Let’s get the holiday weekend started

Last night, after the representative from Susquehanna Service Dogs left, The Teenager and I went to Taco Bell because it was late and I was famished. Despite eating my meal and half of the teenagers– somehow I woke this morning extremely lightheaded and with a blood pressure of 110/60. The issue did not resolve until 5 hours later.

When we settled into the house last night, I noticed a wrapper on the floor.

“Hey, when did you get Nutter Butters?” I asked the Teenager.

Apparently, the dog had stolen them and eaten most of the pack. The dog just looked at us guiltily and wagged her tail.

And we had bought her a cheesy roll at Taco Bell.

I told some leads and supervisors about my service dog approval at work today and then when those closest to me had heard the news from me, I sent an official email.

It’s not my most eloquent work, because I’m utterly exhausted. It says, “I have been placed on the list for a service dog. It’s about a three year wait because they raise a puppy with my input for me. I don’t know what the next three years will bring— but regardless of whether I still work here or move on, I would like to initiate a conversation about whether a service dog would be considered a reasonable accommodation. Legally, it is considered reasonable if it helps me with my disability while at work, does not put any person or company interest in danger, and if the dog would be safe and not exposed to danger for its own welfare. The dog could help prevent falls and help me get clothes and other items out of the cart and off the floor.

We have a couple years to pursue this conversation and I have 2-3 years to raise the $5,000 to pay for the dog. So to have that investment pay off, I want to bring the dog to work.Also I am working with Susquehanna Service Dogs which is a very reputable and supportive program.”

One of the other people at work asked me what I would name the dog. I pointed out that I think financial donors get to name the puppies and so once I met my puppy and learned its name I would probably develop a nickname for it. He wants to know the potential nicknames.

I haven’t named a dog since the late 1970s. Preschooler me named our Old English sheep dog mutt “Cheezie” because she liked cheese.

And a local professional offered me a discount on his services so that I could use the extra funds to put aside for my service dog. That was super kind, and just goes to show that when you walk in the world with kindness and try to support those who support your community, that the karma comes back.

I came home from work and The Teenager had planted my flower from Southern Candy, exactly as I envisioned it.

I did some work for the publishing company, drank a cup of coffee and headed to the gym since I missed Wednesday having fallen asleep at 6 p.m. Andrew promised to go easy on me, because lately my blood pressure is high, my heart rate is low, and my blood oxygen keeps dipping to 94%.

I had a great workout, and even made it home without a fall or incident.

I shared my basic granola formula with Andrew, made salmon and couscous for dinner, and finished the gummy bears with The Teenager.

Being that it’s Friday night, I’m up a little late as The Teenager and I were talking about service dog gear, Gunnar kennels, and ADA service dog rule cards.

Then I came up to take my shower and Opie shot out of my room and Louise followed him. Louise is the tripod foster from Feline Urban Rescue and Rehab scheduled for adoption June 10. She hasn’t voluntarily left my room since I worked second shift. When the house was quiet at 1 a.m. she would normally follow me to the bathroom.

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 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.