Week 10: Making Permanent Changes Permanent

Any person who has ever failed on a diet will say that they do not work for the long term. Any person who has been successful at making changes for a significant time understands that the way forward is to use the 80/20 rule and make the important changes part of your permanent life routine. Personally, I know that that ketogenic diet is too dificult to fully implement into your life like a religion and maintain it to the letter without feeling like you have joined a cult. To never eat carbohydrates at any reasonable level or to only live in a heavy state of ketosis is difficult on the mind and soul, but the benefits of getting as close to the ideal while still balancing identity and practicality are undeniable for a person with PKD.

My approach to the Ren.Nu program has been with this focus in mind, and perhaps selfishly, I have used the program to guide my journey instead of becoming my journey. I am living my actual life to see what the stress fractures are with the program. I am going to a few restaurants, travelling to places without wifi, dealing with physical activity and jiujitsu training, and then seeing what the hard parts are of making things stick. In terms of being an exemplary member of the group, I probably suck. I have to watch most of the group sessions after the fact due to limited wifi in Europe and at a cottage on Prince Edward Island. I had a rough bout of Covid due to travel. I am dancing with maintaining low level ketosis while never really getting the heavy ketosis that other group members have realized. Still, I am not looking for the extreme ends; my kidneys are not in an extreme state, so I am more trying to reduce the load on them versus repairing them or keeping efgr from dropping to a state where dialysis is imminent. Eventually, I may end there, but that is not my personal focus for the program.

Instead, I am looking for all of the great, little steps that I can make permanent and that are easy to accept. The most important is to consistently reduce the level of sugars and carbohydrates in my every day life. Becoming truly mindful about sweets, starches and processed foods so that they become more of a condiment than the main serving is critical. I love breads, sweets, pastries, ice cream, chocolate bars, potatoes, pasta and rices. I accept that those can no longer be a part of my life. I might accept that I can eat a tiny amount once in a while, once in a week, but it always must remain mindful and measured. I can make that permanent.

Next is to pull in the dark greens with fat sources as my main source of sustenance. Kale, chard, arugula, herbs and the such, are key to feeling satisfied and they need to be dressed in healthy oils, butters, and vinegars. I do not enjoy this food group, but I can accept that they are what will keep my body feeling satiated and with the fibre to maintain digestive health. Moving away from carrots, rhutabaga, potatoes and beets as a vegetable source and into broccoli, cauliflower, asparagus and the like has to be the path. Over time I have become accustomed to looking for salads, vegetable side options and raw vegetables at a restaurant when travelling (I seldom eat out when I am in Toronto).

Intermittant fasting in the 18:6 ratio a few times a week works for me. Switching protein sources from meats to fish, nuts and tofu works as a rule. Exercise has to consistent and somewhat strenuous for my health, though many other PKDers may find that overwhelming. Mindfulness and meditation keeps my brain from panic, and I usually listen to Sam Harris’ Waking Up app two nights a week before bed. Other times I will listen to Great Courses lectures on Audible to reset my mindframe; really, I just need to shift my focus away from what I fear or what is causing distress and unlike music-listening or yoga, I find I do best when my conscious mind is forcibly diverted from what it wants to ruminate upon.

What am I bad at, or what can I not totally commit to yet? I am not ready to fully give up a glass or two of wine when dining with friends. I am steadily reducing my intake, however, and veering away from carb-heavy beers or sweeter wines/cocktails. As I take Ramipiril these days for my blood pressure to reduce the load on my kidneys, I also notice that alcohol affects me in negative ways and hits me hard initially and afterwards. So alcohol is steadily being reduced more and more until it will become a more rare treat to savour. Coming from a French/Irish background, however, makes it difficult to totally remove from what I value as a true life. That is just me, and I get that.

