Always learning

So much has happened in the last few days. And the sum of it is this: I feel like Adahlia — like a 2-year-old taking in, in, in — I am always learning.

First, I have made a few absolutely wonderful and indispensable friends in the DBA community. Similarly active in the care of their children, similarly interested in integrative medicine and finding and addressing the root issues of this mysterious disorder, I have learned a lot from their experiences. After comparing our children’s situations, I am a little in awe of the complexity of the situation we face, but I’m ultimately encouraged that this does all make sense, even as it might appear not to make sense. Much like you need to stand back from a tapestry to see its design, and if you stand too closely, all you will see are threads going this way and that.

One very interesting thing I’ve learned is that strep and herpes potentially occupy the same cells in the body. Now, I have yet to discover if this is actually true, but it was said by a doctor, and it was unsolicited information, so until I can look it up on my own I’m going to accept it as potentially true. Since some of what I’ve discovered about our illnesses has pointed to a virus, of the herpes family most likely, and other things have pointed toward bacteria and strep, I find this rather mind-blowing. And imagine, if both are in the system, in the same cells, and multiplying, could you blame the body for getting dysfunctional and becoming auto-reactive?

Another interesting thing I’ve discovered is that Adahlia actually has plenty of B12. Plenty, that is, in her blood stream. Actually inside her blood cells? Well that’s another situation altogether. Now of course there are a few forms of B12, and the methyl- form is most biologically active, and often recommended in B12 issues, because it’s already methylated and the body doesn’t have to perform a step that can be tricky for people with undetected genetic conditions (unrelated to DBA) that don’t properly methylate. Lots of people have this issue, and methyl-cobalamin (B12) does wonders for them. But that’s not the issue here. Even the methyl form doesn’t seem to do anything.

Biochemistry is complex. There are several cellular friends and steps necessary to bring B12 into the red cell from the blood stream. The good news is that her low cellular B12 is not a gut absorption issue. So we can rule that out. B12 is making its way into her blood stream… in vast quantities, in fact. It’s just that it’s kind of just stuck there, floating around, not getting to where it needs to go. The bad news is that I can’t really test her red cells directly, like I tested her white cells, to see exactly what’s wrong in them, what nutrients they lack, because all the red cells in her blood stream these days are donor cells. Yet, I can assume, from talking with my new DBA comrades, that Adahlia probably has a deficiency similar to another DBA child, who is responsive to steroids and so her red cells are her own, and whose red cells were tested for nutritional deficiency and found to be deficient in lithium.

Lithium? you ask. Bipolar disorder? Wasn’t Kurt Cobain on lithium?

Not exactly. That’s lithium carbonate. Designed by a pharmaceutical company and available by prescription. I’m talking about a natural mineral, lithium orotate, which participates in many neural functions, and is necessary to the biochemistry of the body, including the act of bringing B12 into red blood cells. Tiny doses of lithium orotate have been used to treat ADHD, Alzheimer’s, and many other conditions. Guess what? Lithium also inhibits viruses.

(And here again, we have yet another clue that points us to this disorder’s involvement with the brain.)

Lithium orotate can be supplemented with trace minerals (or ionic) minerals. In actuality, I’ve already dabbled with giving her trace minerals, as someone once strongly suggested it for her, but I’ve only recently started giving it to her on a regular basis, because of her persistent selenium deficiency. Selenium, a trace mineral, is also a necessary component to many reactions in the body, and it is used to activate antioxidant reactions and remove free radicals. With this new knowledge, we will keep using trace mineral supplements.

I’ve also learned more about the hormonal component of DBA, the use and side effects of steroids, the benefits and consequences of bone marrow transplant. The truth is that biomedicine is nearly entirely focused on treating the anemia of DBA, and has paid little attention to the many other symptoms and complications. It is a shame. The hormonal aspect of DBA is fascinating. The difficulty with detox and absorption, the imbalance of pH in the blood, the tendency to accumulate toxins and microbes — it is all very important and provides a clue to unraveling it as a disorder.

Adahlia is doing absolutely fantastic after her umpteenth blood transfusion on Tuesday. (Notice her doll is also getting a transfusion… The Dalmatian puppy was presented to her by hospital staff, they were giving them out to all the children in the oncology/hematology clinic.)


