Camping, Vegan Style

Summer’s been so busy and so beautiful (no wild fires and fair air, for a change – yay!) that I even forgot what the mountains look like with snow on their tops. It’s been toasty, but we needed some heat. I needed some heat, to charge my bones for the long winter coming.

One of the things we do in the summer (and spring and fall, too) is camp. I used to look so much forward to eating while camping: hot dogs, especially (mine were always turkey, fat free), baked beans, bagel and (fat free) cream cheese with turkey bacon for breakfast. Yum!

But since lately I have been eating only a vegan diet, this year’s been the first time when I camped on all veggies. I was a little nervous, really, because I did not know if I could stay “full” for two days, while hiking and doing stuff around camp on simply … plants and fruits. But it worked out nicely – as you can see in some of these pictures.

I have also found some new products, as you’ll see, that are natural and “gunk free” (I hope! – as much as we can trust the labels, of course) and that taste like real food.  

 

For dinner one night, I had baked beans, with polenta (which I made at home and packed in a plastic ware dish) with fresh corn on the cob, grilled on the camp fire. 

 

For lunch, I had a sandwich made with vegan home made bread (thanks to my husband!), Boulder Canyon potato chips (see below) and tomato salad (I cut the tomatoes and onions at home and put them in separate dishes, then mixed them together with salt and pepper at the camp site - you don't want to mix them the day before, because they juice too much and they lose the flavor). 

 

This was a new find for me - the Boulder Canyon brand products - all natural and they are so delicious - nothing but potato taste in that bag.   

 

For "on the trail" snacks I had raisins and fresh cherries. What else says "summer" more loudly than cherries?! 

 

 Another night for dinner, we cooked all these veggies (fresh peppers, Brussels sprouts, potatoes, onions with some curry powder, salt and pepper) in aluminum foil on the open fire, and we mixed it into our vegan baked beans. Then, we had leftover corn on the cob along with it, for some comfort additional starch. It was so filling and delicious!  

 I decided that as far as food goes, you’re only limited by your imagination in how you cook it, and by your palate in what you choose to eat. But the options are there, and are plenty! My rule of thumb is: if there is a people under the sun that live happily and fully with only a plant and fruit based diet(and there are lots of peoples just like that, in countries where life expectancy is even longer than ours), that should be enough testimony for me that humans don’t need meat to live.

Although for an FH patient nutrition is only a very small fraction of what helps  manage our disease (usually, the bigger role is held by drugs), I feel much better when I don’t consume animal products. I am not a chemist, or a biologist, but I am very much in tune with my body. And overall, my body has been the happiest, lightest, less prone to pains since I have switched my diet this way. And every day, I am surprised by all the new options we have out there, including when we pack for a whole weekend in the middle of the woods, somewhere.

I will say one caveat for all the options we have out there: I cannot eat anything with soy, because of a personal intolerance to it, and I have found all the “meat substitutes” out there to be absolutely gross for my taste! However, once you really tell yourself there is no such thing as “meat” in your diet, you’ll stop looking for it, or for anything to replace it. And, to me, I find meat less appetizing now, after not eating it for 8 months. So, there is no missing it, at all. And I have never been an avid dairy consumer anyway, so I guess the “switch” has been easier for me. I am lucky!

Enjoy what’s left in the summer, all, and happy eating, wherever you are!

Milestone: Breakthrough Drug Approved

I think my family has been dreaming of a day where they can breathe easy and tell themselves "there is something for our child to treat this disease with" since I was 6. That's 34 years ago, for those who are counting. Well, their day might already have come!

 
As you already know by now, the PCSK9 inhibitor drug to treat cholesterol and potentially reduce the risk for atherosclerosis, heart disease and strokes has been approved by the FDA: as stated in this article. 

Europe had approved it the week before.

I am personally excited about the opportunities out there, but although I have access to this drug therapy here in my state, and although I would qualify for it with no problem, I am actually putting off taking it. At $8000-$10,000/ yearly, Cost is one concern, for sure, but the biggest reason is just wanting to wait for a couple of years to see if the results are really what's expected of it, and waiting to see if more long term side effects will be revealed with time. 

I just pray and hope that I will have the luxury of waiting.

All This Info and What To Do With It?

Well, since December, I have eaten mostly vegan food. I say “mostly” because sometimes, I am forced by external constraints (visiting friends I don’t want to justify myself to or just having no other options for food when traveling) to forego my strict diet.

I have tried to eat little to no oils, either, but there are still vegetable fats in the vegan foods I eat and they do freak my liver out, and they don’t get processed. They get in my blood stream and wreak havoc in my arteries.  

I was curious to see if my numbers have stayed dramatically low (for me), like they were in March. But I was not so lucky to keep the trend going.

Here’s a side by side view of my lipid panel in March and today, respectively:

The diet was the same then and now. The only two things that for sure are different are:

-          In March, they took the tests while I was fasting; this time, I was not;

-          In March, I was taking Zetia about 2-3 times a week in conjunction to Lipitor; right now, I was taking no Zetia at all.  

My new cardiologist is adamant that I should not stop Zetia so he put me back on it. It does make the Lipitor work better and this definitely has shown in tests before.

Whatever the reasons are, though, for the increase in numbers, as you can imagine, I am not happy. Not that I would expect diet adjustments to make a really tremendous difference anymore (as you know, diet is irrelevant for us, FH folks), but I was at least hoping that the numbers can stay where they were in March, for a long, long while. But, as life with this disease would teach you – the numbers will always consistently shock you.

