600th Post!

I’ve wanted to make a post for the past several days, but for whatever reason, writing just hasn’t happened. There’s been a lot going on.

First visit with the high-risk pregnancy specialist

Last week, Adam and I saw the high-risk pregnancy doctor, in the hopes that we’d be cleared to start trying for a family. Unfortunately, my blood pressure was insane at the visit. 174/95. Crazy, right? The doc wants me to lose 20 pounds and get my blood pressure under control before I see him again.

Challenge Accepted.

Doubled the hypertension medication. Got back to the gym. Fortunately, the relapse is over, and because of that, seizures aren’t stopping me from exercising. Yesterday, I was finally able to do 45 minutes of cardio again. We also keep saying that we’re going to go paleo again. We did well yesterday, but tonight, we’re going to a Blackhawks playoff game… so I guess we’re aiming for 80/20 this week.

Awesome Find: Once A Month Cooking

One of my friends introduced me to Once A Month Cooking, which has more than 2 years worth of paleo menus and recipes already made. Talk about a time-saver.

And if that weren’t enough, there are other sites for once a month cooking too, such as this Whole 30 Freezer Menu, and this article about how to freezer-cook in the first place.

Big 600!

And apparently, this is my 600th post here. That blows my mind.

Hope you’re all doing well!

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Not Letting MS Win.

Adam and I have been very committed to fitness over the last year. We’ve changed many of our eating habits for the better, learning how to live without wheat and adding many more veggies to our diet. We also managed, most weeks, to get to the gym 3 times. This year, we’re going for 4 times a week. While I haven’t seen much in the way of weight loss, my body has reshaped, so that’s a step in the right direction. I know I’m building muscle. I tell you all this not to brag, but because it’s relevant.

So Ridiculously Counterintuitive…

Monday and Tuesday of this week, I was dealing with some pretty intense MS fatigue. The idea of going to the gym was ludicrous to me. (Hey, I’m having a hard time walking to the bathroom fast enough. I know! Let’s lift weights!)

Now, you have to understand, MS fatigue is utterly and completely different from being tired. You can be in a great mood, be motivated to do things, and quite literally not be able to make your body move without extreme effort.  You can be extremely sleepy and not able to actually sleep. Sometimes, it’s like wearing a lead apron over your whole body. At other times, it feels an awful lot like turning into a weak puddle of goo.

This graphic perfectly represents what MS fatigue does to you.

This is what MS fatigue does to you.

“The exact mechanism of MS fatigue is not known, but studies suggest that changes in the brain caused by MS may require MS patients to use five times more effort to complete a simple task than a person without MS,” says Julie Stachowiak, PhD, author of The Multiple Sclerosis Manifesto: Action To Take, Principles To Live By.

Never being one to take things lying down (literally!), I had to research ways to combat fatigue.

The most consistent suggestions on the internet were pharmaceuticals (like ProVigil) that I can’t take thanks to hypertension, simplifying your life (which doesn’t help when you’re already in the throes of the beast), treating depression if you have it (check!), and exercise.

That’s right — exercise.  When it’s hard to move… move more. It sounded bassackwards to me. I was actually angry thinking about it.

But it works!

According to the National Center on Physical Activity and Disability (NCPAD), “A study conducted by researchers at the University of Utah demonstrated the benefits of exercise for people with MS. Those patients who participated in an aerobic exercise program had better cardiovascular fitness, better bladder and bowel function, less fatigue and depression, a more positive attitude and increased participation in social activities.”

More recently, a 2013 study conducted by scientists at the Division of Physiotherapy and Rehabilitation at Istanbul University demonstrated that supervised group exercise training is effective in improving balance, functional status, spasticity, fatigue and quality of life in moderately affected people with multiple sclerosis, with no worsening of their clinical status.

So, despite my goo-like status late Tuesday, I cowgirled up and went to the gym. Mind over grey matter. I was honestly shocked by the immediate results.

Sure, I went slower on the stationary bike than I usually do (It was so tough!), but after about 20 minutes of entirely willpower-driven strenuous activity, I was no longer desperately wishing for sleep or even wanting to quit. I felt the heavy, pressing feeling lift. I suddenly had energy like it was a normal day. I was even able to finish up my 30 minutes on the bike and do a 15 minute cool-down on the treadmill. Like a boss.

