Peripheral Neuropathy 12/24/2020

Merry Christmas!

It’s 10:48 pm on Christmas Eve and I’m going through a neuropathy attack. It started after dinner. I was just sitting in the dining room looking at Reddit on my phone when the top of my left big toe started hurting a bit. Over time, the pain became more and more intense. I took two Tylenol and tried to sleep but I had taken two naps today already so I just tossed and turned in bed for 30 minutes while my toe kept hurting.

The randomness of the pain makes it a lot worse. Even after enduring the pain for years, I still don’t know what triggers it. Sometimes it starts while I’ still in bed, other times when I’m just sitting around. I’ve measure my blood pressure and blood glucose levels but there is no correlation. Maybe it has to do with blood toxicity or electrolyte imbalance? Also, the pain point seems to be random as well. Sometimes it’s the left foot, other times it’s the right. There is no rhyme or reason to it. And once it starts, nothing seems to interrupt the pain attacks or makes it dissipate. I would feel better saner if I could understand what is happening.

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Ouch! The pain is getting worse and worse. Sometimes there is a lull in the attack and you think maybe it over, then a huge spike of pain hits you. Again, there does not seem to be a pattern at all… completely random.

I’ve said this before but this time I really think that the overall numbness in my feet is also getting worse. Since peripheral neuropathy is typically related to diabetes, I’m not sure why the numbness is not stabilizing. If you believe the A1C numbers, my blood sugar has been under control for the past several years. Is there a lag in neuropathy progress as related to diabetes? Maybe there is a certain level of nerve damage that is self-propagating? When I think back to when I first started dialysis, I don’t remember noticing the numbness in my feet. These days, that’s all I feel when sitting on the dialysis chair, except when the needles are slightly off target and is hurting as well.

I like to think that if nothing else, I’ve built up a tolerance to pain over the past several years with peripheral neuropathy pain, peritoneal dialysis drain pain, dialysis dehydration muscle cramps pain, fistula needle pain, chest pain from bypass surgery, etc. I’m sure there will be more with the kidney transplant, if it ever happens.

Sad News

Just confirmed an ex-coworker has terminal brain tumor and has ~18 months to live. He started as a MBA intern and was hired as a senior analyst. He was then promoted almost every year until he became my manager. I spoke to our CFO at the time and decided to switch roles and eventually leave the company. All that is ancient history now since almost everyone I know has left that company anyway.

Again, it puts life into perspective. Terminal cancer is so sudden and brutal, whereas dialysis can sustain the patient for decades sometimes. I believe he is married and has one child.

Orange County COVID-19 Update

Charts are from https://occovid.com/.

What a huge mess. A few weeks ago, I was hoping that the recent increase in cases would taper off. Nope. It’s gotten a lot worse than the initial case spike in April, in both case count and hospitalizations.

It’s pretty evident that there is a huge problem. I don’t know where this is coming from. Everyone I see are still wearing masks, but I really don’t go anywhere other than dialysis. Are people partying it up without worrying about the virus? I would like to see any additional data that provides more detail on where people are getting infected. Even with the vaccinations starting, I don’t know if we can get this under control for many more months.

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I read this in the news today. Evidently, there were some communication issues between what was the expected production volume of vaccines, and the actual post-QA quantity. Again, it seems like we have amateurs running the show in Washington, DC. In any manufacturing process, there is always focus on the product yield. The actual manufacturing plant capacity doesn’t mean anything if none of your products passes QA. Do our government officials not know this? Is this another effect of Trump appointing friends and family to important agency posts instead of experts? I’m no Democrat, but I’m glad we’re rid of Trump the incompetent liar.

Insulin Reprieve, Part II (updated)

I sent an email to my endocrinologist with my blood sugar readings for the past 3 days as instructed. There was only one highish reading of 168, and I think that was taken soon after eating some late night snacks. Most of the morning/fasting readings were ~90-100 and post-meal reading were mid-100’s. If we use the CDC guidelines and assuming that my glucose meter is accurate, then 80-130 before meals and <180 two hours after meals is normal. I just want to be normal.

I also sent this screenshot from my glucose meter iOS app. The average over seven days was 117 mg/dL. I hope the readings are sufficient to delay the insulin injections, or at least convince the endocrinologist to order another fructosamine test to verify the first set of results.

