Three Years of Long Covid
Three years is quite a bit of time. I have never dealt with an illness for more than a week before this. Yet, here we are. The three year mark of my long Covid, or chronic post Covid-19 syndrome as my diagnosis states from 2023, symptoms beginning. Three years of dealing with the chronic fatigue and brain fog it brought me. Three years of dealing with people who want to continue to blame diet or other things. Perhaps out of not fully grasping my situation. Three years of dealing with skeptics that believe this is vaccine caused. Perhaps out of their personal distrust of science and medicine. Whatever the case, it is three years of a severely restricted life due to what chronic fatigue is and what Covid can cause.
Instead of rehashing everything, as I now have a knee jerk reaction to do whenever someone replies with it must be my diet, you can read my year one and year two reflections on my journey up to those points and medical appointments. There is a midyear update here for the New Year update. Be sure to read if you want the full path of the ten specialists, with tests and scans a plenty through this journey.
From here, good news in the case of the anemia. In an effort to fix my testosterone, an issue I’ve had since my late twenties due to the stress of life and work, my anemia has been remedied. It wasn’t the plan or a suggestion, but something to work on in an effort of getting it back for help with energy, fat breakdown, and other benefits of testosterone. Though the tests in November showed my body producing nearly none, with 17 ng/dL and a week later test returning 13 ng/dL. For reference, a healthy male my age should have it within the range of 250 to 1100 ng/dL, so you can see how bad it was. Turns out, that can have an effect on hemoglobin and red blood cell counts. As of March, it had returned to well within normal ranges and my anemia had gone.
Back on that good bad news thing. It meant, anemia fixed and once again not the cause of my chronic fatigue. It left me at a point that I seemed to now just have to wait for ongoing research to find a solution and back to waiting for my body to potentially beat this. That is not the most exciting or hope driven conclusions, but it was my reality. I continue to read stories of getting better in the covidlonghaulers Subreddit, so I know it is likely I will improve eventually. Just, no consistent solutions and no one able to fully explain time frames for any one individual’s recovery.
Thankfully, my friend Travis Stephens has been watching my journey through social media and knew of a friend who, like me, has been experiencing long Covid. She had reached out to Banner who put her in contact with an internal medicine doctor and a team they created to specifically try to find solutions for patients dealing with long Covid. He gave his friend my number to reach out to me. She advised me ahead of it, it isn’t a cure. She continues to deal with issues of her symptoms, but they are more livable thanks to his help. I scheduled an appointment, which had a two month wait for any availability, and waited for the day.
At the end of May my appointment had finally come and a little more hope for a possible solution. However, there was initially a little surprise when I told them that I was there for help with long Covid. I had not gone through the Banner means to set up that kind of appointment and the program had been suspended due to funding freeze from our current administration and RFJ Jr. The snake oil salesman of the medical field who, with many other con men, is a part of this current administration trying to act like they are experts in fields they have little actual experience in. But, in good news, this doctor said he would help me nonetheless. He got all the specialists information I could dig out of my email searches on my phone to request all the test results and scans of the past three years. He referred me to the Banner University Physical Therapy clinic. This clinic continues to have long Covid specific physical therapy to help extend my PEM, Post Exertion Malaise, spell endurance and operate within the limits of my chronic fatigue. Plus, their speech therapist is helping treat to improve the cognitive issues tied to brain fog.
This has brought me excitement and hope for, at least, a chance to improve my ability to function more as I used to. He added a couple supplements to my daily diet. As of this, I just had my first appointments of the physical therapy and speech therapy yesterday. We set baselines. I felt very listened to and they understood a lot on what is going on due to long Covid. This has brought me hope of my quality of life improving from here.
Of course, I have been up to more than just medical appointments in the past year. I continue to try to poke out to a show here and there within my limits. This chronic fatigue making it dangerous to really drive after points has made my choice to limit outings. This continues to create another point of frustration with people who don’t understand what Chronic Fatigue is. Friends who reply and appear to conflate it with the regular fatigue they are familiar with. Friends who think I’m more capable of things than I really am. I wish I could better educate everyone on what chronic fatigue is, so they can really understand instead of creating these conversational conflicts and frustrations.
Though with help from friends, I have been able to add more amazing moments to my past year. Moments I cherish more as they are rarer. The first one is an annual trip to my friend Wayne Forst’s place in Denver for his birthday. An event I currently haven’t missed a year of since it started. A place where him and so many others I call friends now are super accommodating to my illness. From his help just getting around and not having to drive, to understanding when I have to go find a place to sit or lay down at these venue’s or Jim’s house. To once again discovering new local Denver bands that I can spread the word further over my Instagram and BlueSky for others to check out. These trips giving me an escape from my Tempe apartment every year.
Speaking of that apartment, nearly three weeks I ago made the move to a condo in Phoenix. One that is closer, as in around the corner, from my dad’s place. One that will help me with someone who can help me drive places when needed now from this. I will have someone I can depend on to help until my health improves. Simultaneously, as he gets older, I can be near to help him where I can, too. It felt weird to need so much help moving, but I’m very grateful to everyone who helped me. I packed what I could within the limits of my chronic fatigue, but they finished packing what I couldn’t. They did a first run as I laid down and rested. The second run would be the last one, that would be the one I’d help where I could.
I already miss being close to Yucca and other venues, as with my health, that made it an easier attempt to catch a show here and there. I live five minutes from my high school and where I spent my tweens and teens, which is a little cool and a little weird. It is a quieter place that is way more enjoyable for someone who averages two naps a day. I love it, although it may add a new hurdle to catching more live music until I’m better.
Speaking of loving it, there was another activity that friends helped me achieve this past twelve months, my tenth Punk Rock Bowling. From helping with a drive to and from Vegas, my friend David, to my PRB roommate, Jessica, who helped me catch two bands in the main festival. It once again makes the point that if I had a bed in walking distance from the venues, this would be way easier to get back to making every show. It got me to see newer bands I had been unhappy missing their local stops due to my health, such as The Kilograms and Codefendents. It got me to catch older acts I had never had a chance to see, such as 7 Seconds and Bob Mould. Plus, seeing friends abound, from Ernest to April, that I usually only see when their tours hit Phoenix or at PRB, just brought was ever so much more joy. Though let me just say, if you ever get a chance to see a Bob Mould set, take full advantage. That has to be the best solo artist set I’ve ever watched. But, yea, there has been a few great times in the past year despite my health’s limitations.
So, it’s been a good year despite the gift that Covid left me three years ago. My diet has improved and my weight down about 20 pounds in the past couple months. There is hope in potentially a treatment to improve my quality of life until I’m better. I live in a better place, even if it put me further from a few of my favorite venues. If PRB reminded me of anything, it was how much I miss going with the flow and how many great music acts and friends I can just stumble into. Hopefully I can get back to that sooner than later. It is more a waiting game in the meantime. Thank you everyone who continues to support me during all of this. Hopefully I’ll see your faces more regularly soon again.
