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.”

Have you ever had brain surgery before?

Today I received a paycheck. I haven’t had one of those in two months. I have been keeping my house afloat on $900 in disability payments (and denied the last $450 I was entitled to because the absence management company keeps losing the fax), savings and credit cards.

In two hours I will be leaving to drive over to my hand specialist/orthopedic surgeon about my sprained pinky. Despite the therapy, despite the time that has elapsed, it’s still tender, doesn’t bend all the way and has a rather distorted knuckle. Monday is my first appointment with my cardiologist.

My heart rate has been normal most of this week. But yesterday was a little rough– heart rate variations and fatigue throughout the day. I had a lot of muscular pain in my right hip, which extended into my back and quad, and worked overtime at the Bizzy Hizzy. So, I ate a lot of snacks, took ibuprofen, drank a lot of water, and ate my sorrow in the form of about 2,000 calories of burger, onion rings and blizzard at Dairy Queen.

My boss asked me if anything had changed to cause my discomfort. And as usual, Angel hadn’t changed one thing but several. I had worked hard the day before and perhaps I overdid it, because I had been behind in my numbers. Then, I went to the chiropractor, and when she touched me, it felt different. She often has to do things to my legs I don’t understand, but that right hip often feels like my pelvic bone is at the wrong angle. And when she touched it, the way she does every week, it burned instead of ached.

After the chiropractor, I went to the gym. And Andrew subjected me to leg-and-core day. Because he loves me.

I had a nice dinner after that of kale, potatoes and chicken. And I was in bed by 8 p.m. (Don’t judge me! I wake at 4 a.m.) At a minute or two before 9, I had to use the bathroom. And these days, I can’t take my chances. For some reason, I can’t always hold it. I have some retrolisthesis, and there is some theorizing that it might press on a nerve occasionally that interrupts that signal.

I stumbled from my bed, entered the bathroom, and next thing I knew I was kissing my ceramic tile and my Apple Watch was having a tantrum on my wrist. The Teenager ran up the stairs.

“Mom, are you okay?”

The shower shelf had started to fall off the wall earlier in the day. I had decided to be proactive and I removed it. I set it against the bathroom wall to rehang. In my evening stupor, I did not have my glasses on. The pale silver shelf blended in with the beige tile and I stepped right on the damn thing.

“Mom?” the Teenager said. “Why is your watch freaking out?”

Apple Fall Detection has received some mixed reviews. But this time it nailed it. My watch progressively buzzed until I looked at the screen and responded to it.

“It looks like you have taken a hard fall.”

And there were two options. “I’m okay.” And a big red emergency button. I hit “I’m okay.”

That’s how I went from 50 days without a fall to one. Sigh.

In the last of the medical update, I’ve been receiving a lot of repeated phone calls that never leave messages. So, I answered one yesterday that looked like an important phone number. And it was 11:22, so close enough to work lunch that I could step off the floor if I needed to,

It was the neurosurgeon. My neurologist had told me she was going to refer me to neurovascular to have my aneurysm checked. Apparently, they call you and ask your symptoms so the doctor can decide if your head is going to explode and if he needs to see you tomorrow versus in a couple months. So, I answered her questions.

“Have you ever had brain surgery before?”

Oh, I don’t intend to have brain surgery at all, I think. “No.”

“Do you have any allergies to the dye used in MRIs or CTs?”

“No,” I said. “I just had my first CT with contrast and tolerated the dye well. But I have a tooth implant, so an MRI might be out of the question.”

(Which is a shame as I would love to see my brain via an fMRI.)

Questions about my symptoms. Headaches? Yes. Vision trouble? Not really. Weak arms? No. But I have a tingling pinky no one can explain. Lightheadedness or dizziness? Yes, but we attributed that to low blood pressure and side effects of the beta blocker. Slurring words? Not slurring, but completely losing. But I have a history of anemia. Incontinence? Lately, yes.

“Do you have difficulty walking?”

I chuckled. “That’s loaded question. I have cerebral palsy.”

“Oh, let me write that down for the doctor.”

“Spastic diplegia if you want to be specific,” I told her.

“When did your symptoms start?”

“Well…”

I told her they found the aneurysm after a CT scan meant to check if blood wasn’t getting to my brain properly after my second fall in March landed me in the hospital. And here we are.

I need this weekend. Badly. And I’ll be taking Nan, my blind friend the space nerd, to Lehigh Valley Space Fest on Sunday.

Barbells and heart rates

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.

Scary words

I almost didn’t write this one. It’s been a long day, and I’m tired, and achy, and cranky. This morning started off-kilter when I couldn’t find my car keys (they were in my pants pocket in the dirty laundry basket), had left my sweatshirt in the car and it was cold, and I should have had more breakfast.

