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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.

 

 

Musings

Ye Olde Kidneys


On Friday I spent six hours looking at the lovely scene you see above.

Yes, that is a jail toilet.

I was not in jail though, which is too bad because it would have probably been a better story, likely involving Grand Theft: Cheese, or police arresting me for impaired driving when really I just drive like a grandma.

Ahem.

The toilet was actually in the security room of the hospital, which is where I landed due to my chronic kidney issues. The ER was pretty busy so they took my bed and bumped me to the vacant security room where I got to sit in a recliner under the watchful eye of a security camera while I got my IV.

TANGENT: I had a lot of time to contemplate that toilet, especially since my phone died two hours in, and I just have to say that it is a marvel of engineering. Does anyone who knows anything about jail toilets know if the sink water gets reused as toilet flushing water? Because if it does, I just think I might place my order now. Look how compact it is! How shiny and easy to clean! No sharp edges on which to impale yourself or hidden places to stash contraband! My mom has been looking for space-saving ways to remodel her bathroom and I think I may just have found the answer! Fabulous.

Anyway, I was in the hospital because routine bloodwork I had done on the 31st showed that I had really low electrolyte levels, which are a result of my kidney condition. Low levels aren’t usually anything new, except that since having Olive I have been temporarily, and quite miraculously cured – CURED!- of this bothersome issue. Beginning the morning of my c-section, and spanning up until December 31st apparently, I have been able to maintain almost normal electrolyte levels without taking my usual 10-12 pills a day. But sadly, as this blood test showed, I think that party is slowly coming to an end.

Friday morning was a bit of a gong show for several reasons, and as I was driving to the pharmacy to pick up my prescription before work my hands started cramping and my face started going numb, so I turned around and went to the hospital instead.

It was a bit of a rough day. I had been really enjoying feeling like I didn’t have a chronic illness, you know just living the life with no massive pill containers or nephrologist visits. Guys, I was living the dream! And as I sat there cramping it all sort of came crashing down, and I just sort of let it.

I just tried to relax and breathe while I got my IV.

I am always reminded, when I spend these 6 hour stints in the ER, that nurses really are just the most incredible people on earth. If you are a nurse, you have my everlasting undying respect for the incredible work that you do, including but not limited to how you keep me stocked with warm blankets from that magical warm-blanket dispenser (how do I get my hands on one of those?)

Besides earning me an unanticipated late start going back to work, this new development also raises some issues around breastfeeding. Olive is still nursing, and if I can manage to keep my levels at a decent place with one medication then nothing needs to change. If I can’t, however, I will need to take a second medication to help my body retain the first medication (have I lost you yet?) and this second medication isn’t compatible with breastfeeding, which means that I will have to choose either breastfeeding, or feeling like a real live energetic emotionally stable human being and I mean, clearly there’s no contest there.

I know that the best thing for a healthy baby is a healthy mom. I never had any clear idea in my head about when I would stop breastfeeding, and having made it to fifteen months (if that’s as far as we get) is fantastic, but the thought of weaning does break my heart a little bit. It doesn’t help that Olive is milk obsessed. I’m not sure that she knows I exist independent of my boobs. Plus, if I’m not nursing, um, how do I put her to sleep? Nursing is my secret weapon and if I lose that then I have nothing to lord over Adam, and then he has the edge because he’s had to adapt to comforting, soothing, and putting Olive to sleep all this time without the magic boobs so really he’s actually a little but ahead dammit!

On the upside I am feeling much better thank you, and Olive had a great day with her grandparents and we napped when I got home, and I was reminded again how lucky I am to live in a country where I can spend a day in the ER receiving the care that I need, and walk out not a cent poorer for it.

I’m also on the fence about New Year’s resolutions. Do I make them? I mean, do I ever keep them? Is it hopeful, or just wishful thinking? I know that some people choose a phrase or a word for the new year, rather than a resolution. What have you done? Any tips?

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I have Gitelman’s too! How old were you when you were diagnosed? I was eight years old. Do you have any advice on how to live normally because with high school and all my other issues I’m having a very hard time. I hope you’re doing well!

Aw, diagnosed at eight? That’s rough. I was diagnosed at 23. I’m sorry you have Gitelmans, but glad you found me!

In my experience, the symptoms and management of this kidney disease vary widely, so my first advice would be to get yourself a good Nephrologist and work with him or her to properly manage your condition.

Other things I have found to help:

– Avoid drinking, which can deplete your magnesium really quickly and cause tetany/hospitalization (in my case, anyway). This might be tough because you’re in high school and damn, sometimes that’s easier said than done. Try to be smart though, and if you know you’ll be drinking, make sure someone knows your condition and/or get a MedicAlert bracelet, mix your drinks with gatorade or powerade to replenish electrolytes, and consider beefing up your medication a few days beforehand if your Nephrologist allows you to adjust your dosages as needed.

– Excessive exercise, heat, or sweating can also deplete your electrolytes

– Avoid coffee and black licorice

– Epsom salts are made from Magnesium Sulfate, so pouring a cup or two into a bath is a great way to absorb some extra mag

-Get regular blood tests to stay on top of things

– Research, understand and remember that low magnesium fucks with your head. When you start feeling depressed, unmotivated, overwhelmed, OCD, of lethargic, this is low Magnesium talking.

-Start breastfeeding something so that your Gitelman’s will be temporarily cured, CURED!

-(kidding. obviously)

 

That’s all I can think of at the moment. I wish you the best in managing your condition!

Send me an email at info (at) sweetmadeleine (dot) ca, I have some more info to pass on 🙂

 

If you have a question, click “Ask” to your right.

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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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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.)