Week Eight: Back in the Wagon

Thank god. I made it back home through the gauntlet of the worst airport on earth, and lost no luggage or limbs. Frankly, travelling in the summer of 2022 was super tense between other people’s cancelled flights, lost baggage and masked flights to and from Europe where even standing in the aisles was prohibited. Made me totally accept that World Masters in Vegas for September seems like a dumb choice, but my goals of weight-loss and training have no reason to change as there will be the Canada National Pro and Toronto Open coming up here.

So, two weeks of “faltering keto” and I really felt my body need to go back on the lifestyle. Estonia was hard because it is a carb-based society; camping was hard because it is convenience and processed food based in Nature. Regardless, one of the main concerns that I had about this diet was that it was all or nothing; every time I was forced outside of the diet program by life I would need to fight my way back through keto flu and two weeks of failure. Nope. Took one 21 hour fast and two more days to get back into light nutritional ketosis even though my glucose remains a little high. By next week, I should be golden and ready to start cutting calories again to reflect my goals and be able to train without feeling bloating in my abdomen. That was the great thing about training for hours a day in Estonia: I could eat whatever and just burn through it easily. In Toronto that will never Ben the case.

Felt good to finally be able to attend the virtual group meeting, too. Dr. Weimbs joined to answer any questions participants asked, and I learned a few more details about KetoCitra compared to other “ketogenous” products for the diet community. hearing about some of the science of testing and trials with rats helps put ideas into perspective even if the results in humans are not the same eventually. I am always skeptical about trials and the facts offered by second parties, but given that my own results continue to improve in my own key areas (weight, energy, blood pressure, inflammation), I feel like this is an interesting project of pioneering for later generations or maybe the guy down the street who just got diagnosed and is in full panic.

I am starting to get static at social events. People seem kind of upset when I won’t eat the birthday cake or chow down on samosas because of my “diet”. I am fine with it. I have zero problems saying no, and I have no real need to preach about the diet. The keto-therapy diet is a lifestyle change versus a “beach body” effort; I have no problems watching you eat a quart of ice cream and a burger – my daughter does that in a small scale because she is five years old and ice cream is key to a childhood of reckless joy. They will take it away soon enough once she wants to fit into those jeans or play a competitive sport or dance. I have no issues; eat away, but respect that I cannot and will not today. I think much of society’s hive culture functions as such: our friends prefer that we look and act like them when together. I guess the difference is that they do not have PKD and my body has different needs. It is all good.

One positive indicator for the diet remains my consistent weight loss since the beginning of the program intake month. In part that comes from being aware and accountable for my calories, but the efforts to avoid carbohydrates undoubtedly helps with the loss of actual fat versus just fluids or muscle tissue reduction. To get back into the 169lb range makes my body feels so much better overall. Wearing clothing feels better, I have very little flank ache and I feel calmer emotionally without the ups and downs of sugar/carbs as my fuel. Ideally, I would like to be between 160-165 pounds as that would be very fit for my short height of 5’6″. Now I know I could cut to that pretty easily, but I would rather keep this steady progression downwards going as I have no feelings of deprivation. If the weight loss stops naturally, then maybe that is my new normal and I can accept that.

Sustainability is undoubtedly the hardest part of a ketogenic lifestyle change for most people. Frankly, our bodies prefer homeostasis and returning to a previous state that in considers normal. The challenge of a diet is that it must become a lifestyle change that is permanent if progress is to be positive. And, well, bread tastes good, pasta tastes good, buttertarts taste euphoric, but they will kill me with their beauty like a siren calls to the unwitting sailor. Can you simply hoist yourself to be tied upon the mast so that you can hear the mermaids singing, as the hero Ulysses did in the Odyssey? I think it would be wiser to plug your ears with wax and keep rowing forward, as we all find ways to come down off the cross after a while.

