Pretending to be “Normal”

 

Epilepsy is a funny thing. I can go weeks without an “episode.” I love those times. It’s when I feel most normal, like I can do anything, like I’m just like the woman standing beside me at the grocery store (except that she probably drove herself there – I can’t drive…thanks epilepsy).

And then it only takes a 30 second “episode” to change all that.

My confidence (and my brain) gets shaken, and I suddenly get that apprehensive feeling that hangs over me like a dark cloud. When I was little, before I was diagnosed, I used to tell me mom that it was “going to be a bad day.” Neither one of us knew why I said it, I just had this feeling of doom that hung around.

Fast forward some 35+ years later, and I know exactly what I was getting at: the anxiety that accompanies seizures.

It was so much easier when I was younger and fearless. But as you get older, you get wiser, more cautious…almost to a fault.

Every time I have a seizure, it sets my confidence back a step. And depending on how strong the seizure, it sets my confidence back A LOT of steps.

It makes me question my independence: Should I go places alone? Should I take public transportation alone? Should I even try to cross the street alone?

I will always be the “weird girl in the corner,” I’ve gotten used to that. But I hate that my kids are now old enough to see me as the weird girl in the corner.

It’s hard to portray confidence, and show them that they need to work through their challenges whatever they may be, when some days I don’t even believe it myself.

Life will always through curve balls that you may not be prepared for, you just need to decide if you’re going to swing or duck. Today I feel like ducking.

I just want my confidence back. Tomorrow’s another day. Maybe it will be a good one. It certainly will never be a “normal” one.

Thanks for listening. I wish I had some grand epiphany to share, about how I’ve learned something wonderful from having epilepsy, but today my brain is tired. Today epilepsy sucks.

My Epilepsy Experience and being your own advocate

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First, some history. I’ve had epilepsy (absence seizures) all of my life, we think. I say “we think” because ever since I can remember, I have experienced the Auras that go along with my type of epilepsy. In short, we never knew there was a “problem” because when I was young, I would tell my mom that I felt weird, but I could never really explain what I was feeling, and she never saw any outward symptoms. When I was about 19 years old, I had an episode while I was driving and drove off the road and into the bushes on the side of the road. That’s when the whole adventure to diagnosis started.

The doctors figure that the disorder started when I was only an infant. At 6 months old, I got meningitis, with an extremely high fever, and the doctors have assumed that there is probably some scar tissue on the brain that is causing the seizures, though none has ever shown up on an MRI (the scar tissue, not the brain – LOL).

I’m 47 now, and have been through a slew of neurologists They aren’t my favorite doctors for a myriad of reasons, but mostly because they hand you a pill and don’t listen to your ideas.

But I know my body. I know what makes it tick. And without doing my own research and fighting for what I believe in, I would still be taking exactly what they tell me, and having minimal results.

I used to have seizures every month, like clockwork around ovulation until after my period. And I was told by the neurologist (usually a man) that “everything is worse at that time.” Yeah, but why?! But I listened and stayed away from birth control pills because the neurologist said it could interfere with my medication.

Until recently. I started experiencing symptoms of peri-menopause with off and on periods and heavier than normal flow. So, once I again, I started researching. There’s a type of epilepsy called Catamenial epilepsy in which women’s seizures are exacerbated during their menstrual cycles.

I approached my neurologist who sort of dismissed the idea, so I went to my gynecologist instead. The Nurse Practitioner I saw listened to me and put me on a progesterone birth control pill. The seizures stopped immediately! No kidding! For 4 months I was seizure-free. That was the longest I’d ever been without a seizure since I was diagnosed and started keeping track. I had a few breakthrough seizures when the pharmacy filled a different brand name pill for me. I know there isn’t supposed to be a difference, but I fought to get the same brand I had before, and it worked again.

Also, thanks to Peri-Menopause, I started experiencing night sweats. I read that Magnesium will help with those. And it does, sort of. This last weekend I was sick with some sort of intestinal thing, so I backed off of the Magnesium. Within two days I was having seizures again.

So I started researching, and it turns out that people with epilepsy are sometimes Magnesium deficient. What?! No doctor ever told me that. I went back on the Magnesium and the seizures stopped the next day!