Exercising = Having Energy

I have a theory about MS fatigue and when it hits me hard.

Last week, we went to the gym 4 times (M,T,Th, &F), and then we took the weekend off. After 2 full days without any exercise, I had some of the heaviest fatigue I’ve experienced… so I took Monday off too, thinking that my body needed the rest. (Wrong.)  Tuesday morning, I was certain I’d been run over by a steam roller in my sleep… but Tuesday night, I hit the gym. Today, after working out regardless of fatigue, I feel significantly better than I did the last 2 days.  If not for the tingling paresthesia in my back, I’d actually feel normal. Then again, I’m so used to the tinglies on my back that maybe this is “normal” for me.

Anyway, my theory is that my body now requires that I work out almost every day for it to function properly. When I take more than 1 day off from exercise, I experience fatigue. And fatigue sucks so much. It’s like gravity is trying to crush both your body and your spirit. Last night, I actually had the thought that cycling was like mining for energy… that cardio, for me, is like plugging myself into a charger. I honestly think that daily cardio exercise is going to be the only way to keep fatigue at bay.

If it really is this simple, maybe this crazy broad wasn’t as insane as I thought she was.

Neither of us is going to let MS win.

What to eat when you’re sick and keeping a paleo Whole 30.

Being Sick Is No Fun.

Last week wasn’t such a great week, health-wise, for my husband, Adam. He was diagnosed with strep throat and a flu-like virus that completely took him out of commission from Wednesday night until about mid-day Sunday. Miraculously, even with an immune system that’s operating at 60%, I did not get sick! I am praying that I am not in an incubation period, and that I don’t end up ill in about a week or two.

Sadly, we couldn’t go to the gym on Monday or Tuesday of last week because of the polar vortex making temperatures in Chicago dip to forty degrees below zero. The gym was closed! Adam was diagnosed Wednesday, and he wasn’t feeling better until yesterday – so that’s a whole week of working out that we lost. 😦 I guess it’s better for us to have let our bodies rest and been considerate of the other gym-goers than to have pushed ourselves for the sake of keeping with our plans.

Speaking of keeping with our plans… we ran into a hard time on Friday. When either Adam or I have gotten really sick in the past, our diets were incredibly grain-heavy — noodle soups, fresh bread for dipping, Chinese food… that used to be the order of the day. But, you can’t do that when you’re paleo.

My Ginger Garlic Chicken Soup

Thursday and Friday for lunch, I made my ginger garlic chicken soup, which was great. I cut up about 12-15 baby carrots, 3 stalks of celery, and 2 chicken breasts, grated about a half inch of fresh ginger and 5-6 garlic cloves, and added 4 cups of organic chicken broth, 3 cups of water, 1 bay leaf, 1 TBSP of granulated onion (you could always sub 1 medium onion, chopped), a half tsp of poultry seasoning, some kosher salt, and fresh ground black pepper. I let it simmer together for an hour or so, and we had some really comforting, delicious soup.

Unfortunately, that was all I had in my bag of tricks. I became slightly panicked on Friday night because I couldn’t think of anything else that was Whole30 compliant for me to make for dinner that would soothe Adam’s cold.

The Foodee Project & Chowstalker to the Rescue!

Everyone who knows me well knows that I am a research fanatic. The first thing I did was to Google “paleo while sick” and “whole30 while sick” to get some results where I could see what others who were keeping this diet do when they’re feeling ill.

I was shocked and saddened to see that there were few answers or suggestions for anything other than scrambled eggs and bone broth. Heck, some people even advocated fasting. I thought that was crazy. Fortunately, there were a few more helpful suggestions on TheClothesMakeTheGirl – she suggested zucchini noodles with ghee and mashed potatoes. Both are very respectable suggestions. Unfortunately, Adam wasn’t in the mood for any of that.

So, I hit up Chowstalker and The Foodee Project for Whole 30 recipe suggestions. I found a lot of good options, and I thought I should share them with you! I need to add all of these to the Paleo Compendium.

