Colonoscopy

Yesterday I had a colonoscopy, which means that I went 36 hours without food and experienced my first bowel prep. As with many things, I approached it with the same curiosity I would other aspects of life. Like how long does it really take to clean one’s colon? How does it feel to fast for an extended period of time? Can I find a broth or a gelatin dessert I like?

I’m not a big meat eater, and was vegetarian for eight years before my daughter’s birth. So the clear liquids diet seemed abhorrent to me, and the fact that they asked you to avoid nuts, seeds, whole grains and vegetables and fruits with skin for five days also troubled me.

The directions for the prep said I needed a 64-ounce bottle of Gatorade, but not in red, orange or purple as those colors could look like blood in the colon. I didn’t know if blue were okay. I looked at all the flavors in ever store and it looked like yellow was the only color that was safe. Except Gatorade is gross. And it’s hard to find a 64-ounce bottle of Gatorade, so I had to hit the grocery stores. That’s a LOT of Gatorade.

I told myself– find a small bottle of a flavor that might work and taste test the Gatorade. But even then I could not do it.

I looked at this logically. The whole point of the Gatorade is to suspend the Miralax powder into a liquid and to offer the body electrolytes so you don’t end up horribly dehydrated. Gatorade is not the only electrolyte drink out there. There’s also Propel, G2 (okay so that’s just diet Gatorade), and high-end products like Liquid IV. I’ve been down this rabbit hole before with research when my primary care provider suggested I drink more electrolytes to treat my orthostatic hypotension. I already had a favorite.

(Here’s an old blog entry about the cardiologist I now refuse to see who thought he knew better than my primary care provider. Smug little doctor man. And here’s another that mentions electrolytes.)

I ordered myself some of my favorite electrolyte powder (Powder Vitamin Plus), in lemonade, unflavored and ginseng green tea. No colors.

As for clear liquid diet… I made chicken stock and froze it. But, I don’t like chicken broth and I could not convince myself to thaw it out and drink it. I found some gelatin that expired in 2022 from when I promised I would make Eva finger JellO, but I couldn’t find the JellO. Eva also brought home a bottle of Sprite.

I used the Sprite and a random can of Beetlejuice spiced apple soda from Fanta to make one batch of finger JellO but the color of the soda was bright green and I expected it to be golden. I also made a batch with white grape-strawberry juice (and that was diet).

Saturday morning I had a big salad, removing all the items from the “avoid list.” Then I had a decent dinner, and a few homemade Christmas cookies. Lately, if I have more than three Christmas cookies, the sugar makes my belly feel wonky and this night was no exception. I stopped eating at 6:30 Saturday night (and didn’t eat solid food again until 10 a.m. Monday).

On Sunday morning, I made some electrolyte water and a hot ginger drink. Midmorning I made black coffee and laced it with a little chocolate chip cookie dough Torani syrup. For lunch, I had a heap of finger JellO and a small cup of vegan soy ramen broth. In early afternoon, I drank a cherry Coke zero.

I took my first set of laxative pills at 2 p.m. and an hour later, well you can imagine the results. I already had no stool left in my colon, but as most of my intake had been brown liquid…

At that point, I filled a glass jug with 64 ounces water, and a scoop of lemonade electrolyte powder and a half scoop of the ginseng powder. I shook and started to add the miralax powder. Except it didn’t fit. Even with me stirring with a long spoon as I added it slowly.

I poured it all into the blender, which resulted in about 72 ounces of final mixture.

I put it into the fridge, with the overflow in a mason jar so that I could track how much I was drinking.

At 6 p.m., I started drinking. At first, it tasted good. The directions said to drink half. Now, at this point, it already looked like my colon was clean. And I was supposed to drink it in about an hour. A glass every ten to fifteen minutes. I managed the amount suggested in an hour and twenty minutes. By the end, I never wanted to see the mixture again.

The final set of laxatives were at 8 p.m. I went to bed about 8:45 p.m., but my lingering cough kept me up, and every time I coughed I had to use the bathroom. I finally dozed off at midnight, only to be scared awake by my alarm at 3:45 a.m.

My procedure was scheduled for 9 a.m. and the directions said to finish the prep mixture four hours before the procedure. I went downstairs and poured a glass, drinking while I watched the Apple TV program Trying. I made it through almost two glasses. Then the drink started to gag me. And I used the bathroom and saw that my waste was still as clear as my urine so I returned to bed.

Around 6:30 a.m. I woke again and took a shower. Checked my blood pressure and my weight. Blood pressure up, weight down by 3 pounds.

Eva took me to the hospital at 8. They had asked me to arrive by 8:15 a.m. Now, I schedule a lot of these procedures at St. Luke’s Easton Campus as it is about 600 steps from my house. It’s usually empty, and the doctors and medical professionals there always seem to take good care of me. I used the self-check-in kiosk and went up to the Lotus waiting room.

That waiting room is full of the chairs that I love. We had a teal chair that we called “the throne” that I bought myself when I found it on clearance. I loved that chair, but in its first few months of owning that chair, we got a puppy who ate the chair. We tried several times to fix it, but she repeatedly ate the chair until there was nothing left. For a while, we took the legs off and set it on the floor with a slipcover over it and just gave it to the dog, but eventually, we gave up and threw it away. Which broke my heart. Because she also ate holes in my couch.

When I ended up in the ER for stitches in March 2023, after the fall that left the scar under my lip, I noticed the Lotus waiting room was FULL of my chair. Half of them in the color I had purchased, half in St. Luke’s blue. I had been admitted to an upper floor, perhaps the third. I looked down upon the chairs as I headed for the door.

It’s an ugly waiting room with a collection of my chairs.

They took me back to the unit at 8:40. Eva had to leave to feed some clients breakfast and the nurse told her to come back to this waiting room. The unit looked the emergency room from every television medical drama made in the last thirty years. There was another person there getting prepped for something. And maintenance men changing the lights which technically put them at an angle where they could see through all the privacy curtains from above. Not that I care.

Two nurses started prepping me and the doctor and the anesthesiologist lined up for my consent and the consent of the person next to me. The whole process was a very efficient assembly line. I mentioned that during my prep all I could think about was saltines. And the staff laughed and said they could handle that. The nurses took one look at my tiny veins and I think they panicked. They got a third nurse specifically to start my IV.

That IV was beautiful.

She was like an IV angel.

Normally IVs are a tumultuous experience for me. When I had my tilt table test, the man who administered that IV dug around under my flesh for what felt like an eternity and left bruises all over my hand and arm from his failed attempts.

I have never had blood draws as smooth as what this nurse did yesterday. I included a picture: If you see the three dots on the top side of the frame in the middle of the edge of my hand and think of them as Orion’s belt (they are from an old cat scratch) and travel to the middle of my hand slightly to the left, you will see a tiny pin prick– and not the one between the two lines on my wrist– that’s where my IV was. There is no bruising. At all. I had an IV in this hand and there isn’t a single piece of evidence that it was there!

As the placed an oxygen mask over my face and told me to turn to my side, someone else gave me an extra pillow concerned for my comfort. My last thought as I watched the nurse or whomever finish pushing the plunger on my medicine was “Why do I need to be comfortable? I’ll be unconscious.”

It was 9:20 when I woke to a small bottle of water and a pile of saltines. I texted Eva and she was almost to the hospital. The doctor told me he did find and remove a polyp. And I was home by 10 a.m. And the saltines were delicious.

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 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.