Relapse City: I Spoke Too Soon

I agonized about writing this post. I know many readers have taken hope from previous posts I'd done about how much better I was feeling. I even went so far as to believe myself fully healed from Long Covid. Unfortunately, this has turned out not to be the case after all. I think it's very important that I be transparent and honest about this struggle.

I got sick March 13. It has nearly been six months. In the middle there have been times I was at death's door, with blood so thick it coagulated the moment they sucked it from my veins with a syringe, having emergency surgery to remove a suddenly dead gallbladder, two hospitalizations and 16 emergency room visits. I have also had beautiful healthy stretches where I felt few or no symptoms at all, and was able to hike more than 7 miles a pop in the high desert mountains.

Since June, I have had far more good days than bad, at a 1 to 10 ratio I'd say.

Three days ago, things began taking a turn for the worse again - and I mean worse. I'm not sure why. Perhaps it is stress. I have been out of work during my illness, without unemployment benefits, living off what little savings I had, and help from family. My money has run out, so I have had to take a full-time job again, as a high school humanities teacher. I started this week. Because we are teaching online, this involves a lot of sitting, a lot of being indoors, and a lot of brainpower to create curriculum, build Zoom classrooms, manage student rosters, design my Google classrooms, attend faculty team planning meetings, etc.

Whatever the cause, I find myself facing new symptoms and they are scary, as well as a worsening of existing lingering symptoms.

  • I have a new sensation that I cannot breathe

  • My oxygen levels have been lower than normal, hovering between 93-96 percent most of the time, but dipping as low as 87 for a few seconds

  • My belly feels distended and hard whenever I eat

  • I have a severe pain on the left upper abdomen, under my ribs

  • There is a clicking sound along my lower rib on the left when I move, maybe a swollen spleen?

  • It is increasingly difficult to swallow, as if my esophagus were paralyzed

  • If I move a certain way, I feel something caught in my windpipe, like a strangling

  • I've also got one hell of a sore throat, and swollen tonsils I never had the sore throat thing before

  • Today I spiked 99.4 degrees f, which is a fever for me

  • The brain fog is severe; I feel totally dissociated

  • My temples tingle, as do my fingers

  • My hands are hot, my palms mottled

  • The bottoms of my feet are also mottled

  • My blood vessels remain visibly swollen

  • My pulse has been inconsistent, ranging from 45 to 90 at rest

  • My heart feels like it is going to beat out of my chest

  • My eyes continue to be extremely bloodshot, as they've been since April

I'm tempted to go to the emergency room again, but I've been through this so many times I don't have the energy to deal with the doubt and ignorance and arrogance of providers. I live in an area that has thus far not seen a whole lot of Long Covid, and I have yet to find any ER doctor who knows what it is or, once informed, believes I have it. I'd like to see my primary doctor, but she is only working four days a week, and all by video or phone. I need to see a rheumatologist or infectious disease specialist but both those referrals were rejected as the doctors said there's no way I could be sick with covid this far out. They are incorrect.

Folks, I'm scared. This isn't getting better. Not in any real or recognizable way. I wish I could bring you hope, as I thought I was. But I'm right back where I began, after feeling good for so many days. It is demoralizing. I just want to be able to have a normal life again, to teach these kids, to take care of myself and my son. I fear I'll just get sicker to the point that I can't keep up with it all. Why is this happening? When are we going to find a treatment that helps us? When will doctors listen? I hang onto hope, because there HAVE been good days, but on these bad days it is hard to remember what hope feels like.

I am taking prednisone to try to calm my immune system down, but since I began taking it three days ago I've had all these new problems. Does this mean the virus is still alive in me, and the immune system was on overdrive because it needed to be? Are Long Covid sufferers holding onto hidden wells of virus, in the central nervous system or organs, dealing with ongoing flares and rests as it slowly works its way through every cell? Or do we have some sort of new chronic illness that will ruin our lives forever? Is the damage to my blood vessels healing, or is it ongoing? Why isn't anyone taking us seriously?

I find comfort only in prayer. There is nowhere else a salve. I am doing my best to remain mindfully present, to accept things as they are and not struggle against a reality I am helpless to change. I just keep breathing, as best I can, and I think of beautiful places, and sacred geometries, all the beautiful words God has built for us to discover in Her mathematics and physics and laws and beauties. If I am meant to return to dust now, rather than 30 or 40 years from now, what difference will it make, really, in the bigger design? That is how this whole thing works. There is birth, death, and life rises from decay. An endless recycling that isn't about me, or my pain, or anyone of us in particular. We are all just a part of this thing, and, at least for now, if feels like I've been pulled out of line for the demise portion of the journey. The best I can do is continue to love, fiercely, all the way down.

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