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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.

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Round 2 deja vu

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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...