It feels like it’s been 5 years and in some ways, it feels like yesterday. Life moves in and out of time when trauma and residual effects are steering the ship.
Sept. 1st 2020. 5 years ago today.
A day that will be etched in my memory forever.
A day when I believed I would meet Jesus face to face.
When while doctors and nurses scrambled around me to place IV’s and get me to CT (they thought at that point the reason I couldn’t breathe was a Pulmonary Embolism) I just prayed. I know what a PE is and how dangerous it is. But I was so sleepy and in so much pain, I just closed my eyes, my eyelids were so heavy, and just listened to the chaos around me.
I felt the Lords presence and a peace wash over me, and an understanding that I was “ready”. I did not want to leave my kids and family but I was “ready” to be with Jesus and be reunited with all my loved ones.
But, I vacillated between this peace and absolute sheer terror. The physical pain I felt in my chest, head and throughout my body was excruciating.
My “sats” were holding at around 85 with 2L of O2
My temperature was going up… from 102.5 to my 103… to 103.8 to 104… it continued to rise a tenth of a degree at a time for the next 24 hours, as my body tried desperately to fight this virus that was ravaging it. High fever even with Aspirin and Tylenol being given alternately every 4-6 hours.
I was also given, dexamethasone and Salumedrol.
My labs checked daily were awful. In addition to my lungs, I had poor liver function, poor pancreas function. My kidneys were being taxed. My inflammation markers were through the roof, my d-dimers - something they just kept talking about were very high. But they did ultrasounds and CT’s and couldn’t find a source. And I was testing positive for ANA (autoimmune stuff) my body was breaking down. My organs were not functioning properly due to the inflammation. I was in bad shape.
I was barely conscious. I couldn’t speak. I was in constant pain. They would wake me up to ask permission for things and I would just wave or nod. Fill in any amount of consciousness with fear and sadness and anxiety. My heart rate was also holding about 120-130. Thanks in part I'm sure to all the steroids as well as fear.
The added Ativan to the mix of meds taken regularly; allowed my body to rest.
Those first 36 hours in ICU were terrifying and again, I believed I would die. Finally an internal medicine doc said, they wanted to try me on an experimental anti-viral drug called Remdesivir.
It would mean 5 days in ICU given in my IV.
I whispered “Anything. Try anything”.
He went through the unknowns and the risks. Reminding me again, this was not an FDA approved recommendation for Covid. But some studies were showing it helped. And his own words “it’s the last thing we can try. We don’t have any other options at this point. You have had the virus too long for antibodies to be helpful. Remdesivir is a last ditch attempt”.
What I understood him to say, was nothing they were doing is helping. My numbers were getting worse. My fever going up, and without this treatment I would most likely not make it. He had me sign a paper and a little bit later a nurse came in with another IV bag.
I slept through the next 24 hours. The day after that, my fever broke. I woke up drenched in sweat and more alert than I had been in at least a week. My temperature was 99.9.
And as soon as my fever broke, much of the intense pain I had been in, headache and body aches also dimmed significantly. I was able to stay awake for longer periods of time.
From that moment forward, my numbers started “trending down”. The nurses and doctors actually smiled and you could see visible relief, that this experiment seemed to have worked.
I was still very very ill and oxygen dependent. If I took my oxygen off, even for a minute alarms would just go off. I was holding steady at 90 sat. at this point. Whenever it dropped below 90 it would beep.
After 5 days of the Remdesivir; I was a completely different person than when I came to them.
They kept me in ICU a little bit longer, and then moved me to a “Covid Recovery Room” all total ICU 7 days COVID Unit 3 days.
I left the hospital with *another* 10 days dose of Dexamethasone, several inhalers, and a spirometer. My husband had made the guest room into a “home hospital room”. Where I could convalesce. I had home nurses coming weekly to do vitals, and take vials 8-11 at a time of blood for follow up testing.
Little did we know I would be there for 6 weeks.
As my broken immune system, my dysfunctional organs etc would lead to back-to-back secondary infections, which required antibiotics and another 3 days dose of Dexamethasone.
But somehow I had to pull it together, because on top of this, I was still working part time- remotely, and we were moving across the country.
Something that I listened to on repeat in the hospital and at home for those 6 weeks was 2 albums... 1."Conversations" by Sara Groves and 2. "Strong Love" by Jon Thurlow. Literally just had them playing alternately on repeat. Clinging to those promises, feeling the Lords sweet presence near me.