My Apple Watch is doing its job– and it does seem to track significant leaps in heart beat when I rise, 30-35 beats per minute, but I don’t know how long that has to last to qualify as POTS. (And I have a note to call and schedule the tilt table test Tuesday afternoon.) Right now, I am just collecting data. And those numbers tell me when to give my body a minute to right itself. Regardless of what my diagnosis is.

When I got to work, a colleague told me she called the cat rescue and the person she spoke with didn’t know anyone with my name. That was certainly odd.

I started out strong, as I often do in the morning, preparing 8-9 fixes every half hour. But by first break my hip started acting up, which made the day harder and I fell behind. By ONE fix. But of course break is 10 minutes, so then it was four fixes. But by lunch I was only half a fix behind.

I didn’t have many calories with lunch. The portion of hearty vegan barley soup I had left was smaller than I expected. But by second break I was officially at the company numbers, which meant I’d be a little behind when I returned. But I had work that was easier for me, so I was confident that despite my inability to bend, I’d get the job done.

But then I saw a notification from my medical portal. My CT results were in.

Normal. Normal. Normal. That’s what I saw as I skimmed the report. Normal. Normal. Then… “suspected 2 mm laterally directed left paraophthalmic ICA aneurysm. Recommended follow-up with neurovascular service.”I freaked out internally. Started shaking a bit. I was prepared for a lot of things but an aneurysm never entered my mind. Pun intended. Note: I was reading this at work, and I only get ten minute breaks so I wasn’t reading for comprehension. Over the course of the afternoon, I realized this was small. And I calmed down fairly quickly. So this was about surprise. And I told my friends, “Well, now we wait. The faster I get a phone call from the doctor, the worse the news is, right?”

The nerves gave me the energy to finish at my target number to make my employer happy.

I then headed to physical therapy, where I was honest with my physical therapist about everything. And before we got started he fixed my back and hip. Those people are incredible. I noticed while doing my exercises– the clamshells were much harder and the stability exercises… I was falling backwards instead of forward. When I stand on one leg I normally fall forward. I almost fell right off the machine, and backward, which would have been terrible as the physical therapist was with another patient and no one had a gait belt on me.

But remember what I said about lunch? I was starving. And I seemed to be recreating the same scenario as some of my other falls– busy day, discomfort, hunger… if I went home and ate a big meal (which diverts blood into digestion), would I fall?

I went home and The Teenager promised me a big dinner of chicken parm, cheesy garlic bread and brussel sprouts. I warned her that large meals might be part of the fall formula, so she followed me to my room after we ate. She stated that she didn’t like the way I was wobbling.

Good news is I haven’t had any low blood pressure since I ate that entire Little Caesars pizza Saturday night. Bad news is, the binge made me regain the five pounds I lost.

But at least in my dreams last night I had a good time– as I was apparently dating a man with dark hair and a Tesla. I very much enjoyed his company, and he appeared to enjoy mine. This wasn’t our first date, but it was definitely a new relationship.

The sink hole, the medical stuff and the backwards rune

Me, in a chair identical to the one the dog ate, waiting at the hospital

I feel like garbage: exhausted, headachy, ears ringing, like I might come down with some horrible flu at any moment. I just got home from my CT scans, one with contrast, to double check that there is nothing interfering with blood flow between my brain and my heart. And upon attending a follow-up with one of my doctor’s residents today, they want to do a tilt table test to rule out POTS.

Awesome.

I just drank about 16 ounces of water and wolfed down an Abe’s Mom’s Gluten Free coffee cake muffin. I’m pretty sure it was nutritionally void but it tasted amazing. It tasted like the whole thing was made of coffee cake crumb topping.

Work this week has been really good– except for the fact that I was in intense pain Monday, and then I nailed it Tuesday (and discovered the extra energy came from my blood pressure being higher than normal), and then I hurt on Wednesday from overdoing it Tuesday.

I came home from work yesterday, went to the chiropractor, canceled my session at the gym and was asleep by 7 p.m. and I slept until 5 a.m.

Speaking of work… two bits of news from the Bizzy Hizzy. My favorite sinkhole opened again and it got filled again this week. And they were giving out random PVC pipe. Of course, the teenager wanted one.

I used the bathroom at the doctor’s office and I noticed a strange pattern on my favorite jean jacket. It looks like a rune. So, I posted it on social media. And it looks like a potential bad omen. It looks like Raido, “the journey,” backwards.

The mysteries of the week: work, physical therapy, a killer workout and an almost fall

Author’s note: It’s my normal bedtime. I’ve been up since 4 a.m. I’m exhausted and my blood pressure has fallen to 103/58 while texting an update to my friend M. But if this is a rambling mess– not my fault.

