Where did you get your diagnosis? For over 25 years I’ve had a wide range of pain and other ailments, have gone from doctor to doctor to figure it out. Most just say I need an anti-depressant or to go to Mayo (copout). I came across Gitelman’s and EVERYTHING fits, even lab test done in 2003 which caused a Nephrologist to accuse me of taking diuretics. Armed with the info I found on the Net, I went to see another Nephrologist, but he doesn’t know how to diagnose it. Any recommendations?

I was lucky in that I skipped out on the diagnostic nightmare of Gitelman’s – my younger sister Lizzie was diagnosed before me (and her experience took a similar route to yours, it sounds like) so when I began displaying similar symptoms it was relatively easy to confirm.

Because Gitelman’s is a genetic condition (autosomal recessive – both parents must be a carrier, though not necessarily have the disease themselves) there is genetic testing available to confirm the diagnosis.

I didn’t have this done, instead I was asked to do a 24hr urine test (where they give you a lovely yellow jug to pee into and keep in your fridge for 24 hours) to see how much potassium and magnesium I was wasting. The results of this, combined with my symptoms were enough for my nephrologist to make a diagnosis.

I hope this helps, neither trying to get diagnosed nor living with Gitelman’s is particularly fun, but I do hope that you’re able to find some answers soon.

Feel free to email me if you have any more questions.

(Typically I answer questions privately, but this one came in anonymously so I had to publish it. If you have a question, feel free to indicate if you’d like it answered on the blog or privately.)

The Day After

We are both home sweet home after a loooooong night in the hospital. Adam worked his way through 3-4 episodes of True Blood while I tried to sleep and read. I finally managed to convince him to go home around 3am – no matter how comfy that recliner was, there’s no way you could get a good night’s sleep on it.

I was able to doze on and off until 7 this morning, woken every hour or so by nurses checking on me, as well as the normal hustle and bustle of people being admitted and treated in the ER.

My hips ache from sleeping on that hard little hospital bed, and my arms look a little like a junkies’ after the IV on Wednesday, blood test yesterday, IV last night and more blood tests this morning – it’s definitely time for long sleeves for a few days.

I was a little bit nervous about getting a Potassium IV, because I’ve never had one while pregnant and Potassium can be kind of an iffy drug (it’s part of the cocktail they give for lethal injections. Yeah, pretty hardcore y’all), but that’s also why they were concerned and asked me to come in.

Potassium being too high or too low starts to set off alarm bells for heart function and while my levels are chronically low and almost never in the normal range, this was still scraping the bottom. 

Before the IV I gave the Demon Baby a stern talking to and ordered it to keep up with the squirming and kicking so that I’d know that he/she was okay. That was my biggest fear, something happening to the baby because of the IV. Sometimes there are just too many question marks with this condition and even the doctors can’t say anything for sure. Saying it drives me crazy is a huge understatement- all we can do is continue flying blind and hoping for the best.

Happily however, our darling Demon was kind enough to oblige my request and I was reassured by big thumps to the ribcage and sweet little hiccups all night long. It made everything that much easier.

Adam came back to pick me up at about 8am, and we both went back to bed for a few hours. I’m letting him sleep in a bit while I make him breakfast to thank him for being such a champ yesterday and all of the days before yesterday, too.

I sometimes wonder what all of this would be like without him, how I would have navigated the ups and downs of the past 8 months without his support and his own strange brand of humour.

Left to my own devices I tend towards the morose, I spend too much time in my own head. Sometimes I start to wallow and I ask him things like, “Do you ever wish that you were doing all of this with someone whose body just worked?”

Because I do feel guilty for each and every one of these small physical failures beyond my control. Guilty that his first experience with having a child is so coloured by what-if’s and doctors appointments. Guilty that so much of our time is spent trying to correct things that my body is doing wrong, instead of just sort of breezing through in a happy cloud of anticipation (although we are doing some of that, too).

He never complains, never begrudges me each new strange condition that pops up, the umpteenth specialist appointment I spring on him. He simply takes it all in stride and packs his laptop and is somehow able to make an unexpected overnight stay at a hospital feel fun.

He charms the nurses and refills my water glass and rubs circles on my back when he thinks I’m sleeping.

And when I sit beside him swirling in guilt and feeling sorry that it can’t just be easy, easier, and I turn to him with watery eyes and ask those horrible questions like, “Do you ever just wish you were doing this with someone whose body just worked?”,he replies without missing a beat, “Yeah of course, all the time. I mean I’ve tried to trade you in a dozen times but no one will take you because you’re so defective.”

And then he meets my eye and winks or laughs or rolls his eyes and I am suddenly pulled up and out. Out of that morose space in my head to where he is, doing what he does best – laughing at me taking myself too seriously,again.

I spend a lot of time making fun of Adam, here and in real life, because that’s just what we do. But nights like this last one underscore what a good man he is. I’d willingly trip over his trail of dirty laundry a thousand times if the trade off is having someone like him sitting beside my hospital bed in a reclining chair watching bad TV with one hand on my belly as I sleep.