Otherwise, I still have a few weeks left of the program and see the value it has had for me over the past three months. I have lost between 10 and 18 pounds (depending on how you measure it due to water retention) and feel far less inflamation. I still feel like my ideal weight is about 165 pounds, but these last 5 pounds are going to require slow, steady loss to make them permanent in a real way. The KetoCitra is a nice addition to my routine, but I am still not certain where exactly it fits into my daily life. The cost is still a little high for it to be a twice daily drink, and with the Ren.Nu program discount gone, I am not sure what I plan on doing about the medical food’s implementation. I have three containers left, so will continue to use and experiment with it post-program.

The KetoMojo meter is kind of fun and really useful for my metrics. I appreciate how it keeps me honest, and it is an easy to use tool that gives me usable feedback on ketosis. I will still need to procure strips from the USA through family over time, but maybe by the time I need more needles and strips they will deliver to Canada. Cronometer is great with the “gold” or whatever status the Ren.Nu program upgrades my app to, but I would probably revert back to MyPlate post program as I prefer their free version to Cronometer’s free version.

I have blood tests coming up soon, so we will see if there is any appreciable difference in the labs. I also have a schedule MRI mid-September, so that might give me and my nephrologist some new insights as well. In the end, I am more concerned about how I feel and look that the hard metrics at this stage. I mean it has only been 3 months…I am more interested in what this will do in a year or two, because that is how I prefer to perceive change. I have had a few challenges with flank pain this week, which has not been the case for most of the program. I might attribute that to the random after-effects of Covid, or that I consumed too much food while dining with my former university professor and friend at his house. I can, and have to accept that I am never going to be fully healed of PKD, but that has never been the focus of this program. My focus is to improve my life and final outcomes with PKD. If I had been seeking a “cure”, then perhaps I would feel great disappointment and futility by the end of the program. Maybe. I do not know. Instead, I am seeking what works for me at this particular stage in my disease and my life expectations. I feel pretty good about that part of my quest; looking for the holy grail can only lead to a journey that is perhaps misfounded in its aspirations. Seek what is possible, and along the way the impossible may find you.

Week Nine: Covid Comes to Fight

It had to happen eventually. After the European travel and jiujitsu camp, after the 4th vaccine, after two years of safety, Covid hit me. It hit me hard. I knew it would and frankly, I have worried about its long-term effects on my PKD, lungs and heart. Still, like death and to quote Tori Amos, “Can’t stop what’s coming, can’t stop what is on its way”.

I have to say that no matter what the politics of America likes to suggest, Covid is awful. As a PKD person, this may have been some of the hardest moments of my days during the past few years. I had five days in absolute bed rest with maybe only an hour of meal preparation a day. Nothing felt ok. Nothing felt like it would ever be okay again. I had fever. I had some serious pain. I had nightmares wherein I felt messages that my dna was being rewritten in the night. It was horrific. I still feel like that may have well happened. All of that being said; I was healthy and ready for Covid, at another moment in my time this might have killed me.

So…yeah. How about the Ren.Nu program? I am not sure what to say other than nothing mattered more than a Snickers bar for about 5 days. I had no appetite, ate nothing except for sugar and got maybe 700 calories a day. It sucked. I hated it all and the tealized at the end of it that I had lost my sense of smell 100 percent. I put on my favourite perfume before bed and smelt nothing. Now I understood why the room smelled but I did not know it. Losing your ability to smell is a disaster; not realizing that you had for a few days is disturbing.

Otherwise I am doing okay. I am still hitting 0.6 on my ketones and losing weight overall. I feel awful and have no desire to eat except for the most random of cravings and I just have to accept those despite the idea of diet. If I can only eat a double chocolate donut from Tim Horton’s on the ride to PEI, then that is what it is. My calorie count is tiny, so whatever. I need to just get through Covid; I am not there yet.

I made it home to Prince Edward Island after two days of driving and it will take a few more days to get back to normal. I also officially signed up for the World Masters in Las Vegas next month despite all common sense. The game is afoot and all I can do is play.

At the end of this week, I feel a mess, but I also feel pretty solid. For me to sign on for Worlds while reconfirm Covid must mean that I believe in my dietary lifestyle changes and the way I am moving forward. Let’s see how it goes, but despite the awful physical challenges of Covid this past week I feel like I have a program that works to get me to the other side. Not bad, not bad at all. Eating lots of seafood and avocado on the Island, and made it to a jiujitsu class yesterday.

