Seriously! I’m really happy that I found another amazing example of a person loving their life, living an awesome life, despite dealing with MS (or any other medical condition.)
I’m continually adding to my list of “personal heroes”!!!
A few posts ago I mentioned that I had joined Weight Watchers and it, along with the Wahls Protocol, was ensuring I got the nutrition I need in my diet. I’d been experimenting with diets and diet modification for years, talking to doctors and nurses and registered holistic nutritionists… and usually came out with more questions than answers. Questions like:
– If I’m eating right, why do I need all these supplements?
– If YOU AGREE I’m eating right, why are you recommending more supplements?
– What do I ACTUALLY need to take, and in what dosage?
– What do I need to eat, and in what amounts, to get the nutrition I need to cut back or eliminate the supplements?
I discovered that if someone is making a living (or part of their living) selling supplements, they will always have a supplement to recommend, no matter what you’re already taking. I also discovered that medical opinions on supplements for MS vary widely. Everyone agrees that I should be taking Vitamin D, but I’ve been told anywhere from 2000 to 5000 IU’s a day, and somewhere I even read up to 8000 or 10000 IU’s. At one point, I was taking something like 14 pills at once, with all the different supplements.
I hate taking pills. I’ve mentioned that before. That was what inspired me to start looking for food-as-medicine type information. There’s nothing extra for these people to sell, no supplements or whatever, although they may push the occasional book. That’s okay, I’m fine with buying a book or two. It’s certainly cheaper than 14 supplements a month.
I was chatting with a Registered Holistic Nutritionist, who mentioned her Mom had been diagnosed with MS, and she’d found this amazing Ted Talk from a woman who had used diet modification to control her symptoms. This woman was Dr. Terry Wahls, and she went from a tilt-recline wheelchair and secondary-progressive MS to horseback and remission in something like a year, purely through diet.
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Here was something I could get behind. I was totally willing to change my diet and my eating habits, because I believed from the beginning that the answer to most of my problems was in what I was eating. I just didn’t know what to change. So I toyed with the Wahls diet. I bought her book, “Minding My Mitochondria,” and read it. Not cover to cover, since some of it was a little too scientific for me, but enough to see what she was talking about. And I slowly started eating less processed foods. And more vegetables. And less grains. Then I took the plunge and went gluten-free, which is one of the most painful things I’ve ever done – my Mom’s Italian, Dad’s Dutch, and we survived on pasta and bread. But suddenly, one day it just stopped being so awful. My biggest discovery is that I can’t use substitutes. Gluten free bread is inedible, so I just don’t eat bread anymore. Cookies and muffins, sure, because they’re supposed to be dense and heavy. I can’t do substitutions because I have a very firm opinion on what food SHOULD taste like, and what the texture should be. So I just cut most grains out altogether, and I don’t even miss them. I’m reintroducing some into my diet, on advice from a Registered Dietitian, but it’s quinoa, rice and oats, mostly, and for now only once a week. I really try to eat more nutrient-dense foods, and starches just don’t have as many nutrients.
I also toyed with Dr. John McDougall’s diet, and I tried a Paleo diet, but if something doesn’t make sense to me, or (more importantly) doesn’t FEEL right to me, I won’t embrace it wholeheartedly. No one source of information, or one type of diet, ever felt completely right to me. Until I joined Weight Watchers.
I know, I know, I sound like a recruitment poster or something. But seriously, the new system doesn’t contradict any of the dietary recommendations that I decided to follow over the last few years, and it actually makes it a lot of things easier for me. I use their system to keep track of all the fruits and veggies and animal proteins and other good things I’m SUPPOSED to be eating, and it’s actually LESS restrictive than what I’ve been doing by myself for the last while. I’m eating a lot more now, and a wider variety of food, than I was allowing myself before I had these guidelines.
This is what I’ve done to combine the Weight Watcher tracking with what I got out of Dr. Wahls’ book, and I ran it by a Registered Dietician to make sure that my new planned diet was healthy and safe – she gave me two thumbs up!
– I aim for 9 cups of water. This may sound like a lot, but I make a lot of smoothies and soups, and I count the water I use in those as well. Plus, since starting Modafinil, the persistent dry-mouth makes me WANT even more water!