While we’re talking about lab results, I also did a lipid panel at the same time. The results were all in the normal range except I have low LDL.

My results are:

  • Total Cholesterol = 130 mg/dL
  • Non-HDL = 71 mg/dL
  • LDL = 57 mg/dL
  • HDL = 59 mg/dL
  • Triglycerides = 71 mg/dL

The chart above doesn’t mention triglycerides but the Mayo Clinic defines normal as <150 mg/dL. I’ve been on the highest dose of Crestor (40 mg) for many years so it’s probably the drugs doing the heavy lifting. I do want to talk to one of my doctors to see if they can lower the dosage. I don’t believe I’m experiencing any side effects but it’s always better to cut down on medication if possible.

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Updated: 12/15/2020 6:35 am

Blood glucose reading from last night before bedtime was 103 mg/dL and 84 mg/dL this morning. That’s well within the normal range.

Fistula Update 12/12/2020

My fistula is ugly.

It’s not as large as some other patients but under certain lighting, it looks pretty bad. It also gave the techs some problems today. Everything was going well for the first 45 minutes. Then the arterial pressure alarm started screaming. The tech tried to rotate then reposition the needle but it started hurting. She then decided to switch the needle site so the other tech got another needle and jabbed me without lidocaine. Ooooowwwww! Holy sh*t did that hurt a lot. By then my entire arm was in pain, and my blood pressure was dropping fast. Usually they pull all the needles out at the end of the session, but they pulled the unused one now to see if it wold lessen the pain. Not really.

Since I was getting dizzy from the low blood pressure, the nurse came over to give oxygen and stop the UF fluid removal. Now there are three people surrounding my chair, with me in obvious pain. They ended up reclining my chair and giving me some ice for the arm. There was still a lot of pain but it was slowly subsiding. Great, another three hours to go.

It’s now about 8:30 am so I have another 1:20 to go. Arm is better if I don’t move it too much. Since the dialysis chair sucks and my back hurts if I recline too long, I’m sitting up again, but with the oxygen tube still stuck in my nose under the mask.

I’m weirded out by the huge blood pressure drop. I was very lightheaded and my vision started to blur. The tech said it was a natural reaction to stress and pain. I thought it would go up instead. Here is a chart for the first few hours.

The AHA categories are not too useful. I’m always in Hypertension Stage 1 or Stage 2. Even my low reading of 84/50 was recorded as normal even though I was about to pass out.

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It’s now 5:00 pm. The rest of the dialysis session was uneventful. They unhooked me at 10:00 am and I was out by 10:15 am. I took a short nap earlier, but my arm is still hurting a bit, and my right hand is somewhat numb. I am worried about going into dialysis on Monday and having “strangers” try to cannulate my fistula. I hope they don’t screw up.

Insulin Reprieve

My endocrinologist called me yesterday afternoon in response to my email message. I had asked her about taking insulin and whether it was permanent. I also asked her about my “normal” readings with the glucose monitor. She agreed that even though the A1C test was inaccurate, this was only one data point for fructosamine, so I should measure my blood sugar more closely for a few days and send her the results. She wanted a reading before each meal, and two hours after each meal. If the numbers are high, then I’ll need to start shooting myself with insulin.

I started last night and so far, everything is pretty low:

DateTimemg/dL
12/10/20206:01 am104
12/10/20206:36 pm92
12/10/202010:09 pm97
12/11/20208:03 am85

I’m not exactly sure what the normal range is for a diabetic. I’ve seen a wide range of numbers, but typically 70-130/140. From WebMD:

I typically measure in the mornings before breakfast so it’s like fasting/before meal. It’s almost always below 100. I’m hoping to avoid getting insulin shots since it’s another complication if I ever want to travel after getting a kidney transplant. A lot of places won’t let you bring needles/syringes in, and usually insulin needs to be refrigerated.

L.A. County Shutdown Ruling

I saw this article in the Los Angeles Times:

A judge has limited Los Angeles County’s outdoor dining ban to three weeks, even as a state order will keep the restrictions in place past Christmas, according to a ruling issued Tuesday.

At a court hearing, the latest to address a pair of challenges to the ban, L.A. County Superior Court Judge James Chalfant said county public health officials must conduct a risk-benefit analysis if they want to extend the ban past its current end date, Dec. 16.