What I find helps is coming to terms with the possible outcomes of choices. If I eat that Snickers bar, then I will want more and it is a steady road to dialysis wherein my food choices become permanently limited and somewhat dismal. However, if I choose to eat wisely now, and within a clear framework of moderation and boundaries, then that eventual outcome might become distant or never happen. Being very mindful of choice is a good way to avoid feelings of deprivation, so when I was in Tallinn and the restaurant offered house made, richly dark pumpkin rye bread I enjoyed it thoroughly, because not to do so would have left me with regret. But then, I can easily avoid processed bread at home or out at a fast food place on my way to an adventure like camping or our upcoming drive to Prince Edward Island. Pick your poisons carefully.

The taste of sweet has dramatically changed over the past month. I definitely taste raw food much more differently than before. Greens and herbs have more taste, fruit is super sweet and coffee is pretty intense. In some ways it is great, but then it does make eating those sweet things disappointing because they taste too sweet and sickly. I would say that most of my daily choices come more from what is in my fridge or garden than the Ren.Nu recipes. I might look at them as an idea space and then work from there. I did pick up some cauliflower rice at the grocery this week, just to save the hassle of grating it, but I will season it based on the meal we’re are eating instead of what a recipes suggests.

I also find that I no longer have that disgusted response to have a bit more fat with everything. I do find that cooking my kale and chard with lots of olive oil make both sides of the coin more palatable. In the end the week has gone fairly well. Next week should be stable and easier as we prepare to drive back to my home province for 3 weeks to spend time by the ocean. It will be easier to eat properly there as seafood is available and there will only be what I buy in the rental cottage for food. I do wonder how the diet will work come winter, with cold temperatures and darkness. After all…winter is coming.

The Negative: Danger of Worst Case Scenario Thinking

Life is brilliant. As I spend my last days in Europe, I cannot help be appreciate that this all could be gone in a blink of an eye for me. When I was younger, I was struck by the pressing nature of the need to travel while the world was expanding, because history dictated that it would contract again. Japan, Russian and China have closed borders at the turn of the Victorian period, but in 2020 the whole world closed. War is on the horizon for a place like Estonia and who knows where China will aim its dreams. I was concerned about even coming to this camp with Covid still lurking and the war in Ukraine being not so imaginary for here. My wife’s family left here at the end of WWII for a reason, and I feel blessed to have been able to come here twice in recent years for jiujitsu camps.

I know now that I will never get a safe chance to visit China or Russia based on their human rights infringements. The Trans-Mongolian Railway is now a pipe dream of an adventure. Africa is out as well as it has become a melting pot for viral mutations without full vaccine strategies. I do wonder what opportunities Phoebe will have as a world citizen and what I can do in my lifetime to help her develop as a traveller. Two decades and I keep finding ways to make this easier.

Money helps. It helps to be able to afford refuge without sheltering yourself from too much of the reality. Eating Big Macs and staying a a room serviced Four Seasons accomplishes less than nothing. However, having the funds to buy access, transport, shelter, and the such makes travel easier. Now I am not rich, by any means, but I leverage points, buy long term quality items for travel and love grocery stores for the experience and cheaper food options.

Tech is now everything. You NEED a smartphone. You SHOULD buy data while travelling. You MIGHT consider versing yourself in the best apps to make any travel easier. For this adventure I needed to load up Two airline apps, ArriveCAN, and Bolt. TripAdvisor is more used than Yelp in Estonia, so on it went. Wallet became essential for accessing hotel room codes and reservations. Bolt was ubiquitous for accessing scooter or taxi transport. Getting a 49 year old to decided to hop on a green scooter was a challenge, but Bolt actually made everything easier. But, man, QR codes are everything now. While I am glad I did not upgrade my iPhone yet, I will when the new 14 comes out. Tech is essential to connecting with people, sharing info, footage collection, and just finding your way around a beach town where the idea of the English grid system is simply not present. Data seems to be costing me about $15 a day here, which adds up, but the ease of travel and less wasted time/money make up for the costs. I do appreciate being able to call home without speaking to operators or dialing in weird codes. The world has changed since my first trip to the UK when I was 21.

Getting to the airport or even the Bog Walk was made a hundred times easier using the Bolt app. I never needed cash, I could find my driver and it all seemed way easier than Uber (which I avoid in Toronto). I hate taxis, but somehow all things Bolt seemed like it had gotten things right in Estonia. Now I would not ride a scooter in Toro to, but then I have my Ducati Diavel for rides in the downtown core.

