Abracadabra

                   

Yesterday was a challenging day. I received news that my latest blood tests showed extremely low electrolyte levels (for those new to the blog, I have a kidney condition that I try not to whinge too much about. Sometimes I’m successful, sometimes not) and this immediately sent me into a panic spiral largely characterized by moping about while obsessively wringing my hands and shaking my fists impotently skyward.

I stopped by to see Adam at work and LO! more bad news of the business variety and more panicking and hand-wringing and fist-shaking.

As the day worn on I managed to get my head out of my arse and talk myself down from this panicked, “Everything is going wrong our baby isn’t getting what it needs and we’re going to end up homeless and alone” circuitous train of thoughts running through my head, and I did what I always do when I’m stressed, I made a PLAN.

Plans are my own personal talisman, if I have a plan, suddenly everything is ok, even if that plan reads simply “Stop panicking.”

Yesterday my plan was a little more involved, consisting of a phone call to my Nephrologist and a schedule for more massive doses of medications and increased monitoring and the potential for weekly IV’s (but we hope it won’t get to that point) and then besides the medication, the plan included several deep breaths as well as a silent incantation of “Everything is going to be fine. Everything is going to be fine.”

Because it will be, right? It has to be.

Last night Adam and I were discussing things like what to do with his business and our finances, and what life is going to look like in the next year with one income instead of two. Perhaps it was the way my voice kept creeping up into the upper registers or my anxious hand gestures or the way I ended every sentence with “Yes, but what are we going to dooo?” but he somehow picked up on my panic (intuitive man, this one).

In a surprisingly sincere gesture for someone who spends 98% of his time joking, Adam looked at me and said, “Let me worry about the business stuff, you just focus on growing a healthy baby.”

And I waited half a beat for some sort of joke about “…and bigger boobs too” or “…and by business stuff I meant business time” or some such Adam-style rejoinder, but none came. Just that same calm, resolved look.

                     

It occurred to me that I wasn’t the only one with a plan. In our own way we are both trying to cobble together some idea of what life will look like in 5 months, and although we weren’t waiting until I became pregnant to make big life decisions about the business and moving and buying a house, something about situations like these seems to invite just that sort of change. If not now, your reasoning goes, when?

As all of this was running through my head, I looked at him, this man I’ve loved for ten years and I decided that yes, okay. Let’s go along with your plan.

I’ll let him worry about the business stuff, confident that he is fully capable of making decisions in the best interests of our little family, and I will worry about the baby stuff, confident that he trusts me to make decisions in the best interests of myself and our son or daughter.

And surprise surprise, today I feel much better. And it seems that our two-fold plan has pleased the gods or goddesses, because LO! when I went to take a washcloth off the shelf this morning, something shiny slipped out and fell to the floor. Picking it up, I realized it was my wedding ring, the one I lost four days ago.

Everything is going to be fine. (It has to be).

The Pit

Anatomy Kidney Print by PRRINT on Etsy

One of the best times during my family’s recent visit was when my little sister Lizzie and I were driving home from dropping the rest of the family off in the city. The drive was about an hour and a half and we easily fell into conversation. Familiar cadences of speech, the easy back and forth of two people who have been each others almost constant companions for more than two decades.

Lizzie also has Gitelman Syndrome, my kidney condition. About half of our conversation circled around this issue, touched on it, danced in and out if its periphery.

Its influence is impossible to truly separate from any topic, and she is one of the few people that understands that.

We spoke about her recent visit to her nephrologists, where he gently chastised her for being too hard on herself, underestimating the extent to which this illness affects her life.

This resonated with me.

The other night after catching up on my blog Adam looked at me, having a particularly bad day, and said that who I appear to be in my writing and the person I am in real life are often two entirely disparate identities.

I agreed. I agree. When I feel shitty I generally just don’t write. Part of it has to do with how many people I know in “real life” that read this. Part of it is that I don’t think it’s particularly entertaining or original to write entire posts about feeling tired. Or wishing I was healthy.

I don’t think that these types of posts are inspired or inspiring.

It’s easy for me to fall into wallowing, so I try and avoid that pit altogether. But Adam encouraged me to write anyway, “It’s your life” he said, “That’s what people want to read about”.