“The county should be prevented from continuing the restaurant closure order indefinitely.” Chalfant said in the decision.

https://www.latimes.com/california/story/2020-12-08/la-covid-19-outdoor-dining-ban-limited-state-order-remains

So the judge ruled that the county health officials made the decision to shut down outdoor dining cannot last forever, and asked them to provide a cost-benefit analysis on the closure. I guess he had the same questions I did regarding the scientific basis behind the shut down. Supposedly only 5-10% of the recent COVID cases can be traced back to a restaurant. Where are the majority of the new cases coming from?

All this is moot since the county order was superseded by a state closure level, and the judge’s ruling only applies to LA County. However, it’s good to see someone else asking for scientific proof before making policy decisions that affect millions of people.

30 Second COVID Test

Well, that was much easier than previous tests. Instead of jamming the swab into my brain, they just swabbed the inside of my nostrils for 10 seconds on each side. It was super fast and didn’t hurt at all. Still, the drive there and back took ~45 minutes.

I do have to complain about the test site however. They set up a large, drive-thru tent in the parking lot. The issue was that there were confusing signs everywhere. I believe there was another testing site for another insurance company (Optum) in the same parking lot. That site is not operating but they left all the traffic cones and signs in place. Each of the entrances to the parking lot had an Exit Only sign, and the only sign with clear directions was facing away from the street; you can only see it if you turn in to the parking lot while ignoring the exit signs. I got to the parking lot ten minutes early for my 9:30 am appointment and was still five minutes late to the tent.

They also gave me an instruction sheet that contains a section called Self-isolation Instructions. There is one bullet that says:

If you have other medical appointments, schedule them for before your test or for after your scheduled surgical procedure.

Since they scheduled the test so early, I still have three dialysis sessions to attend before my procedure, and there’s no way I can skip them, especially when I’m supposed to guzzle all that fluid beforehand. The other points on the list are not as bad as the directions I received post-COVID test for my cardiac ablation procedure.

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With the bad results from the fructosamine test, now I’m more worried the colonoscopy. Each new test seems to bring more bad news. 😫

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I just realized that my dashcam captured me gettin lost in the parking lot. If I can figure out how to embed videos in WordPress posts, I’ll include it later.

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And that’s a no. I have to upgrade to WordPress Premium to be able to upload my own videos. I can always upload videos to my YouTube account then embed them in my post, but then I would lose the little bit of anonymity that I still have on this blog.

Fructosamine

Wishful thinking.

Each time I see a new doctor, we find something else wrong healthwise. In this case, I thought my diabetes was pretty well controlled, but I guess not. My endocrinologist says that the regular hemoglobin A1C test is not accurate for dialysis patients so she ordered a fructosamine test. This basically tell us what my blood glucose levels are over the past 2-3 weeks. She also claims that most diabetes medicine are not effective for dialysis patients so I may have to use insulin if the test result is high.

Well, the test result came back and they’re high. My number was 479 µmol/L, while the reference range is 200-285. This translates to an A1C number between 8-9, which is clearly in the diabetes range. The strange thing is that my daily glucose number are still lowish: it was 89 this morning. How am I supposed to monitor my blood sugar if none of the regular tests are accurate?

Sigh. Maybe she can wait a few months to see if I get my kidney transplant and come off dialysis.

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F*ck. The endocrinologist office just called and it’s imperative that I start taking insulin shots as soon as possible before the transplant. I’m so disappointed. Don’t these doctors talk to each other? They’re all part of the same hospital/medical group. I’ve been on diabetes medication forever and dialysis for 3.5 years. No one, not my primary doctor, nephrologist, or nutritionist ever said that there was a secret test I need to take because everything else is inaccurate. If the fructosamine test is accurate, then I’ve spent the last three years thinking my A1C was ~5 to 6% when in actuality it was ~9%. WTF? And if it was that high, how was I getting hypoglycemia that was bad enough to require a trip to the ER?

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I’m so tired. I think it’s even more discouraging when you think you’ve made good progress by watching what you eat and exercising regularly, but then find out your lab results were all a lie. How can all these doctors and nurses tell me “good job on controlling your diabetes” when this fructosamine test says otherwise, and it’s bad enough that I have to get daily insulin shots?!