First Three Days Back

That went fast. I truly love my work colleagues. I love our diversity and how we care about each other. I can honestly say that except for a certain someone I have managed to find the bright side of every person I have met in the warehouse. I hit 100% every day, if we got non-production time for the nine minute emergency meeting about dirty panties. Don’t ask. We all know people are disgusting.

It felt great to move and do again, and I took my blood pressure cuff to work so I could keep an eye on changes in my blood pressure. Standing and working and probably the heat in the warehouse do make my blood pressure rise by the end of the day, 128/87 today, 126/89 yesterday and 121/86 Wednesday at 3 p.m.

But by the time I got home and sat down a bit, that went down.

I have been super careful about what I eat, drinking water, consuming caffeine and sugar, taking my various medicines to my muscle relaxers to my anti-histamines.

My walk has been smooth, and today, my body didn’t even hurt like it often does after work.

Physical Therapy

Even with my blood pressure doing crazy things and having given my all at work, I went to physical therapy yesterday afternoon. My physical therapist pushed me, and it wasn’t easy with my right hip aching and being so fatigued. Because I’ve been doing so well he increased the intensity of my exercises, and I still did really well.

And the youngish, teenish girl at physical therapy beside me saw me on the balance machine and asked, “when do I get to do the fun stuff?”

To which her therapist replied, “Once you have the strength.”

My physical therapist let me go without the last new exercise he was concocting because I looked tired. Tired, I thought, tired??? I was beat. Exhausted. Hurting.

Steak Tacos

I’m not a big meat eater. And I was so completely wiped I was really tempted to have a bowl of raisin bran for dinner and call it a day. But I forced myself to stagger into the kitchen and slowly, but surely, brown and season some blackened sirloin and roast some cherry tomatoes for tacos. I sliced some jalapeno cheddar. Heated the corn tortillas by covering the meat with them. And then I stuffed the tomatoes, cheese and meat into the tortilla and put it all in the air fryer, hoping to make the tortillas crispy and the cheese melty.

(Author’s note, again: Speaking of cheese, The Teenager is driving to the Humane Society of Harrisburg tomorrow to meet a bonded pair of rats she has been approved to adopt. They are named Cheetos and Tostito– I suggested keeping the names and referring to Tostito as Toast, to which The Teen replied, “and Cheetos could be cheese!”)

When I took the tacos out of the air fryer, I arranged them nicely on a plate, arranged some potatoes beside them. I topped them with lettuce, herb cream cheese (we didn’t have sour cream) and my favorite fresh salsa. I went to carry them to the table and I tilted the plate and the tacos slid off.

To the floor.

Our very dirty kitchen floor.

I collapsed beside the pieces of my tacos. Then, I moved aside and told the dog to go ahead.

I wanted to cry. I reassembled a couple more tacos, but no air fryer, no herb cream cheese, and everything was cold.

Tonight’s Workout

Andrew at Apex Training worked me hard tonight. We did upper body strength, some cardio and some balance and stability. He even mentioned he order new tiny balance trainer/balls for individual feet because “we might need them.” I love Andrew’s honest desire not only to keep me working out– which is really what I hired a trainer for, to make sure someone made me workout and monitored my form so that I did not hurt myself– but he also works to help me improve my health in addition to my fitness.

All of the guys at Apex Training have been so good to me, and they have been instrumental in keeping me motivated, sane, and committed to overcoming all this crap that keeps coming my way. I don’t bounce back quite like I did when I was younger, and I am so grateful to have these gentlemen on my team. I might not be as athletic as I really would love to be, but Andrew has helped me become the best version of myself I can be.

The Evening and The Almost Fall

The Teenager made “radiator pasta” — radiatori — and mixed in some black olives, some sausage, some mozzarella, and some marinated roasted peppers. I ate too much, but damn did it taste good. We ate about 7 p.m. I took my medicine at 6:20 p.m.-ish. About 7:30 p.m., we went upstairs. I had my hands full and I felt myself sway. But I did not fall. Went about my business, but did check my blood pressure. It was dropping. I hung out with The Teenager and my cat Fog in her bedroom, and while I was walking around her room, I started swaying more insistently. I took my blood pressure again. It had dropped even more.

I showered. Another drop.

I drank my electrolyte drink. My blood pressure raised by five points, top and bottom, but an hour later, by the time I wrote this, it dropped again.

And my pinky has been tingling like crazy.

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.

