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.

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.

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.