Colonoscopy Prep

Since I’m getting the related COVID test tomorrow, I went over the pre-procedure preparation instructions. On the day before the procedure, I can only have a clear liquid diet, and they want me to drink 8 oz of Gatorade every hour from 11:00 am to 5:00 pm. First, that’s about 1.5 liters of fluid that I have to get rid of through dialysis, and Gatorade is high in electrolytes like potassium and phosphorus. I also have to mix 4 liters of the Golytely solution and drink 1/2 of it that night and 1/2 of it starting at 3:00 am the next morning. All together, I’m supposed to drink ~6 liters of fluids in the 12 hour before the procedure. They must not have considered fluid restrictions for dialysis patients in their instructions. Multiple people said the Golytely is to flush your digestive tract so none of it should be absorbed. That still leaves about 2 liters of extra fluid. I guess I have to stop drinking right after dialysis on Saturday and hopefully the rescheduled Monday session will be able to remove enough excess fluids. Having fluids in your chest cavity and not being able to breathe sucked.

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From this paper, it appears that the incident rate for colorectal cancer in Asian males is 37.8 per 100,000 people. That’s not very much at all but I haven’t had the greatest luck with health issues.

Another COVID Test

In preparation for my colonoscopy procedure next Tuesday, the surgical center is requiring me to get a COVID test tomorrow. That means I have to “quarantine” myself at home afterwards for an entire week. They also made the appointment pretty far away in Santa Ana, near the IKEA store. That’s a 30 minute drive from my house and may take longer since the appointment is at 9:30 am. Seriously, it’s a drive through test site so I’ll be there for under 3 minutes but will spend an hour commuting. I hope its the saliva test and not the jam-a-swab-up-your-nose test.

Since I have to go to dialysis, I don’t know how effective my “quarantine” will be. I typically don’t go anywhere else anyway so I don’t anticipate any changes to my routine.

Female Asian Doctors

Weird. I just noticed that almost all my doctors are female and Asian.

SpecialityGenderEthnicity
Primary CareFemaleAsian (Vietnamese?)
NephrologistFemaleAsian (Chinese)
CardiologistFemaleAsian (Indian)
EndocrinologistFemaieAsian (Indonesian)
PodiatristMaleCaucasian

For my podiatrist, I was referred to another doctor but she was booked solid so I scheduled a meeting with a different doctor. The original referral was to another Asian (Chinese) podiatrist. Also, my original primary care doctor, who just quit her practice, is also Chinese. I didn’t choose any of these doctors specifically. They were either referred by other doctors, or randomly assigned when I called their medical group office.

This is probably due to the Asian parent effect. All Asian parents want their child(ren) to become doctors or dentists or engineers. That’s why you see such so many Asians in those majors in college, and it skews the demographics when they all graduate and get jobs. I remember engineering school was probably >2/3 Asian students.

Dialysis Blood Pressure 12/8/2020

My blood pressure is still pretty volatile, like a risky stock price. I took the exact same medication as I did last Saturday: one NIFEdipine ER the night before and skipping the other two medications in the morning. I probably weighed about a kilogram more so maybe there’s more fluid in the bloodstream. Here’s what I recorded from the dialysis machine:

TimeSystolicDiastolicBPMNotes
5:34 am1387161
5:40 am1386959
6:12 am1447861
6:41 am1417461
7:11 am1587960
7:42 am1488365
8:11 am1498565
8:41 am1298067
9:11 am1609064
9:45 am1257769standing

The readings appear to be 10-15 points higher (systolic) versus Saturday. The head nephrologist was rounding today and he looked at my readings but had no comments. I think the numbers are still high but everyone else at the clinic seems to be fine with the results.

The blood pressure readings also vary a lot depending on how I am sitting. Usually the last reading is taken while standing since your blood pressure drops when you stand. If it’s <100, then they won’t let you leave, especially if you drive. There was a huge 35 point drop from the 9:11 am reading. Your blood pressure is also higher if you are reclined or lying down. I forgot to record how I was sitting at each of the readings so that could account for some of the variability.

COVID @Work 12/8/2020

Boom! The update from yesterday had an increase of another 13 cases. My work site is up to 232 cumulative cases so far. For a long time, there weren’t any new cases but the number has exploded along with the rest of California. People are still going to work since we’re classified as an essential business. At least the company has given everyone an extra 10 sick days if you are affected by COVID. Let’s hope one of the several approved vaccines actually work and can slow or halt the growth in infection cases.