Her Ferretin is lower than last month, which is good, the sort of trend we want to see. She is growing like a weed. Last night, she counted her watercolors pigments in their tray, up to eight. Then, she tried counting backwards! She skipped six and went straight to five, realized she erred and stopped, unsure. Her dad was thrilled, told her that he understood what she was trying to do, and to keep at it.

She sings songs and dances, by herself or with me or with her cat. We have long conversations about whether we should wash the car or not, if the snow is coming and what that means, and if she can have a treat or do a favorite activity now, or if she needs to eat her food first.

Today, at dinner, she showed that she understands another kind of humor: Out of the blue, she picked up her fork, looked at her dad, shook her head and said: “dinglehopper.”

We laughed. We had just bought The Little Mermaid a few days ago, and she’s really taken to it. We said: “You’re right! It’s not a dinglehopper. That seagull was making things up! Do you know what that is?”

“Fork,” she said sighing. Then she grinned, ran it through her hair, and threw it on the ground.

The child amazes me.

We had a fabulous day the day prior to transfusion: we unexpectedly discovered that a friend was in town, and was staying at a house where there were horses and huskies. They invited us over, and Adahlia got to pet and feed horses, which was a big treat for her. And then, she got to go dog sledding. No joke! I stood on the back rails and steered, and she rode in the sled. It was incredibly fun!


Adahlia was hesitant at first to even get on the sled, but by the end, she climbed up on the rails, wanting to drive it herself. An absolutely magical time… The sort of thing that I feel so grateful to give her, even when it’s more an act of providence or fate than anything of my own doing. After all, who gets to drive a dogsled these days? A dream come true!

And let’s not forget that Adahlia did all this on the day before her transfusion, which means she had a Hb of 6.5. (Less than half of the red blood cells that you or I function with).


Today we made a paper dragon puppet for Chinese New Year at the town’s museum and then met our friends for an afternoon playdate at their neighborhood park. Adahlia was really sweet to the little boy, just shy of 2 years. She really likes him. For the past two days, she’s been talking about how she wants to trace his hand. She seems to want to share things she loves with him: her cat, her rocking horse. She had the biggest grin on her face just riding in the wagon with him. It’s wonderful to witness.

I’ve also learned, or reawakened, my appreciation of acupuncture. On Weds night, I had my first treatment that I didn’t give myself (ie, another acupuncturist did it for me) since last July, and it was sheer, heavenly bliss. My kidneys were very happy, and I slept deeply that night, awaking refreshed.

On Sunday night, I had managed to really mess up my right foot by twisting my ankle, and falling forward on top of it. That night, when I awoke to use the restroom, and when I woke up the next morning, I could not put my weight on it.

Great. I thought. How will I take care of her, lift her, and the transfusion is in 2 days?

I needed to do something and didn’t have the luxury to rest, so I put 2 needles in my left ear at the foot zone and began doing slow circles with it. Instantly, the pain was significantly reduced. Within a moment or two, I could put weight on it. In a few minutes, I could walk on it. An hour later, I was carrying Adahlia across a busy street, limping a little, but functional. And by that evening, I was balancing on the rails of a dog sled, my entire weight on that injured foot as I pushed vigorously with my left foot to help the dogs thru the snow.

Tonight Joe showed up with a severe muscle pull from overdoing it with a sprint workout. He doesn’t like acupuncture… and that is putting it mildly. Eventually he agreed to ONE needle. In his ear.

Instantly better.

Acupuncture is amazing.

So I cracked open my shonishin pediatrics acupressure text and began to read. I had tried treating Adahlia before, in her first year of life, but as I read, I realized how impossible it had been at the time. Back then, my brain was a foggy, muddled mess. The text seemed impossibly complex, the language difficult to follow. I could not focus on it.

Now I was reading the text. I could think about it. I understood it without straining, although there were still paragraphs I had to reread a few times. I reflect back and can only wonder at what carried me through those very difficult months — such a sick baby, and so sick myself, but in ways that no one, not even my family, or doctors, could see. I could only try to express my fatigue and pain, but such things are invisible to others.

As my new acupuncturist friend said, “Just think about the elderly, how they must feel trying to express what is going on with them, and their children and doctors writing them off.”

