Menu for Week 6.5 of 6.5

You’re on your own, people! If you can’t figure How-To-Be-Paleo out by now from prior menus, I feel bad for ya.

For breakfast, I suggest: Eggs, Meat-of-some-sort, and Fruit; a Fruit Smoothie; Scotch Primal Eggs; or Sweet Potato Hash

For lunch, I suggest something you can make in 30 minutes or less: Spaghetti Squash & Meatballs; Salsa Chicken Salad; Cilantro Chicken Nuggets; Spinach Salad with Bacon and Mushrooms; Buffalo Chicken Pizza, or Turkey Tacos

For dinner, I usually turn to the Crock Pot most nights for delicious meals like Deadwood Beef Stew, Chile Verde, Honey Ginger Apple Shredded Pork, Chicken with Vegetables, or Easy Shredded Beef.

Make a menu that works well for you and avoids grains, legumes, and dairy. It’s worth it!

A Sisterhood of Symptoms

One thing about MS that is true is that it is different for every person who has the disease.

One thing that is also true about MS is that the symptoms can be similar for each person who has MS.

There’s a list of symptoms that we all go through, just nobody goes through them consistently or on the same schedule as anybody else, which brings us to our first unifying factor…

Unpredictability

People with Multiple Sclerosis learn very quickly how to make tentative plans. They get used to breaking plans consistently because they simply cannot keep them, due to medical reasons. They get used to modifying plans to accommodate for things like the heat outside, a venue not having air conditioning, or an activity being too physically taxing.

This makes it tough for folks who have MS to date or hang out with friends who aren’t hip to the fact that the disease comes with stuff like heat sensitivity, photosensitivity, fatigue, and muscle weakness. It fundamentally changes the lifestyle of someone who is just diagnosed. It is, without a doubt, the biggest patience-builder of all of the symptoms.

Fatigue

Now, fatigue is universal for MS sufferers. I don’t care what doctors say about “some people” not necessarily having fatigue. If your immune system is busy eating your nervous system, then you’re going to get wickedly tired. That overall heavy feeling you’ve got, literally all over your body — it’s Fatigue. With a capital “F” for “FUCK, THIS IS ANNOYING.”

It’s bigger than being “a little tired” or wanting a nap. Fatigue shuts you down. It’s as though a hypnotherapist has told your body that on the count of 3, you will be asleep, and the rat bastard has counted to 2. Now, you can go ahead and try to live your life with the weight of your whole body on your shoulders without going to bed… but you can trust me when I say, “It ain’t gonna happen.”

Zaps. Numbness. Tinglies.

Whether it’s electric zaps, tingles, numbness, or fire, the odds are extremely high that at some point in your career as an MS sufferer, your nerves will misfire and you will feel something “incorrectly” because your neuron has been eaten!

For me, this has meant numb/tingly feet and hands — and a mostly numb left side. For my friend, Nahleen, she also had numb foot bottoms. Others feel differently — but we all deal with feeling our skin incorrectly at one time or another — and that is scary as hell!

You don’t want to think that your body is interpreting things wrong, because it means you’re broken. And that kind of thinking leads towards…

Depression

Depression is incredibly common among MS sufferers. In fact suicide is a big killer among those of us with the disease because there is only so much they can do to manage our pain, and because the disease is degenerative. Once something is broken, they can’t fix it. It’s a very sad thing, where if you think about it too long, it’s going to bring you down!

This disease can take away your will to live so easily if you let it. It changes who you are by changing your ability to make plans, making you tired, and changing your ability to do the things you used to be able to do! You have to constantly fight to assert your personhood. You have to scream from your insides, “I AM ME! HEAR ME ROAR!” That’s what I did when I had blue hair, and what I try to do through this blog. It’s what I also try to do through music.

Heat and Light Sensitivity

Now I thought about just listing “Sensitivity” as a heading, but Heat and Light are what really do it to us – the sun is not our friend like it used to be. Heat will make our symptoms come out. It’s scientifically proven, so we hide in the shade, which also brings up depression for the sun lovers out there.

