When you're chronically ill, can gratefulness ever be a detriment?

Things I discuss with my therapist and other health updates...

Hi Readers, Another post from the present. What’s on my mind right now and how I’m doing… and the questions I face as I grapple with making decisions about my well-being.

For all those who have joined me as paid subscribers, I’m profoundly honored. You mean the world to me.

NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Also names have been changed for most of my medical staff.

Tuesday, April 25, 2023

Katherine Parker, otherwise known as my fibroid (yes, I named my fibroid) may not have been the cause of my abdominal pain after all. Upon a further check up into the core of my being, it seems a cyst may have ruptured. So while painful, I’ve recovered. New cysts have emerged. Let’s hope they cause less issues.

Meanwhile, my kidneys seem stable. Dr. Sherif says it’s a miracle they’ve repaired as much as this. Which isn’t that much in perspective, it’s just more than someone on dialysis.  I have about half the kidney function of a normal person. I’ve found it frustrating that I haven’t made more progress on my kidney function. Admittedly,  I’m pretty goal oriented so I keep trying to game it. Less coffee? Less protein? More water? What’s the trend on the weeks I had more sugar? 

It’s truly maddening. Plateaus. And then I stop and say to myself, “Do I need to remind you of the glory that is stability?”

And “Be grateful, Taylor.”

The other great debate at present is the infusion medicine. Should I stay on it or try going off?

In a couple months I will qualify as someone in “remission” which sounds great. But I don’t always feel great. My hair is thinning. I have joint pain and loss of strength. I’m exhausted. I’m immunocompromised with a constant recurring sinus infection. After the infusions, I’m under the weather for days. I also have brain fog. I used to be quite quick-witted, and now I reach constantly for thoughts. All of these are proven side effects of the drug.

On the flip-side, without the drug I might be at risk for relapse and that could decimate the kidney function I got back. Dr. Sherif does not want me to stop treatment. He’s worried another hit might be too much to recover from and I’ll wind up back on dialysis. I should add that I might end up back on dialysis anyways. I’m on borrowed time these days. Could be a year… could be six years. Could be a decade. Tough to say.

Zach and I google the studies and ask questions in patient groups, but every choice seems a gamble. And I should note, I’m in a subset of patients that doesn’t have a known genetic marker and those folks are the better candidates for going off the drug. Like one study of 34 folks without a genetic marker went off the drug, only one relapsed. But the study is small, and only a few years worth of data. And anecdotally, a handful of folks in the patient groups without a marker relapsed.

Staying on an immunosuppressant chemo drug long-term doesn't seem great either. Many people in the patient groups who have been on it for years complain of lots of issues, but also say, “hey but I’m grateful to be alive.”

There’s that word again: Grateful.

And I can’t ignore that many treatments end up killing people. I read of a woman with a transplanted heart who will ultimately die from damage caused by drugs she had to take so her body wouldn’t reject the new organ.

I carry all these worries with me through the day. I’m impatient to not be a patient. 

But then it dawns on me, at some point in this life, you’re a patient until you expire. I know it’s dark, but it’s true. 

My quality of life is amazing compared to where I was, but when does being grateful cloud my willingness to ask for better. When does being grateful become a detriment?  Or do I just not “get better” anymore because, well,  I’m chronically sick and that’s life? 

Acceptance sounds pleasant, but when does acceptance also keep us from progress? 

And then I weigh all the things I want to do and I think, should  I stay on this infusion until July graduates from high school? But that’s ages from now. Till I finish my book? Is that too short? Five years? Until another drug is made? 

Will a day come where I will be satisfied with my life and I’ll just know “today I should stop my medicine.” When I’ll put down my cup of tea, pat my dog’s head, and say, “I’ve done all I’ve come to Earth to do and I’ll go off this med and take whatever comes, if it comes. And live happily ever after.”

I’m not suicidal, but when does pausing a powerful treatment with myriad side effects add true value to your life?

I start an audit.

I’ve seen a lot of the world. Check. I’d like to see more continents: Africa, South America, Asia. Return to Ireland with my mother, and show her Kauai. I’d like to take July to Switzerland when she’s old enough to understand how cool it is to climb the mountain where her parents got engaged.  To renew my vows with Zach on that green hillside between white peaks. I long to adventure with July more, to retrace steps with her and see the world again through her bright hazel gaze.

I long to finish my book and have it published and find its way to you, dear reader. Maybe you’ll see my picture in the back, a nice smiling lady who’s been through some very hard times. Perhaps you’ll know that you too can smile and have a dream come true after life dealt a heartbreaking blow or two. 

I don’t know as I type this if any of these dreams come true. If I’ll ever give July a house. If I ever get to be a grandma. If I ever beat this disease.

But I suppose dreams keep me alive almost as much as the medicine. It’s as simple as that.

And dreams have come true already. I’m madly in love with Zach. And this life brought me July. Her soul chose me as her mother and my biggest dream orbits her smile. I hope she is proud of me and whatever happens, I hope she can find her own joy in this world like a beacon in the dark… 

…like she was for me. And still is.

Thank you to Richard Burwick, MD for your founding level donation! You not only supported the team saving my life, you’re amazingly supportive of my writing.