“Or anyone not educated in the system of medicine we’ve learned…” I replied. “If it weren’t for the fact that I knew better, that all these symptoms actually did fit together in the oriental medicine model, I might’ve been convinced that I was weak, or being a hypochondriac, or whatever. It was hard enough for me to believe myself… to keep pressing forward. If it weren’t for our education, I might have decided it would be easier to just let it go, and do what doctors wanted me to do, and tried to ignore it until things got so bad that it was too late.”

Remember, that in the oriental medical model, the kidney, brain and bone marrow are all considered together as part of one system. In the western model, they are very separate. But in the oriental medicine model, they are always considered together. They serve as the deepest layer of the body, the most critical reservoir, the place where yang is held and contained within yin, where it transforms to yin before it turns to yang again.

I can only thank the chinese herbs that we’ve been taking, that have been working to clear this strange infection-like, autoimmune-like condition from Adahlia’s body and mine, from our brains, and for the recovery of my faculties. For the fact that I can read an academic book again without my head clogging up and spinning.

And I’ve been putting it to good use. I actually found my old medical school biochemistry binder and have been going through my notes. I’ve read up on the herbs in Adahlia’s most recent formula: I wouldn’t have thought of them myself, but I am a novice looking at formulas devised by a world-famous expert, and they are perfect, absolutely perfect, for relieving her symptoms and the underlying energetic dysfunction. I’m 3 chapters into the shonishin pediatric acupressure book and, with the unequivocal success of my last (and only) recent attempts at acupuncture, I am reinspired to help her.

This is a crazy journey.

And it’s never about the answers.

It’s not about the conclusion.

It’s about learning.

About claiming yourself.

And so many things.

Valentine’s Day (VD-day) Joy

Surely, you’ve heard the joke… young or young-minded people referring to Valentines Day as VD-day, referring to venereal disease.

(Seriously? you’re wondering. Ok, Erika, this had better be good.)

But it IS good, I promise you. It’s better than good. It’s flipping fantastic.

Human Herpes Virus (HHV) is one of the most persistent and trouble-causing virus families on the planet, tiny little invaders that prefer human hosts above anything else out there, and they are damn difficult to get rid of if you catch one. But did you know there are at least 6 strains? Everyone is familiar with HHV 1 and 2 — when stressed, they show up as cold sores on the mouth or lesions around the genital/anal area, respectively.

Yes, they are horrid. The stigma around them is even more horrid, as a high percentage of the population actually carries them and has absolutely no idea, because they are symptom free.

But I’m not talking those guys. I’m talking about HHV-6, an almost unknown guy, yet he’s a guy who infects nearly all infants, that’s right, the vast majority of us, and nearly 100% of children in developed countries such as Japan. He infects through the nose, and from there he takes the express lane to your olfactory system. There, he can make a decision: activate, or hang out indefinitely as a latent pathogen. If and when conditions are right for activity, he sets up base camp, multiplies, and travels throughout your central nervous system. From there, he can infect organs at will. Yes, he can infect the brain, causing all sorts of problems. Yes, he can infect the bone marrow, causing bone marrow failure. Yes, he can infect kidneys, causing kidney failure. He’s also been indicted in several autoimmune diseases… MS, Hashimoto’s thyroiditis, and many others.

Are you thinking: Holy shit, holy shit, holy shit, yet?

As I read the symptoms of active infection, I realized they fit us perfectly: the stuffy nose I’ve not been able to shake since pregnancy, that Adahlia shares. The frontal and cerebral headaches I get when on my chinese herbs and it’s supposed to be clearing it out. My autoimmune-like symptoms and signs: The mysterious slow degeneration of my spine that a number of practitioners (massage therapists, acupuncturists, and even an extraordinary tai-ji instructor) has noticed and I’ve been watching since 2008. The heat, throbbing, and pain that flares up in it also most notably since taking the herbs, to such a degree that there have been nights I can’t sleep. The feeling like my kidneys have sandpaper in them (inflammation) and progressive loss of function, which shouldn’t have happened to my left kidney at all, and not even to my right, if it was simply swollen from occlusion to the ureter. The drop in 2 of 4 complement proteins that are the markers of many autoimmune diseases. The other infections in my body that have cropped up recently or in the last several years, because, well, my poor body is overwhelmed. And the list goes on.

