Long covid

 https://m.youtube.com/watch?v=0gLmMPOHDwM&t=59s

Blessings

 

A week ago without asking  my ministering sister bought all the school supplies we needed for the kids to start school. I was so grateful because it was really low down on the priority list but was something that needed my attention.  Today she dropped off six bags of groceries. It's been really appreciated because there have been times when Eric and I have felt alone just because we're having a hard time finding a doctor who can help us.  These two acts of kindness have helped me to feel seen and heard, cared for, and loved. 

Recovery Day

 I woke up this morning and my limbs felt super heavy and I had a headache. Not surprising considering how busy the last two days were. We had a couple of Telehealth visits (thank goodness we didn't have to travel). The first was with the neuro psychologist who did the cognitive testing a couple of weeks ago. The results were pretty much what we expected: my brain is functioning well, my emotion health is not good (anxiety and depression), and my motor skills are low average to below average (due to tremors). The second was a follow up with the covid clinic in Las Vegas. I just updated him on the tests that have been done and let him know what the upcoming tests are. No changes, we'll follow up next month. Good news is that, even though I don't have a follow up with pulmonology for two weeks, I saw the results of the test done last week and my lungs are functioning normally. So we can check heart, lungs, and cognition off the list. 

First day of school!

 The kids went off this morning for the first day of school and were excited to see friends again. Amber and I drove down to Las Vegas for a neurologist appointment. I had an EEG done and the neurologist that we drove 2.5 hours to see spent a total of about two minutes with us. He only asked like three questions that only required a one word response. No history taken.  His exam took like 30 seconds.  The doctor's communication was poor. He ordered a brain MRI and Amber and I were back on the road again, heading home. It was a rough trip. I was still wore out from yesterday and had to lay down in the back seat for a couple of hours to clear my head of the brain fog. 

Lots of Docs

 Today was long. Amelia had a doctor appointment in st George and then I had a follow up with the psychiatric NP and then a neurofeedback treatment. Amelia had a sinus infection, but is doing well. The only change I had from the NP was that he increased my Propranolol to help with the tremors since 20mg wasn't making a difference. I was pretty wore out and ready for bed when we finally got home. 

More rest, but not enough sleep.

 I've continued to have trouble sleeping through the night. Last night was probably the best I've had in a while as I was only awake for about an hour in the night. Another interesting thing that I've noticed increasingly occurring is the twitching before I fall asleep has increased and become more noticeable. For example, instead of my hand twitching a little as I doze off, my shoulder will jerk. Also, I've had a few incidents in the past few weeks where I wake myself up moving to go with my dream. The first time I dreamt that some animal was attacking my legs and I tried to kick it off. I woke up kicking my legs. The other two involved my arms. These aren't real issues by themselves, but do contribute to the sleeping difficulties. 

Meteor Shower

 Last night, Amber, Eric, William, Bradley, and Amelia layed on the trampoline and watched the meteor shower. Amber and Amelia nodded off pretty quickly, then Bradley and William went not too long after. We weren't out very late, but still saw some good meteors.

I had another session of neurofeedback today as well as a lung function test. I haven't been sleeping well over the last week and woke up pretty weak and tired this morning. I improved some by midday, but was wiped out again after the doctor's. 

Pretty restful days

 The last few days have been pretty restful. Friday and most of sa were spent at home, cont to recover from the weeks activities. Sat evening however, I had the chance to play pathfinder at nerd night. I'm grateful that we got into that game over the last year or so. It's actually something I can participate in and socialize through without being too draining. I went to Sacrament meeting Sunday and then spent the rest of the day at home or at Keith and Lacie's house. Monday was just a quick trip to St George to do neurofeedback and then back home. Tuesday I was a little foggy again, so I just wanted to keep calm and with no things to focus on. Today was mostly spent at home with just one trip into Caliente to get some blood drawn.

One of the troubles that I have every once in a while is feeling like a burden and worthless. Amber has done a great job of taking care of me and helping me feel loved and needed, but it is very difficult mentally to go from being a provider to being a patient. 

Rest Day

 Today was a day to rest from the last couple of days. Eric is still recovering from the last two days and has continued muscle weakness and soreness. He said that he feels like he ran a few miles yesterday. We ran a few errands, going to Caliente and Pioche, but Eric spent the majority of the day in bed. 

Stress Test

 Today Eric had a stress test in St. George.  It went about exactly how it shows in the picture.  He lasted about eight and a half minutes on the treadmill before his legs couldn't take any more.  Thankfully the EKG and Ultrasound showed that his heart is in good shape, but he is below average in activity tolerance due to Long Covid.  The interesting part of the picture happens after the initial stress test.  You can see that his body doesn't really return to a state of rest for another six hours after the test.  During that time we ate lunch, visited with his parents at the St. George Tabernacle, took a nap at his parents house, and then went to a Neurofeedback appointment (which involves sitting in a chair watching TV).  He was pretty drained after the test for the rest of the day.

Cognitive Testing

Eric went through more than 4 hours of cognitive testing today at a Neuro Psycholgist's office. There were various methods of testing including: mental math, memory, visual-spatial, auditory, and comprehension.  He handled the testing pretty well, but was wiped out afterwards. We won't know the results until our follow up appointment in September. The psychologist did refer us to a neurologist that specializes in movement disorders to address the tremors, but all of the neurologists in Southern Utah are booked out for months. 

Long Covid

 Hello everyone, I am awful at journaling but wanted to have some sort of record of what has been a major challenge in our family for the past seven months. I worked in a small county hospital, but had to leave my job last week because of the worsening fatigue and post exertional malaise as well as brain fog that increased with the fatigue. My son tested positive in Nov and my wife in Dec, but I never did, nor did I have any symptoms. It's likely that I had Covid at some point prior to being tested or had a false negative. I had the Pfizer Vax in Dec and Jan. I reacted badly to the second shot: nausea, fever, swollen lymph nodes, fatigue, etc. It lasted for almost a week before I felt somewhat back to normal. A week later, I ended up with decreased motivation and increased fatigue and brain fog. It's kind of a blur and my Amber handled setting up appointments for me since I couldn't concentrate, but I ended up at a men's health Doc and after running labs, they found that I had low testosterone. I was treated for that and 6 weeks later it was high, so they cut the dose back. I did have some improvement, but the fatigue continued. Anxiety began to increase and I went to my primary Doc who prescribed some meds. We ran a bunch of labs but everything mostly came back normal (high ferritin, slightly elevated lymps), but the fatigue continued. We switched some meds thinking that they were contributing to the fatigue, but with no effect. My Doc thought it was anxiety related and said that we'd just have to keep working on getting the right meds. I was tired of having no answer to the continued issues and began researching various things when I stumbled upon long covid. I had never considered it a possibility since I never tested positive and had the vaccine, but everything fit. I ended up going to a long covid clinic and the Doc diagnosed me with long covid.  I finally had to leave my job because I couldn't tolerate the fatigue any longer. After reading so many stories, I know that was the right thing to do, but it is a hard decision since I loved my work environment so much. So far I've been to a cardio, pulmonologist, and psychiatric nurse practitioner with normal labs and ECG. I have a stress test next week (I am dreading how that will affect me for the following days) and I hope it will give some answers to my poor activity tolerance.  It's nice to have so much love and caring shown by so many people throughout this time. Thanks!