Now I did make a few calculated errors like buying the camp meal plan (still better to lose a bit than possibly not have food), forgetting my camera battery in the charger at home (so lugging an expensive lens and body for no reason), drinking too many Chimay Blue on the first night of camp with Katy and Angel, and thinking that I could do keto on this trip. If that is all that goes wrong, and I get home in one piece today, then that is all good. Overall, I feel pretty good about this trip. While I did nothing crazy like going swimming in the big pond or party with the Globetrotters, I made those choices for kidney reasons and that is necessary if I am to keep travelling in any near future.

Which brings me to the elephant in the room: how long can I hope to travel with PKD. Santa Barbara Nutrients posted the above image on their Facebook feed, and, frankly….I HATE this image. I simply hate it and always feel the worst thing that medical professionals can do is throw out the old “worst case scenario” to educate patients or the public. The idea of carrying around 60 pounds of kidney weight and having all of that internal pressure in my body just…well, makes me want to give up. It does. While different it is akin to telling a pregnant woman that she might need to carry a dying baby that will keep growing and may never be removed. It is not pleasant or all that helpful.

How does this relate to travel? What about jiujitsu? If I end up with kidneys and cysts of that magnitude, then sitting in economy is over. If I end up on dialysis, then travel is over. If I end up with either of the above two, then jiujitsu is over simply because I will no longer be able to invert or take pressure. So, yeah, the infographic is depressing AND I do not believe that is a positive way to educate about PKD. Maybe I am foolish, but I firmly believe that people need to hear about success and that there are ways to slow the progression of the disease. Maybe I am wrong, and time will tell, but I see that intermittent fasting, ketogenic diet, lower calorie intake, consistent exercise, positivity, meditation and connection to community can improve the outcomes. I may not beat Death by PKD, but then no one beats Death. I am not aiming for that; I am trying to hang out with Life for as long as I can in a managed, thoughtful way. I have too much to live for to simply give in to the voices who seem to surrender to the inevitable.

I do appreciate those readers who have taken a moment to click a like or make a comment; not for any “social media” gain, but rather because hearing that my writing reaches others with PKD makes this type of writing seem somewhat valuable to the community. Now I get it; not everyone is going keto, training jiujitsu and what not, but maybe, just maybe, a reader feels a little better, tries some kale for the first time or starts meditating when the anxiety hits at 2am like it has for me during much of this travel adventure.

I feel like I have about another 16 hours in transit and have already been fasting for 20 hours, so not eating on the final leg of the journey might be a little over ambitious, but we will see. I am not moving much on the flights, so it is not like I am going to starve. Seems like a good plan for now, and frankly my kidneys could use a break from the Estonian diet. The path is long, if one is lucky.

Week Seven: Jiujitsu in Estonia

It remains hard to believe that I am still able to train Brazilian jiu-jitsu with Polycystic Kidney Disease after five years since the diagnosis. Frankly, most doctors would tell a normal person my age to stop; they have told me in the past that it all seemed a little too much, but then that is to be expected: most people see the idea of a combat sport to be for crazy sadists. Most people might be right. But then again, jiujitsu has kept me stable and with purpose since I began seven years ago, so it has a deep intrinsic value within my paradigm.

In fact, one of the main drivers for me to join the Ren.Nu program was so that I could regain some of what I lost through Covid and three sclerotherapy procedures last year. Some of the loss was actually a weight gain that came from being unable to train, find the fresh food I knew I should be eating and that added to blood of pressure and stress levels. The reality is that in my experience, the mental health toll it takes on patients is quite devastating, relentless and exhausting. To know that Death or dialysis is waiting just down the road is not a cozy-comfy feeling. Ahh, and most doctors are not really able to help much in terms of answers, positivity or timelines. We have heard the drill: drink water, eat better and good luck. But what if there was something tangible that you could arm yourself with, a bit of armour and knowledge?

