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Lightbulb moment

After today's earlier post on becoming "that person" - the one who does nothing but list off a litany of aches, pains and meds - a lightbulb finally went off.

Truth be told it was as I was posting the accompanying picture to Facebook.

THIS is how I'm living my life with ADPKD!

Yes, I'm living with all the aches, pains and meds.

But that doesn't define me. I still do STUFF!

I've been fortunate to have some downtime from work - a stay-cation of sorts. This is my favorite way of spending my time right now.

It gives me time to relax, read, get caught up on chores and CREATE! It doesn't matter what kind of creation it is - cooking an actual meal (and sitting at the table to eat it), painting a room, gardening, fixing something that's broken or, in this case, building a very basic potting bench.

It may not be pretty. It may not even be level/square. But I built it BY MYSELF, without plans, using scrap lumber I had collecting dust in my garage.

And you know what? I didn't think about my flank pain at all. :-)

And THAT my friends is how you live with a chronic disease. Don't let it define you. Find things that nurture your soul.

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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.

No denying it

So this happened today. Despite being on Jynarque for over a year. Despite increasing the dosage to 90/30. Despite watching my sodium, drinking gallons of water and losing weight. My creatinine levels continue to trend upwards and my eGFR continues to trend down. It's now at 21. Big sigh. Discussions are underway to determine dialysis modality and whether I can do it at home. A fistula consult with the surgeon has been ordered. And I still wait for the transplant evaluation with Mayo (it was rescheduled due to Covid). So if you know anyone who would be interested in helping out a Type O girl with a donated kidney, please send them my way. Take care.

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...