The Return-to-Work Dilemma

I’ll try to keep this brief, as it is late, and I don’t want to disrupt my sleep schedule. Okay, so it’s 9:30 p.m., but I do plan on returning to work this week so I can’t be partying like a hooligan. I was supposed to return-to-work tomorrow, but I have been having issues this weekend, similar to the issues I had on Wednesday.

I woke up lightheaded– and it took me more than TWO HOURS to drag my body out of bed. I also took my blood pressure when changing positions since the doctor wondered if I might be experiencing postural hypertension. I reviewed my doctor’s notes from Wednesday’s visit, and he said to contact him if my systolic blood pressure fell below 110. It’s been below 110 most of the weekend.

the cake is a bunny

I felt almost drunk. That’s the only way I can describe it.

So I said “F**k it,” and made coffee and had cake for breakfast, thinking maybe I didn’t eat enough with my 6 a.m. meds.

My blood pressure went lower.

I called out sick for tomorrow and maybe Tuesday. I want to talk to my doctor about these numbers first. And I have a blood test Tuesday that I also might want to know the result of before we end this leave.

The Teenager channeled the 90s in her attire today: Vans, fishnets, distressed denim shorts, a crop top and a flannel. I wondered if she should have been part of my college friend group instead of my offspring.

So I did a lot of computer work– which went slowly because my brain fog was so thick when I paused to make toast and eggs (to balance out the cake), I started doing dishes, forgot to turn on the water, struggled with how to make the hot water work, and then almost forgot the toast in the Cuisinart air fryer/toaster oven.

Luckily my cleaned, rearranged bedroom is cozy. So I spent quite a bit of time up there– until the dog spooked the cats and trampled poor old Opie. Louise meanwhile protected him. And apparently, she thinks the air purifier is for her benefit.

I just had to hop on and point out that not knowing what is going on doesn’t bother me, going for random tests doesn’t bother me, but not knowing when my symptoms are dangerous is terrifying. Because these falls seem like they should be easy to prevent. Instead my own body wants to catapult me to the floor.

I feel silly calling out of work. I worry, as anyone does, about money. I don’t want to be “the boy who cried ‘wolf,'” but I don’t want to get hurt worse next time. Because these are getting more dramatic.

Meanwhile, another item my doctor suggested was drinking electrolyte beverages throughout the night. I have some packets of Propel, which I might move to my purse for travel or work. I also bought PowerVitamin Electrolyte Power Plus supplement. I got raspberry, but now I really want lemonade and watermelon. I have been so hydrated even after taking a multi or overnight my urine doesn’t turn dark.

I keep the powder in my bedroom and mix it in the evening into my Sigg metal water bottle with the metal screw on top (from my bicycle). Minimizes threat of spills.

And speaking of my room (for the third time), we removed my old rug (I’m going to need a new one or to refinish my hardwood floors. The teen cut it into strips and placed them in the trash. They look very cool.

Final days of medical leave…

The reduced dosage of my beta blocker has put more pep in my step and so far improved my symptoms of feeling quasi-lightheaded. And I can get out of bed without sleeping 10 hours a night!

Yesterday was a magnificent day. The Teenager and I went to her grandmother’s for an impromptu early Easter dinner and pie baking lesson. Grammy’s crust is 1 cup flour, 1/2 cup shortening and 1/4 cup water.

We brought the dog and invited Southern Candy to have dinner with us, since she had texted that she missed me and I had produce scraps for the guinea pigs.

Southern Candy told me she had regrets about accepting the invitation because she doesn’t “know these people” but I assured her it would be no problems, she’d have fun and there would be pie. Prune custard to be exact.

And Southern Candy told me she doesn’t like custard. I told her she should try it, and if she didn’t like it, she could slip it onto my plate.

Southern Candy loved Grammy’s decorating style, her cooking and our free-flowing conversation. And then she was the first person at the table to reply when Grammy asked how the pie turned out.

“I’ll tell you,” Southern Candy said. “I don’t even like custard but this pie is delicious!”

Grammy’s pie does that to people.

Grammy tried to make me memorize the custard recipe: 4 eggs, 1 can sweetened condensed milk, 1 regular can milk, and corn starch. I forgot the exact measurement.

Meanwhile today I deep-cleaned my room. I only got it 75% done, but it gave me a chance to do sustained work before returning to the warehouse Monday. Perhaps in the future I will do a blog entry on family books. I have my travel diary, my great-grandmother’s little brother’s copy of Walden, my great-grandmother’s Aunt Tilly’s scrapbook and family notes, my great-grandmother’s journal from when she was 20, some old prayer books and hymnals, and my grandfather’s scrapbook of his time on the Queen Mary during World War II, which has Bob Hope’s autograph in it.

And I got the results of my Zio patch — but the cardiologist has not reviewed them yet.