The Remdesivir and those albums are what saved my life. I'm convinced of it. I sensed the Lords real and tangible presence with me in that room. So in essence I did meet Jesus face-to-face.
I am now a "long hauler". The damage that COVID did to my organs and body, mean I am now living with a rare Autoimmune Disorder that is known to be caused by “Post Viral Syndrome” such as Covid. I was already living with Chronic Pancreatitis pre-Covid, but now the function is less. I was already living with Asthma but I'm seeing a pulmonologist for the long term damage, and chronic -sometimes debilitating cough.
I have flare ups, sometimes called relapses or reoccurrences of the same inflammation, pain and headache and even fever that I had with COVID. It's crazy how my body holds on to this.
I will say that for me, getting the vaccines, has helped. I have had less flare ups and less severe flare-ups when they do occur.
I have a GI Doc, a Pulmonologist and my PCP/Internal Medicine doc & Immunologist all working diligently to treat all the broken parts.
Here's the thing; I have said it before... and I'm saying it again.
I am one of the LUCKIEST ones.
As traumatic and painful and honestly frustrating my COVID journey has been, I know I am one of the lucky ones.
I LIVED
I was never on a Vent… I am able to work and function at some semblance of "normal" even though I have had to modify my diet significantly and deal with chronic pain and swelling/inflammation.
Even though my activity level is very low- because exertion can cause a flare up- I am still so blessed. (This is hard because I'm also trying to lose weight, but literally walking up stairs, can cause a debilitating flare-up or shortness of breath) I had to stop working full time for 4+ years, went back to work full time finally, 4 months ago. (4/25).
I have so many new friends, I have made through support groups, that cannot function. COVID ravaged their bodies and organs, differently than mine. They are now on disability having left good jobs and some have lost their homes, and require a lot of extra care. Even a year or 16 or 18 months later after they "recovered".
I am one of the lucky ones because I had BOTH a Positive-Covid test, and hospitalization. Some of my friends from my support groups, have the exact same issues I have, but because they got it early on in the pandemic, they were considered "presumptive" but were unable to get tested. Some tested positive but were never hospitalized, and they are all fighting with insurance companies and having to advocate with specialists. It's been a nightmare for them.
I have a letter from 2 of my doctors, that spell out... things like... ICU hospitalization, Respiratory Failure, Organ distress, diagnosing me with "long haul" covid. Her words. "Long-Haul Covid Syndrome". So my specialists know exactly what they're dealing with and my insurance doesn't question it.
Yes, I am highly favored and blessed. I feel honored to have lived through it and have access to appropriate care. I do not take any of it for granted. Even when I am having a relapse or flare up. I have wonderful support and am blessed that I did not lose everything, I can rest when I need to. I have days where I don't have to work. Yes, I am lucky and blessed.
So now, today Sept. 1st 2025 I am still living with illness and the ramifications of COVID.
I'm telling you, just because you don't "die" from it, does not mean that you're life cannot be permanently and detrimentally altered.
When we talk about 95% (or higher) "survival" rate, and people are arguing about masks and vaccines, please remember that there are over a million of us living with long-haul covid and "survival" does not take into account, the significant sometimes life altering ramifications of this disease.
"Survival" is not the goal. Not spreading it; not getting it in the first place, that's the goal. I would not wish long-haul on my worst enemy.
Merely Surviving this deadly and debilitating disease is not why I advocate for vaccination and wearing masks. The fact is; you have no idea until it happens, if you will be one of the ones whose body decides it cannot handle it. If your body will be one of the ones with inflammation so severe, that it causes actual organ damage. And you have no idea, WHICH organs will be affected. It's a crap-shoot. It's anyone's guess. And I am telling you. You do NOT want to get this. It is hell.
Regardless of where you land on the debate of personal liberties and forced vaccinations etc... I'm asking you to do whatever it takes to prevent getting this disease. Because LIVING with Covid is nearly as bad as Dying from it. Do this for YOU. You won't regret it.
I look back now and I honestly have no idea how I did it. I felt as sick as I was. My brain was not even functioning and somehow I managed to work and pack a house and clean it so we could move from Illinois to Arizona.
I know my faith, my church family and my community are what kept me going and continue to keep me going. 5 years later.
