Hurricane Gratitude

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Tonight I went for the first walk that I’ve been on in probably four months. The temperature was a wonderful 70 degrees and the air was surprisingly calm … a stark contrast to how it was two nights ago!

The last couple of days have been dominated by Hurricane Milton as it came barreling in from the Gulf and crossed Florida just south of Tampa. I believe it was a Category 3 when it made landfall down by Sarasota, which was somewhat of a relief because it had gotten up to a Cat 5 during its journey across the Gulf of Mexico over the previous days.

We were extremely lucky with this one – we didn’t lose more than a handful of shingles off the roof and our power stayed on through the entirety, compared to the 3+ million Floridians that lost power – many thousands of which are still out two days later as I write this. Some areas still have flooding and others look like they got hit by a tornado, which is a definite possibility … I think I saw a stat of something like 700 tornados spawned from this thing across Central Florida.

For our part, we stayed home and hosted some family from nearby, the kids had fun making forts to sleep on in the living room on account of giving up their beds, and overall it was just a nerve-wracking couple of days. By far the worst came at night – it’s amazing how loud 100+ mph winds can be – and although two out of three slept right through it, David struggled and I ended up staying up with him as we wrapped up season 3 of The Rings of Power and enjoyed dessert.

Surprisingly, he actually seemed to enjoy it and followed along as I tried to explain the story in eight year-old terms, so we may have to start reading The Hobbit together sooner or later!

As expected, the next day as photos of the damages began to show up online, it was pretty heartbreaking – particularly to see where Milton had piled on in areas where Hurricane Helene had already passed through barely a week prior. This one destroyed lots of signs and trees, tore the roofs off of two stadiums, and flooded a ton of streets and neighborhoods – many that don’t normally see issues like that, but I guess there’s already so much water in the ground from the last one that it just didn’t have anywhere else to go.

The homeschool co-op where our kids go took some pretty big hits, and Sara has already been over there to help wherever she can. Just in the brief running around I did this afternoon to grab a few things from the store, I saw major traffic lights that were out or damaged and shelves at the grocery store are still bare from people’s preparations a few days prior. I couldn’t help but think that as frustrating as it was to find parking at the mall so I could run into Red Robin and grab my pickup order, I’m sure a good number of those people were out because they still don’t have electricity at home and they just needed to get out and enjoy air conditioning for a few hours!

We’ve tried to balance how we talk to the kids about storms like these because although we don’t want to send them into a panic – which is easy to do with autistic kids – but we also want them to sincerely understand not only how dangerous hurricanes can be but also how lucky we are that we didn’t get hit harder ourselves. Looking at pictures of flooded houses and missing roofs is one thing, but explaining that these people just lost everything except for each other adds a context that I think is really important to learn even at their age.

Maybe it will be the difference between them being prepared and something tragic for not taking a hurricane seriously enough ten or twenty years from now … if Florida is still above water at that point, anyways…

So yes, I’m grateful that my hurricane clean-up was limited to picking up shingles around the yard and not throwing away furniture and carpet and drywall and basically everything else that the storm water touched. And I know that even after the power companies have utilities up and running, those who were hit hard by this thing have a long journey ahead of them to anything close to resembling normal. I definitely couldn’t imagine navigating all of that and having kids or a job that wasn’t understanding like mine has been.

The sheer power of mother nature certainly isn’t something that you want to fuck with, and hopefully we won’t hear a roaring wind again like that until hurricane season next year … or even later, if we’re lucky.

I Am Disabled

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Until recently, I hadn’t really ever framed my kidney disease like this. Not that I’ve been in denial about it or anything, but it wasn’t until strangely I had a dream where it came up that it kind of clicked in my head that I’m different now, and I deserve to be treated differently.

Not better, mind you, but in ways that other people who don’t walk around with chronic diseases ever think about through no fault of their own.

In my dream, I was back working at the auto parts warehouse where I worked as a teenager and my boss gave me a little shove as he said hello. Nothing mean about it, per se, but in this case I fell down and told him, “I’m disabled – you can’t do that anymore!”