 I’m so proud that our son or daughter will have half of him. Sorry to go all cheeseball on you with no prior warning, but like I said, he’s a champ.

This my friends, is multitasking at its finest!

I had another IV scheduled for this morning so I decided I may as well make use of the 5 hours I have to sit there, and brought Adam’s laptop along so I could finish up a writing project I’ve been procrastinating doing.

(I’m getting total flashbacks to university where I would leave everything to the last minute, only to find myself the night before a paper was due, fueled by panic and caffeine frantically banging out 15 pages of -hopefully- amazing work)

I managed to reschedule my diabetes appointment for during my IV because they’re in an office just down the hall, so that worked out rather well actually.

(DIABEETUS TANGENT: I’m cured! Well, not really. But sort of! The clinicians are pretty sure that my kidney condition and chronically low magnesium was skewing my blood sugar levels higher, and sure enough after my last IV my numbers dropped and stayed low and now I never have to see the diabetes ladies again! I mean, they are wonderful, amazing, helpful women but I am SO glad to never have to go back!)

Let me tell you, I had a pretty sweet set up. the IV, my laptop, appointments where they came to me, and then at noon they brought me a little lunch of soup and tea and delicate cucumber cream cheese sandwiches – I was living the dream!

Seriously I don’t know why hospital cafeterias get such a bad rap, every time I have been here the food has been awesome.

I also keep thinking how lucky I am to be in a country that has access to all of this (the doctors and nurses and tests and infusions and yes, even the cucumber sandwiches) and also that all of it doesn’t cost me a penny. Honestly, I can’t imagine where we would be if we didn’t have this kind of care, or if we had to pay for it. This would be a million dollar baby! It’s tempting sometimes to complain, or get annoyed with how many appointments and specialists and procedures I undergo, but mostly I’m just really, really grateful.

Arm Party!

Today I woke up and had a coffee. A cappuccino, actually.

Coffee, and by extension, cappuccinos, aren’t technically legit on this here cleanse I’m doing, nor, presumably is the unrefrigerated milk product that shoots out of the little tassimo pod to make that delicious milky frothy cappuccino topping, but I mean, who’s really keeping track here?

(shut up)

Life is about indulgence. I decided that just now. While drinking contraband cappuccino.

Also have you heard about this new thing called Arm Parties? It’s not some weird sexual thing you probably won’t be into (like I originally thought) its where you wear lots of bracelets and then, I don’t know, I guess wave your arm around and squeal “Arm party! Arm party!” and take Instagram pictures of your wrist to post to your Internet blog.

Well, that’s what I did anyway. Here’s my arm party.

The first 6 or seven bracelets are actually one long necklace wound around and around, a necklace made of paper beads using fair trade labour by women in Uganda. It’s easily my favorite piece of jewelry (aside from my engagement ring HI ADAM!).

If you are a girl with long hair the next item will be muchos familiar to you as it is the lowly yet ever present hair elastic. I am so attached to these I actually had one on for the first half of our wedding and I didn’t even realize it until I saw our wedding photos and in every one that little brown hair elastic sits smugly on my wrist, a reminder of my ordinary self amongst the solemnity of the occasion.

The hair elastic is followed by my least favorite piece of jewelry, if you can even CALL it that. My stupid hideous medic alert bracelet that I have to wear as if I’m some feeble octogenarian who might fall and lie prone, unable to get up without assistance (help! help!).

But my mother breaks out in hives and clutches at me, screaming obscenities when she sees me not wearing it so really, putting it on is just less work for everyone involved.

Actually, the medic alert bracelet should be thanked for inspiring this whole arm party, because my shame about wearing it made me seek out other, more colourful bracelets to camouflage its damned presence, much as Adele’s terrible ex-boyfriend inspired her to write beautiful but tragic songs about heartbreak, rocketing her to fame and international acclaim in the process.

Guys, my medic bracelet is Adele’s ex boyfriend. If you learn one thing from this here Internet blog, let it be that.

The final guest to rock the party is a bracelet I made last night. I think visual reminders of goals/ambitions are extremely powerful, and in my case, necessary.

My memory could be better – it seems that no sooner do I make a vow than I break it, simply forgetting my intentions entirely.

So this bracelet was made using the cheeriest colours I could find and with each knot I tried to think of positivity.

Smiling, laughter, that happy feeling that swells your ribs so much you think they might break.

It was quite the cathartic process, especially since I abandoned it three rows in, frustrated with its intricacy and my clumsy fingers. And then I laughed at myself and the irony of a happiness bracelet being abandoned nearly before it had begun, being deemed “too hard”.

Oh Madeleine. Really.

Obviously I continued on and mostly it went well but I also had to undo rows and retrace my steps, painstakingly plucking apart dozens of tiny knots before I finally finished four hours later. It took a long time and it was hard and it’s not perfect but when I look at it I’m reminded of my intention, my deep desire to feel lighthearted, content.

It also reminds me that it will take a long time, and one step forward will sometimes mean two steps back. I will make mistakes and perhaps swear like an angry, scurvy-ridden sailor and feel like throwing in the towel altogether, but I’ll get there.

ARM PARTY! ARM PARTY!

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.