I guess that is where the Ren.Nu program filled a whole for me at this juncture. It is a bit of armour that I can take with me for the long haul, and that might make all the difference. Who knows? What I can report is that I am learning and adapting my food intake in a way that works for me. Will it keep working? Will it solve some issues? Again, I am not sure if that is the point. The endgame is not the point, rather the moment is the point, and right now the program has given me some strategies to implement so that I can travel to Europe to train 3-5 hours a day with some beautiful monsters. I can move. I am not feeling too much kidney pain, and my recovery seems reasonable for the next day. For my mental health, to be able to rejoin the BJJ Globetrotters for another camp is almost priceless, and a prize for making to here, through Covid and through my sclerotherapy sessions and my wife’s open heart surgery last August. I am still here.

Food is a mix of good and bad. Good luck finding an avocado in Parnu. As a Baltic state, Estonian food is fish-based with some pretty healthy vegetables, dark breads and alcohol-expected. For the week I signed up for the vegetarian meal plan, which means that I can get vegetables and fruit three times a day. Otherwise, my options are restaurants or convenience foods. I am doing my best to hydrate, eat fruits and vegetables, lower my meat intake and accept that I am burning through calories all day long. If I do not eat carbohydrates this week I would not make it without injury. Now that being said, I am really trying to always make the healthier choices at every meal knowing that it will affect my return to strict keto next week. It is not a zero sum game where I can just eat cheeseburgers, drink beer all week and hope for the best. I can do a tiny amount of that, but frankly, my body does not like how I feel after or during such “cheats”. I crave fresh food and fibre right now in lieu of fast food or heavy meals. I will consider that a win.

Food intake. One interesting idea that I am reflecting on is how much food I need and what I need to eat at camp to be able to train each day. In regular life I do not eat that much, certainly not three meals a day. Here, I need to eat three times and a reasonable amount for my body to be able to do 2-3 classes a day/rolls. I feel swollen a bit, but also do not have the normal pain I have from one class at home. Anyway, I will be glad to eat normally (keto) again when I get home. Carbohydrate-based is necessary for this much training so that I do not get hurt, but I always feel like there is no space for my kidneys. I think that I should aim for one or two times a year where I train like this and then for the remainder, training should be either less traumatic or few weekly sessions. Pacing while keeping consistent may be my best way forward with PKD….that being said: everyone is trying to kill me.

Maybe the best part of the week was meeting old friends and new ones who could not care less about my kidneys, but rather acknowledge that we all have our own demons but only a few recognize them. I did 8 classes and 14 rolls in the week, which is good but not insane. Generally, my kidneys held out. There were a few moments while wrestling or in a round with much younger guys that I felt clear pressure or pain, but I just stepped it back a bit or stretched through yoga poses for the hour instead of participating in the next class. I knew how to say no to the little voices telling me to push on; going too hard could always compromise the remains of the trip as I do not exactly want to be in a hospital or dental office in a Baltic state as a foreigner explaining how I hurt myself as a person with PKD.

I am on bottom

One highlight of the week was being able to spend an hour in a private lesson with Estonian iconoclast, Priit Mihkelson, whose defensive position system has been the backbone of keeping me (and my kidneys) safe for the past 4-5 years. Basically, I am most vulnerable through my abdomen for cysts to explode from impact and pressures associated with jiujitsu. Priit’s system, however, offers high effective and perhaps counterintuitive ways for me to protect those areas, defend, escape and counter-attack. The one challenge is that it is hard to build a foundation from video instructionals only. I have done pretty well with players who are not black belts, but there were holes that I started to experience since moving gyms. The hour where Priit rebuilt my Running Man position properly, guided me through a proper transitional movement, and improved a few others made a huge difference, which I felt immediately afterwards. I am sure he thought it strange for me to ask for a private lesson on this, but it will keep me on the mats and able to train safely for many more years.

Finally, camp is over. I survived with surprisingly little inflammation or injury. Sure, I feel love me I have some structural weakness but that is more based on just not being on the mats this much on a regular basis. Breakfast this morning is happily just a black coffee, and THAT feels so good. Frankly, having to eat so much just to get through training was brutal. I no longer want to eat carbohydrates, sugars or even meats in the way I used to, so I expect the transition back to ketosis to be fairly straightforward. Some intermittent fasting on the flight home on Tuesday should start me off right as long as I bring water on the plane with me this time. It will be good to get home, it will be nice to actually be able to attend a Ren.Nu session live again, and the rest of the summer should be much easier on all levels. One final moment that warmed my heart was seeing video of my daughter’s first real jiujitsu class at Oshawa BJJ this week. We were able to start her off with world champion, Janine Mocaiber, for 5 private lessons to get her started to encourage her. While we do not know if Phoebe has PKD (nor do we want to know until much later), perhaps jiujitsu will give her a way forward through the impossible like it has me.