Some folks are photosensitive to boot and can end up burning more quickly in the sun! Burns make heat make symptoms pop up.

Bathroom Disasters

You know that book “Everybody Poops” ? Well some of us need a little extra help — or no extra help! MS messes with your gut — so some of us have no bowel control: and that means wearing Depends. Others of us, like me, can only go to the bathroom if we take Probiotic supplements because all of the medicines we’ve been on have destroyed the gut flora that we need to help us go to the bathroom regularly!

Some of us can control when we pee, and some can’t! But we all have to go…

Muscle Spasms

I have yet to meet online or in real life, an MSer who doesn’t suffer from random muscle spasms.

Cognitive Fog

I was gonna write something about how sometimes we forget about the things we were gonna say, but I totally spaced on what I was gonna put here…

And this stuff is happening on and off, all the time, every day.

This is what it means to have multiple sclerosis.

But happily, the more folks you know who have it, the easier it is to deal with when you have it yourself. There’s a feeling of normalcy when you join support groups online like what’s available on Patients Like Me or Facebook. You learn that you’re doing just fine by getting up every day, eating your 3 square meals, and doing your best to do chores when you can.

You realize that being the best YOU that you can be is what’s important, and that you’re on no one else’s life path. Whether you have MS or not, that’s a really important lesson to know.

You find solidarity among people just like you who are coping with the unknown, and you realize that even healthy people don’t know what’s coming next, so you just handle things as best you can and try to make the most you can out of every day.

Because that’s what life is really all about.

Give yourself over to what really matters to you.

Today on Facebook, one of my longtime friends wrote,

[He] had a great talk with one of his young students last night about careers and the future. During the talk the revelation hit, “I enjoyed my career in IT for the most part, but if someone came along any time during it and offered me ten million dollars with the condition that I could never have an IT job again, I would have leaped at it. In contrast, if I was offered that money but I could never fence or have anything to do with fencing again, I would refuse it on the spot.” Sounds like a good litmus test for figuring out one’s vocation in life.

Right then, it hit me: The only thing I would refuse $10,000,000 for would be leaving Adam. I’d be willing to change my life in almost any other way. I don’t feel passionately about anything the way my friend does about fencing — except for my marriage.

I used to feel that way about music, back when I was performing with an orchestra at Sewanee Summer Music Festival — way back when I was 14 and 15. But it’s been so long since I was part of a symphony. It was half a lifetime ago, and back then, honestly, my parents were paying for the privilege of symphony being my day and night, even if I was constantly working on stuff.

There are a few things that bring me real happiness nowadays: songwriting, cooking well (when I can), going to karaoke sometimes, and designing architecture and decorating it in Sims 3. (Yay for virtual dollhouses and creating towns for my electronic paper dolls. It helps stave off boredom.) I’ve started crushing cities and rebuilding them the way I want them.

I also am participating in coupon trains and doing my best to bring value to the family. I feel like there’s a lot that goes into being a homemaker, and I’ve just hit the tip of the iceberg.

BTW, if you haven’t been to A Full Cup to print off coupons, then you’re spending money that you don’t need to. Just Sayin. 🙂

Life is pretty good right now. I think the most important part of what my friend’s story and advice really impart are this:

Find what matters to you, and throw yourself into it with all your heart and soul. It will be worth it.

Productive Complaining…

I’m sore from my cheekbones to my toes. Staying awake is difficult. Perfect time to write.

You know, I almost didn’t start a journal entry today, but then my friend Gary said,

“Every time I want to feel frustration about my tiny health issues, I read your blog and your posts and stop feeling sorry for myself immediately. You provide a wonderful and powerful example for the rest of us…please keep posting, and thanks.”

So I figured, why stop at Facebook? Why not talk about the truth of the game that I go through in moments of severe pain like this…

The Why-The-Fuck-Am-I-Hurting Paranoia Dance

Everything is suspect. For some reason knowing the cause of the pain should somehow allow me to accept it. And “MS” is not good enough.