Déjà Vu Again

It’s deja vu all over again.

Yogi Berra

Due to the spike in COVID-19 cases, parts of California are being ordered into lockdown again. I believe the criteria is >15% ICU availability and is evaluated by region. Orange County is part of the Southern California region, and the total ICU availability is 10.9%. At the state level, total ICU availability appears to be 14.2% from covid19.ca.gov.

Since March, I’ve been working from home exclusively, and have basically not met with anyone outside my immediately family. I’ve not eaten out, even with outdoor seating, but relied on home cooked meals and take-out. I also wear a mask during the few times I have to go indoor to buy food or groceries. I have a lot of risk factors for COVID-19 so I’m being super careful.

However, I do have some issues with the above order. First, how did they determine the 15% threshold? Why not 10%? Maybe 15% is too lenient and we should be shutting down at 25%. Also, why did they group the statistics by arbitrary regions instead of by county? Orange County is being ordered to shut down since the Southern California region is at 10.9%, but the county is only at 18%.

https://occovid.com/hospitalizations

For sure 18% is a bad number, but if you’re going to make up rules that affect the livelihood and lives of millions of people, should it be more rigorous? Why not enforce the order at the county level when the data is readily available? I’m very lucky that my job is not really impacted by the pandemic so far since we’re an essential manufacturer, and revenues are from long-term contracts that have not been affected so far. I would hate to be a restaurant owner. After 9 months of shut down orders, they have to again decide between closing and going out of business, or staying open and risk losing their business license. Also, what is causing the current spike in cases? Is it from people eating at outdoor seating at restaurants? I’m actually curious since I don’t go anywhere.

Finally, governor Gavin Newsome was caught attending a dinner party with lots of people apparently not wearing masks. When asked about it later, he claimed the party was outdoors but there are some photos and witnesses that seems to suggest otherwise. So not only did the governor violate his own order, but also lied about it afterwards.

The witness also claimed no one at the party was wearing masks, which would seem to violate the state’s guidance that individuals at gatherings wear face coverings at all times when not actively eating or drinking.

Politico reported on Tuesday that top California Medical Association officials were also present at the birthday party.

On Monday, Newsom said he will try to set a better example going forward.

“I made a bad mistake,” he said at a press conference. “I should have stood up and … drove back to my house. The spirit of what I’m preaching all the time was contradicted. I need to preach and practice, not just preach.

https://www.sfgate.com/politics/article/Gavin-Newsom-birthday-party-indoors-outdoors-COVID-15736490.php

It’s hard to make sacrifices when the actual governor and medical people don’t follow their own rules and recommendations. It appears that the state is forcing restaurant owners to choose between bankruptcy and losing their business license. Likewise, Newsome had to choose whether to go to a dinner party or not, and he chose to go. There doesn’t not seem to be any consequences for the governor “making a bad mistake.” Maybe he should “lose his job” for violating health orders then lying to the pubic about it.

This whole situation sucks and handled poorly by government at all levels.

Walking 12/6/2020

Maybe it’s because the Apple Watch is still a novelty, but I’ve walked four three days in a row since I picked it up from the Apple Store. I decided to take the local park route, even though I think Orange County is supposed to go into lockdown mode again. There were still some people in the park, most were walking their dogs. I did see a group of teenagers sitting around a picnic table without a mask in sight. Here is the Apple Fitness data:

For music, I started the 30 min Hip Hop Fun Walk in the Peloton app. The problem was that Apple Fitness tracked both sets of data, so two workouts showed up on the summary. I don’t know how it counts the two sets of data so I deleted the Peloton one. Since it’s all integrated, the next time I use the Peloton app, I don’t need to start tracking on the Apple Watch as well. Also, the green or Exercise ring on the Apple Watch moved a lot after the walk. This walk was a bit slower than the walk around the mall from yesterday. Not sure why that walk didn’t count towards the Exercise amount tracked.

Since it was dark out, I clipped a small flashlight to my hoodie so it would illuminate the ground around me. It’s really for cars to see me since I walk on the street and some areas are pretty dark. I bought one of these from Amazon so I’ll try it out tomorrow.

