These past few weeks have felt like déjà vu. But, it’s not just a feeling, I have in fact done this all before. I wrote in August of last year about my struggle to heal, my impatience, my frustration and yes, my determination too. Now I have a whole new layer to add, incredulity, anger, resentment, and profound disappointment. I’m doing it all again. I’m back to the beginning.
I have been home now for almost two weeks and there is comfort in the familiar. Sleeping in my huge bed is amazing. Showering in my shower feels glorious. Having a coffee from my Nespresso machine rather than Starbucks is the epitome of happiness. Snuggling Oyster 10,000 times a day is pure joy.
I have always loved my home but now that it’s all mine, titled in my name alone, it is a symbol of independence and accomplishment. It has it’s quirks, but the home and the community it inhabits will always make me smile. How do you put a price on neighbors who watch your dog for more than three weeks? Or snow blow and shovel your sidewalks? Bring in Amazon packages? Come when you text late at night to help? I could do an entire post on the support I have on the street I live, and I will, just as soon as I can think and write about it without crying.
My neighbors are as precious to me as family.
Progress and a rude inner voice
Like last time, I am trying to gauge progress week over week, rather than day by day. I am resting after small tasks and I am building my stamina and endurance. Since my first day home, I have been able to go up the stairs at night, and down the stairs in the morning. It isn’t always easy, it certainly doesn’t look pretty, but I get it done. One of my physical therapists at rehab admonished me when I commented on my crappy form. As I was trying to go up stairs at rehab I said, “I know my form is terrible and I am not doing it right.” She quickly, and without malice said, “You are getting it done and that is all that matters.”
It occurred to me that I tend to discount my accomplishments because they are never good enough; I always want more. I have impossibly high standards. So if I made dinner for myself it was only mixing a salad, so that didn’t count as an accomplishment. If I made it up the stairs, that didn’t count because I didn’t walk left over right one stair at a time. If I played with Oyster on the floor, it wasn’t good enough because I still can’t walk him around the block.
I’m in a constant internal battle to do more, but rest. Try new things, but be careful. Ask for help, but try to do it independently. I’m mentally exhausted from trying to figure out what the best course of action is to recover.
My Oura ring and health metrics
I’ve mentioned several times that I really love my health and fitness tracker oura ring. My story and healing progress was featured on the corporate blog in January. As you can see from recent screenshots of the data, shingles knocked me back to the same place as bone marrow transplant last June/July. I’m hoping that I can recover at a faster rate than I did last time. I’m hoping my heart rate variability rises and my resting heart rate lowers.
Once again, I can’t fathom returning to work in less than two weeks. My job offers 22 weeks of short term disability leave but only 12 is covered by FMLA. So the additional five weeks I took, being in the hospital, rehab, and convalescing at home, is not federally protected. Anyone with chronic illness can relate to the fear and dual emotional tug-of-war when it comes to work. I want to work. I want to be productive. I want to be a contributing member of society. But what can I physically do? I don’t know the answer now, and I won’t know the answer when I return in April. It will be fraught with uncertainty. I tell myself over and over, rest is productive. I still require a nap each day. I’m sleeping 8-10 hours a night. I read, I lounge, I watch TV. But I am nowhere near to where I was. Last time I had three months to recover. I am trying to do the same in three weeks.
Anger and disappointment
I am attempting to work through complex feelings related to my medical care. I am writing a letter to my insurance regarding my appeal for my stay in skilled rehab. I am grappling with how my acute pain was managed in the inpatient setting. I’m angry at the time it is taking to wean off the pharmaceuticals they put me on to manage my pain.
Adding a layer, my healthcare is my employer. And I was denied coverage that everyone on my medical team said was the best course of action. I can’t even wrap my brain around that denial for several reasons. One, it was apparently copasetic — and covered by insurance — when doctors wanted to try an experimental treatment on me but the after care needed and recommended by that same team is not covered. Two, insurance says I don’t fit into their approval matrix, yet the smartest minds at the same institution are figuring out the care path as we speak. So obviously I don’t fit into a pre-determined approval matrix as we are in the process of researching this course of treatment. Third, individuals and executives who said “let me know if I can ever help” went radio silent when I needed them and their advocacy.
I previously said I was willing to endure additional pain and discomfort for research purposes. Now, I can’t fathom doing anything to help. This emotional response is unfair because my neurologist has been my fiercest advocate every step of the way and, it negatively impacts research to understand or maybe cure MS. So in fact, I’m hurting myself and others with this awful diagnosis, if I refuse subsequent medical research and imaging. But my argumentative nature and general stubbornness want to retaliate in someway. I want someone to be mad at.
I can’t overlook that my hand was held through the entire process of pre-approval, apheresis, and transplant. I was coddled and soothed for six months post transplant, then pushed into the wilderness alone. The level of health literacy required to advocate means that access to treatment and care is reserved for the elite. At my lowest point thus far, I was given the opportunity to appeal. As if choosing between making a meal for myself, showering, or physical therapy and writing an appeal letter is a fair choice. How can my employer tout innovation, empathy, and being a family, and then abandon one of their own?
My brilliant friend and colleague told me at the beginning of this that it was ok if I was just a patient and that I didn’t need to constantly try to improve the process. I have tried along the way, but I can’t turn off what I know from being an employee — how things are supposed to work and what our mission, vision and values are. I can’t compartmentalize being a patient and being a caregiver — they are inextricably linked.
Had I been on antivirals longer than six months, would I have still gotten shingles? I will never know. I was prepared to feel like a lab rat in this process. I knew it would be hard but I felt supported. I was not prepared to feel all alone or to be buried in red tape and insurance denials. I was not prepared to have to start again.
Small gestures with big impact
Lastly, because I refuse to end on a pessimistic note, thank you to my wonderful friends and family who have made my transition home possible. Flowers, brownies, books, dinners, in-home haircuts, voice mails, and texts warm my heart.
Chronic illness is beyond isolating, so every touch point matters.