Life Lessons: Be an Advocate for Your Health

I’m no doctor, but I knew something was very wrong. The more doctors I saw, the more I knew something was very wrong and it wasn’t just in the health issue I was having.

After two years of stretching the medical community to its limits with a barrage of COVID-related complications and politics, I have empathy for everyone who works in healthcare. This isn’t about that. This isn’t about the resources stretched thin, the times it’s not an emergency, or the toll adding in processes of vaccination, temperature and health checks has taken on the field.

This time, it’s about me. It could also be about you.

COVID threw my body into a tailspin from the waist down. Joint pain, knee pain, tight muscles, the works. Again, I’m no doctor, so I can’t connect the dots too much on that but I know in August I could walk and in December I couldn’t. I could breath fine in August and now I cough myself into hyperventilation.

Going to the Doctor that Makes Sense

My knees hurt. Badly. They were bruised all over. Swelling was incredible. I made an appointment with an Orthopedic doctor. That makes sense, right?

I hobbled to the office, got an x-ray, had a little bit of manual manipulation and was told my knee bones are “great” and there wasn’t anything the doctor could do, but was sent to a rheumatologist.

I even asked “Should we do an MRI?” and was told “If something was torn, you wouldn’t be able to walk.” When I asked how to deal with the pain I was told to cut meat out of my diet to curb inflammation. Oh, and go swimming. In Nebraska. In Winter.

WHAT?

So, off to the Rheumatologist I went. Spent a good hour or two there with blood work, examination, and knee aspiration (that was the most painful thing ever). Almost two weeks go by with no word. I finally reach out and I’m told “The doctor doesn’t think this is inflammatory or arthritis. Go to a pain doctor.” This was all despite oddities in my synovial fluid, a high sed rate, and increasingly high CRP with lowering kidney function.

WHAT?

So now, my walking is getting worse. The pain is actually at a level where I cry out when I stand up. Then it advanced to me crying just sitting in bed it hurt so much, no matter how much ice I used to numb it. My leg bones themselves actually radiate pain.

So, off to the pain doctor. He had the genius idea of ordering an MRI. The office, Innovative Pain and Spine in Lincoln, Nebraska, is one of the best doctor experiences I’ve had in years. Only they can’t fix the problem, they can only point me in the right directions.

So, off to the MRI place. I got an MRI at noon and by 3pm I had some answers. Got a call from the pain doctor who told me to GO TO AN ORTHOPEDIC DOCTOR. What’s more? They referred me to the same place that employs the doctor who told me to stop eating meat and that nothing was torn in my knee.

I now had an MRI that showed a complex tear in my right knee, joint degeneration, bone marrow edema, and fluid everywhere. And my left knee hurts more than my right knee, so Lord knows what we’re going to find in there.

Connected to COVID?

I did all I could humanly do to avoid getting COVID. Something in my soul told me getting COVID would be a life-altering experience, and no, it wasn’t because I worked in “the media” and believed the hype. I knew the facts, but had a gut feeling it wouldn’t be good for me. But it found me in what should’ve been the safest of places.

We are now on a path of learning about post viral joint issues and inflammation. It’s commonly known as reactive arthritis, but with COVID there are more and more cases coming out drawing a direct or wonky line between the two. We don’t know enough to say anything for certain, but there are enough instances it’s hard to ignore this could be the culprit of some pain you experience in the months following COVID.

What does it include potentially? Joint pain, swelling, inflammation, stiffness – all things I’m experiencing and have been for months.

“Can Your Hear Me Now?”

I’ve now been in extraordinary pain that has crippled my ability to live a normal life, and it could have been solved at the first place I went if I was just taken a little more seriously. If the x-rays weren’t allowed to tell the whole story. If my tears would have mattered when I said “What am I supposed to do with all this pain?”

On top of everything, my mother died from knee replacement surgery (well, the blood clots that followed were really to blame), so now to have my knees failing when I know this is the path that lead to my mom’s death?

Ugh. Mentally and physically excruciating, but I’ll be damned if I just write it off as “Doctor knows best.” I know my body best and you should know yours too.

When one doctor won’t listen, find one who will. I’m still on that path, but I’m getting closer to the answers I need.