Although falling isn’t something that I normally worry about, I’m technically supposed to be wary of it because if I were to fall on my ginormous kidneys, it could cause some of the cysts on them to break, which leads to infections and all sorts of other bad stuff.

That said, when I think about being disabled now, it’s about establishing new boundaries and expectations for how I interact with the rest of the world and how it does so with me. I know that spending an entire day in the heat walking around a theme park isn’t in the cards for me right now, nor is swimming because the risk of infection through my catheter site is too great.

Where I could stand to improve on is defining these struggles that I’m having for other people to help them better understand what I’m going through and what I may or may not be able to do in my current health. Lately I’ve been fatigued a lot throughout the day, to the point where sometimes I’ll sleep for 12+ hours if I can, yet I’ll still be tired afterwards. I’ve also been dealing with a lot of intermittent nausea – mostly in the mornings – but it’s enough to suck the energy right out of you because let’s be honest, who wants to do anything after they’ve just thrown up or feel like they’re on the verge of doing so?!

My world is definitely changing – I can’t work odd hours or 50+ hour shifts anymore to push through on a project because the rest of my schedule just collapses if I don’t give my health the time that it deserves. When I first started dialysis, at least I got two “skip days” a week when I didn’t have to do it, which I would try to plan for early meetings at work or field trips on Fridays with the kids, but we just changed my prescription to get more aggressive with my treatments and those skip days are no more because now I’m doing dialysis seven days a week.

I need to figure out how to best communicate these new limitations to the people who need to hear them because I don’t want somebody thinking that I’m just being lazy by declining 8:00am meetings while I’m still finishing dialysis or that I’m using the sick excuse a lot when the fact of the matter is, well, I am!

I am disabled, and it’s not like a cold where everything will just get better in a week or two with some antibiotics. Even when I get a transplant, it won’t be entirely behind me because I’ll have to take anti-rejection drugs for the rest of my life (or the life of my new kidney). Big or small, the symptoms will always be a part of my daily life to deal with from now on.

It’s really just about empathy and understanding that some people have struggles that will follow them for life. And life is a lot easier for us when people take the time to understand those struggles and not just attempt to guess your story through their own limited world view.

Only In Dreams

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One unusual thing that I’ve noticed over the last couple of months is that since I started dialysis, my dreams seem to be more vivid and defined than usual.

They’re not quite as good as the ones I used to have on vicodin while trying to pass kidney stones, but these are still pretty clear! They tend to be less elaborate – like little vignettes instead of full length movies, which admittedly can be a bit frustrating because I know most people have woken up in the middle of a dream and wished they could pick back up where they left off, if only it were that simple…

Some of the more interesting ones I’ve had lately:

  • Both of my parents showed up to visit me at my cubicle work.
  • I was packing up a Uhaul of my things to move down to Florida that included Legos, Nintendo Power magazines, and several fishtanks full of goldfish.
  • I was invited to a meeting at work for a project that I had nothing to do with, then got harassed by the leader of the meeting and fled to the cafeteria where I accidentally snuck past the cashier and took a Long John donut without paying for it.
  • Another one about moving to Florida, except this time I was bringing five friends along with me in a very small sports car that didn’t have room for their luggage, much less any of my own belongings.
  • I showed up and worked at the warehouse for a couple of hours while I was there on vacation, then just asked if they really needed me when I remembered what I made at my tech job down in Florida. Also, I couldn’t remember my passwords to login to their computer system anyways…
  • I had one recently where I actually realized it was only a dream and for some reason proceeded to drive my car out the window of a multi-story building, a la James Bond or something?!
  • And the weirdest one had me on a bus trip into Canada where we stopped at a hotel, but there was no parking available in the lot so the owner told us to park on the roof of the hotel, which was incredibly scary because the ramps were all super thin and even up on the roof they had us right next to the edge with no railings or anything! We had to carry all of our things down, though once we got back to the ground another group’s leader mentioned that there was some sort of pulley system that we could’ve used to move our luggage down.

I wonder where I’ll go tonight!

Where’d I Leave Off???

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I’ve been meaning to write this post for a while now, but life has been a little crazy as of late. Go figure!

So I’ve been doing dialysis for five months now.