– I aim for 5 to 9 servings of fruits and vegetables a day, which is easy if you like making soups and smoothies. I assume 100 grams is a serving, and I label each serving check-box with a colour: red, orange, yellow, 4 greens, blue, and white. White is NOT starch, it’s the sulfurous veggies like cauliflower and mushrooms and onions. According to Dr. Wahls, keeping track of colours helps to ensure you get a good balance of all the different micro-nutrients you need, maybe not every day, but over the course of the week.
– I aim for two servings of healthy oil; one could be a teaspoon of olive oil or 1/8 avocado.
– I aim for 6 ounces of protein in a day, at least half of which will be animal protein. (If it had a face, it’s animal protein.)
– I aim for three servings of dairy – I react funny to cow milk and cream, so I stick to yogurt and cheese, and I use a LOT of almond milk, which also counts as dairy. Not sure why, but I’ll take it!
– I aim for at least one serving of fish a week, and one serving of a non-gluten grain. I’ll increase those as I learn to cook more with them.
– Last but not least, I aim for 2000 IU’s of Vitamin D, a Calcium-Magnesium supplement, and a multivitamin. That’s it.
THIS HAS MADE MY LIFE SO MUCH EASIER! I just have a little list with check boxes, and I try to check my list off every day. No more fretting about what I can and can’t eat. No more going hungry because I can’t figure out what I should eat, or going crazy and eating EVERYTHING IN THE PANTRY. And believe me, with a fruit and veggie heavy diet, I have more problems eating ENOUGH points worth of food than I do going over my daily allowance. Also, Weight Watchers encourages writing down every little bit of food you put in your mouth, and I’ve expanded that to include EVERYTHING, meds and supplements too, and since I’m writing all that down it’s easy to keep track of energy levels and hunger levels as well.
So there’s my take on food, nutrition and diet. Just remember, what works for me may not work for you, and it took a few years of trial and error to come up with a way of eating that’s healthy and comfortable for me. I hope this inspires you to find a healthy and comfortable way for you – it’s completely worth whatever time you spend on it, in the end!
I have to admit that, even though I don’t have television (gasp!) I do occasionally go on Youtube and watch clips from the talent reality shows, like America’s Got Talent or Britain’s Got Talent or American Idol. I love them because sometimes, something totally unexpected and amazing can happen, completely out of the blue. This was one of those clips for me, and it’s NOT a normal “motivational moment” clip. I’ll explain after the video!
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So this girl comes out, dressed in pink latex to get attention, but not for the reason anyone else thinks. Her goal is NOT to get to Vegas or participate in any more reality shows, but to do something very specific: to meet Howard Stern. The REASON she is my hero is that she set a COMPLETELY DIFFERENT goal than anyone expected, AND SHE DID IT! She just dressed up in something crazy and came up with enough of a “talent” to get an audition, because she knew that’s all she needed. She IGNORED the people who said she wasn’t good enough, because they were assuming the obvious, without finding out what her real goal was. And she was 100% successful in her real goal. I may question her general sanity and taste in men, but she did what she needed to get what she wanted, without hurting or demeaning herself or anyone else. And I think THAT’S awesome!
PS Yes, I know some people may accuse her of demeaning herself by pouring herself into that pink latex dress, but I see it as a costume for the character she portrayed to get on the show. I don’t think she took anything about that audition seriously other than meeting Howard Stern. Plus, kudos to her for having the ladyballs to wear latex in public while weighing more than 98 pounds!
Have I mentioned I’m a bit of a control freak? Not OCD or anything, but it makes me feel safer to feel like I have control. And we all know that MS is not a condition that is easily predicted, manipulated or controlled!
So I laugh at myself when I notice how strictly I’m attempting to control certain other things in an effort to make up for it. Like the people around me. Or, you know, fundamental rules of physics. Like gravity.
Unsupported Range Hood
I partially modelled the reno house using the free version of TRIMBLE SKETCH UP.
I could NOT figure out how to support that range hood. If you look at the picture you’ll notice the only thing holding it up at the front is sheer force of will! Did you know that if you only support an object on one side, the other side simply won’t stay up? Wishing will not make it so. Gravity trumps wishing, at least in this particular case. And it took me an hour, and quite the little temper tantrum, to come to terms with that yesterday.
Sometimes I feel like I’m divided into several people. One of me is my body, my actual physical form. I have a lot of conversations with that one, mostly along the lines of “Thank you, Body, for dealing with everything that’s been thrown at you. I really do appreciate it.”
