn’t even moisten the cookie. Terrible. And I love their yogurt breakfast biscuits so how could this taste like someone managed to shape chocolate-flavored protein powder into a cookie?

Anyway, the moral of the story is: sometimes what you can achieve one day is much less than what you achieved on a different day.

Good news. The aneurysm is nothing to worry about.

Angel Ackerman Leave a comment

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.

Flirting with control

Angel Ackerman Leave a comment

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

Angel Ackerman Leave a comment

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.

Barbells and heart rates

Angel Ackerman Leave a comment

It happened again yesterday. A work colleague reminded me that she was old and 50, at which point I had to say, “well so am I.”

After some back and forth, it was determined that I am a year younger than her, as my 48th birthday is in less that three weeks and her 49th is in June.

I have so much to say, and so much on my mind, that the words overwhelm me and don’t emerge as they should. But, here is my attempt.

Let me just say– so it looks less like I am whining– that yesterday was probably the first day since late January that I did not feel my heart pounding in my chest. Even at the gym. The Apple Watch reports that even as Andrew had me standing on balance trainers while swinging the heavy ropes, my heart rate stayed at around 150 beats per minute.

Yesterday I also felt strong and steady walking around all day. My back and hip pain never got over a three, and dissipated as soon as I got home from work. I didn’t feel like I was swaying standing there at my table.

Which, if you are curious, the Apple Watch counts folding clothes as steps, especially when it’s the aerobic clothes folding we do at Stitch Fix. So, I’m now routinely getting 15,000+ steps a day. I know they are not steps, per se, but it is activity. And about five minutes a day of folding clothes the watch registers as exercise.

My blood pressure has consistently been about 98/54 upon waking, 125/80 most of the working day, and 115/70 in the evening. I keep an electrolyte beverage at my bedside (electrolyte powder plus if you are curious) and chug about six ounces before getting out of bed. I’d have more, as the doctor suggested a full 16 ounces, but I have noticed that I have a tendency toward incontinence these days. If I feel I need to use the restroom, I have to go right away or I might pee myself on the way to the bathroom. It’s happened at home several times that once I registered the sensation, I just can’t hold it until I reach the toilet. Not fun.

And my pinky still tingles at work, during exercise and during postural changes– or so I think. I’m trying to figure it out.

The tilt table test to rule out Postural Orthostatic Tachycardia Syndrome (POTS) is May 17. And my neurologist will be referring me to neurovascular for the aneurysm they found in my head on my CT scan. But good news, she said, is that she doesn’t think the aneurysm has anything to do with my symptoms.

My short term disability provided by my employer only provided two weeks pay of my one month leave, and it was only 66% of my wage at that. I’m still bickering with them over the last week, because they claim my doctor hasn’t sent appropriate notes to justify my last week. I know my doctor’s office faxed the forms twice and I sent screen shots of the office notes. Now the absence management company has switched my examiner.

This remains extra frustrating because my initial fall, on Stitch Fix property, happened March 1. I filed a claim at that point, and missed some working time because of the incident but no full days. I don’t think. They canceled that claim, and when I ended up in the hospital the evening of March 13, I had worked a full day that day so that meant my waiting week started March 14. All this bickering over $450.

In the meantime, my car insurance had been due on the day I ended up in the hospital and I ended up paying it from my hospital bed by credit card. Because I hadn’t anticipated being out of work mostly unpaid for a month, I had business and other household expenses, primarily groceries, on that card, with The Teenager’s unexpected car repairs, and a balance from the ceiling repair we had last year. By the end of April, I had $5,000 on my American Express. And not a dime in my checkbook or savings account.

I used my rest time during the weekend to research a personal loan. And I closed on that with my bank of 20+ years yesterday. I’ve been paying $300+ a month on credit card debt. This allows me to pay them off, have a bit of a cushion, and repay at a rate of 6%. That’s the one good thing about having a high credit score in a bad economy, it’s cheap and easy to borrow money. It certainly makes me uncomfortable to have “more debt” but I have to remind myself it’s the same amount of debt, just more manageable.

It’s a lot. It’s a lot to think about when you balance it all with the fact that I have a disability, work full-time, have a side business where many people depend on me, and I’m a mom. The jury is still out on whether whatever happened to be in March was a “single” event or whether now on top of everything else, I have a chronic condition.

Whatever it is, I’ll keep coming.