First: Question hormones. Is it that time of the month (or season as it may be)?

If it is, then there is fuckall you can do about it but deep breathing, meditation, smoking weed, or sleeping. It sucks to be you.

Second: Question diet. Did I break paleo? What did I reintroduce? Can I replicate this pain later by eating the same thing? (Otherwise this is not caused by diet)

Third: Question health. Am I fighting off an infection? Do I have a fever?

Fourth: Question sanity. 🙂 Remember you have a disease that does this at will, and not your will. Start taking deep breaths and welcome the pain to the table.

About then is when you’ll cry, if you’re gonna.

There’s no shame in tears. They happen whether you want them to or not, just like the muscle spasms.

I think sometimes, my biggest accomplishment is sitting through what my body is telling me it’s going through and just staying online and acting like nothing’s wrong… blogging and chatting just like always. It freaks me out, the way my body reacts incorrectly to things sometimes. And knowing that it’s degenerative just makes it scarier.

I’ve had people ask me how I deal with it. And the truth of the matter is that I honestly don’t think about the worst of it. I act like once I’m not hurting badly or having a seizure, I’m never going to have one again, until I do. And then I deal with it. Because no one knows what tomorrow might bring — what scientific achievement, what opportunity, or whether you’ll live even. So you can’t spend all your time fretting and waiting for it to happen, even if it’s exactly what we all sort of do, at least for the first year of having seizures.

I haven’t had any in a while. Not since we moved me up to the higher dose of Topamax. We still have a few more doses to go up til we get where the doc wants me. Either way, at least I’m not waking up in the car, wondering where I am. That’s always a welcome change.

Tomorrow, I go see Dr. J to hear the results of the MRI and to discuss treatment options. Let me tell you how enthused I am about that trip.

Fortunately, tomorrow’s got a prize in its Happy Meal! My mom’s flying to town for a meeting, so I get to spend an evening and a morning with her! 🙂 Should be a really nice time.

Menu for Week 6 of 6.5

Sunday, March 25, 2012

Breakfast
Paleo Lemon Poppyseed Waffles

Lunch
Cilantro Chicken Nuggets

Snack
Clementines

Dinner
Spaghetti Squash with Meatballs

Dessert
No-Bake Sticky Apple Bars

Monday, March 26, 2012

Breakfast
Eggs, Bacon, & Apple

Lunch
Lemon Garlic Swai/Tilapia

Snack
Clementines

Dinner
Honey Ginger Apple Shredded Pork

Dessert
No-Bake Sticky Apple Bars

Tuesday, March 27, 2012

Breakfast
Fresh Fruit Smoothie

Lunch
Spinach Salad w/ Bacon & Mushrooms

Snack
Apple & Cashew Butter

Dinner
Deadwood Beef Stew

Dessert
Frozen Banana

Wednesday, March 28, 2012

Breakfast
Fresh Fruit Smoothie

Lunch
Salty Sweet Broccoli Salad

Snack
Apple & Cashew Butter

Dinner
Goat Cheese-Stuffed Chicken & Spinach

Dessert
Frozen Banana

Thursday, March 29, 2012

Breakfast
Primal Scotch Eggs

Lunch
Asian Ground Beef, Mushroom, and Broccoli Slaw Lettuce Cups

Snack
Clementines

Dinner
Jambalaya

Dessert
Frozen White Grapes

Friday, March 30, 2012

Breakfast
Sweet Potato Hash

Lunch
Turkey Tacos

Snack
Clementines

Dinner
Red Curry Chicken w/ Cauliflower Rice

Dessert
Frozen White Grapes

Saturday, March 31, 2012

Breakfast
Fresh Fruit Smoothie

Lunch
Bacon Sweet Potato Poutine

Snack
Apple & Cashew Butter

Dinner
Buffalo Chicken Pizza w/ Goat Cheese

Dessert
Dark Chocolate Chip Cookies