However, my lungs and heart are just not normal. Took a LOT out of me to do a 5km run and the class at Gracie PEI, but I also felt like I needed to push my body a bit to recover. Apathy can create entropy in body systems sometimes.

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.

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.

Dhdhf

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.

Week Five: Making Better Choices As I Hit my Stride

The relief of no longer feeling like I am starving cannot be underestimated, and that has made this week far more bearable in terms of the keto diet. I feel like what I am doing is accepting some of the differences in what I can eat, finding ways to substitute cravings for more responsible options, and not beating myself up when I just need the carbohydrates due to training. I am also experimenting with using KetoCitra as a way to stay in ketogenic therapeutic levels on those days I need the glycogen to replace what was lost in session. To put things in perspective: in a hard session I may lose around 1100 calories in an hour of Brazilian Jiujitsu and that involves every muscle in my body, from toes to nose. Monday I did a noon session and a seminar (total 4 hours), Thursday I did 8 hard rounds and a class (2 hours), and Saturday began with an hour private lesson. When bigger, younger, faster men are trying to kill you, the glycogen disappears far faster than say a 10k run or an hour of yoga. Think of it more like running while doing yoga as people try to strangle you. Fun.

So far the experiment is working well in terms of how I feel after and before sessions. My ketone levels could be higher, but then for me that might not be as useful if I cannot do the physical activity that keeps me focused and happy with life. I am not certain how I feel about the process in the long haul, but right now, this week felt so-able for a lifestyle, which it did not before.

I have also been able to thrown in two 16 hour fasting periods, go for a 10km walk and rest a bit after a harder week before school ended. Looking ahead, I have my MRI scheduled for September, have a week training in Estonia, go camping this week and also spend 3 weeks visiting family on Prince Edward Island after that. Warmer weather means that I feel less aches usually and Hope seems easier to evoke from something as simple as a bird chirping at 6am.

As you can see from my weight charts, my weight loss since getting ready for the Ren.Nu program has been steady; nothing too drastic, but steady. I feel like my body composition has improved and inflammation of my joints is less, too. Blood pressure has steadily improved as well and stabilized since starting the program. It had rise as 2022 began for no obvious reason, and I would not necessarily attribute it to Ren., but then it seems to follow the weight loss curve. for full disclosure I did opt to start taking 5mg of Ramipril in April of 2021 to take some load off my kidneys. While this was awful for the first 3 weeks, my body seems to have adapted to that with only a few random drops while exercising or in other unexpected moments. Worth the small effort on my part, and I take it before bed to avoid initial dizziness I had if I took it in the morning.

In the end, after five weeks, I feel like this may have been one of the best wellness choices that I could have made for my health. I remain skeptical, as everyone should about any programs, but just having some more information, a group to observe and connect with, and to feel less alone made it worth the costs for me. I do seem to have a LOT of KetoCitra at the moment, but that is fine, as it will get used eventually. I probably should try two servings a day, but the one double scoop feels “right” for now. I will not be taking it to Estonia with me, however. I simply do not want any hassle at borders or airport security given the insanity of current airports.

Victim Positions: Denial, Anger, Acceptance and Creative Non-Victim

It has been over two decades since I would have considered myself anything close to an academic, but some books, such as Margaret Atwood’s Survival, have stood with me along my own personal journey as philosophical ways forward. While it was an early, theory work by Atwood, the book has kept me aware of how we all need to progress through the challenges that devastate us throughout our lives. For me, Polycystic Kidney Disease has brought me through the whole gamut of emotions just as a misdiagnosis of bipolar manic depression and my jiujitsu training has taken me through the highest bands of the human spectrum and the lowest depths of Hell. In the end, I strongly believe that the greatness of the human condition is to experience as much of the bandwidth, to create the greatest surface area that one can with his life, is the goal. As Tennyson’s Ulysses asserts: ” I shall drink life to the lees!”