Soups

Curried Butternut Squash Soup
Roasted, Curried Pumpkin & Butternut Squash Soup
Curried Apple Soup
Sweet Potato Basil Soup
Indian Spiced Sweet Potato & Bacon Soup
Beef & Mushroom Soup
Spicy Chicken Vegetable Soup
Smoky Mexican Tortilla-less Chicken Soup
Tuscan Chicken Soup
Ginger Chicken Soup
Curried Cauliflower Soup
Golden Cauliflower Soup
Silky Gingered Zucchini Soup
Avocado Soup with Cucumber
Gazpacho With Zucchini Pasta
Squash & Crab Bisque

Not Soup


Fall Harvest Mash

Butternut Squash & Yam Mash
Turnip-Cauliflower Mash
Lemon Cucumber Noodles with Cumin

Feeling Better

Today is Monday, and Adam is back at work. The sun is shining, and temperatures are back up above freezing. That means that tonight, we’re definitely headed to the gym, and that I need to get something started in the slow cooker about… now, actually. (Geesh! Better finish this entry.) Tonight, we’re having Slow Cooker Rotisserie Chicken & Sweet Potatoes.

Hope you’re all doing well!

Records

Chicago Record: Broken

Thanks to the polar vortex, currently in Chicago, it is -16° F degrees outside, with a wind chill factor that makes it feel like it’s -42° F.

Today, Chicago Public Schools are closed. That’s all but unheard of in a city where they bust out the salt and plows at the first sight of snowflakes. Many people are missing work today because some of the public transportation trains aren’t functional in this weather. Heck, even our local YMCA is closed! (No gym for Adam and me today.) The weather has actually broken all of this city’s previous records for cold. It snowed for 3 days straight, but now that it’s actually at its coldest, the sun is shining brightly. I’m definitely not complaining about that. It just deceptively looks like a good idea to go outside.(It’s not. You can get frostbite from being outside for 10 minutes!)

Sounding like a broken record… The Whole 30

Adam and I have been doing well on the Whole 30. I can’t believe that it’s only 1/6. How is that possible? It feels like we’ve been on this diet for-ev-er, and not just 6 days. There were 2 things that made it really tough to stay on track during the last week – but I am really proud of Adam and myself for staying true to our course.

First, we received a box of chocolate-covered strawberries from Sherrie’s Berries. Fortunately, we were able to give them to Adam’s folks, and they didn’t go to waste. Receiving chocolate strawberries and not eating them felt wrong. On the one hand, I felt a moral imperative to eat them because they were a present from my parents, and I *love* chocolate strawberries. On the other hand, I wanted to maintain integrity to the diet because I’m trying to help my blood pressure so that we can get pregnant sometime soon. Apparently, I’m really dedicated to this kid.

It was even harder to keep the diet on Saturday night when we went out to Chuck’s BBQ for a friend’s birthday. I didn’t have a hard time with avoiding the 120 beers on tap, but the pervasive smell of sweet BBQ sauce made my brain want to go splodey. Appetizers were ordered: BBQ nachos and cheesesticks. The nachos smelled so good, I actually whimpered. Surprisingly, I didn’t care about the cheesesticks. Fortunately, there were a few dishes on the menu that were paleo-friendly. Adam got the roasted chicken with salad and I got cochinita pibil with cajun green beans and salad. Were they delicious dishes? Yes. Did it make it any easier to not think about the plates of BBQ nachos on the table? Not even kind of. Thus, I think I’m going to try not to go to anymore restaurants this month. The temptation is just too intense.

We haven’t kept true to the meal planning chart that I made because we’ve made food as we’ve felt like it. We also managed to source some ingredients at Trader Joe’s that we weren’t expecting to be able to find, so we got to try some recipes for which I hadn’t planned. BTW, if you’re curious, Applegate Organic Beef Hot Dogs are totally yummy, and Paleo Parents recipe for “Not Beenie Weenies” is totally good with a little mustard.

Stationary Bike Personal Record: Broken

The plan of doing 45 minutes a day of cardio may have been a bit lofty. Ok, so it was totally unrealistic… but good things have come from trying to achieve that goal.

Last week, we went to the gym 5 times. One of those days, I had to quit 20 minutes in because I was so fatigued, but I hit 45 minutes the other days. As for breaking my biking record: in the past, I have, at the most, been able to use the stationary bike to go 6 miles in ~30 minutes. On Thursday of last week, I biked for 30 minutes and made it 6.7 miles! Sure, it’s only another seven tenths of a mile, but it shows me that I’m getting stronger and faster. It encourages me to keep going.

