Fighting for our lives

Good people,

I want to take a moment to say that I am SO sick of fighting. I just want things to be easier. Easy-peasy.

But they are simply not. Not at any step of the way. Gosh-darn frustrating, it is.

Well, that’s not entirely true. Sometimes, we get a really great needle-stick and no IV complications, and that’s awesome. So I’m not ungrateful for that. I’m just saying that by-and-large, all it seems that I ever do is fight. And Id so gladly go along with the “flow” but it seems that would drastically impact or shorten Adahlia’s and my life, and so I can’t.

Let’s talk about something else before we talk such business tho. In some circles, pleasant small talk is a necessity. So much nicer than fighting. So let’s be nice for a moment.

Adahlia is, all things considered, doing great. She’s started to be able to explain her nightmares. They are always adorably tragic — various favorite characters (some of them are even “villains”… like me, she likes things with sharp teeth) from her kid movies are in peril. I hold her as she cries, and explain that they aren’t dead, they are ok, that they live forever, and that we actually all live forever, but that forms change.

Adahlia tells me these days about everything she loves. Sometimes, she gets overwhelmed and just says: “adadha loves!” In some ways, she is the sweetest thing. When the old turtle in Kung Fu Panda dies by dissolving into cherry blossoms and floating up to the stars, she welled up with tears and howled. I had to turn it off and explain things before we could watch more. It was the first time she cried at a movie… And I didn’t even realize she would understand he was dying. She really loves that old, wise turtle.

She can also be incredibly violent and cruel. It’s fantastic, this whole process of parenthood and watching someone step forward. There are moments when I feel the pull of parental pride. But there are more moments when I witness her and am struck by how much she is her own being, how I was simply her transport ship, and now I’m her guide and guardian through a place rife with paradox and contradiction, at a very pivotal time in her life, her childhood, and I’m awed and humbled at the power of that.

Adahlia used her first metaphor the other day, describing one of her stuffed animal’s eyes as apples. And they are– they sit on his head like two big, juicy Fuji apples. I was thrilled! Her first metaphor.

Amongst Adahlia’s loves is our juicer. She pets it, kisses it, builds it a tower of Legos and presents it to it, presses her cheek to it and talks to it, points to various parts of it and and tells me that it has feet, and a nose.

She still loves swinging – we have 3 variations on underdogs. There’s the normal underdog. There’s the spinning underdog. And there’s the flying underdog, which is basically a normal underdog but she holds her arms out like she’s flying. Yesterday evening, as she swung with arms outstretched and I shouted “flying underdog!” she said she was an airplane. When I asked what color, she said she was purple, with a pink nose, and yellow mouth.

Adahlia loves to hide and have me find her. She is more of a climber than ever, proving what I said about her as a tiny infant correct. She has accomplished and is working at mastering several different climbing apparatuses at the playgrounds, and sometimes she asks for a hand or help, and I try to spot her as unobtrusively as possible. But, once she gets it down, she makes me stand far away, so she can do it on her own. It’s a bit nerve-wracking when she’s low in blood and suspended 5 feet off the ground, balancing over metal bars.

Adahlia also loves to pretend to be a cat. Recently she was a blue cat with purple spots and pink eyes. Every day, she strikes me with the keenness of her imagination, creativity, and intelligence.

She is both a very gentle and very violent soul. She is extremely sensitive to any discussion or critique of her, any supposed failing. I was the same way as a child, and so I’m trying to be very mindful with her. There is no mocking in our house. And if anything crosses a line, we apologize for hurting, rather than ridicule, a person’s sensitivity.

Sadly, this is a more novel way to live and treat others than some might realize.

I suppose now is as good of a time as ever to say that soon I will probably discontinue the more personal antidotes on this website. They are my favorite, and I love sharing them. But the truth is that I never intended to have this website, or any web information or pictures posted of her, because I understand how isolating and disempowering sharing of a child’s private experiences can feel, even when it’s “just shared between mommy’s friends,” let alone the world. But I have done it because of her disorder, and I’ve therefore shared (and thus potentially isolated, disrespected, and disempowered her) on a larger scale than anyone’s ever shared information about me. Truthfully, I never imagined I’d still be fighting for her at this point– I figured we could cure her by now — and so I figured it would be over by the time she would be able to be wounded, and then I could explain myself, delete everything, and apologize. But, that clearly is not how it’s going to be.

So, as helpful as this website may be to furthering awareness and supporting families, it may have to transform soon.

Now, let’s get to the point.

Yes, I’m still fighting for her. I expect Adahlia needs a transfusion rather soon, and she’s scheduled for next week. She’s exhibiting all her classic signs of not feeling well and needing blood. At her transfusion, I will get the opportunity to discuss her nutrient deficiencies with her hematologist. I wish I could just go and state my case and be heard, but I’m sure I will need all my wits for a strange dance of medical knowledge showmanship. It almost never goes as easily as Id like. And it continues to blow my mind that I have to fight so hard for her.