Now this particular blog entry is not really about PKD. I write one entry a week now to explain my experience with the Ren.Nu Program out of California and a ketogenic approach to dealing with the disease; but really, this is a personal blog to reflect on my progress through jiujitsu, which for non-practitioners is basically a combat art that puts one in the most uncomfortable positions imaginable, under pressure for rounds upon rounds. If you cannot imagine another human’s sweat dripping into your pinned eye socket or feeling an oppressive weight upon your stomach for minutes that feel like hours, then you need to live a little to get closer to death. Basically, it is mindfullness in its most profoundly awoken reality. When I explain it to others who do not roll, I often say “Your most horrific fears and places of discomfort are where I have learned to hang out and practice my calm, meditative breathing.” It gives me a massive advantage in this game called life, but it does demand a heavy toll of passage. In terms of Atwood’s positions, it is my way of becoming a creative non-victim.

Jiujitsu has gotten me through some claustrophic MRIs. Jiujitsu has helped me deal with the equivalent of a guitar string being inserted into my abdomen to perfrom sclereotherapy four times, and it has helped me deal with having a tube hanging from a cyst for a week out of my abdomen (my greatest fear). I am still here, and that is why I spend so much time meditating, reading philosophy and training to learn how to destroy non-trained human beings by strangling them or ripping off a limb: it brings me peace in the way an actual warrior finds peace in the fog of war.

So how is my jiujitsu these days? It has been an interesting year. I have gone from the Covid-era to a post-surgery era to being a teacher era to being the worst student in the room (but it is an amazing lion’s den of a room) in a few hundred days. That being said, I am about to embark on my first return to a BJJ Globetrotter’s Camp in two weeks in Parnu, Estonia. Estonia happens to be where my wife’s family escaped in post-war, Soviet occupation. It is also a really cool EU country where the JitsVulcan, Priit Mihkelson hails from, and it is his system of defense that I use in my rolling to keep my kidney’s safe against large men (250 lbs) who are trying to kill me.

Now the last time I trained with the Globetrotters, I was just awarded my blue belt, was naively heading to compete at World Masters 2019, and was super-excited to have some time with my friend Angel from California who I met in Iceland. He showed me this lapel guard called Squid Guard and we became instant friends. In the space between I have worked hard on the lapel guard, I trained in a cold garage wearing socks during the two years of Covid in Toronto, and I dreamt of one day being able to just hang out and be a part of a Globetrotters Camp one more time. It is funny, but I remember every damn class I have taken at these camps. From meeting Carlos Machado to being a poor uke for Chris Haueter to having Chris Paines pin me for a whole round just by pinning my elbows together, I made my way through Iceland despite being sleep-deprived from our first year with our daughter. The next camp a year later was funded by selling a bass guitar, and I got to learn some lapel wizardry from Mike Van Dammen after a hilarious drinking session about how I ate nothing but puffins in Iceland. I ate pig knuckles with Ben from Japan, the best fried chicken bao with Angel and went on a Pirukuud tour through Tallinn. What did I take away? I built a reasonable open guard and then vastly improved my leglock entries with Charles Harriot. Heading into next week’s camp, the sky is the limit even if I just want to be chill, hang out, love being alive and see if Christian Graugert has any new “jiujitsu for the beach” moves.

What is my game like these days? Ahhhh. Arrggh. Ummm. I play a lot of Running Man to Turtle a la Priit these days at Action Reaction MMA. Those two positions I have down to black belt level, but I need some kind of Hawking and a better Panda (specifically to avoid the Bow and Arrow Choke) to round that part out. My top game is a knee slice based on a seminar with Gui Mendes, a lot of time with my Brazilian coaches, and some Gordon Ryan instructionals from when I used to write for BJJ Fanatics. Once I pass, I am about riding mount for the Ezekiel, armbar or cross collar choke. It is based on a lesson with Kurt Osiander, an instructional from Roger Gracie and a Globetrotter class from Christian. The game I wish I could play is more like a Margot Ciccarelli Underworld approach to off-balancing with some Keenan lapel guard and Ryan Hall leglock game. I am not there, but I will try nonetheless as an almost 50 year old male.

