Love Your Kidneys

This photo was taken at a reading earlier this fall, the release party for an anthology I’m excited to be part of. It was a good night. I had fun. I felt good.

But also I didn’t feel good–nights are hard for me, and that was a higher-than-usual pain night. I spent half of it hiding in dark corners trying to out-wrestle a migraine. I left early. I crashed the next day.
When I look at this photo, what comes to mind is the 10 of Wands. In tarot, this is the card of the over-burdened worker: bent, weary, barely able to take another step. This dude is not well.
This is the truth that I have come to: I am not well.
Fanny needs to take a damned load off.
For ten years, as of this December, I have lived with chronic daily migraine. Some days are better than others–but, to be clear, I have had a migraine every single day. Every day. For a decade.

That takes a lot out of a person.

To anyone inclined to message me with well-intended suggestions, please don’t. I’m not a fan of unsolicited advice in general, but particularly about such a subjective experience as disability. Whatever it is–copper earrings, CBD oil, botox injections, your boo the chiropractor–rest assured, I’ve heard about it.

What you may not realize is this: over the last ten years I have been through multiple medical marathons trying to find either a cause or a cure. I have a backlog of really awful stories about doctors and panaceas. I’ve got a file cabinet full of those stories, actually.  And even if I haven’t yet tried your thing, please believe that I’ve been there, done that. If it’s that supercalifragilistic, I’ll find out in my own time.

Right now? I’m tired. Also I’m still very sick. Worse than when I started.

For 8-9 years out of 10 my migraines were fairly well managed, thanks to prescription pain medicine–not ideal, no, but sufficient to get me through the long crisis of having an atypical child with the world stacked against him. And then a surprise child who has her own net of tricky needs. I got by for a very long time–hell, thrived even. But that strategy has run its course.
Now, in addition to the daily migraines that are at least mostly kind-of managed, I’ve developed a new type of daily (yup daily) Super Migraine that quite literally stole a year of my life. These migraines are so bad it can be hard to even get out of the chair, and they don’t give a squirrel’s ass about my pain meds. They laugh at my pain meds, Ha Ha, and then they just go on drinking my life’s blood from my skull like fucking Pain Pirates.
Also. As I’ve mentioned here and there, I am in the early stages of the same kidney disease that my uncle died from and that my mother is dying from. So far all of my blood panels come back good enough, but my kidneys are very large and cystic and painful. They slow down digestion, pick fights with my girlie-time problems, and feel generally like a sack of rocks strapped to my torso.
Also, also: I have injured discs in my neck and my lower back. They flare up fairly regularly.  I have neuropathy and widespread pain that is likely related to the spinal stuff. Spice of life.
None of this is brand-new. The thing is, I’ve been focused on other things (my kids and my career) for a long time, without enough spoons left to give gentle, sustained care to these things in me that are hurting.
I think this may be the root of the writer’s block I’ve been suffering since last summer: my body is in trouble. Real trouble. And if I spend all my time in my mind, just putting band-aides on the problems, things are never going to get better.
BUT. The good news is, I think a change is finally before me. Having both kids in school full-time is a huge thing. Having my oldest finally stable for the first time since toddler-hood–that’s also a huge thing.
Huge as in… I have space now. I have time. I can breathe.
Godz willing, maybe I can even heal.
So that’s what I’m going to be working on for the foreseeable future: cultivating a better relationship with my mortal coil. I suspect I will be posting a lot about it. Fair warning.
I’m starting with honesty. I’m sick. I hurt–a lot. There’s a lot I can’t do right now. I need to slow down, take on less. I need to ask for help, or say no.  I need to listen to my physical self and speak for it. I need to be honest.
And honestly, I feel lighter just admitting this–to myself, to my family, and to the You.
So thanks for that.
In 2014, my friend Ro received the gift of a kidney from her brother.   We’re featuring her story here and on our Facebook page, A KIDNEY FOR SHARON.


ro pics
“I was on the transplant list, like thousands of others in the New York area, but my doctors were not optimistic…  I was told the longer a person on dialysis waits for a kidney, the harder a full recovery can become. The best chance was for me to find a living donor as soon as possible.”

I had been diagnosed with Systemic Lupus back in 2000, after a few years of arthritis-like symptoms. It was in 2004 that tests uncovered that the lupus was starting to impair my kidneys. Kidney damage is a very common long-term problem, and the effect can really vary person to person. I got hit hard: my kidney function was about 60% when I started treatment in 2004 and it dropped rapidly from there, leveling out at 40% around 2007.
I was hoping the stalemate would last forever, but my kidney started declining rapidly again around the end of 2012. It affected every other system in my body: my bones weakened drastically and I suffered repeated fractures, my bone marrow stopped producing red blood cells and I needed two blood transfusions, the anemia got so bad that I needed additional shots every other week for my body to produce enough red blood cells to barely function. I gained weight, slowly at first, but then my legs swelled up, pressing against my skin like a drum. I didn’t know until I was admitted that it was water weight from my kidneys not being able to pass fluid out of my body.
It was right before Thanksgiving when I went to the hospital and was told that my kidneys were shutting down; my organs were literally drowning in my own fluid. My heart and lungs were springing internal leaks from the pressure. They took me to surgery, implanted a dialysis catheter in my chest and started hemodialysis the same day. They let me go on Thanksgiving, after arranging for me to continue dialysis at a center near my home.
I went to dialysis for three hours, three days a week for seven months. All that time I had to wrap my catheter in plastic to take a shower, monitor every single drop of liquid that passed my lips, and strictly monitor what I ate. My weight dropped from 220lbs to around 185lbs – and it was all backed-up fluid. I was frequently nauseous, and often weak in the beginning. My first catheter got infected. The infection got into my blood stream and threatened my heart, so I was hospitalized for 12 days to cure it. My mother spent her birthday that year in the hospital with me and my whole family missed Christmas with my aunts and cousins that year.
I didn’t even realize how it affected my family and friends. Apparently my brother cried the first time he saw me hooked up to the machines. My mother was half-hysterical the whole time, only finally starting to relax once we had a routine and I was showing little signs of improvement. My friends didn’t even see me for several months and were genuinely worried that I wouldn’t pull through.
I was on the transplant list, like thousands of others in the New York area, but my doctors were not optimistic about me getting a kidney anytime soon. And I was told that the longer a person on dialysis waits for a kidney, the harder a full recovery can become. The best chance was for me to find a living donor as soon as possible. Both my parents tested and were disqualified. My father spread the word through his radio show in the hopes someone would step forward. Finally, my brother decided to donate and he was found to be a perfect match.
I had my transplant on May 28 2014. We had our 1 year anniversary on May 2015. The changes I’ve experienced have been enormous. Little things that were so common while I was sick have vanished and I’m on less medication than I’ve ever been before. And while a transplant, like dialysis are not cures – it’s a second chance that I didn’t think I’d get.