Just for the record…

As for overall health, things have been really wonky this past week. Monday, I was too fatigued to keep going after 20 minutes at the gym. Thursday, I was so fatigued from MS that when I woke up, I couldn’t physically get out of bed until 2:30 p.m. (And *WOW* did I have to pee when I finally managed to move.) I felt better after lunch, though, so I still did 45 minutes at the gym that day. I felt good for a few days, but then yesterday, out of nowhere, I had a ton of seizures.

I really hate the rare occasions when I don’t have an aura and just spontaneously have seizures. I actually fell yesterday. That hasn’t happened in a long time. I only know this because today, my left knee and hip are hurting, and I have a vague recollection of waking up on the floor.

So, there was no gym this weekend, and there won’t be any today. Life goes on. At least, I’m doing the best I can. Maybe I’ll do some yoga here at home.

Spinning round and round…

I’ve been really struggling to not relapse into depression recently. It’s sometimes very tough work battling irrational thoughts.

My mom unintentionally pushed one of my FML (fuck my life) buttons hardcore a few days ago by sending me a job posting and suggesting that I apply. We talked, and I understand that she was only suggesting that I apply for the job because she was thinking how lucky the company would be to have me on board, but her explanation didn’t change the fact that being sent a job opening and suggestion to apply highlighted the facts that I am both disabled and am not working.

One of the things I really devoted myself to learning with my therapist last year was finding my worth without employment. She consistently made me acknowledge the fact that having a job doesn’t give a person any more or less worth to the world. I worked hard to be able to say and believe that my worth as a person exists in the fact that we are each unique expressions of God that can only be experienced for a limited time. Even a clone wouldn’t be the same me.

I think one of the hardest things that I’ve had to accept in the last several years is that all of the planning in the world doesn’t really matter when reality smacks you in the face with an impediment. What matters is how you react to the impediment. What matters is resilience.

I have a hard time coping with the reality of not only not being employed, but also not actually being employable. On the rare, wonderful days when I feel well, I irrationally feel like I’m stealing… like I should magically have a job to go to… as though I should only have financial support if I’m feeling bad, which is ridiculous, because with MS, I *am* genuinely always ill. On the days when I feel particularly bad, I am intensely grateful to not have the added responsibility of a job to deal with.

When confronted with thoughts about employment, I immediately flash back to the countless lectures Mom and Dad gave me and my brother while we were growing up about the importance of personal financial responsibility, stability, and independence from others… and I feel deep shame that I haven’t figured out a way to be the independent, self-sufficient woman that my parents wanted me to be, and who I aspired to be, despite my health complications. Not to mention the promise I made myself after my first husband gutted our bank account when he left – which was that I would never be dependent on anyone ever again. That was my whole reason for going to law school. Oops. Guess that didn’t exactly work out.

It only complicates things for me emotionally when friends-of-friends do any of the following: 1.) Ask me what I do for a living 2.) Go on political rants about makers and takers 3.)Talk about how their relative with MS works just fine. Nevermind the fact that I have seizures or that MS is different for everyone who has it. All 3 of these things have happened in the last 3 days.

Living with intense shame is miserable. There’s only 2 ways to fix it: either live in concert with your integrity (which is not an option here) or change your attitude. Changing your personal views about something that previously was such an integral part of your identity isn’t easy. It takes time, and there are always relapses to your old way of thinking that you have to fix.

So, I’m doing what I can. I’m staying busy. I’m trying to focus on things I can do, rather than what I can’t. I’m looking to the future with hope.

And my inner-juke box is playing Are You Satisfied? by Marina and the Diamonds on repeat.

Returning to the Paleo Diet

English: vegetables

Good food is good.

The Cavegirl Cometh.

The lazy part of me is groaning so hardcore, but after reading about the modern science that backs the paleo diet, I found myself challenged.  I could either continue a way of eating and exercising that “fails long-term over 95% of the time,” or I could “eat more and exercise less—but smarter.”  When I reread what I had written yesterday, though, it made me look at these statistics with a new set of eyes.