The camp will be one thing that I have seen as a crack of light through the darkness for the past year. It has motivated me to try the new diet, lost 12 pounds, train hard and be positive in the face of so many places where I could be in denial about my skills and weight gain. I could just be angry and hate the world. I could give up jiujitsu or stayed at an easy club with status. I could have just accepted my doom as sooo many other PKD warriors have had to: I have a disease for which there is nothing but a long road to dialysis and that is that. Instead…here I am, a creative, subversive non-victim ready to keep ducking the executioner and trying really, really hard to offer the community another paradigm of what it means to be a warrior, a hero.

To end, here is a little clip of my school end song to send off the rest of my peers. I chose David Bowie’s “Heroes” as that is what resonated most at this moment. So thus begins the summer, I hope the hundred of readers who have found this site throught Dr. Weimbs continue to follow until the summer’s end.

Week Four: Angels and Demons of Ketogenic Diets

One stop solutions, all-in-one answers, and that damn screwdriver on your Swiss Army knife tend to leave you disappointed at the end of the day. I feel like ketogenic therary in its hardcore iterations may well be the same kind of experience; that being said, for me it remains the best game in town. Perhaps the hardest part of any diet remains the question of how sustainable it is for the body and mind over a long period of time within a certain social culture. It is much harder to go ketogenic in a colder climate where carbohydrates and sugars are the common response to a lack of fresh vegetables/greens and some darn depressing weather. Personally, my body hates the winter; I absolutely would rather live somewhere like Bangkok, Spain or Hawaii. However, even as I edge towards only 6 years before retirement, I know the value of the having a superb, almost accessible medical team with all of the hi-tech kit my kidneys could hope for. I feel fortunate to have been given three sclerotherapy sessions to drain four large cysts off my kidneys over the past year. How easily that might happen in Bangkok is questionable at best.

Now access to the best medical resources is one thing, but becoming a patient who seems like a good bet for such access is the hard part. If one thing drives me to stay healthy, lose weight, drink water, adapt my diet and maintain a positive mindset, then it is to appear like a better choice than the other patient who smokes, drinks, eats Cheetos all day long, and feels like a 5 minute walk is a vigorous workout. Survival of the fittest when in the land of the blind, the one-eyed man is king. But let me be clear: none of this can happen without helping to build a better PKD community experience for everyone. If I can help one or two people somewhere in the world to rethink their diet or mindset once they are diagnosed, then writing a blog about my experience or participating in the Ren.Nu program is the least that I can do.

So, how has this week been? This is my hardest week of the year, as my wife is chaperoning a Indigenous Awareness school trip on the other side of the country, my five year old daughter needs a lot of ice cream and shoe-shopping to cope with no mommy-time, I had 140 school reports to write, a jiujtisu class to sneak in. Very little sleep, massive amounts of caffeine and some familiarity with my old friend alcohol, would all be the challenges of a week like this, but to pretend that weeks like this do not happen would be highly detrimental when considering the sustainability of this diet. As the week came to an end, I was surprised to see how well I came out of it by Friday morning. Yes, I went over on carbohydrates. Yes, I am out of ketosis. But…and it is a big BUT, I feel pretty awesome overall. My body feels healthy and my weight is around 171-173 lbs of fairly lean muscle. Hence, the message that I took from the week is deeply founded in the reality that I can survive a week of less than optimum behaviours, thought I doubt that would continue for more than 7 days.

Perhaps what I found most interesting was that while my body told me that I needed carbohydrates, I readily compromised with the choices I went with. Instead of a hamburger bun, I would added 1/2 cup of brown rice to curried ground beef with dandelion greens. Instead of a nice piece of lemon cake, I went with some heavy cream and strawberries. There was no fast food options chosen, and pizza never appeared in the pantheon of my cravings. Maybe one idea to take away is that the idea of cheating is easier to deal with when your cheat options are still healthy by anyone’s standards. Yes, I know that the program swears off things like bananas, rice, almonds, spinach and red meat, but I personally feel that some of those elements should remain in tiny quantities while I am still functioning with fairly solid kidney function. That level of function will undoubtedly degrade over time, but a slower degradation is my personal goal. I am not attempting to eradicate my 50-100 cysts, I am just trying to outlast them to the end of my life.