It’s certainly not my favorite thing to do, but it’s keeping me alive and who can really put a price on that? Well, aside from my insurance company, anyways – ouch! Thankfully the costs are pretty much covered between my private insurance and Medicare, and we’ve gotten used to hitting our Out of Pocket Max each year from the therapies that the kids used to do at home, so financially it’s not that big of a deal…

It can definitely be overwhelming, though – the extra time that it takes out of my schedule for treatments and doctor’s appointments, the added fatigue, the added sensitivity to things like diet and exercise – it all adds up to the point where I’m having to force myself to re-evaluate my new normal, so to speak. Needless to say, I relate more to the spoons method than I ever have before!

Still, I don’t want to sound all woe is me because when I compare my experience to other people going through the same thing, I realize that it’s actually going pretty well for me right now. I understand the process, which is something that I hear older folks struggling with when I go into the clinic. For the most part, I don’t have much trouble sleeping while the session is taking place, which some say that it’s hell for them to get comfortable. And I think I’m the most sympathetic for the kids that I read about struggling with doing dialysis at their young age and just feeling hopeless that their lives will be anything more than living off of a stupid machine.

I mean, I can complain about not being able to travel much or swim right now, but at 43 years old I can certainly say that I’ve done a lot of the things that I want to do with my life. I couldn’t imagine going through all of this in my teenage years when all I wanted was the freedom to explore life, whether that meant skipping out of school to go see rock concerts or staying up half the night with my friends attempting to create our own! I’ve struggled with depression myself plenty, so I get how looking at the requirements just to stay alive would be pretty dismal at that age.

Motivation has been tough for me lately, even compared to how I felt six weeks ago, so it gets easily overwhelming to look at a list of ten things that I need to get done and have to accept that right now maybe just a couple of them is all that I can reasonably handle. Which is tough because the rest of those ten things still exist and need to get done, but at the end of the day you can only do as much as you can do – whether you’re sick or perfectly healthy.

On top of that, it’s frustrating because I have a couple of tasks that have literally been following me for several months now – a savings account that I’m trying to help my Mom with, an issue with my new Medicare policy, and a side effect that presented itself after I started dialysis that I need a special surgery to correct. Nothing too crazy, but when I’ve got such limited mental bandwidth, I’d love to get them wrapped up so that I can focus my energy on literally anything else!

Oh yeah, and I’m still working on getting on the transplant list, too, though thankfully I’ve only got a couple more tests on my checklist before my case can go to the review board. They say the wait for my blood type (Type O) can be up to five years, so I’ll still be hoping that a living donor will come forward between now and then, but we’ll see what happens.

In the meantime, I’d like to start blogging more again, which I know I’ve said a brazillion times, but creative output seems to help keep my mind in the positive so this summer we’re going to try a little more of that and a little less sweating to 95-degree days in Florida!

A Meal’s Worth of Calories on Dialysis

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Something that is definitely going to take some getting used to is “losing” some calories out of my diet due to the sugar in the dialysis fluid that I use.

It’s estimated at around 500 calories a day, which is basically like drinking half a pitcher of Kool-Aid without the pleasure of actually drinking any Kool-Aid!

For example, yesterday looked like this…

  • Met-Rx Apple Pie Meal Replacement Bar – 380 cal
  • Banana (half) – 45 cal
  • Dialysis Fluid – 500 cal
  • Onnit Cookies & Cream Protein Bite – 140 cal
  • Almonds – 200 cal
  • Krab Wrap w/lettuce, cheese, mustard on Carb Counter Tortilla – 350 cal
  • Strawberries – 25 cal
  • McDonald’s Fries – 100 cal
  • TOTAL – 1740 cal

Now my calorie budget, not accounting for exercise, is around 2,500 on a daily basis, so even with a calorie deficit of 500 I probably should’ve eaten a little more yesterday. The dialysis fluid is basically a meal by itself, but because I’m doing it during the day right now it’s making me not as hungry in the afternoon, whereas when I’m doing it at home it will be overnight while I’m sleeping.