“[I]n all of the studies that follow, everyone ate the exact same quantity of calories, but one group’s calories were of much higher quality [meaning part of a primal/paleo diet]:

  • University of Florida researcher J.W. Krieger analyzed 87 studies and found that those people who ate [a paleo diet] lost an average of 12 more pounds of body fat compared to those who ate an equal quantity of lower quality calories.
  • C.M. Young at Cornell University split people into three groups, each eating 1,800 calories per day, but at different levels of quality. The highest-quality group lost 86.5% more body fat than the lowest-quality group.
  • In the Annals of Internal Medicine, F.L. Benoît compared a reduced-calorie low-quality diet to a reduced-calorie high-quality diet. After ten days the high-quality diet burned twice as much body fat.
  • Additional studies by researchers U. Rabast (1978,1981), P. Greene (2003), N.H. Baba (1999), A. Golay (1996), M.E. Lean (1997), C.M. Young (1971), and D.K. Layman (2003) all show that people who ate [a paleo diet] lost an average of 22% more weight than those who ate the exact same quantity of lower-quality calories.”

So, if I’m genuinely trying to lose fat and maximize the effectiveness of my workout routine, it only makes sense that I would choose to eat in a manner that has repeatable, quantifiable results that match my desires. Doing otherwise is working against myself, and I don’t want to do that. Life is hard enough without giving yourself unnecessary barriers to success. I’m working as hard as I can to improve my body… I just haven’t been working as intelligently.

It’s funny, though, they never include “doing more dishes” or “spending more time cooking and shopping” in the calculus of whether or not a diet is good for you.  And I guess that tells me something important: those things aren’t terribly relevant. It ultimately comes down to motivation.

Motivation

Last time, the choice to quit eating a primal/paleo diet came down to convenience and a desire to be able to eat with family and friends at restaurants and on special occasions.  If I have any hope of maintaining this diet/lifestyle choice for any real amount of time, I have to address those needs.

80/20 = 100% OK.

Firstly, there is good precedent for not eating paleo 100% of the time. Heck, there are even some folks out there who say “you will get 99% of the benefits of the Paleo Diet if you adhere to it 80% of the time.” That being the case, to avoid the desire to quit because of what other people think of my food choices, I’ve decided to eat whatever-the-heck-I-want when I’m out with family and friends. I will not berate myself for eating a non-paleo meal when the occasion presents itself. I will keep a paleo home, which is where I eat most of the time anyway, and be proud of making healthy choices overall.

Convenience foods/K.I.S.S. (Keep It Simple, Stupid) = Good

There was a time when I was very concerned that eating foods that were ready-made was against paleo doctrine. I spent unnecessary time putting together fresh salsas, tomato sauces, and other products that exist in the marketplace with no forbidden foods as part of them.  I also thought of meals as needing to be composed, so I spent a lot of time cooking. I didn’t take advantage of the caveman thought process: grab food and eat it. This time around, I’m going to focus on simplicity.

Sticking with my supplements.

Every time that I go to work out at the gym, I take Assault prior to the workout and on days when I lift weights, I have a whey protein shake afterward.  (Adam and I call them victory shakes.) 🙂 Neither of these things are paleo, but I already have seen the benefits of using them, and I don’t intend to stop.

So what does that mean for this blog?

More paleo posts! I will probably return to posting a paleo recipe-of-the-day and growing the Paleo Compendium, which is now 1470 followers strong.

For now, however, I’ve got some meal planning to do. I don’t want to end up with a Whole30 or 46 that was as repetitive as the ones from my past. There’s no excuse for it when I’ve got 1159 recipes in the Compendium already waiting to be tried.

Tecfidera & MS Diets

It begins.

It begins.

Tecfidera & Me – The Beginning

Wednesday of last week, I received my shipment of this month’s Tecfidera. I decided to start it that night.

So far, it hasn’t been bad.  I take my pills with food (breakfast and dinner), and I’m already on Prilosec, so I haven’t had any stomach issues.  I have, however, experienced flushing a few times, and it feels more funny/unusual than upsetting. It’s kind of weird to have really hot ears out of nowhere.

I’m still not used to going to sleep without giving myself an injection.  Every night, I climb into bed and feel like I’m forgetting something important. I’m sure I’d get more used to it if I would just throw away the 5 sharps containers I have sitting on the nightstand next to me.