As far as ketosis goes, I am mostly in a 0.5-0.7 low level for my ketones, and that is okay for now. Once my weight loss stops (it will once the love handles get eaten up), then I will slowly edge my ketosis up. Once I start being able to recover from the stresses of year end, it will be much easier to sleep a full night and a bit into the mornings. I only have a few days before the family goes camping and then I am immediately off to Estonia for a BJJ Globetrotters Camp. It will be pretty hard to tell how many classes I can do on any given day, but I feel like I can do 2-4 hours of camp a day with just some time spent watching from the mats’ edges. I am really hoping that the meal plan gives me a decent healthy factor of choices with the “vegan” option, but given the sheer number of calories burnt in a session, I am pretty sure that my body will just burn the glycogen before it can even settle in my muscles.

The opportunity to train with a large group of European players can only add more depth to both my game and open up a whole different paradigm to the martial art. I could also just use some fun, some conversation and a few days where I can be quiet. Train. Eat. Sleep. Train. It will also be super cool to have another chance to hang out with my friend Angel from California. Covid took its toll on our correspondance, but it will be reassuring to see how his game has evolved in two years passing. He was the first to introduce me to the Squid Guard and the lapel game that I have been working so hard upon over the past few years.

Week Four has been decent. I am not setting the world on fire, but I am settling in to the diet lifestyle in a way that finally seems sustainable for a long haul. Whether the blood and urine labs in September will confirm that this is the right approach for me remains to be seen. I suppose that I am finding my own way, and hopefully along the way I will inspire a few people through this blog to find their own way. Whether that involves KetoCitra or keto or calorie counting or meditation or whatever, the point is that we can all forge a pathway towards a slightly improved health outlook. For my own part, it has been quite a long haul with a lot of fear, anxiety and negative surprises founded in the fact that most doctors are not particulary good at giving any guidance to their patients beyond “there is not much you can do, so don’t stress and drink lots of water.” It felt like idiotic advice 4 years ago, and it feels even more irresponsible now.

Week Three: Moderation and Balance

Week three on the diet has brought me to many thoughts and realities about Polycystic Kidney Disease, and my place within it…perhaps. It has been a week of endings at school, continuance at jiujitsu and beginnings of the summer. So many personae and identities to blend: father, teacher, martial artist, musician, writer…

It is Father’s Day and I decided this morning to take a devil may care day on the diet; I do not want to forget that I am trying to stay alive to live and not eek out a meagre existence without experience or joy of a good meal with family that does not include Cronometer at the table. I also know not to let that line smudge so that I descend into a Hell of getting back to ketosis a week later. I never forget that I am fortunate enough to see a long horizon in lieu of death sentence on my PKD. I am in this game of Ren.Nu to make long term changes to keep me going as I am as long as I want. I also know that MOsT of these changes are positive, doable and will have a great affect on the quality of my life. But a great thing soon can become a cult of sacrifice and I know better; I studied vampire cults and identity construction for my Master of Arts at McGill University. Too much is often worse than not enough.

Enough philosophy. How has the diet been going? I think very well. I feel less dead at 4pm, though I have had a few headaches along the way. I enjoy my weekly text check-in with my nutritionist just to see what she sees. It helps and makes it worth the cost of the program. The KetoCitra is good. I actually like it as a drink. Caveat emptor: it is awful as a sports drink. I had some in the car before jiujitsu so I used it and ended up with a massive headache after 8 rounds of 8 minutes of combat. Bad idea, genius. The group sessions help remind me that there are others doing the program who have more and fewer challenges than I do at this stage. I am always interested to see the difference between Canada and the USA when it comes to food and medical experiences. The sessions are a bit of a slog, but they probably need to be.

