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Words to live by

I never knew - couldn't even fathom - how tough it is to live with a chronic disease. Sure I've been hypothyroid for YEARS but it never really felt serious. I take a little pill once a day. There are no side effects. I get my energy back. Good and good.

Polycystic Kidney Disease is nothing like that.

There is no cure - save transplant. But even then you take anti-rejection drugs for life. If you forget your meds, you risk transplant rejection. How's that for adding a little anxiety to your anxiety?

There is a single drug that SLOWS DOWN the disease's progression, but that promise of dialysis and/or transplant is always right over the horizon. The side effects of that drug are constant thirst and the knowledge of every public rest room within a hundred miles.

And while you wait for the disease to progress, you get to experience soul draining fatigue, anxiety, physical discomfort as your kidneys expand to fill your abdominal cavity, the look of a pregnant belly (at 51?), high blood pressure and other comorbidities.

Deep breath.

That's why mantras such as this one are important reminders to keep around.

Things will change. I'm strong and I've overcome challenges before. Every day offers the possibility of learning and growth. There may be a bigger plan out there for me that I just can't picture. I deserve to enjoy my life but when I'm not at my best I refuse to chastise myself. I don't have time for your drama because I'M TOO BUSY BEING THANKFUL for all the good in my life.

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Round 2 deja vu

My doctor decided to keep me at the initial 45/15 mg dose for another months so I'm anticipating a similar water consumption. Here are the first four of seven (?) or eight (?) five gallon bottles of water. My local grocery store has a water bottle fill station for an extremely reasonable 39 cents a gallon. The frugal side of me thinks I should invest in reusable water bottles and take advantage of the savings. The lazy side of me thinks that it'd be a total hassle to wash the bottles, keep bugs and dust from falling into them before I'm able to refill them, remember to take them with me to the store (I can't even remember those reusable shopping bags) and then stockpile a source of bottle caps. It's just so much easier to buy these recyclable five gallon bottles. Lazy beats frugal.

Winner Winner!

Mon Apr 1 2019 - Just look what showed up on my doorstep (okay, it was actually a FedEx driver) by 930am this morning! Super, super exciting!!! I had that box open and my first dose taken in no time at all. My biggest concern now is whether taking it at 930am is going to mess with my sleep. They say that it's best to take the first dose as early as possibly (my plan is 6am) so you can take the second dose as early as possible (8 hours later at 2am) so you're not waking up all night having to go to the bathroom. As it is, I won't be taking my second dose until 530pm. Ugh. Fingers crossed. In the meantime, here's what everything looked like when I opened the box (yes, I took time to actually photograph this momentous moment). After the inspection of the non-med part of the box, I set my bottle of water next to me (I was working from home) and I waited. And I waited. How long would it take before I needed to go to the bathroom?!? Turned out to take 45 min...