I will say that all of this – so far, anyways – is making me take my health a little more seriously, which admittedly is something I should’ve done years ago but that’s neither here nor there. I’m a little more confident about being able to lose some weight, though I did lose like 30 pounds last year, so hopefully I can make the best of a bad situation and make some changes that will help carry me through the years to come.

So How’s Dialysis Going So Far?

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In a word – …ok…

I’m writing to you live from my fifth day of training, so I’ve only got a couple more to go and then I’ll be ready to take this show on the road, or back to my house, anyways. I had a little hiccup last week that hasn’t been entirely resolved yet, but hopefully it doesn’t interrupt the process anymore so that I can try to get on with this “new normal” in my life!

I really have learned a lot this week, from simply how to connect myself to the PD dialysis machine and make the whole thing work to nutrition, biology, human hygiene … at times it’s been a little overwhelming, but thankfully I’ve had pretty great teachers and their documentation seems to be on the ball, so I’m not too concerned about missing something.

I think the most daunting part is how so many pieces work together to replace the functions of my dying kidneys, and how everything needs to be kept in balance so that fluid levels do what they’re supposed to do and not cause more harm than good, and how pretty much everything bad can eventually lead to peritonitis … which is basically an infection in the area where PD dialysis works and the most dangerous thing to a patient like me!

It’s manageable, yet definitely a big change that is going to require a lot of coordination and time, but it’s better than hemodialysis (which uses needles) and much better than a way too early grave. Fighting it will get me nowhere fast, so I figure the best I can do is come into it with the best frame of mind possible and use it as a daily motivator to live better so that one day when I do get the option for a kidney transplant, I’m in the best shape to receive and make the best of it as the second chance that I really need.

I’m not crazy about making statements like that in my early 40s, but here we are!

Walking to Mordor, Revisited

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Over a decade ago, I had stumbled across a fun, little video series about a group of guys who traveled to New Zealand to see the locations from the Lord of the Rings movies, including walking the some 140 miles between them.

This year I’m doing the same walking myself, virtually at least!

Apparently since the pandemic virtual marathons have become a thing where you do the running or walking on your own and then they just send you a medal when you’re done. Sure, I guess you could lie and claim that you finished when you really didn’t if you just wanted to pay $50 for the medal, but that’s neither here nor there because I need the exercise and I thought this might be a fun way to motivate myself!

Plus, the Lord of the Rings aspect just sounded cool and the medals they created are pretty awesome…

So for starters, just as our fearless hobbits did, I’m setting out from Hobbiton on my way to Bree (where they first met Aragorn, or Strider at that point). In total, it’s estimated at around 145 miles, for which I gave myself a goal of 90 days, thinking that if I average about a mile a day with a few longer walks along the way, I should be ok.

I didn’t take into account the daily walking around that my Fitbit tracks, so plus actual exercise might trim my time back a bit more.

It’s kind of neat how it’s linked to my Fitbit account, so I don’t have to log anything – it’ll just carry over my daily steps each day and add them to the total when it’s over!

Today was nicer than it has been outside, so Christopher and I got in our first walk of the year and what ended up being our longest walk ever at around 3.5 miles!!!

It’s a route that I used to walk Cleo on all of the time, but I haven’t done it in a while and my legs were hurting by the end of it!

Of course, the nine year-old was still filled with energy and managed to run a bunch of the way home!

Anywho, I’ll write in another post how great it’s been walking together and having a coach to keep me motivated! 😉

For now we’re just trotting along, a couple of hobbits out exploring the big world with some hand-me-down jewelry to dispose of. Eventually we want to start taking the dog with us, who should be useful for fending off Nazgûl and whatnot, given how protective he gets of our own little hobbit hole!

Looks like 2023 was busier than I thought!