Another is the five-year-old me, who comes out WAY more than I’d like. She throws temper tantrums when confronted with things like gravity, or the need to explain things when my train of thought is going somewhere I can’t get to. I can only watch myself being that one until she subsides, since everyone knows it’s IMPOSSIBLE to reason with a five-year-old in a temper!
And then there’s me, the one who is always present (at some level) and just kind of observing what’s going on. That one feels like the real me, the reasonable one, but it can be hard to introduce her to someone who has just witnessed the five-year-old. So I just apologize. A lot. Eventually I’ll get tired of apologizing, so I really want to learn to work with that five-year-old! Hahaha now THAT will be quite the adventure!
So! Does anyone else feel like they’re experiencing an MS- (or any other condition-) induced multiple personality? Anyone else having some kind of strange personality crisis, induced by life changes you’re not exactly sure how to deal with? And does anyone have any advice on dealing with the five-year-old inside hahaha?
I LOVE to sing! I’ve always wanted to take voice lessons, but growing up in a small town meant that opportunity didn’t exist. So now that I live in a city, I’m taking advantage of some of the opportunities here!
I’ve been taking private classical voice lessons for almost two years now, which means I started as an adult after I was diagnosed. I’ve seen too many people say they’re too old or they can’t start something new because they’re sick, but if you don’t start now then when will you? All we have is now!
Anyway, my teacher is amazing and she lets me occasionally take a break from classical to get into pop or random karaoke, which is perfect for keeping me interested and engaged. So far I have 3 songs prepared at roughly performance level, and I’m learning another one right now called “Apres Un Reve” by Gabriel Faure, who I think is one of the most brilliant composers of all time. He’s not very well known, apparently because he wrote “art songs’ (single stand-alone compositions) rather than operas. Here’s an instrumental version of Apres Un Reve performed on violin by Joshua Bell:
I just want to point out that you don’t need to be exceedingly mobile to sing. MS doesn’t mean you can’t have hobbies, and it certainly doesn’t mean you should give up the things you love! It just means you’ll get really good at compromise. One of my compromises is that a lot of my voice training involves learning to sound like “healthy me” even when I’m fatigued or battling cold and flu-type symptoms, which I am half the time. I don’t need to sound better than anyone else, I just want to do justice to the songs that I’m singing. I want to be able to sing in a way people can hear the beauty of the song itself, the brilliance of the composition. And maybe one of these days I’ll post video of me singing, and you can let me know if I’ve succeeded!
“Multiple Sclerosis and Caregivers” is a look at the challenges of surviving in a relationship that includes giving care.
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Wow, maybe I’ve been a little selfish and a little ignorant, but because I’m not dealing with a Caregiver myself, I forgot what an important part of the equation they are. Kudos to this amazing video for pointing it out!
I suppose there’s always a compromise between cost and quality of life if you have to pay for treatment. But what’s the cost for your quality of life?
In this video I continue the conversation I was having with Lisa who runs Brass and Ivory, a site chronicling her MS journey with links to a lot of other MS blogs, and Amy who runs MS Softserve, a soon-to-be-available NPO site offering customized learning about MS.
Ah crappity, I think the video was taken down, because I can’t even find it anymore on Vimeo. Anyway, here’s a link to a WebMD article about caffeine and MS. Funny thing, when I googled, the first link that came up was this article, and the next was one claiming caffeine makes MS worse. How about that?
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Okay, I’ll admit it, I love coffee. I’m actually trying to cut down on the amount I drink, because I don’t want to rely only on caffeine to get me through the day. This video article was posted three years ago, and unfortunately I don’t know what happened with further studies on caffeine in MS, but I love the thought of not completely giving up coffee!
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Haha so upon further research: the study was only done on mice not people, on a condition “similar to MS”, and the equivalent amounts of caffeine given to these poor mice was more than anyone should be drinking in a day. So experts “wouldn’t advise people to change their caffeine intake.” Nuts! Further proof to not believe everything you find on the internet, even if it looks all shiny and official!
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In this video I talk about discussing your condition with other people, and where you might need to be mentally before you’ll feel comfortable doing it.
It can be really challenging not to let it all get to you. Here I lay out a couple of easy tips on how to “conjure up a positive attitude in the face of MS weirdness” – they work for me, so give them a chance and they may just work for you!
Haha! Watching this I see how often I tilt my head back as I talk, and perhaps I should be more mindful of giving such a view up my nostrils! Ignore that please, and just concentrate on the message!