So this is what Lizzie and I talked about on that drive:

  • Whether or not we would die sooner because of the strain on our organs from being chronically deficient in electrolytes. How no doctor can answer this for us because the disease is so rare that no longitudinal studies have been done.
  • What that would mean for our husbands, our future children if it were true.
  • The frustration of not being able to differentiate between a symptom of Gitelman’s and a facet of our personality.
  • Not wanting to whine, but not knowing when to say no, when to take a day off.
  • How to walk the line between not wanting to seem lazy, and properly monitoring our condition.
  • The tears. The worry. The constant, ever present anxiety.
  • The thoughts that whirl around and around, always in the back of our minds, never quite resolving themselves:

I have a headache. Was it because I slept funny or because I’m low on potassium?

I should go get my bloodwork done. Will I have time before I go to work?

Did I take my pills? I think I remember taking them but was that this morning or yesterday? Should I take more? I’m almost out and this is the second time I’ve refilled my prescription his month, can I really spend another $60?

This sucks. I want to cry.

Why am I crying so much lately? Am I depressed or do I just need more magnesium?

Am I going to end up in the hospital this weekend?

Stop it. Stop feeling sorry for yourself. Get your shit together, it’s noon and you’re still not dressed.

Yes, but I’m tired.

You’re always tired.

This disease has no visible manifestations aside from the occasional IV bruise, and in many ways this is a blessing, but I also find myself constantly second guessing what I’m feeling, because there’s no objective way to assess it. It’s invisible.

Am I tired because I’m running on less than 50% of the electrolytes of a normal person? Or am just lazy? Is my sometimes inability to cope with just, life in general, indicative of a inherent defect in my character? Or is it the disease? Do people think I’m lazy? Or do they recognize what I’m working with? If I say something does that sound like I’m making excuses? I don’t want to be that person.

This, this whole post, sounds like wallowing to me. Moments like this I hear my Dad’s strict voice inside of my head telling me to buck up and get over it. So many have it worse. And they do, they do. That knowledge just adds to the guilt.

There are cancer survivors giving inspirational pep talks across the country yet for me leaving the house today seems like too much work.

Most days I feel fine and I almost forget I have a kidney condition at all. But this day is not one of those days. This day finds me in the pit and it feels shitty admitting that, especially given that one of my resolutions is to become a more positive person, but here we are. The loop starts again:

Am I really breaking one of my resolutions just four days into the new year? Can I write this off as being beyond my control? IS it beyond my control? I think I need to take some more pills.

More pills. More pills.

I feel like this post is okay because another one of my resolutions was just to be okay with where I am. Today, today I’m struggling. That’s okay.

It’s temporary, hopefully tomorrow finds me up and out, ready to get on with it.

My dad would be proud.

The Humanity!

Internets, I did a very foolish thing last night. And this morning finds me paying for it with every aching fibre of my wrecked little being.

Yes, friends, last night I drank exactly three vodka tonics at a friends going away party and now I’m in HELL.

This is the thing about having a kidney condition where you can’t drink: sometimes you DO drink. And on those three or four occasions per year that this takes place – weddings, girls weekends or, yes, parties where you bid adieu to a friend bound to Australia for a year, you must carefully plan and make preparations months in advance.

Why? Oh sweet naive public with your stretched alcohol tolerances and fully functioning kidneys, because I know what lies in store the morning after and, given the stakes, if I’m using up one of my yearly drinking nights it better be worth it, dammit!

Last night was. But now I’m here, still curled up in a fetal position in my darkened bedroom at 2pm, a metal basin by my bedside, alternating throwing up with throwing back various medications, head pounding, feeling foolish about this unhappy bargain- my entire body is screaming in protest.

I repent! Sanctuary! Sanctuary!

It’s the worst hangover you’ve ever had combined with what I imagine it feels like the morning after a bare knuckle brawl.

Muscles aching, atrophying, protesting the smallest movements. All underwritten with the sad knowledge that the amount you drank wouldn’t have even made most people tipsy.

So I’m lying here feeling sorry for myself and the conditions I’ve created.

Woe is me! Pity party for one, don’t mind the vomit!

