Skip to main content

I'm now 'that person'

I remember watching sit-coms where the older people were stereotyped as talking about nothing other than their current (and past) aches and pains. I used to laugh and think 'how ridiculous'.

No more.

I've become that person... and I'm not even that old!

It's so hard when something totally consumes you, whether it be a new hobby, a new beau or a progressing disease. Your mind becomes consumed. And when people ask a single innocent question, it seems like the dam bursts and suddenly this single track of thoughts come gushing out. TMI! Too much information!

So now the question is... how do i balance who I am WITHOUT the disease with the person I am WITH the disease?!?

I don't want to hide anything, but do people really need to know the details of persistent flank pain, the timing difficulties I face due to medications that interact, blood test results and the gut-wrenching, paralyzing FEAR that I experience when I let myself think about things for too long?

I'm not sure yet, but I think that the key is the word I used earlier - BALANCE.

I plan to be open about the fact that I have an incurable, genetic disease. When it affects my day-to-day routine, I will share that I'm facing some challenges.

But all those nitty-gritty details? Yeah... I'll be keeping those to myself unless someone explicitly asks me for more information. I'll also be using this blog to try to offload some of the pressure to share.

Like with anything though, I need the emotional support of family and friends to help see me through this. So when asked how I'm honestly and truly doing, I won't be automatically volunteering 'Fine'. But I'm also not going to start droning on about how annoying it is to have to have multiple pill organizers and an alarm on my phone to make sure I'm taking my meds on time.

But I will be honest. And when I need help and support, I'm going to try to ask for it.

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...