So why am I telling you all of this? Because I want you to know that you HAVE to be your own advocate. YOU HAVE TO!

All this being said, I’m not advocating going off your meds. Don’t be reckless or careless and endanger your well-being. I still take my medication, because I think it probably works a little, though I can’t really prove it. But I’m not willing to go off of it simply because I don’t want to stir up the calm waters that I’ve fought so hard to find. But I seem to have found the right combination of meds and minerals to help my particular situation. And who knows? It may change again.

Talk to your doctor. If he or she won’t listen, find another who will. Be your own advocate, no matter what your situation. Sometimes we have to fight for our healthcare. We shouldn’t, but we do.

We deserve to live the very best life we can. We deserve to be healthy, whatever that means for you. Have you ever had to fight for your healthcare? What did you experience?

 

*I am not in the medical profession. This is my unique experience. I am not dispensing medical advice. The above post should only be taken as my opinion.

A Wonderful Life

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When I was a child, “a wonderful life” was something out of a 1970s sitcom. I think back to shows like Happy Days, and Laverne and Shirley. Shows where conflict could be resolved within a half hour, and rarely was tragic, and almost always was filled with comedy.

As I grew into adolescents, the description changed slightly, and started to veer off course from the original script. And then I was diagnosed with epilepsy, at eighteen years old, just as my adult life was beginning to take shape. Wonderful life? You’ve got to be kidding!

Days filled with doctor appointments, blood tests, brain scans, and medications didn’t fit in the script I was beginning to write for my life. What sitcom modeled a life like that? None that I could find.

But life seldom turns out to be the one we would choose, and mine was no different. During the early days of my diagnosis I fought against the path. I thought if I prayed hard enough, or could just find the right medicine, that sitcom-life would fall back into place. But it didn’t.

Over twenty years have passed, and I’ve learned a lot of lessons, as any middle-aged woman has. I’m eternally thankful that life isn’t a sitcom, it doesn’t resolve itself in 30 minutes, and you don’t always get to write the script. But the saying is true: Life is what you make of it.

Now, at 40-something years old, I am living a wonder-full life. Married, 2 kids, house in the suburbs..yeah, it’s sort of like the sitcom I always dreamed. But it’s the “wonderful” part that is so different from my childhood dream.

I never could have imagined the life God had planned for me and my family. I marvel at the blessings that each morning brings. I am in awe of the plans that have been laid before us. Even the detours have been wonder-full. It’s a script that I could have never written on my own. Left to my own resources it would have been a predictable, well-organized life that would have bored any on-looker to tears.

Who would have thought that out of the chaos, disappointments, triumphs, tragedies, monotony, and simplicity, this wonder-full life could have been created?

And so as I reflect back on my childhood, back on the sitcoms that helped shape my expectations, I can only hope that what will shape my children’s lives, and my future grandchildren’s lives, will be what epic movies are made of.

And that whatever they make of their lives, that they will learn to call it wonderful, or wonder-full, whatever the case may be.

Mom, can I have a ride?

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I don’t drive. It’s not a subject that I talk about very often, but I’m epileptic and therefore, don’t have a driver’s license. It’s inconvenient and the suburbs are not made for people who don’t drive. Fortunately, my husband picks up A LOT of the slack…when he can. And I have a good village that helps out as well.

I knew when I had kids that there would be challenges because of my “disability,” but one that I didn’t really consider was the disadvantage that not driving would have on my relationship with my kids. #drivingchallenges

Think about it, for those of you who drive. Where do you get to eaves drop on your kids’ lives without directly talking to them? Where do you have spontaneous conversations about little (or big) events in their lives? Where do you hear how they relate to their friends?

The answer is IN THE CAR on the way to somewhere.

I’m especially missing these moments now that my daughter has reached the teenage years, and some days, would be perfectly happy not to speak to us at all if she didn’t have to. In the car she would be a captive audience.

When we’re at home, all bets are off. I’m competing with so many other (and better) distractions that are available to her. Why would she want to talk to me? She’s got homework, unlimited internet entertainment, and ear buds that completely block me out.

I don’t blame her. I get it. She doesn’t think I understand, but I do. She forgets that I was once a teenager too. And even now, there are days I’d like to block everyone out, but I can’t. I’m part of the family. And she is too.