Walking 12/5/2020

Since the charge in my car battery was pretty low, the charging display said it would take an hour to charge to 90%. I was on one of the “urban” chargers that only outputs about 50 kW or ~165 miles/hour. I spent about 20 minutes eating lunch in my car, then decided to go for a walk. I ended up walking around the outside of Santa Ana Main Place. I was going to walk inside too since the mall was open but I forgot to bring a mask from the car so I stayed outside. I felt a little conspicuous without a mask so I walked pretty quickly to avoid any contact or confrontations. Most everyone else I saw had a mask on but they were all headed inside the mall. I ended up walking 0.84 miles at a pace of 19’40”, which is better than 3 miles/hour. It didn’t feel like I was walking that fast.

After getting home and taking a nap, I decided to take another walk around the block. On the Apple Watch, it tracks your daily fitness with three rings: Move, Exercise, and Stand. The idea is to “close your rings” each day by moving and standing enough. I’m fine with those two circles/measures, but the Exercise ring is supposed to track activity at or above a brisk walk. The only issue is the definition of brisk walk. Evidently, 3 miles an hour is not brisk enough since the Exercise ring hardly moved after my round-the-mall walk. On the second walk, I tried to walk at a faster pace but failed. I ended up walking 0.71 miles at a pace of 20’39”. Here is what the rings look like right now:

At the top of the screen, you can see that I’m doing pretty good with the red and blue rings, but I can’t get the green ring (Exercise) to move with consistency. Maybe “brisk walk” actually means “running” or something. From the Move chart, you can see when I got up and went to dialysis at 4:30 am, had lunch and first walk, then went for a second walk before dinner.

Dialysis Blood Pressure 12/5/2020

Since my right arm is pretty much immobilized during dialysis, I can’t really write or take notes. However, I do have a blood pressure app on my iPhone that’s used to download data from my BP cuff, and it allow you to make manual entries. So during dialysis, each time the machine took my blood pressure readings, I typed it into my phone. Here’s the report/chart for this morning:

Not too bad finally. This is without taking the Metoprolol and Olmesartan before dialysis. We removed the Crit-Line monitor but still removed about 3,200 mL of fluids today. The first reading at 5:40 am was 139/75, and the final standing reading was 107/59. A bit low due to orthostatic hypotension, but the nurses let me go home if the systolic number is >100.

Walking 12/3/2020

First walk using the Apple Watch as the tracker instead of the Fitbit (Charge 2). I hope it’s more accurate and reliable than the Fitbit since it cost a lot more. The workout data is transmitted to an app on the iPhone called Fitness. Here’s the data screen:

If you scroll down on the screen, it also give you split times for each mile, heart rate chart, map, and the weather. I walked two laps of the larger neighborhood loop, which was ~1.3 miles. The pace was pretty good at 22’06” or almost three miles per hour. That’s close to my walking rate before the heart surgery and much faster than what I’ve done all this year.

Since it’s already dark outside and no one walks in LA, I didn’t wear a mask, but I also didn’t get anywhere near another person. I probably should have worn a mask though; there was definitely smoke in the air. A couple of times, my nose was burning from breathing in the air, even though the Apple Watch showed an AQI of 42.

In addition, I haven’t napped all day, even though it’s dialysis day. I’m not supposed to work that much today but there were several conference calls and a 1:1 meeting with my boss. I’m trying to hold out and not nap until tonight so I can try to get back to a regular schedule. I also have cell group tonight. Due to the fire, we’re probably meeting on Zoom instead of in-person outdoors. Need to try and stay awake through that as well.

Walking 12/1/2020

It’s the first time I’ve walked outside (for exercise) in over two months. The last several times I walked outside, I was afraid I was going to be stranded on the side of the street. At the time, I was still having issues with pleural effusion (now that I know what it means) so it was difficult to breathe, and often I would have to sit on the curb and rest. Today was a bit different. I don’t know the exact stats since the Fitbit had a brain fart and didn’t record the walk. Maybe it knows I ordered an Apple Watch.

Anyway, the walk took about 25 minutes and Google Maps said I walked ~0.945 miles. I didn’t have to stop at all and was breathing normal at the end of the walk. It’s amazing how a bit of fluid can have such a huge impact. I need to start walking more now that I can breathe and my toe is pretty much healed.