One thing that has already changed in my life, thanks to this drug, is that I am consistently eating breakfast. It still feels weird every day to eat prior to getting on my computer. I don’t know when in my life I actually stopped eating breakfast, but I’m pretty sure it was somewhere around 1994, when I had study hall 1st period during my freshman year of high school, and breakfast was a pack of peanut M&Ms and a Dr. Pepper from the school’s vending machines. (Hey, I was in band, marching with a 30 pound bass drum 6 days a week. My metabolism could somehow handle it then.)

The Wonderful World of Weight-Loss

Unfortunately, my metabolism is nowhere near as good as it was when I was 14. I currently am tracking my calories on MyFitnessPal and am following their suggestion of keeping my caloric intake below 1600 a day. I’m also working out pretty hardcore: doing weightlifting & 20 minutes of cardio 3 times a week and doing 30 minutes of cardio or more on the off days. You would think, after a month of that sort of activity, that I would have seen some movement from the scale.  I mean, I have been working out at least 3 times a week for 3 months now.  But the scale sits at 214 and will not budge for anything.

That’s not to say that I haven’t seen improvement. When I started working out, I was doing most of my weight-lifting exercises on the very lowest weight setting (usually 15 pounds) – and I’m lifting much, much more weight than when I was starting. I also couldn’t do a full 10 minutes on the elliptical trainer on level 1 without having to stop because of fatigue, and now I can rock out 20 minutes on level 10 without thinking about it. As far as measurements go, I’ve lost an inch from my arms, an inch from my waist, 2 inches from my hips, and 2 from my thighs. So, I am seeing improvement… just not on the scale. My relationship with gravity has not changed. And for whatever ridiculous and infuriating reason, that number, staring me in the face, drives me mad. It feels like the scale itself is saying to me, “You’re not trying hard enough. Do something different.”

Diets and MS

Of course, the first thing that comes to mind when thinking about weight loss is changing your diet. I’m already limiting my caloric intake to the amount that science says ought to make a difference. I started thinking maybe I needed to change what foods I am eating. I already limit my sugar and fat intake to 30g and 50g respectively per day. I already cut out processed foods.

Then, I read this article that talks about yet another doctor (Dr. Jelinek)  who has come up with a diet that he proclaims “cures” MS.  It just makes me shake my head and realize that a big part of why I am so frustrated with this situation is that I have tried so many different diets all throughout my life, with none of them making a real, lasting difference in my life.

I started with Weight Watchers when I was 8. That went nowhere. As a teenager, I tried Atkins. I actually almost passed out on the first day because my diet at the time was comprised primarily of bread and I had “nothing to eat.” After the first week, I decided it wasn’t worth it.

Once I got diagnosed with MS, I tried the Swank diet for several months with zero results. I asked my neurologist at that time what she suggested, and she said to eat a low-fat, high-fiber diet as suggested by USDA. Time passed, and I ended up with a seizure disorder. My epileptologist suggested that I try the ketogenic diet to help stop the seizures. But, since my seizures were caused by MS, that didn’t help either, so I went back to a traditional western diet.

Then, in 2010, I tried the paleo diet, in earnest – for several months. I had more energy, less pain from inflammation, and I lost weight without exercising… but it was expensive, took forever to make meals, and family was not supportive of it at all. Every week, when we’d visit Adam’s parents, there was some other reason that one of his family members would say we should quit the diet. We were presented with homemade cookies, bread, or sugar-added fruits or veggies that had been lovingly prepared that we were faced with, and it gets really hard, emotionally, to continually be telling your in-laws, “I don’t want to eat what you’re offering me.”  So, I caved in and went back to eating “like a normal person.”

Dr. Wahls shortly thereafter came forward with science that says eating a paleo diet, including the following “recipe” for daily vegetable intake can vastly improve your MS:  3 cups of cruciferous and dark greens, 3 cups intensely coloured: 1 cup red vegetables / fruit, 1 cup blue black vegetables / fruits, 1 cup yellow/orange vegetable / fruits, and 3 cups others including: 1 cup mushrooms / onion family (for organic sulphur), and seaweed for iodine and trace minerals. (source)

Many of my Facebook friends gave her formula a try, and while it hasn’t hurt any of them, I have yet to hear about any significant improvements.