How do I get her interest, if even for a moment? There’s too much competition, and I am clearly trailing in the race right now.

So don’t take those carpool trips for granted. Don’t miss the opportunities you have when your kids are a captive audience. Those moments are golden; they can’t be replaced, and they can’t be manufactured.

Still looking for my “captive audience” opportunity. I haven’t given up, not by a long shot. I just have to be a little more creative. Okay…a LOT more creative. I’ll let you know when I figure it out.

Everyone Has Something…

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Next time you’re in a crowd, even a small crowd, look around. Statistically speaking, EVERY SINGLE PERSON in that crowd has something in their life that they find challenging. A limitation. Sometimes they wear their challenge on the outside and it’s easy to spot. But more often than that, it’s hidden. It’s under their clothes, it’s under their skin, it’s in their brain. And it’s unique to each person.

Even the people that appear to have it all together, they too have something bubbling just under the surface. No one is immune.

One of the most valuable lessons we can give to our peers is to learn to push through challenges. No matter what life has dealt you, you can use that experience to build or to tear down. And everyone has something.

I think our beauty comes from those “flaws,” from those experiences, and from those challenges.

I think it’s our job, as parents, as teachers, as mentors, to show our children and those around us, our flaws and our challenges, but don’t stop there. It’s our RESPONSIBILITY to show them how we push through our challenges and don’t let them limit us. To show them that even though we have a disease, disorder, or disability, it doesn’t have us.

People watch our every move, our every reaction, especially our children. They look to us for examples of how to handle the stuff that makes up life, both the good and the bad. A parent with a challenge has to shine through their disability, and show their children that it’s not something to stop them from doing what they want in life.

Even when we think our challenge is too big to get over, we can still show our kids what it means to HOPE. But hope isn’t necessarily proactive. Being hopeful can change your state of mind. The lesson is in how we ACT on that hope.

Think about some of our most inspiring people. Why do they inspire us? Usually it’s because they’ve achieved something IN SPITE OF or even BECAUSE OF a limitation. They’ve overcome and made things better for themselves or for those around them.

Everyone HAS something, but not everyone will DO something. How are you going to use your limitation to inspire those around you?

Moms Living with Disabilities – Part Three

This is Part Three of an Interview Series called “Moms Living with Disabilities.” If you missed Part One and Part Two, please check them out when you get a chance.

My hope is that you can identify with these women – maybe they are your sister, your friend, your mother, your daughter…maybe they are you.

My hope is to acknowledge these women for their bravery and honesty. Please be equally as honoring and encouraging in any comments that you leave.

 

This is Megan’s Story

Please briefly describe the disability or challenge that you have (what’s your official diagnosis)? Did you have it before you became a mom?

I’m Epileptic with a combination of tonic clonic and myoclonic seizures. Yes, I was epileptic long before Motherhood since my Epilepsy started in 1999 (my first year of college) and I had my son in 2013.

 

If so, what restrictions did it put on your life before children?

Well, I knew I had to balance stress and sleep- two things most college students are severely deprived of when trying to juggle academic and social life. Those are still two of my triggers, of which Mommyhood greatly tests. Lol We didn’t and still don’t know the exact cause of my Epilepsy, although we have theories, so each day was/is a guessing game as to what might trigger a seizure until I found a working medication.

 

What considerations did you make, if any, before you decided to have children? (Be specific – were there special medications, or did you have to stop medications, while you were pregnant, was there a chance of passing on your disability to your child)

Oh man. I knew I wanted children but I also knew Epilepsy and my medication could cause severe damage to the fetus and result in deformation and other serious disabilities. Fortunately, I was on Lamictal- had been for around 12 years by then- and all doctors agreed that’s one of the best medications to be on while pregnant. Although they don’t have a tremendous amount of research considering Lamictal is still fairly “new,” the incidence of deformity and developmental repercussions was relatively low in comparison to most other seizure drugs. And fortunately for me, I was only on the one drug… We knew the possibility for seizures considering the hormone influx and so we paid careful attention to my body while pregnant.

