What’s Your Ripple?

I see a lot of discussion on Covid lately, and I just want to take a moment to allow you to see a different perspective of it. A lot of the focus is on covid itself, and how serious the virus is versus how seriously we should be thinking about what covid is impacting as a larger ripple effect, and I suppose this is my little ripple.

I had already spent nearly a year in isolation when covid happened. I then spent the better part of last year in the hospital and for most of it was allowed no visitors, or one or two designated visitors only. I still have to live in isolation because of my immune system, so I have now lived as a hospital hermit for almost two years.
For nearly a year I have had to attend almost every doctors appointment, surgical procedure and test alone- highly anxious situations for me with so much opportunity for my chemo brain to forget information or to struggle with my assertiveness and strength to advocate for myself and my health. In many of these situations I have been in a wheelchair or using a walker and it has been an extreme struggle for me to do these things unassisted. At one point I got stuck on a public toilet and spent a solid ten minutes thinking I would die there. 🤷🏼‍♀️

You may be thinking- can’t you just bring a caregiver every time?
Sure. If you contact the head nurse, then they get the doctors permission, then you have to fill out forms and they send the forms to the front to verify your caregiver upon entry. This must be done for every single individual appointment. At least 50% of the time they don’t even have the forms you wasted two hours sorting out when your arrive, or your caregiver changed last minute and their name isn’t the one on the forms creating complete and utter chaos.

When you have multiple appointments every week that you can’t even drive yourself to so you’re arranging rides, constant medication changes and trips to the pharmacy and you’re navigating between four different hospitals and 8 specialists and never ending testing, rehab and case management…essential caregiver forms eat my last freaking shred of sanity and rarely get filled out unless I’m essentially comatose. I doubt most would feel differently.

I have had to hear the words:
“You have Necrosis in both hips and shoulders”
“You might lose your leg”
“We are out of conventional options and if we can’t find a way to get rid of your CMV you are going to die”
“You had a paralytic nerve condition that went undiagnosed causing you to need to learn to walk and use your hands again”
“You may have a secondary form of cancer”
“Your kidneys are permanently damaged and nothing can be done now. They will eventually fail and you will need dialysis or a transplant.”

Either completely alone in a hospital room, or over the phone where the doctor cannot see my face or feel my emotions. I didn’t have my husbands hand to hold. Or my moms. I was just alone. I get it- I’m an adult. I’m a big girl and I CAN handle it…. but why should I have to? Why should I have to keep showing up and facing the hardest moments of my life completely alone?

My kidneys are essentially failing and I’ve never even met my nephrologist one time. I’ve only ever spoken to him on the phone. He can’t see my weight loss, my rash, my pallor…he makes clinic notes based off what he sees on paper- numbers that did not tell a whole story and led to a delay in my biopsy. He makes notes off what he hears, and not what he sees in person, leading to errors like “she has lost 8lbs in 8 months” vs “she has lost 80 lbs in 8 months”. It’s not his fault… but there is a significant difference- no?

This means I have to diligently read all of the clinic notes in my online files, from all of my doctors to ensure that this sick game of broken medical telephone doesn’t mess with my health any more than it already has. The ball has been unintentionally dropped on me by a health care system overwhelmed with COVID so many times I no longer feel safe entrusting my care into this operation without external checks and balances.
My hip has been broken for almost 8 months. I’m in excruciating pain a lot of the time and oftentimes can barely walk. I had to literally learn to walk again after being nearly paralyzed by Guillain-Barré syndrome- while one leg recovered from wound surgery and one had a broken hip. I am currently unable to have my hip replaced because my existing comorbidities from having cancer require an ICU bed to be available for me in case of complications…. and they don’t have any because of COVID.

For me, COVID isn’t about the fact that it ‘is often asymptomatic’, or that ‘children don’t get affected as intensely,’ or that ‘We are all going to get it anyways’. It was scary to me, the idea of dying of COVID. But now what is far scarier to me is not dying of the virus itself, but from the fallout of the quality of health care for every day people, and people like me, who have complex healthcare needs that are greatly being impacted by the pandemic.

I want to make it clear that many peoples situations are far worse than mine, and also this is NOT a dig at nurses or doctors. They are doing their jobs the best they can in extremely challenging situations and I know that my team has my back so hard. All I am saying is that both our communities and health care systems were not designed or prepared to support the weight of this type or expanse of viral spread and it was relatively unavoidable that after trying to carry the strain for some time that it would trickle down to patient care eventually.

So the next time you wanna have a party, or ignore the ‘rules’, or complain about ‘lost freedoms and rights’-
Try to remember that these rules are in place as a desperate attempt to keep a delicate situation from getting out of hand and impacting the normal function of healthcare and society any more than COVID already has. It’s not about you. It’s about US. We the people. We are a TEAM. We all have to participate in following the rules and using common sense or we will lose the fight and this will continue to drag on.
I know it’s annoying, and stupid and I’m lonely and bored and I hate masks too. But please for the love of bacon…. just think about me and everyone like me. I really want to walk again. Remember the ripples ❤️ What’s your ripple?