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  • Learned how to pan fry fish and shrimp
  • Took two vacations to our new favorite getaway, Vero Beach
  • Loved every minute of The Super Mario Bros Movie at the theater
  • Visited Kennedy Space Center and saw a rocket launch
  • Flew in a private jet with my Dad and sister to bring him home for hospice
  • Fully committed to homeschooling our kids
  • Took the kids on their first airplane flights, watched them drive a boat, and kiss the moose
  • Memorialized my Dad at the camp we used to visit
  • Played in multiple ball pits
  • Learned a lot about kidney transplants
  • Went on some great field trips with our homeschooling group
  • Built a home gym in my garage
  • Swam with a manatee in the wild with my family
  • Spent some much needed time listening to the ocean
  • Had two surgeries in preparation for my failing kidneys
  • Walked 25 miles with Coach Christopher
  • Celebrated Christmas with both sides of the family

So here’s to a 2024 filled with good health and more great memories! 🥳

Traveling Used to Be So Much Easier…

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I guess I must be getting older because these days when I look at the idea of a road trip, I audibly groan instead of getting excited for a brand new adventure!

20 years ago I traveled 1,438 miles across the country to start the next chapter of my life in Florida and I did the entire thing in two days. Last year I repeated the journey after spending a month in Michigan to help care for my ailing father, and I was just about comatose by the time I finally made it back home again … and that was a solo trip without kids!

More recently, this week our family traveled up to North Carolina for the funeral of my wife’s aunt, and it was a mere 600 miles, so we figured we could just do the drive in a single day. Being from New York, apparently this was her halfway point when driving down to Florida (mine was Chattanooga, TN), so how bad could it be???

Leaving home around 10am, we arrived around 9pm, making the whole trip about 11 hours, which we thought was pretty good assuming a couple of hours for breaks, food, and gas throughout the day.

Coming back home, we left closer to 11am, but didn’t arrive until 1:30am, clocking in at 14.5 hours because traffic on I-95 through the Carolinas was stop and go for almost the entirety thanks to holiday traffic and those states’ failure to buy enough road for their stretch of the drive!

Ironically, the kids did awesome at the middle part of our trip, which was appreciated because that was the funeral and meeting family and whatnot, but where they could’ve done better was the drive there and back, and if I’m being honest, one of them did excellent, one of them did pretty good, and unfortunately the third one was an absolute fucking nightmare for all three of them.

It sucks how one person’s unreasonably salty mood while trapped in a moving vehicle with hundreds of miles left to go can make everybody’s blood boil, and there’s nothing you can really do about it. I mean, you can try to reason with them, which works about as well as reasoning with a tantrumming child usually does. Or you can try to ignore them, which works until an outside force – be it another driver doing something stupid or another child complaining about you not dealing with their brother – piles onto the mess and breaks your fortitude.

On the way up, I was lucky to intermittently sleep for most of the ride because my wife picked up more than her share of the driving, however I ended up doing like six hours in a row coming back simply because she was otherwise occupied holding said child’s hand while he refused to go to sleep for five of those six hours.

That said, today in the car while we were going to pickup the dog, he wouldn’t stop yelling at me about the sun being in his eyes, so maybe there’s something else going on there anyways!

As if needing to stretch for far longer than we ever did 20 years ago after such a ride wasn’t enough, it’s the whining and the more frequent pee breaks and the $40 snack stops that make road tripping with the family much more of an ordeal than they were in our youth.

A wise man once said, “The journey sucks – that’s what makes you appreciate the destination!” (Chevy Chase, Vacation)

For what it’s worth, the destination was pretty nice, albeit cold this time of year. My wife got a chance to see her family and mourn her aunt, which she really needed, and later that night we all blew off some steam running around Dave & Buster’s.

26 hours of driving for roughly 12 hours of quality time, but sometimes that’s the schedule that life gives you.

Kidneys & Me

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I felt like writing because I haven’t done much in a while, and while admittedly I haven’t written much about this topic in particular because it’s very personal and very scary, let’s talk about the elephant in the room…

My kidneys are failing, and they’re not being slow about it anymore.

I learned that I have Chronic Kidney Disease about six years ago, though with my battles with high blood pressure dating back much farther, I’m sure it was slowly working its magic for a long time. Mine presents itself as something called Polycystic Kidney Disease, which is a genetic disorder that has both of my kidneys being overgrown with cysts. These in turn force them to work harder and grow, so for a truly frightening visual, your average kidney is about the size of a fist, whereas my kidneys have grown to roughly the size of footballs.

Big, disgusting footballs that have done less and less of their job as they endured, until now when they’re finally on the brink of failure. If you really want to be grossed out, here are some pictures … not of mine, but enough to turn your stomach either way!