I had my first “pregnant seizure” at 3 ½ months… I had 2 grand mals back to back while my husband was on business in Vietnam. Not ideal. But we increased my med levels to counteract the influx of hormones. I had 6 more as the pregnancy went on and we decided my being a high school teacher and the stress of all I did was adding to my susceptibility, so I had to quit half-way through the year. Leaving my kids was incredibly hard but my health had to come first. I couldn’t risk more seizures and the lack of oxygen to my baby each time I had an episode. There was no driving and so I spent the last part of my pregnancy at home all day, most days. So depressing except I had a dream pregnancy otherwise- no sickness, only a few aches, and a very healthy baby. I loved being pregnant. Lol Seriously.

I had to have a C-section because my OBGYN and my neurologist agreed it would be unsafe for me to push because I have an AVM that’s already accompanied by a small blood clot at some point, and that’s a guess as to what factors into my Epilepsy. (No known head trauma in my life so that’s another mystery.) They didn’t want me having an aneurysm… And my little man popped out perfect- fat and healthy, no problems. I was blessed. I didn’t breastfeed though; I felt like I’d already pumped enough meds into my baby while he was inside me, so he was a bottle fed baby. Most women freak out at the thought but again, he turned out fine and I was confident in my decision.

 

Did family and friends influence your decision (either way) to have kids? Were they encouraging or did they try to discourage you?

All were encouraging but told me I knew my body best and it was a choice between my husband and I… I think all Epileptics need to remember that because it will be just the two of you balancing post-baby hormones, Epilepsy and baby at 2 AM.

 

How do you portray your particular disability to your kids? In what ways do you think it makes you a stronger mother?

I get asked this question all the time. JI don’t know about a “stronger” Mother but we are very honest with my son. Since my Epilepsy’s continued to be up and down since he was born, we explained it to him when he was 2… He’s very observant and although we know he doesn’t get everything, he understands and absorbs a lot. It’s not the sex talk so we thought we’d be as frank as possible. Lol He recognizes a twitch or small seizure and will sit next to me. In fact, he says “It’ll be okay Mommy” and holds my hand. He understands what “mommy doesn’t feel well” means and unfortunately there are times when he has to entertain himself or misses out on something… BUT he gets a tremendous amount of love and when I feel well, we do a lot to make up for it. I think if you’re honest with your child, he/she is a lot less fearful and more likely to feel in-the-loop and that’s all they want. To be “included” and loved.

 

What sort of help (if any) have you needed with raising your kids? Have you found people to be willing to help or do you sometimes struggle to find the help you may need (if you need help)?

I have great family and friends to help, but the greatest gift is my husband. No matter the sacrifice, he is there for me and balances the demands of work and the struggle of taking care of both of us. We discussed this before kids and I can’t fathom the pressure he’s under but he never fails to be by my side and we always confront this thing together. I’m very fortunate… But I just believe you have to always talk and remember to show appreciation for the caregiver as well. Their battles can be as tough as ours.

 

What kind of challenges as a mom do you face on a day to day basis because of having a disability?

I can’t do everything and I can’t be everything- a lot of the same challenges a healthy Mom faces too. Don’t get reeled in by Mommy guilt.

 

What positive things has your family experienced because of having a disability?

We’re strong together. I decided I didn’t want to risk the health issues of pregnancy or the post stress of raising a child, again, so I only have one child. So it’s just the three of us. With an almost 3 year-old and my health issues though, it takes a village. We are that village together because no one else is there for a random seizure at 3 am or in the afternoon when you’re playing Legos. It’s a crappy reality but it’s one that makes us stronger together.

 

What do you want to teach people about having a disability like yours (if anything)?

It’s a day in and day out, so don’t judge others by their appearance. Give people the benefit of the doubt that everyone has his/her own private struggle. Show compassion first, always.

 

What’s one piece of advice you’d give other moms who have a disability?

Your child’s first want/instinct is to love you and actually, protect you… So when you are healthy, show them the same as much as possible. They are also extremely resilient and they’ll survive the times you just couldn’t be there for them. All the “Mommy-doesn’t-feel-well’s disappear if you show them love and compassion when you do feel well. They absorb your behavior and attitude. Be honest, and always kind. Especially to yourself. 😉

 

Please visit Megan’s Blog at http://inmegansshoes.com/