Seizure Disorder – My Rules for Daily Life

First – let me be clear that I understand Seizure Disorders are serious business. They change people’s lives, restrict certain levels of independence, require daily medicine that have side effects, and in some cases can be deadly. I have the risk of death myself thanks to the new lesions and screwed up electrical connections in my brain. BUT sometimes you have to laugh and poke some fun at your situation and let’s face it, those of you with seizure disorders will likely relate. If we don’t laugh, we risk falling into a pit of despair (eh, see that Princess Bride reference there? Don’t fret, there will be more.)

Daily medicine – keeping track of when and whether you’ve taken your medicine. This includes using medicine organizers, alarms, back up alarms, texts from loved ones, and perhaps more. We also keep any emergency medicine on our person at all times – educating loved ones about when and how to shove it in our gobs (chocolate coating not necessary.) We remind our friends and teach our children that calling 911 asap is essential if we’re likely to have a status epilepticus experience. This may only be necessary for those of us who have tonic-clonic (or grand mal) seizures.

Traveling can be stressful – making reservations, packing, arranging care for your pets and/or children, and beginning to adjust your medicine timing if you’re changing time zones on your trip. One thing that most of us with seizure disorders do (I assume) is research where the nearest hospital is at our destination, just in case. Booking accommodations near the hospital might be a little excessive, but somehow it doesn’t seem weird to me.

To tell or not to tell, that is the question. It’s always a challenge deciding who you tell and what you tell them. I volunteer at my youngest child’s school – should I tell the office staff, the librarian, and/or my child’s teacher? And if so, how much do I tell them?  Education is always a good thing, but I haven’t had a seizure in a year. I wear a medical bracelet, but let’s face it, there’s only so much information you can put on that little ID Tag. If you tell, you may have to deal with the nervous anticipation, the sideways glances, the pity (in some cases), and the eggshells they’ll be walking on around you. The Fire Swamp is tricky to navigate.

Phones – everyone has a cell phone these days – well there are some hold outs, but generally everyone has a cell phone. I’ve been instructed explicitly by my husband that my cell phone is to be charged, NOT on silent mode, and on my person at all times. Not being able to reach me causes fear and panic and that’s no fun for anyone – especially my husband (I can only say ‘as you wish’.) Portable charging devices are a nice addition to this plan.

Eating, snacking, hydration, and sleep are all critical for me to avoid a seizure incident. Different people have different triggers, so knowing your triggers is important. Yes, I carry a snack and a bottle of water with me everywhere. Yes, I have no problem taking naps, sometimes 2 naps if I feel tired (get some rest. If you haven’t got your health, then you haven’t got anything.) Yes, I eat regular meals. I think these things are generally common for all of us with seizure disorders. Anxiety can also be a trigger and I always wonder if you can worry to the point where you actually trigger a seizure while you’re worrying about having a seizure…

Strobe lights are bad. Very bad. Some people think they’re cool, but these people clearly don’t have seizures. Come to think of it, any flashy lights are bad. Just don’t go there, it’s too risky. Take the time to enjoy the view (outside), have a cup of coffee, read a book or chat with a stranger while your friends go into the flashy light experience.

A simple swim is no longer a solo activity. Swimming now requires the buddy system. Pick someone you like. Think twice about skinny dipping. Just sayin’…don’t try to go into the Fire Swamp alone, that requires teamwork.

Driving is a privilege. Don’t abuse that privilege. IF you feel wonky, don’t drive. If you’ve had a seizure, be prepared to implement plan b, c, d, or e while you wait for the 3 – 6 months without a seizure (fingers crossed) before you can drive again. You may have your license suspended for longer or revoked altogether, so have a plan to get your kids to and from school. Learn your local bus routes, get your bike all tuned up, tag along with your neighbors/friends while they run errands, and get used to walking. Not driving is inconvenient, but its better than being dead or even mostly dead.

Since I discovered I had a seizure disorder (by having seizures) I’ve become WAY more conscious of my underwear decisions. At the risk of over sharing, I follow that advice ‘Wear clean underwear just in case you have an accident.’ I tend to lean more toward the standard chonies rather than the fancy, lacy kind. I know if I land myself in the hospital, I’ll end up without my underpants and those nurses who remove them have seen it ALL before…but somehow I like to know I won’t be embarrassed by the condition of my underpants (‘I just want you to feel you’re doing well. I hate for people to die embarrassed’.) In addition, if aliens come down to add to their collection of underpants, I’d like to offer a nice option (this is not a reference from The Princess Bride, but it’s still funny. Well, I think it’s funny.)

Note: if you’ve not yet seen or read The Princess Bride, do so immediately.

The Dreaded Lunchbox

I know I’m not alone in this…I’ve heard some of you moms/dads express your joy at the end of the school year. Making interesting, healthy lunches every day all school year long is EXHAUSTING! Especially if you have 2 (or more) kids with different palates – one who refuses to eat ANY nutbutter, applesauce, most fruits/greens and the other who will eat anything as long as it’s only offered on alternate Tuesdays. We’re vegan, just to add to the challenge, and I’d like to send my kids to school with healthy, whole foods – rather than sugary, processed, packaged foods. And WHY is it that they’ll eat things so well at home, but if I put them in their lunch, they label them as ‘gross’?!!