As always, I pay attention but I try not to dwell on the grim figures here. I will continue the diet, which, finally, has become a very comfortable lifestyle for me, and I will continue my medication, bringing back the Zetia, of course.

On another note, my new cardiologist is the head of the PCSK9 inhibitor drug research for my state , and he is pushing me persistently to be part of the research, or to be his second only patient to get the drug, if it gets approved this week, in fact. Although I do want, with all my heart, to have my numbers under control and at a normal level (not just “normal, for me”), although I do want to avoid any kind of heart procedure or surgery in the near future, I am still very cautious of these new drugs. I know they promise a lot, but I still would like them to have a bit more research and findings under their name before I “embrace” them. So, for now, I will hold off taking this medicine.

This kind of decision is commonplace for people with rare diseases. We are faced with this every day, perhaps – some amount of research, big promises, and lots of hope. And every single time, with every single patient, it is a singular decision, and a personal one. There is no judgement to be placed on our individual decisions. There is staying informed, engaged, and not feeling guilty about that resolution we choose. It is your life, your health, your well-being. No one, no doctor or medical study can ever validate that.

Maybe it’s the biggest mistake I make and it could cost my life, but at this point, with the information I know and the mind frame I am in, this is the decision I am sticking with. For now. This is no advice, either. It’s just my opinion, regarding what happens to the body that hosts my mind and soul. Today.

Of (Good) Food and (Not So Good) Doctors

First thing, first – the doctor’s visits. I think I would just bleed from my fingers if I type in one more time how much I hate all my doctors’ appointments. I have never been fond of medical staff, but since I moved to this God forsaken state with practically failed medical school, almost not graduates, it’s been even worse. Just hours and days of wasted time and no results, no new insight.

Mind you, I know that my disease is chronic and without cure. I don’t worry about finding an alternative solution for that. But since my new “food allergies” have started,  I have found not one doctor that knows, or cares enough to find out why my rashes and all my GI troubles are happening. They all wave it as “food allergies” and when I ask them “WHAT FOOD, then?!” They shrug and say “test all of them and see which one”. Really. Honestly.

I can buy that there is no conclusive food test that would rule out everything else (you gotta know what you’re looking for), but at the same time: could it be something different? Do they want to eliminate everything else, first?! Everything else that is testable and diagnosable?!  For the allergies, they need to trust that I have tried to stay away from pretty much everything and the symptoms are not much better. They are spotty at best, but definitely not gone.

I read a lot about my symptoms, and they can be allergies or any amount of immune deficiencies, for instance. One test was done for the Complement System proteins  and one of them was at the very lower end of the “normal” range, which, in some literature, can be a concern. Not for the GI doctor that ordered the test. I am not a doctor, but I would take that wild guess and just make sure I checked everything in here, to rule out an immune system problem and maybe temper down all the symptoms that have wreaked havoc in my daily life since last year. But hey, again: not a doctor, right?!

Speaking of doctors, the only one I sort of like is my cardiologist. He is very open, honest and thorough. He teaches me how to read my symptoms and my test results, and he offers me all the medical options, whether he knows I will nix them (like participating in studies or apheresis) or try them out (like diets, pills, reading books, etc). But, as my luck would have it, he is retiring. So, there I am again, starting with a new one (one of his co-workers), whose second specialty is, apparently, lipidology. Bonus for me, of course, but why didn’t I know this 5 years ago when I first moved here, that they have a lipidologist on staff?! Ah, well! Like I said – I’ve only sort of liked the one I have had. I am meeting my new guy in a couple of weeks. The office staff was supposed to call me with a stress test appointment (which I have not done since 4 years ago, but my symptoms have not changed, so this should just be routine) but it’s been 2 weeks since I have seen them and they have not called yet. So, we shall see.

The second point I wanted to make was the one good thing that came from all the crazy “food allergies”. Like I said it here before – it’s the vegan and virtually fat free diet I am on. The March numbers spoke for themselves as to what this diet is doing to my cholesterol. But the way I feel is even better, I think. I still wish I would exercise more, but that is my own fault: I get dragged into chores, and gardening and surfing online just to rest my overloaded brain from work that the days just rush past me! But the energy level is incredible, my skin feels better, my hair even looks better, and my acid reflux is very rare nowadays!

My mom cannot understand how I survive without meat and animal products, and she thinks I probably just eat carrots every day. Here are just a couple of pictures of some foods I made lately, both for dinner. 

One is oven fries (no oil, just organic Pam for coating the tray) with fresh tomato and onion salad and garlic roasted Brussels sprouts. The bread is homemade vegan bread, made by my husband:

The second dish is vegan burgers. These burgers have everything but the kitchen sink in them and they are delicious: black beans, corn, brown jasmine rice, onions, peppers, mushrooms, cornmeal. I ate them with the vegan bread and mustard. So amazingly flavorful. And no, I never feel hungry after these vegan foods. I only feel hungry if I don’t eat enough. If I eat just a grape, or just a carrot, I promise you I will be hungry. But that doesn’t happen! 

I still refuse to label myself. I just eat food, is what I say about my diet. I never say “never” so who knows what kind of food I’ll be eating tomorrow, but right now, it’s mostly veggies, starches and grains, and very limited oil, if any. And I mean very limited any oils (none of these: avocado, coconut milk, seeds, nuts). We shall see new numbers in about 2 months (August). Till then, I’ll keep fighting the new cardiologist and they newly ordered tests.