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gitelman syndrome

Musings

How to live in a state of perpetual denial about your chronic illness: a helpful guide

(I have a rare chronic kidney condition, sexily named Gitelman Syndrome. You can read all of my posts about it here. In its most bare-bones explanation, a tubule in my kidneys doesn’t know that it should be keeping electrolytes – namely salt, potassium, and magnesium – so it wastes them instead and my body is chronically deficient in these key elements which are really important for things like keeping your moods stable, your energy levels up, and your heart beating. The little things, you know?

As chronic illnesses go it’s a pretty tame one. I just get tired a lot, my muscles are bunched and feel tight like bone, my moods are all over the map. The treatments, too, are pretty mild. I take a lot of pills, sometimes I need to sit in the hospital overnight and get an IV. But sometimes I don’t take my pills, even though I know I should. Sometimes I don’t get blood tests, because I know what they will show.

Denial is a funny thing, so I tried to make it funny, now that I’ve bounced back out of my latest slump. I hope this will resonate with anyone else who deals with chronic illness, or knows a loved one who does.)

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1. Don’t take your medication. You’re busy! So maybe you just forget. Or better yet, maybe you remember but stare at that handful of pills and come up with reasons to take them later, after lunch maybe, when they won’t irritate your stomach. Or after dinner, so you can space out the dosage a little. Or, a personal favourite, stare at that brimming palm-full and just flat-out refuse. Think, “To hell with this.” and decide not to even acknowledge the irrefutable reality that your existence is dependent, in large part, on these innocuous looking little tic-tacs.

You are what you eat, right? And only sick people have to eat handfuls of pills, ergo if you don’t take yours you’re not sick anymore! Guys, it’s LOGIC!

2. Do things that make your condition worse. For me this includes such wild activities as drinking coffee, eating black licorice, sweating, ever having even one alcoholic drink ever goddamnit, etc. Basically just decide to LET LOOSE every once in a while and wholly ignore the inevitable price you’ll pay,  because….reasons.

3. Never wear your MedicAlert bracelet. Because did you know that if you don’t wear the bracelet, your chronic illness disappears? It’s true! Promise!

4. Snap at loved ones when they ask if you’ve taken your medication. Because you know what, ADAM? I am a PERSON, not a DISEASE. And as a PERSON, I have MOODS. I am ALLOWED having moods, you know. Good moods, bad moods, HELL, even bad moods that last for an entire week and demonstrate a 100% correlation with a simultaneous decline in medication-taking and- you know what? I don’t want to talk about this anymore! I said good day!

5. Skip doctors appointments, labwork, and other diagnostic tests. If you don’t do the tests, no one can prove that you’re sick, see? I mean without labwork showing that my levels are in the toilet, I can misappropriate blame for my extreme fatigue, moodiness, and aching back to any number of things. I’m busy! Olive has stopped sleeping while her bottom 4 teeth make their dramatically slow entrance into her smile! I’ve been doing yard work! I AM NORMAL!

 

Ugh, seriously guys. Denial is a horrible thing. Is it just me? I’m really hoping it’s not just me.

Here what I have learned (again) that will hopefully help in the future: Take your medication, and once you are on an even keel again write a note to yourself about how you are feeling. Witness your calm, and your energy, and how you can do more than lie in bed and cry and snap at people around you (including your adorable daughter). Keep this note somewhere safe and show it to yourself the next time you think that you’re doing great! And are fine! And will just skip your pills! Because you clearly don’t need them!

You do. And I do.

I’ve written that note, and now I’m off to pop pills LIKE A BOSS.

 

 

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Are you limited in any way by your kidney issues? Can you travel overseas? Get tattoos? ETCETERA!

I think that relative to other medical conditions I got off pretty easy with Gitelman Syndrome, and I try not to be a complainer because by and large my life is relatively unaffected. 

That said, I am limited in some small ways, Tattoos and travel are both fine – I just make sure I have excellent travel medical insurance before I set foot out of Canada.

I can’t drink too much alcohol, coffee, or eat too much black licorice because the first two deplete magnesium, and last depletes potassium. Potassium deficiency would eventually stop my heart if I didn’t have access to medication, and magnesium deficiency causes muscle weakness, and tension – my back, neck and jaw are constantly tight. 

I most notice the effects of magnesium deficiency in my energy level and my mood. I am constantly fatigued, because I am running on less than half the electrolytes as a normal person ( breastfeeding is keeping my potassium up, but not my magnesium)

Tons of studies have linked low magnesium levels to depression, stress, lack of motivation, “sulkiness” (oh haiiii), and moodiness in general. I can always tell that I am low mag when I am emotional and irrational, problems seem overwhelming and I start obsessing or fixating on things. 

People in my life (Adam) are usually pretty good about reminding me to take Magnesium when they see these signs cropping up, but it’s sometimes tough to recognize on my own when I’m in the middle of it. It really bothers me that my moods are so susceptible to outside forces, even though really, everyone’s are (many speculate that rising depression rates are caused by food being grown in mineral-depleted soils, and that much of North America’s population is magnesium deficient.)

But, all in all, I take a few pills and spend a few hours hooked up to an IV every year or so. I think that’s pretty liveable 🙂

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Bottles and Battles

Olive turned four weeks old on Friday, and will be one calendar month old on Monday. I’ll spare you the trite “How is she a month old already? Time has gone so quickly!” post, as long as you know that I am thinking it almost daily. Every time I look at her she is visibly bigger, more alert.