It can cause bone marrow failure.

It gets better.

Or maybe worse, but better if its true, because then everything is explained.

HHV-6 can integrate into chromosomes.

That’s right. The little devil can work himself into your chromosomes and be passed from generation to generation, along with all the other genes.

Holy shit, holy shit, holy shit!

Yes, it explains that angle too.

Wanna know the kicker?

It’s treatable.

Yes. Antiviral therapy can knock it out.

(Keep breathing.)

Oh wait, there’s more.



You don’t need a bone marrow biopsy to discover if you have an active infection, or in my case, a kidney biopsy.

It’s diagnosed thru a blood test.

A complex blood test, but a blood test nevertheless. Just a little needle stick.

Digest THAT, my friends. For it could not get any better than that!

At this point, I could get upset at how many times I’ve insisted to our doctors that there is a connection between Adahlia and I’s conditions. That I know she’s fine, that I feel in my bones she’s under attack, that she has an infection (including the first time we rushed her to the hospital near-death.) That a surgery won’t fix my left kidney and other strange symptoms. That the Chinese herbs aren’t hurting me, that they aren’t a threat, that they are doing something helpful to a latent infection… stirring it up, trying to change the terrain so it’s not happy in my body anymore, and kick it out.

I could get upset at myself for not investing this virus family more thoroughly earlier, because it was they I originally first suspected, and they I have kept coming back to. For needing the nudge from another DBA mom, who said to the DBA group in reply to a completely unrelated post (and I’m paraphrasing), “There’s this virus called HHV-6 that I’m investigating on behalf of my son.”

But oh, when I read that, did my heart skip a beat! And how my heart leapt when I began to read about the virus online.

I’m so grateful that I read that post… That for whatever reason, I chose to skim all of the many comments posted to that particular thread, which is something I almost never do.

Yes, I could get upset. And maybe a teensy part of me is upset at myself for not trying harder, not researching more. For how much we’ve endured, how much we’ve lost.

But you know what?

I think it had to be this way.

And for all my spiritually and mystically inclined friends, and all the countless more people out there who want to believe in something, but just can’t seem to find anything, let me relate a quick story to illustrate.

Last year, about this time, I did something I have only done on one other occasion: I conducted a First degree Usui Shiki Ryoho Reiki Attunement for just one person. She was a friend of a dear friend, and for some reason, I felt I should do it. I told her nothing of my daughter and I’s conditions until after its completion. As we sat at the dining table, her mouth fell open and she asked if she could consult her sprit guides.

Now, everyone has gifts. Some start amazing businesses, some lead armies, some are mathematical geniuses, some are virtuoso artists, some are incredible parents.

In the past couple years, I have realized I have some rather extraordinary gifts myself.

Talking to spirits, however, is not one of them.

But, who am I to say that someone can’t be gifted in it?

So of course, I said yes. She closed her eyes, looked off to the side, and said that Adahlia could make her own blood.

Yes, I know that, I said. And she has, just not enough of them.

She will be cured this time next year, she said.

And she said other things, the majority of which either rang true, or I didn’t want to believe, or I already knew, either on a conscious or soul level.

It was nice to hear confirmation that Adahlia could heal from this, but a year was so far away. My heart sank. Surely, I could cure her before then?

My friends, I’m not surprised that I’ve been pointed to this virus at this particular time. We think we control all sorts of things… even the whim of what posts and threads we read. But we don’t. This is when she would be cured. Things had to happen between then and now. There are bigger things at stake than our own desires.

There are no accidents.
Friends, this is it. This has to be it. This is the final hill. We can do it. The 3-year marathon is coming to an end.

And I can’t be upset because I’m giddy, I’m laughing, I’m hugging Joe and patting his face, who keeps himself contained because his poor heart just can’t stand more roller-coaster hope that ends in more bad news. He won’t celebrate til we are tested, treated, cured.

I admit, I’m not looking forward to fighting the battles that will be necessary to convince someone to test her, and myself, for this damn virus.

But this is it. This is the battle to end all battles. This is when we paint our faces and make an extraordinary speech and charge.

This isn’t just VD-day.

This is V-day.

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.