Now, Dr. Jelinek says that we should be eating only eating only vegetables, fruits, nuts, legumes, seeds, pulses and grains (so most pastas, rice, wheat, oats, corn, barley, etc), fish and all other seafood, & egg whites. This means those of us with MS should avoid:

  • Meat, including processed meat, salami, sausages, canned meat
  • Eggs except for egg whites
  • Dairy products; that is, avoid milk, cream, butter, ice cream and cheeses. Low fat milk or yogurt is not acceptable. Cow’s milk and dairy products are best avoided altogether as the protein is likely to be as much of a problem as the saturated fat, given recent evidence. Soy products or rice or oat milk are good substitutes.
  • Any biscuits, pastries, cakes, muffins, doughnuts or shortening, unless fat-free
  • Snacks like chips, corn chips, party foods
  • Margarine, shortening, lard, chocolate, coconut and palm oil.
  • Fried and deep fried foods except those fried without oil or with just a dash of olive oil. It is important not to heat oils if possible.
  • Most fast foods (burgers, fried chicken, etc.)
  • Other fats and oils

Then there’s the MS Recovery Diet. It’s based on the idea that there are five common trigger foods that can set off the symptoms of MS–dairy, grains containing gluten, legumes, eggs and yeast.  This would seem to be mostly in line with both Dr. Wahls’ advice and the paleo diet.

Lastly, there’s the MS Diet for Women which was designed by an MS sufferer who has, as I have, gone through all the science on diets and MS and decided to smash them all together for the best result.  This diet has you avoid dairy/cow’s milk products, gluten and wheat, saturated fats (meaning red meat), heated fats (in any form), caffeine, refined foods (with high sugar levels), legumes, chicken and eggs, and citrus fruit. What are you allowed to eat?  Fruit (but not citrus!), all vegetables, non-glutenous grains, oily fish, nuts and seeds. That’s it. It’s like the paleo diet on crack.

It’s no wonder, when confronted with this many contradictory diets, that I am stymied as to the correct plan of action. This, of course, keeps me from doing anything but limiting calorie, fat, and sugar intake, which is exactly what both of my current neurologists say is all I should be doing.

I’ll let you know if anything changes.

*waves* Hello there.

If I didn’t know any better, I’d think I stopped caring about this blog at all. The truth of the matter is that I’ve just fallen out of the habit of journaling… and that’s not a good thing. So, today, I’ve decided to write, even if it’s a little disjointed.

What’s Going On With Me

Today marks the 20th day that I’ve been off any kind of disease-modifying drug for MS.  I have to say, I physically felt better when I was on Copaxone than I do now. Over the last 3 weeks, the numbness/tingling in my back has become more prominent; I’ve had a lot more fatigue; and cognitive fog has been almost constant.

Why am I not on Tecfidera yet?  Because you can’t do anything with MS medication without jumping through hoops of fire.

Last week, I found out that Humana/Medicare had denied my request to have Tecfidera as my DMD (disease modifying drug) because I had not already used every other available DMD on the market.

Why have I not been willing to take Avonex, Betaseron, Rebif, or Extavia? Because they’re all injectable interferon medications – and all of them cause depression. As someone who’s been treated for major depression for going on a decade now, my neurologist and I agreed that they would be bad for me.

I did some homework on the whole process of getting medication approved after a denial, and called Humana Greivances & Appeals. I asked for an expedited appeals process (which means they have 72 hours to make a decision because the medication is necessary for a life-threatening illness), and contacted my neurologist to get them supporting information as quickly as possible.  On Saturday, I found out that I have been approved!

So, now I’m just waiting for the mail-order specialty pharmacy to call me to schedule delivery. It occurs to me, as I write this, that I can and should expedite that process by being proactive and calling them instead.

Puff, Puff, Pass?

Speaking of medicine and expediting things… Medical marijuana has been passed in the IL house and senate. We’re just waiting for Governor Quinn to do the right thing and sign it into law. I’m trying not to think things like, “It’s been 20 days since you got it, Gov! Get on with it!” and instead am being patient.

I haven’t been using cannabis much at all over the last several months. There was a time when I lived in CA, was doing a lot of psychological work on my PTSD, and didn’t understand dosing (and thought I could make all my emotional and MS pain disappear with weed), when I smoked nearly all day, every day. I was, very simply, losing my mind then. I am very glad those days are behind me.  Now, I only use it when I have a bad PTSD flashback  (which, thankfully is very rare nowadays) or my other medications just can’t get the pain-management job done, and I’m pretty much desperate for relief.  I think the last time I had a friend source some for me was in December, and I only bought an eighth then. I’ve still got about half of it. This is a huge difference from the end of 2008-early 2009 when I was living in Glendale, CA, and went through about 3 eighths a month.