Week Six: The Disasters of Camping and Keto

No one said it made sense to go camping while changing over my eating lifestyle. But family needs sometimes are more important than my own, and both my wife and daughter love camping at Arrowhead Provincial Park. I thought I was prepared for the challenge of eating on task, but camping outdoors for a week with only processed foods is not good for anyone.

First of all, the apps we use for the Ren.Nu program, Cronometer and Better, do not really function without cellphone data. Without an accurate way to track my daily macro and caloric intake, I was doomed to fall out of ketosis. There were a lot of spinning balls while I tried to add food into the phone. Eventually, I gave up and just tried to do my best. My best is not good enough for science yet, but all things considered I did okay.

Second of all, fat sources like avocados and cheese do not do well at a campsite. Dehydrated foods with high carbs do well, as does a lot of junk food. Throw in some bacon and eggs, and you get the idea. It did not help when family was pounding back S’mores, but I easily avoided though. Potato chips or a beer to offset the back pain from sleeping on the ground, less so. In the end, I came out okay, but not great. It was a good reminder that while this diet is so good for me, generally, in terms of how I feel, it does not do well without the comforts of predictable food sources or routines.

I was able to meet with my nutritionists for the midpoint meeting to talk about positives and ways I might improve my intake. I took away some great ideas about carb loading before training, about when to test for ketones and how to include more fibre into my diet. I do find these meetings with experienced nutritionists useful for bouncing ideas back and forth, and they have made this all make sense in a bigger picture for me.

Which brings us to international travel…I hit the road on Friday to fly to Estonia for a weeklong jiujitsu training camp in Parnu Beach. If camping was bad, then air travel is a disaster! I have travelled far and wide over the years, but at 49 years old, sitting in a packed plane for 7 hours over the Atlantic without more than 2 cups of water provided is a mess for me. All of the food is cheap, carb-based meals and the lack of movement plays games with the voices in your head; like “what the HELL am I doing HERE?”

Fortunately, all of the meditation and mindfulness work I have done to help cope with the stress of tests, sclerotherapy procedures and MRIs, helped with putting those voices mostly to rest. I finished watching three movies I had half-watched due to my 5 year old’s control of the television, and just sat with my thoughts. I felt awful by my connection in Munich, but despite so many other people having horror stories for cancelled flights and missed connection, I made it to Tallinn with one hour of sleep and not much else.

The past 24 hours in Tallinn have been great. I was able to sleep for about 14 of those hours in silence at a cool shipping container hotel, and walk around the city. I did need to overload on carbs at lunch while I waited for my room to free up, but that helped me sleep for a few hours. My digestive system did not approve of the whole affair, but I should be fine moving forward. At the moment I am eating smoked salmon with water for breakfast, and should be able to eat more cleanly throughout the week of training. Now I did choose to eat at my favourite restaurant in Tallinn last night, but I tried to keep that somewhat clean: smoked salmon with trout eggs to start and a nice, local beef tenderloin with celeriac and carrot. I did eat the house bread with lots of butter, but not t is a special loaf made in-house with molasses, ginger and pumpkin seeds. It is to die for.

Time for me to start the hour long walk to the bus station, but the next week should be interesting. I will gain a good sense of how my body handles the load of training each day again, and I can see how I can adapt to travel in terms of my diet. Now I did not take KetoCitra with me, as I simply did not want to deal with border control in the EU with a white powder. I do have my Keto-Mojo though so that should give me a tab on my blood levels for glucose and ketones. The key takeaway from this week is both that travel is not easy with the diet restrictions, but struggles are not failures. I continue to learn how my body feels on keto, and frankly, how much better that is in general in comparison to a normal carb-based diet.

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