So where do we go from here???

I’m young-ish … this summer I turned 43, and goddamn it, I still have an awful lot of life that I want to live. My kids are only elementary age, so they’ve still got a decade or more of school left. My wife and I have been married for 16 years, but we’ve been focused on the kids for so long that our own dreams and ambitions have taken a backseat. I still have books that I want to write and memories that I want to make with all of them, and the last thing I want to think about is whether or not kidney failure is going to tear all of that away from me sometime in the next decade.

The first step at this point is starting dialysis. I should be doing that in about a week’s time, as I’m nearing the end of healing from two surgeries that I had this fall to prepare for it – first to repair an umbilical hernia that I’ve had for a long time, and then to install a peritoneal catheter that I’ll use to go through dialysis treatments at home while I sleep at night. The last couple of months have been a long road, particularly when the first surgery failed and kept me in the hospital for a week, but now that those are both behind me, I’m ready to find my new normal and adjust to being a kidney patient on dialysis.

It’s weird because I’m not really scared of the dialysis itself – not yet, anyways. I know about the risks for infections and I know of people who have died on dialysis (not this kind), or from a refusal to do it. At the same time, I see it as a bridge to keep moving forward because right now with my diminishing kidney function, I get more and more fatigued and sleep longer simply because my kidneys aren’t doing everything that they’re supposed to be doing. Truth be told, we probably stretched out starting dialysis a little longer than we should’ve to accommodate the surgeries because it would’ve meant doing hemodialysis instead of peritoneal and I’m really trying to avoid going down that road.

So I’m hopeful that this time a month from now, I’ll find myself with a little more energy and maybe a little more time in my days as I accept letting this machine pickup where my body is failing me. 😉

Beyond that … is the option for a transplant.

That’s admittedly more scary because it’s so uncertain. I know that I’m starting dialysis, but there’s no guarantee to somebody else’s organ. I’m in the process of getting on the waiting list for donations, which could take a couple of years. I’ve also posted on social media about looking for a living donor, but that comes with its own set of mental obstacles because it’s a lot easier for people to say, “I’m praying for you…” than it is to take on the risk of offering up a working kidney of their own.

And just to be clear, I can’t fault anyone for not wanting to donate an organ. The risk isn’t zero, and you have to travel and miss some time from work which many people simply can’t do. In a way, I kind of liken it to when we were going through IVF trying to start our family – it’s just one of those things that is so big that it’s hard for someone on the outside to really understand what you’re going through on a day to day basis. Some may try, and others may trip over their own feet trying, but most people will go back about their day after they post those words of encouragement.

That’s ok, and the kind thoughts are appreciated. It’s hard to say what will be the determining factor for that one person out there to decide, “Yes – I think I want to do this.”

Until then, it’s quite honestly a roller coaster of emotions and right now I’m just trying to focus on enjoying Christmastime with my family and getting ready for this next phase of my life.

I’ve been learning more about diet and nutrition, and trying to get that under control … although holiday snacking definitely makes it more difficult. I’ve been really yearning to exercise, probably mostly because I’m not allowed to do much of it right now. Since November, I’ve taken to walking regularly with Christopher, which has been awesome, except that the weather has really been sucking lately so it’s hit or miss when we actually get to go. The alternative is us using the elliptical and bike in our gym out in the garage, though right now it’s piled with boxes from Christmas decorations, so I probably need to get on that this week…

What comes next is to be foreseen, and I know that tomorrow isn’t promised to any of us, so I’m really working on things I can to do live life more in the moment and maybe not defer so much stuff to maybe eventually someday as we often tend to do.

I definitely would like to start blogging more again. I know that I’ve said this so many times before, but maybe this time it will stick. Who knows?! There are things I’ve decided I want to write less about as I get older – namely things like rants and reviews and even opinions, because let’s be honest, there are a billion different opinions online these days and most of them are pretty terrible!

If I can tell some fun stories, though, and share about the things that I’m still passionate about, those topics we can always use more of, so I’ll see what I can do on that front.

Happy Holidays, from my failing kidneys to yours that hopefully are not! 😀