She’s gained almost a pound and a half and has outgrown her first item of clothing – a sweet yellow polka dot onesie that fit her a few short weeks ago, but we struggled to stuff her legs into the other night.

This past four weeks have been some of the strangest I’ve ever had; physically, mentally and emotionally. The physical changes are the easiest to address, being as they are visible, easily quantifiable. I now weigh 122 lbs, which is 7 more than my pre-pregnancy weight and I’m fine to sit here for a while. I don’t mind feeling soft, being somehow more than I was –  it seems to suit me at the moment.

My incision hardly hurts anymore, tomorrow I’m hoping we will have a rare break from the rain so we can take Gus for a long overdue mega dog walk. I still feel raw and tender from breastfeeding – in the shower I cup my hands over my chest to avoid the shower stream. This is pretty minor though, and something that will pass with time. 

Also, something unexpected has happened with my electrolyte levels (if you’re new here, I have a rare kidney condition that causes fatigue and muscle weakness among other lovely side effects). I got my regular bloodwork done last week and both my potassium and magnesium levels were some of the highest they’ve ever been – even after getting IV’s. They were both within the “normal” range, which is absolutely unheard of for me. This, coupled with the fact that I haven’t exactly been taking my pills religiously in the haze of having a newborn, makes for a very interesting scenario. I can only assume that somehow breastfeeding is mitigating the effects of Gitelman Syndrome and I think my high levels are why I’m doing ok with the loss of sleep and broken schedule. I actually have more energy than I did before.

As for the mental and emotional shifts, I don’t know where to begin cataloging the changes I’ve undergone. As soon as Olive was born I felt this intense biological imperative to take care of her, meet her needs. Protect her. Her crying makes me physically uncomfortable and I want to do anything I can to make her happy, to relieve her discomfort. It’s this aspect of the experience I hadn’t accounted for,  this irrational instinctual part of me that makes it difficult to remain sane sometimes.

For two days last week she was gassy and uncomfortable which meant that pretty much anytime she was awake and not nursing, she was crying. Her face would contort into an expression that can only be described as pained, she would grunt and strain and cry and wail. I couldn’t soothe her except by nursing her, which would only create more problems as she struggled to pass more gas. Adam came home to find us both crying and it’s the first time since we had her that I felt overwhelmed, ill-equipped to handle this little creature. I would have ripped my heart out to help her. We discovered gas drops which seems to be helping, and I’ve eliminated caffeine, chocolate and dairy in the hopes that it will address the source of the problem (see when I said I would rip my heart out? I’ve given up CHEESE, which for me is essentially the same thing).

It’s here that I do battle with myself. Met with her discomfort, my brain flies out the window. Logic has no place here. When we put her down in her crib and she cries, I scoop her up and let her cuddle on my chest. Part of me feels good that she’s soothed by my presence, the other part worries that I’m creating bad habits by not letting her sleep by herself. At the moment I’m going to put off imposing any sort of schedule for sleeping or feeding until she’s at least three months old.

Half of me thinks that I am here to meet her needs – to offer her nourishment and comfort on demand so that she develops with the knowledge that the world is a kind and benevolent place where her needs will be met. The other half of me thinks I should be fostering independence, providing her with the skills to do these things for herself.

Which brings us to my first real bout of Mommy guilt. Tonight I pumped my first bottle, which Adam will feed to Olive later tonight. I think it’s been difficult for Adam having such a necessarily limited role in her life right now – although he’s been very involved with bathing her, doing diaper changes etc., when she cries there’s very little he can do to soothe her. At some point he has to hand her over to me and this, understandably, makes him feel a bit helpless.

I don’t mind the idea of giving her a bottle every so often. I love that Adam will be able to share the process of feeding her. I definitely would like the option to leave Olive for longer than 2-3 hours in the next year or so, which makes having her take a bottle a necessity, but still I have guilt.

I think that its because I’m giving up one of the most crucial biological functions that I, as her mother, can perform. And I’m doing it in the name of convenience; because it’s what we want rather than what she needs. It feels wrong somehow. I worry that she won’t go back to breastfeeding, I worry that I’m destroying some bond that should be developing between us. I worry that she’s drinking out of plastic, that I’m being milked by a machine.

Basically I just worry. Period. And then I research, which causes more problems because no one can agree when is a good time to introduce a bottle to an infant. Some say as soon as possible, some say no sooner than six weeks. Everyone is right, everyone has developed the best system, has horror stories about those who didn’t follow it to the letter.

And I’m trying to reel logic back into the fold, to balance the research and knowledge and advice of others with my own developing instincts as a mother. So I scoop her up and cuddle her, let her sleep with her milky breath on my neck. I sit here and type, a strange few hours of untethered freedom ahead of me because Adam is sitting upstairs with a bottle by his side. 

I’m trying to muddle my way through and assuage the guilt and do what’s best for this little being, but as I watch the battle between instinct and logic, comfort and independence, I am getting the sense that in this particular conflict, the battle has just begun. I’m a month deep into a lifelong struggle to balance these two sides, and this I think, more than the sleep or the breastfeeding or the physical recovery, this is the biggest adjustment. The biggest responsibility.

Musings

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.