All moms/dads start off with the best intentions at the beginning of the year to be creative, fun…almost adventurous – ‘the kids will eat it if it’s in cute little shapes!’ Then by the end of the year, we’re making the same sandwiches every day and throwing in a couple of pre-packaged snacks, knowing full well that apple we packed will be tossed in the trash, not eaten as we desperately hoped. The reality is that those cute little sandwiches or carefully organized/decorated bento lunches get destroyed the moment our child throws his/her lunchbox into a backpack and deposits it unceremoniously onto the pile of other backpacks the moment they arrive at school. Our efforts to rise extra early to bake fresh and tasty morsels for our little darlings have been abandoned for 10 more precious minutes of sleep. We’ve developed a chronic case of Lunchbox Fatigue.

So, the school year comes to a close and we do a little happy dance because it means that we’re done with the constant pressure of coming up with varied, creative lunches only to have them rejected day after day after day. But then we remember the kids will need to bring lunch with them to summer camp and we sit down and have a good cry.

To you moms/dads who have children who will eat anything or have the time/energy/skills to bake sneaky (i.e. super nutritious) delicious muffins or create artistic bento lunches – we hate you just a little.

Some examples of what we’re up against:

If I attempted ANY of these amazing sandwiches, I’m pretty sure they’d all look like balls of bread thrown up by the cat.

lunch14

This is ADORABLE now, but by lunchtime, it’s all one big crazy blend of food which resembles nothing like what you envisioned your child smiling at and devouring with joy, smugly thinking, ‘go ahead friends, be jealous…my mom is awesome’ and 75% of it ends up in the trash.

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THIS. IS. AWESOME. Question is – how could you destroy this work of art by eating it?!

Rock-n-roll-bento

This is my children’s last week of camp for the summer. I will do a happy dance on Friday as I pack my last lunchbox – until the school year begins again. In the meantime, I will do my best to stockpile ideas, freeze individual portions of healthy somethings-0r-0ther, get over my baking aversion, and re-bolster my energy and enthusiasm for the Dreaded Exciting Lunchbox.

You Are What You Eat

<Soapbox Alert>

I eat. Every day. Sometimes I eat more, sometimes I eat less. Sometimes I eat only because I know I have to. I usually enjoy eating. I usually enjoy cooking. I’m a pretty good cook, in fact – or so I’m told.

I’m vegan. That means I don’t eat anything that comes from an animal. I’ve been vegan for a long time – since I was 22. My family is vegan – my husband and my children. My mom is an occasional vegan. My brother-in-law is vegan. I have many vegan and vegetarian friends. The truth is that sometimes there’s some animal product in our food (which sounds really gross when I put it that way.) Occasionally, we get some egg in a baked good. Caseine can be tricky to avoid. They hide ingredients derived from animals by calling them something unrecognizable. We eat honey – we don’t believe in bee oppression. But we only eat one kind of honey unless we can’t avoid it. Heitkam’s Honey makes all other honey seem like high fructose corn syrup. Craig didn’t pay me to say that, it’s just the truth. You can find Craig and his honey at the San Jose Flea Market every weekend.

Cancer can be a very effective diet (as in weight loss) plan. I don’t have the kind of cancer that eats away at my body. I didn’t spend my 6 week non-spa treatment vomiting. I did start eating way less (except when I was on steroids). I stopped drinking alcohol (except for an occasional glass of wine). I have small snacks between my small meals. I do a better job of drinking water throughout the day. I read labels and I eat lots of fresh fruits and veggies. I’ve lost weight – enough to need new clothes. While I wasn’t overweight, it was weight I probably needed to lose, so now I’m where I really should have been before. I’m trying hard not to lose more. Even so, I would not recommend cancer as a way to lose weight. Ever. It’s extreme and unnecessary.

While I’d highly recommend the vegan diet, it takes work and practice and diligence. It’s the one my doctors were happy to hear I already practiced. It’s the one my kids’ pediatrician puts her overweight patients on to get them back on a healthy track. You can read story after story about people who have lost a lot of weight when they went vegan. But it’s not really about the meat or the cheese or the eggs. It’s about eating healthier. It’s about moderation. It’s about being informed. It’s about knowing about the food you put in your body and your family’s bodies each day. There is proof of a link between diet and health – if not cancer. It doesn’t seem like rocket science when you really think about it. What you eat determines whether you have the nutrients your body needs to grow and thrive and function as intended.

There seems to be cancer everywhere around me. Maybe it’s like when you learn about a new car and then all of a sudden you see that car EVERYWHERE…you probably saw it before, you’re just looking for them now. BUT, ask yourself – what effect does genetically modified produce, factory farmed meat (full of hormones and antibiotics), produce full of pesticides or highly processed ‘food’ have on your body.

My diet couldn’t have prevented my kind of cancer, but it could prevent other kinds. So, climbing on to my soapbox, I’d suggest:  Eat more whole foods, less processed. Eat more green, less beige. Eat more fruit, less sugar. Cut out the soda, buy a re-usable water bottle and keep it filled and at your side. Don’t feel like you have to clean your plates when you eat out – some American portions could feed an entire family. Learn about where your food comes from. Understand what Organic and GMO really mean. Learn about food additives like artificial food coloring. Read labels and ask yourself if you want to eat that thing you can’t pronounce. Ask yourself why some chemicals, additives, and GMO are banned in other countries and not in the US.

I’m not saying you should be vegan, it’s not for everyone. But maybe read, learn, and make even small changes. I know it’s not easy to change the way you eat, but it can be done and it just may save your life or the life of someone you love.

Some resources I’d recommend:

100 Days of Real Food

Food, Inc.

The Non-GMO Project

The Vegetarian Resource Group

Dr. Weil

Dr. Sears

(Climbing down off of my soapbox. Happy eating!)