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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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It's getting real...

I looked at my phone messages on Monday night and was excited to find a call from the Mayo Clinic. Would they tell me that I had to wait for further deterioration before I could be evaluated for transplant? Or would they tell me to make the drive to Rochester to go through a battery of tests and meetings? It turned out to be the latter. Yay! They're going to evaluate me for transplant in April! Wait a minute. They're going to evaluate me for transplant... Crap. As they say in the movies (?), shit's getting real. I'm trying to stay positive, telling myself that this way I'll be able to get my name on the transplant list as soon as my eGFR hits 20. I'll be able to maximize my time on the list. But every so often, the positivity slips and the fear and anxiety appear. And the questions. All the questions... Will I be able to keep working? Will I be able to afford this? How will this affect my retirement? Will I be able to retire early? How will I pay...

Test tube kidneys?

While I'm sure that Miromatrix would shudder at my description, it looks like they're developing the equivalent of a test tube kidney which could be used for transplant. While the science and bioengineering behind it is extremely complex, this is how I understand it. Miromatrix uses decellularization and recellularization technology to create a transplantable kidney. Huh? They take an dead organ - it doesn't even need to be human - and using detergents (I'm guessing they're stronger than Dawn ;-) ) they strip away all the cells. What remains is the kidney's extracellular matrix (collagen, enzymes and glycoproteins) and all its chemical cues. Then the "generic" organ is repopulated with the transplant candidate's cells, eliminating the risk it will be rejected upon implantation. Early studies have shown that it takes from four to eight days to culture the transplantable kidney and, even better, the new organ produces urine when tested. B...

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.

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.

Not quite two gallons a day

All I know is that one person lives at my residence (ME!) and I have seven empty five gallon water bottles that are ready to be recycled. So 35 gallons OF WATER over the first 24 days consumed AT MY HOUSE. And that doesn't include all the water and nugget ice consumed at work... or the clear sodas... Actually now that I think about it, I MAY have hit the two gallon a day mark. #feelinggood #hydrated