I have been doing my own meditation program as usual with the Waking Up app. I spent a long time finding the best mindfulness approach for me as a way of letting go of the fear of death, pain and illness that comes along with PKD. I do not think I could have done the MRIs or the sclerotherapy procedures without Sam Harris. My preference, but also a suggestion for others. I expect to always use the app especially now that he has added lectures by others about Self, duality and Buddhism.

Jiujitsu has been rough. I have zero power still. Opponents have 100 percent and adrenaline. Still, this is what I do, and lost 15 lbs in a month have made my body so much more fluid. I am losing one session a week, but I did a 6.6 km run instead of the second session in 40 minutes just to get my body moving at a keto-friendly pace. With a week of day long training sessions in Estonia in a few weeks it is in my interest to find a balance between what I can do and what I need to do, both in terms of carbohydrates and exertion.

Ketosis is slippery. I am just holding on at the bottom end of light nutritional ketosis this week. That is fine for my current goals; I feel pretty solid, am losing weight and have a reasonable mindset, I think. From my experience before, things will get hairy in two weeks as those voice of “reason” start chiming in. People will say: “uhhh, you look too thin.” or “aren’t you too old to be doing this; you need to eat. !” I am fine with that. The beard had to go or I would resemble Rasputin pretty quickly.

What motivates me? My daughter had her first ballerina recital at age five. I want to be here for her as long as I can. I want to be mobile, pain minimal and active for as long as I can until I cannot. She mischievously asked me whether I would die from eating her candy this week; she wanted to know whether it had to be hidden, I think. Life is extraordinary, and I appreciate the struggle, because it gives me the beauty of a summer night motorcycle ride, a blistering blues guitar solo, a perfect Jiujitsu strangle or a profound conversation with a friend. I can avoid a doughnut for that, can’t you?

Week Two: No Internal Spark

Part One

As I begin the second week of the Ren.Nu program, I have to admit that I feel like there is no life force in my body. While this may sound a little hyperbolic, the one thing that I find hard to explain to others are the days when I feel like there is no spark being ignited within my body. I feel like my kidneys become almost a heat sync for energy or that they are like the ignition in a car; no spark to light the fuel to create internal combustion. It kind of sucks. I should note that I sometimes felt like this before the diet began, but today is especially difficult. I imagine that it relates to my body desperately seeking glucose and turning to my protein to convert that instead of going to fat as fuel. That is what I think; but it may not be true. In my current diet, I am still eating too much protein even though my carbohydrates are around 30-40g. Regardless, this is an expected hurdle for me, and one which will take this entire week to sort out.

Perhaps the hardest part of a diet like this is the self-judgement that the Ego creates with failure to comply to with the exact macro counts. As this deprecation occurs, the Monkey Mind is constantly demanding carbohydrates, demanding “cheats”, and rationalizing all deviations from the planned course of action for the day. It is a reality that I encountered in 2019, but I am finding that the parameters of this “better” dietary change is much more challenging that the parameters I set out for myself then. In 2019, however, my goals were weight loss to get down from 170-163 lbs so that I could move from the Middleweight to Lightweight Division. I did not care about exact macros, nor did I care what effect the diet was having on my kidneys, per se. I only cared about making weight for Masters World, and I did.

This time around, I actually feel better overall than I did before. I am losing weight, I am dropping in inflammation, and I feel decent about my daily internal body cavity pressure against my kidneys. On the flipside, I feel too weak to train in the ways I had before, and I feel a lot more keto flu effects (and I am still not near ketosis). So what has changed? I expect that the Ramipirl (5mg) I decided to take in consultation with my general practitioner is reeking havoc with my previous protocols. Blood pressure has dramatically improved on the charts, but with the lower heart rate and pressure I imagine that I negatively feel the effects of the body fuel switchover much more accutely. Time will tell how things progress, and I see no reason to abandon ship.