Saw your tumblr post about GS. My daughter has BS. I love your sense of humor about it. :)

Thanks darlin’.

You know that thing that self-involved, cheesy people say about how if they can affect change in just one person’s life, or help just ONE person, it will have all been worthwhile?

That.

But seriously, good luck to your daughter – give her a shot of coconut water from me!

(GS=Gitelman Syndrome, BS=Bartters Syndrome)

flowers for madeleine

Hi kids.

So, as you may have surmised from this and this, I had a kidney related issue and was in the hospital for much of Friday. In retrospect (always, always in retrospect) I should have seen it coming a LONG time ago. I was unbearably weepy and despondent and dramatic, I couldn’t function. Waking up was too much work. Picking fights was the only thing I seemed to have energy for and I bit and tore into Adam like a wounded animal.

Friday afternoon, following a jam-packed morning of weeping, crying and excessive sighing, my physical symptoms became impossible to ignore and I drove myself to the ER. I swore that if it was busy I would just get a blood test and go home. I have insane amounts of guilt about the amount of time I spend taking up an ER bed, a young and (relatively) healthy young lady just getting fluids injected among the chaos of drug addicts trying to scam opiates, bikers with broken bones and fevered, crying children accompanied by panicked mothers.

It wasn’t busy, there was one mother there with her young son but neither seemed in any hurry so I approached the admitting nurse and started to explain my condition. I was fumbling in my wallet for my care card and wishing I hadn’t lost the medic alert bracelet that I am too vain to wear anyway (I KNOW mom) and feeling more and more panicked and in pain and as I was trying to tell the nurse exactly what parts of my body were rebelling, it just became too much.

I was exhausted, I was scared and it became too much and so my voice trembled and cracked and the tears started spilling. The nurse understood what I was trying to say, finished my sentence and told me I would be admitted immediately.

Guys, she FINISHED my sentence. I wanted to kiss her. I wanted to buy her flowers and give her a two week paid vacation for not being rude and sitting there tapping her foot, waiting for me to get my shit together and explain myself. She just sized me up, got it, and got me in. Mystery nurse, I love you.

I was admitted and sat in a curtained room listening to the doctor try and understand my condition ( “…ok it’s a disorder involving the distal convoluted tubule… ohhh so she wastes electrolytes….ok so can we give her a potassum IV or…? Can she overdose? Do we need to be worried about heart stuff here?…”)

They gave me ativan for the panic. It made me so dazed that when the hot doctor reached over to take my pulse I thought he was trying to hold my hand and immediately started thinking of ways to get rid of my wedding ring (see how muddled I was? The easiest way would have be to swallow it, obviously).

I got bloodwork and an EKG done . Because I have to get blood tests every month or so I am on familiar terms with the  lab tech and let me tell you, you haven’t experienced awkward small talk until you’ve made awkward small talk with a sort-of-stranger as you lie topless, with electrodes stuck all over your chest, eyes puffy from crying.

So.

Long story short I got my IV’s, while waiting I amused myself by taking photos, eavesdropping on nurse/doctor conversations and trying to nap.

Which brings us to today. Where I tell you that if you asked me what the shittiest part of all of this was (and I am fully aware that you didn’t, and that you haven’t in fact asked me to tell you any of this and oh my GOD how are you still reading this, if you wanted to hear some random lady complaining about her health problems just go wait at a bus stop or something christ), if I had to choose I would say it’s when I wake up two days after being hospitalized and realize how tired I’ve been, how not-myself I’ve been for the past few days, weeks (months?) as I was losing steam.

These days, just after all of my vital fluids have been topped up, this is the closest to normal that I ever feel and the stark before/after is staggering. I can wake up without being dragged out of bed, I don’t have to sit down after  walking up the stairs. I remember things. I don’t cry.

It becomes glaringly obvious that I’ve been living a half life, a shadow life. And like sweet Charlie Gordon, this delicious ZEST, the spring in my step, the sharp mind and strong, sudden happiness is tainted by the fact that I know that it is literally all downhill from here. I won’t be at this spot again until I come out of the hospital the next time.

Who says I’m a pessimist? I’m BACK!