And I’m still fighting for myself. As if to prove that the VA healthcare system is the worst in the nation, I am forced to return tomorrow. I called them last week with symptoms of a UTI. The actual interaction was much more astounding than what I have the energy to relate, but suffice to say that after congenially telling them my symptoms and insisting that after 5 stent surgeries I know stents, and this is not normal discomfort, that something is perhaps wrong, the receptionist finally agrees that that something indeed might be wrong with the stent that is draining my kidney, and calls me back to say the doctors want me to go to the ER, so I went in, peed in a cup, and…

…heard nothing.

The kind receptionist calls me today to say they still can’t give me a surgery date yet to fix the problem that has required the aforementioned 5 stents, even though it’s supposed to be within the month. I say that that’s pretty inconvenient for me, because I have a lot of planning to do and people to arrange to help me with the surgery and recovery, but okay. I then mention my urine culture, that surely it’s negative since no one called, but could she just check? After a moment, I am informed that there are actually over 100,000 strep b bacteria in it. The receptionist notes that my specimen was flagged but that they flagged a doctor who no longer works at the hospital, so effectively, no one was notified. She informs me that she’ll send a note to a urologist currently on staff, and he’ll get back to me if they think I need antibiotics.

I have heard… nothing.

People, friends: I have 19% function remaining in my right kidney. I have 80% remaining in my left kidney. I am 35 years old. I have a high pain threshold, and at least a little medical education. I have a stent in my kidney, which could allow infected urine to backflow into a barely-hanging-in-there kidney. I cannot afford any more loss of function. I am the sort of patient group that you worry about getting a UTI, not let go untreated for a week.

I am not the boy who cries wolf. I am the boy who battles the wolf by himself for days on end using everything he’s got, until, bruised, bleeding, battered, and nearly beaten, he finally calls for reinforcement.

Only for the reinforcements to take their own sweet time arriving.

Good news, good news, where’s the silver lining?

Well, I have been on a very rare chinese herbal antimicrobial since late January, and my symptoms started shortly afterward. An herb so rare that my world-renown expert herbalist testing me for herbs, looked at me sideways and said: “You need a very rare infection-fighting herb. You and your daughter both. Where did you get such an infection?”

So maybe, and it’s possibly a long shot, this herb has made my body a less-than-desirable host, and kicked up some latent strep b infection and is flushing it out of my kidneys. Maybe that’s what’s behind the glomeronephritis and autoimmune-like symptoms and loss of kidney function. Maybe it was activated when I became 7 months pregnant and my big belly occluded my right ureter. After all, I did have several cases of strep as a child. In fact, I even developed scarlet fever. (And yes, I’ve told all this to all the specialists.)

Maybe, and perhaps it’s an even longer shot, it was transferred to Adahlia while she was in my womb, or it was just the stress of what I was going through while she was in there, but it triggered something in her genetics, deep in the machinery of Adahlias bone marrow, and has caused a cascade effect that has resulted in her anemia.

Or maybe not. Who knows? If I’ve learned anything in the past 3 years of this ridiculous ordeal, it’s that we don’t know a lot more in medicine than we know.

It’s a high-stakes guessing game. Everyone is operating off theories and probabilities.

I’m just so darn sick of all this fighting. It’s just that there’s no alternative… Or rather, the alternative is handing over my fate to people that don’t actually have answers and seem a little inept at times, the acceptance of my potential demise at their hands. And medicine administered to my daughter that I don’t believe is right for her, yet. I’m just not ready to do all that, yet.

Not that I’m judging them for ineptness. Not really. At times, I’m more than a little inept too. I’m just aggravated that they pretend like they’re not. It’s typical authority-figure power-blindness.

And it’s a paradox: I practice surrender to a higher power. Yet I won’t surrender myself or my daughter to man.

So I have to keep fighting. I suppose I will have to drive down to the VA tomorrow and spend some time with Adahlia in the ER, exposing my immune-compromised daughter to hospital pathogens, insisting I get antibiotics, and I will have to be ready with the appropriate dose, type, and duration, or who knows if what I will receive will even be effective. Then I will return with her the very next day to meet with the surgeon and hopefully obtain a surgery date to repair the ureter before I need the next stent replacement. And no, I can’t leave her with a sitter because she is low in blood and cries unconsolably and unendingly for me if I leave her for more than 30 minutes with her father, let alone 3-5 hours with a sitter.

I could just wait it out, tough it out one more day, and do it all on Thursday at my appointment with my surgeon, but now that I know I have an infection, do I really want to risk exposing my kidneys to another day of potential loss of function?

Did I mention I was sick of this yet?

But the alternative is worse.

So, here I go.

I just hope I can get some sleep, first.

But I started writing this at 2:15 am and now it’s 5:15…

Time to go.

One thought on “Fighting for our lives

  1. Hi Erika. So much in that post, so much in your lives. Little for me to say, but I want you to know I’m reading, celebrating Adahlia’s imagination and joy and stepping forward, and praying for you both.
    Leilani

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