The rest of this week has me on am end-of-year field trip with my 13 year old students. Eating properly while at a Hard Rock Cafe or a breakfast buffet will undoubtedly challenge my willpower to avoid carbohydrates and sugar, but that is fine. I already warned my colleagues that I may not be eating or drinking with them. Frankly, some rest in a hotel room or swimming in a pool might help in comparison to chasing my five year old daughter around until 10pm. I will continue to miss out on jiujitsu training, but instructional videos, yoga and the weight loss from the diet can compensate for a bit of that gameplay loss. My Ego had thought that I could still train full on, but avoiding injury from the lack of strength to resist training partners is probably a higher priority that pushing through.

Part Two

After surviving three days with 120 twelve year olds on a Niagara Falls school trip, surrounded by candy, junk food and carbs, I am looking forward to home. I have been lowering my carbs and proteins while upping my fats, but still no keto. a little frustrating from the Peer to Peer pressure of hitting keto levels in the Ren.Nu group chat; since I could not make the session due to a jet boat ride, I watched back in the hotel at night. I am stuck at 0.3 or 0.4 m/mol.

Who knows if my body is resisting because it has been here before or if it has other plans for me, and frankly I have little control over that part of the game. There was a lot of talk about waves and tides in the mindfulness section, so to extend the metaphor: I am caught in the 0.4 current and I have to accept that and wait for the right time to start swimming hard. Might be a week away or tomorrow, but I cannot base my mindset on artificial targets. My journey, my Tao.

Otherwise the inflammation is still decreasing, and I feel fairly solid despite a disruptive week. A lack of decent coffee in Niagara has not helped with the sluggish fog of war that I continue to experience. A few days home, a 5k run and some yoga should help, but a small victory would help a bit. Not required, but it would help sway the tide

I guess that I should mention that I feel pretty calm for being on a school trip. More accepting, more mindful of my time and what I put into my body to get through the days of insanity. It is a nicer, more sustainable mindset. If I could just squeeze in some jiujitsu training then things would feel pretty good. I probably need to get my KetoCitra to two servings a day, but doing that at the Hard Rock Cafe felt kind of creepy from a teacher point of view, so I left that for home. Perhaps more exercise in my home gym and just general, easier fitness will kickstart things. We will have to see. Two more days before the second week closes, so all is not lost, all is still to come.

Magic Spoon Cereal

Part Three

As the week came to a close, I finally hit moderate ketosis at 0.9 mmol/L. By all accounts this was a real struggle to get my body over to a fat fueling paradigm, but I definitely feel a difference in my energy and cognition. In the past two days, I feel less disgusted when eating greens with oils, have less of a craving for just meats, and my body seems to have figured out how to plate food in a way that actually meets the percentages and ratios I need for the diet. Vegetables are becoming more attractive to eat, carbohydrates less so (if only because I know how their suddent intake would make me feel again). The KetoCitra tastes pretty good in contrast to the lipids of the diet, and herbs from my garden are making the blandness of some items come alive. Basil, chives, fennel and tarragon all go pretty well with items like salads, butters and eggs. Cheese is probably the best way for me to add the fats that I was missing at the end of the day, and being in Canada there is a whole myriad of French cheeses which are high fat and low industrial processing. Pistachio nuts and walnuts are another addition to plates that give a bit of fiber and fullness to the mix.

I would not say that I necessarily feel like I can hit the jiujitsu mats at full force yet, but I do feel like a run or a workout in the gym is more than feasible, so I may do that this morning once I finish the blog and my morning decaf pourover coffee. My weight is down to 172 lbs from 186 when I began the diet and was retaining tonnes of fluid. The LMNT electrolyte packets have helped with salt intake and I am supplementing some B12 and D vitamins based on the initial blood labs. My blood pressure is also back to the ideal 112/65 when I wake up (I do take 5mg of Ramipiril to lower the load on my kidneys). So I feel like my body has self-corrected back to the path I am needing to take for the remaining 10 Weeks of the program. While the internal spark is not fully lit, it appears that the engine is starting to turn over after being flooded for the past two weeks.

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