Love Your Kidneys

In 2019 I found out what’s been wrong with me for 13 years. The Mystery Illness, the thing I knew was there but couldn’t prove or name.

At some point, quite possibly when my son was born, I aquired a tear in my spinal dura. It leaked for so long that it became fused with a spinal vein. For years and years, I was dumping spinal fluid into that vein, keeping my brain and nervous system in a constant state of starvation.

My thoughts & feelings toward the medical community will be a whole other series of posts, something to explore if and when I am finally on the other side of this illness. Unfortunately, receiving a diagnosis was only one part of the journey. Right now, I am still fighting to FIX it. I have had multiple procedures including two surgeries–one in North Carolina and one in Los Angeles. Despite this, my most recent imaging shows that I am in fact STILL LEAKING. Most likely because (although I have not officially got the say-so from the medical community, I am de facto quite sure) I have a very fragile spinal dura, on account of my polycystic kidney disease, which–I have since learned–is a disease of the connective tissue.

My last surgery restored much of the energy and functionality that i’ve lost over the last year and a half (I no longer have to walk with a cane, amd I can drive, read, type, and carry on a conversation), However, I’m still in extreme amounts of pain. It appears I may also have a degenerative spine condition.

I am in the process of filing for disability. I do not run workshops or get out to literary events in my local community. My online magazine is on hiatus, and i haven’t written creatively in months. I am perpetually in a state of waiting for results of a test or for someone to get back to me for something. This week, the wait is for a new MRI of my spine so that the surgeon in Califoria and his team can determine if one of my previously existing leaks (yes, actually there were two) appears to be active. There’s a lot riding on Yes or No. Or maybe not. IDK. We have to take these things one day at a time.

In the interim, I am doing my best to build up my strength and to process my grief. In the midst of what I can only describe as a major body / medical trauma, I lost my Mom–and I lost her in a way that fucking ripped my guts out. I was absolutely shredded. And then, after several months of poor recovery and trying to relearn my relationship with my father, who is suffering his own body horror and grief, I found out we’re about to lose my one surviving brother.

Although we had been estranged for many years before Mom’s death, my brother is one of the most precious people on this earth to me. I was closer to him than I ever was with Shawn, and as much as I hate things he has done and who he can be, I can’t bear the thought of him going… and the fact that my nuclear family now consists of two in the Summerlands and one (if not two) with one foot out the door. Assuming I survive my own illness, it realistically won’t be long before I’m the only one left. And I’m not fucking ready for that.

Needless to say, I’m a tempest of grief in the teapot of my own little world. And I’m so very tired, and even still dancing every day with unceasing physical pain. I’m very much afraid the latest reprieve from my worser symptoms is only temporary–I felt close to death myself this time last year. I can’t bear the thought of going back there. I’m too in love with life, and too full of ambition and ideas. I have too damn much to do.

The one thing that is keeping the balance for me is this mantra:

My grandmother (who also passed away 13 months ago) is my spirit animal. My little Polish totem. I think of her all the time, and how she kept herself busy and healthy (relatively) until she was 97 years old. She was a force of nature, a spitfire who saw what needed to be done and did it. I have my sights set on emulating her; I want to wring the very last bit out of this life that I was given, no matter how sad or tragic pieces of it may be. I want to live to be an old woman who has made a difference. I want to leave this world, and my family, better than I found it.

Likewise, I’m trying to be as strong as I have always seen my brother to be: a warrior. In his case, it’s always been him against the world–that’s the tragic thing about his story. As for me, I just want to overcome the slings and arrows so that I can do good, fight the good fight. For everyone. That’s always been what I come back to, this feeling of hope and righteousness. In either case, you have to be fierce to win.

As for Mom–I’m only just lately realizing what I inherited from her, really. The dramatic part of me, the witchiness, the love of being the center of attention. The lust and passion. That’s all her. All things I feel robbed of right now, like I was robbed of her. That, too, is a whole other chapter.

But that’s it. Where I am right now, as we cross into a new decade. Hoping for better changes this time around.

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.
 

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