I still miss CA’s set-up though, and it’s what I’m really hoping for here in IL. I want my “license to use” and to be able to walk into a secure dispensary, see what’s available, and choose the medication that is right for my needs. I miss the opportunity to decide what kind of weed I’m getting!  There are more than a hundred strains of marijuana, and each one affects you differently.

When you’re in prohibition-land, you can’t be choosy. You take what you can find, and what you find is not always helpful. Sometimes, it’s even harmful. You could end up with a strong sativa that wakes up your body and leaves you mentally foggy when you actually need an indica that helps calm anxiety and ease pain that lets you continue functioning normally within your day. Getting the wrong kind of weed has happened to me more times than I’d like to admit since moving here.  This post by Berkeley Patients Care Collective goes into much more detail about this, and gives recommendations of types of strains for the medical needs you might have.

I’m also hopeful that the bill passes so that I can buy concentrates and use something like the CANNAcig. It would be very beneficial to be able to use what is essentially an e-cigarrete that’s been modified to work with cannabis. It is less smelly and has all the benefits of vaporizing versus smoking.

I also miss edibles, which are even better for helping with body issues and aren’t bad for your lungs at all. I remember when we were in CA, Adam and I talked about the possibility of me creating edibles for the dispensary that I used to go to. I really like cooking/baking.  Now that I’m not having seizures all day, I might be able to actually do something like that.

So What Am I Doing?

Right now, I’m still “just” a housewife. I do laundry and dishes. I go to the grocery store and I cook. Life’s simple, and that’s not bad. I really appreciate that I can take naps when I need to and that I’m able to give Adam freedom from some chores that he doesn’t particularly enjoy which I don’t find offensive.

I also have been working pretty hardcore on physical fitness, tracking my calories and nutrients on MyFitnessPal and working out 4-5 days a week at the YMCA up the street, doing weightlifting and cardio with ActivTrax. I wish this Y had late afternoon/early evening yoga classes like the YMCA in Collierville, TN did — but if I want to do yoga here, I’ve gotta get there at 8:45 a.m. Frankly, I couldn’t get myself to 9 a.m. classes in college and I barely made my 10 a.m. classes in law school. My sleep schedule has basically nixed group yoga for me for the time being.

Since the seizures have more-or-less disappeared (aside from when I have pseudoexacerbations, relapses, or am trying technology that doesn’t jive with seizures), I’ve done a lot of thinking about whether or not I want to take the IL bar exam and become an attorney, and when it comes right down to it, I do!  But the test costs $850 and the prep course costs $2050. This means that before I can even attempt the test, I have to find a way to earn $2900.

I’ve been applying for jobs for months now with no response. The economy is fucked, and no one wants to hire someone whose last real job was 8 years ago. I can’t say that I blame them. Who wants to hire an administrative assistant with a law degree when you can get one without a J.D. for cheaper and she won’t want to move forward with her life in a year?

This has lead to me realizing that I should just market my services as a web & graphic designer again.  I used to make about $450 -$500 per project when I was freelancing. 6 or 7 websites could mean that I get to take the exam. I’m even thinking about hitting up a good friend who has a successful web design firm to see if he would want to outsource any of his front-end design work to me.

I was concerned with the idea of freelancing somehow messing up my SSDI (I need to keep Medicare), but you’re allowed to earn up to $14,000 a year without it affecting your status. You just have to declare it.

This means that I need to create a site for myself as a designer, first and foremost. Next, I need to build my portfolio and see just what work I have on the web that’s still up there.  I am, of course, procrastinating on this, because, well, it’s what you do when you’re unsure of your plans.

What I am sure of, however, is that my life has at least a bit of forward trajectory at the moment, which is nice. There was a while where I was concerned that I’d become that girl who sits around at home and “does nothing” all day long because the work she actually accomplishes is mostly invisible. (There will always be dishes. There will always be laundry. The house will always need straightening.)  I’m not so concerned about that now.

I am, however, concerned that if I don’t stop writing and get off the computer, none of my invisible work will be done today — so I’ll wrap it up here and say thanks for reading. ❤