Skip to main content

Still clinging to my old normal

Last weekend I attempted to hold on to my old normal.

I have three Rhodesian Ridgebacks and one of the things that I enjoy is watching them run (and compete) in a dog sport called lure coursing. The event was about three and a half hours away in Iowa.

So I packed up the camper, aka the most expensive dog kennel you'll ever purchase, and we made our way south. Uneventfully so.

I set up camp, got the pups walked, fed, settled and then allowed myself to collapse. What a lot of work.

But I slept well and woke up refreshed and ready for the day.

I tried to be prepared. I brought four gallons of drinking water, along with a water dispenser pump. I had a 10 pound bag of ice to keep my drinking water COLD. I had every intention to stay well hydrated. I thought I was. But when you're outside all day in the sun and wind sometimes it's difficult to tell.

Epic fail.

By the end of the next day I was so tired, drained and dehydrated that I wanted to cry (which was crazy since my younger boy won Best of Breed against nine other Ridgebacks). I went back to the camper, CRASHED and took a two hour nap.

Decision made. Old normal be damned. New normal - at least for last weekend - was cutting the weekend short and returning home first thing the next morning, eight hours early.

Did it feel like defeat? Yes.

Was it the best thing I could do to support my health and well-being? Definitely.

The only thing I can do is learn from the experience.

First of all, when I think I'm drinking enough water, DRINK MORE! I think next time I'm going to measure out two gallons of water at the beginning of the day and make sure that that's the MINIMUM I down. A fellow member of the Polycystic Cysterhood said that she drinks at least two additional liters of water a day during the warmer months of the year. Done.

Next, I think it's okay to start out with the expectation that I  might not be able to run the dogs both days of the trial. Enter the first day, note how I'm feeling and then either gate enter, act spectator or pack up early on the second day. And feel good with my decision.

Yet the after effects of the weekend continue. Possibly due to the Tolvaptan dehydration. Maybe because I stood outside all day in the blowing pollen-filled wind. Or the resulting fatigue? Regardless, now I have a summer cold.

Boo.

Hydrate. Hydrate. Hydrate.

Comments

Most Read

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 (...

Teach us to fish

I've recently started trying to educate myself on current research and insights around PKD and all the diseases that seem to show up along with it.  While it's exciting to learn that we're on the verge of significant innovation in how CKD and PKD are diagnosed and treated, I find myself a bit disappointed. Instead of shouting the news from the roof tops... instead of spreading the excitement, the medical community hides the punchline. They share their findings in dry journal articles, steeped in language that is hard to understand. I realize the audience for the articles is not Joe or Jane Public. I realize that they're scholarly discussions of research methodology, statistics, inference and conclusion. I also realize that this is potentially a single data point that may, or may not, contradict current beliefs. Regardless, wouldn't it be nice if these studies included a simply worded summary of the work? Something easily consumable by the general pu...

Running on empty

Energy. What's that? During my last nephology appointment, I mentioned that my stamina was declining and that I'm, in a word, TIRED! My doctor's first thought was to check TSH (thyroid-stimulating hormone) levels. Excellent idea. Unfortunately, my levels are medicated, controlled, recently tested and within the 'normal' range. Oops. To be fair, my energy levels are reminiscent of the months prior to being diagnosed with hypothyroidism - not quite as severe, but still not good. On days I work from home - I'm a data analyst/programmer - I frequently have to either take a nap over my lunch break or crash once I'm done for the day. On days I go into the office, I often myself in bed by 8pm (and sometimes earlier). Sigh. This is no way to live life. I've asked about this in the  Polycystic Cysterhood Facebook group  and others agree that they've seen their stamina and energy flag as kidney function has declined. At least I'm not alone. U...

Truth

The need is real! I don't know if it's because prior to Tolvaptan I routinely used mind over matter to delay my trips to the restroom, but I think I'm doing okay these days. Is it possible that I built up bladder muscles over the years? Don't get me wrong, the need to pee is omnipresent. But it's one of those things where I can make note of it, finish what I'm doing (or finish a couple more things) and then make my way to the facilities without the fear of letting things fly. But I'm not stupid. You'd better believe I'm making the restroom my last stop before starting my 45 to 60 minute commute to/from work. A soggy crotch is NOT becoming.

Expensive but affordable

There's no denying it. Tolvaptan - brand name Jynarque - is CRAZY expensive. The wholesale price is just north of $13,000... A MONTH! Dear God. I've searched and searched to find out how much pharmacies are beings charged for the drug, as well as my insurance company, but I've yet to find a source. Surely there has to be some kind of 'negotiated price' like you see with healthcare?!? My doctor suggested increasing my dosage - after I'd already received the next month's supply - and I about hyperventilated. There's no returning drugs and the thought of wasting $13,000 of pills left me queasy. So instead, we decided that I'd stay on the lower dose for another month and then increase the dose the next time. Deep breaths... Regardless, Otsuka (manufacturer of the drug) is working to make sure that the patients' out of pocket for the drug is manageable. Through their MyPASS program , patients with commercial insurance can acquire the pr...