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gitelman syndrome


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.