Back when I was first pregnant, I didn't realize quite how much I would start to feel like a human pincushion. Having epilepsy meant that I went in for lots of extra tests, bloodwork, and the like to make sure all was healthy with me and baby. I got so used to giving blood on a weekly basis that it started to not phase me at all.
And I was happy to do it - ...
So this week, I signed up to get an Embrace watch by Empatica and didn't realize that as part of it I would be participating in a study to see both how well the watch works, its accuracy, as well as additional information about certain biometrics. Its supposedly supposed to help in further releases of the watch, and its accuracy in predicting seizures. In reading their blog they also hope to add in more things, like helping you to know when you are too stressed and to take time to take a few breaths and calm down.
I've also been participating for a while on a study on women of childbearing age who have epilepsy. I've been registering information about birth control options we do or don't use, their 'efficiency' in preventing or helping us to get pregnant, and then while pregnant, my course of action. My neurologist also based out of The George Washington University Medical Faculty associates also studies epileptic pregnant patients. She has asked if I can be a part of her studies - and I've happily obliged.
Why do I do all this? Well, its not because of a love of getting stuck with needles... I actually hate that part. But rather because these opportunities intrigue me. I wonder what kinds of advancements are possible due to me sharing information - simple things really. I hate having epilepsy - it just is a pain in the butt. BUT(T) (haha see what I did there?) if my being a part of these studies can help others manage their conditions in the future, and could maybe even lead to a cure someday, then why wouldn't I participate?!
ps - Will post more on my experience with the Embrace watch too.
Friday, March 31, 2017
Wednesday, March 1, 2017
Sometimes, epilepsy just plain stinks!
This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!
I leaned over my toilet, cradling it almost like I was hugging my little girl. I closed my eyes, breathing deeply - and summarily vacated my stomach of the day's food. I had the stomach flu - courtesy of my little babe who picked it up from somewhere (as an infant, who knows just where). With every heave, I silently prayed to God to let it be over, but I also had a thought that I wasn't just vacating the contents of my stomach, but also purging my body and my soul of all the negative thoughts that have plagued my mind as of late, "I can't do my job... I can't write... I can't bathe my child alone... I can't drive... I can't be a good sister... I can't be an attentive wife... I haven't seen my friends in ages... nobody understands... I'm afraid I'll have another seizure... What if I have one and I hurt my child? ... I can't leave her alone... I can't leave my husband a single parent... what the heck is going on... uggggh.... my stomach!!!"
In short, its been a long couple of months. In my last blog, written before I went back to work, I had an optimistic view of all that had happened, and all that was possible. And that is still true - I have been so blessed. My post portrayed an optimism that is encouraging, uplifting, and very much who I am, as a person. Always looking for the bright side, always taking life as one big learning experience. But I'm going to be honest for just a moment and say this: epilepsy sucks - and that is a kind way to put it. The reality of being a mom, and being a mom with epilepsy is something I don't think any parenting book, or any blog or advice column could have prepared me for.
The majority of the past year has been challenging, just as it is for any parent who works. I went back to work in August and adjusted fairly well. I had my good days, and my bad days, and was starting to finally figure out the schedule between childcare, pumping, and getting everything I needed to accomplish in one day. Then, in early December I had a breakthrough seizure. It was very unexpected and scared the bejeezus out of me as I was holding my daughter at the time the seizure hit. Thankfully she and I were both fine - other than shaken up. But I wasn't expecting the aftermath and what would come with it.
For me, typically, the months after a seizure my brain seems to work in slow motion and incomplete thoughts and fragment. Having a child, and thus having less time to myself and less sleep has exacerbated these after effects to a degree I could not have foreseen. And this is most evident at work. Little details slip through my mind like sand through my fingers. Things and details I once noticed disappear into the ether - and I've tried every trick in the book to make them stick. Notebooks meticulously organized, planners on paper and on the computer, and my mind still betrays me. I forget conversations and meetings that I have had, and feel as though I am constantly behind as I struggle to keep up. I have great thoughts or think about items to-do, and if I don't write them down at that moment, or get distracted in any way, it feels to me like the thought never existed at all.
And struggles with work are something that any working mom can relate to - baby brain is a real thing (or so proclaims my neurologist). I just finished reading "Maxed out: American Moms on the Brink" It was a really interesting memoir that I think any working mom, and even some working dads, could empathize with - and it brought up much of these notions about especially in America we are not a family-friendly workforce. Take the very notion of work life balance. The typical mom faces a situation where she goes to work in the morning (after 2-3 hours of getting herself and child(ren) ready for work), puts in an eight hour day, eating lunch on the go, or at her desk. She goes home and gets dinner ready, helps with the kids, puts them to bed. And then often goes online, once again, to finish out the day's business. And that is if she is lucky. Many moms and dads don't have that flexibility. They don't have the time to go to doctors appointments, or take sick leave - or even a weekend.
In short, it's hard. It's hard for any mom to fight against this incredibly strong current - and it's hard for those of us with chronic conditions whose body necessitates a schedule that is no longer the societal norm. A true 40 hour workweek. With stress as my main trigger for seizures, I need time in the evening to decompress - the busier and the more hectic the day - the longer I take to decompress. I don't check email. I don't go back online to get more work done. I won't - I need the time to let my brain rest. And I would be lying if I didn't say that I was paying a price for that small need.
So what do I do instead? Where do I find purpose? While I know this isn't for everyone, my faith is what brings me that greater sense of purpose. It has comforted me and let me know that I am ok - just as I am... epilepsy and all. That I am enough - enough for my baby, enough for my husband, and enough for me:
For I know the plans I have for you, says the Lord.
Plans for your welfare and not for woe, so as to give you a future of hope.
When you call me, and come pray to me, I will listen to you.
When you look for me, you will find me. Yes, when you seek me with all your heart.
(Jeremiah 29)
I also heard this song at a concert last week (music is often a refuge of mine, whether I am participating in creating it, or listening to it). And this song brought me to tears. After a very trying week, and feeling exhausted, this spoke words of comfort to me. While listening I had the feeling of being held and comforted, of knowing that I am not alone in my struggles. That there are others out there who know, who understand it, who get it. And there are others whose struggles are more demanding than my own - and my heart goes out to them.
There are times, days, seasons and years when I have felt I could do anything - and some people in this relay will share in that sense of empowerment. And there are times, like now, when I must rely upon the grace of others to receive the help I need. I do not like it, but I also know that in going through it, and only by asking for the help I need will I, in turn, perhaps make life that little bit easier for ones who follow me. From relying on my husband to drive me to do errands, like grocery shop, or be home so I can give our daughter a bath, or telling my boss that I need more time to complete my work and sometimes flat out fail at my job, to begging forgiveness of friends for having to cancel plans on them, or just needing to stay in to recharge my energy - I am dependent upon the grace of others to get through the day. And by recognizing that my life is a gift and that God will use my talents in His own way, and understanding at a deep level "thy will be done..." comes a moment, a glimmer of peace, comfort and rest.
By looking at our culture of go-go-go and saying, "no, no, no... this is not the life I choose, this will not be how I measure my success," is my own way of seeking peace in a time of tumult. The culture we are in today is one of incredible independence and self-reliance and it is very scary and lonely to go against that culture. But I believe it is a fight worth having, and that we have to work against this trend. Humans are made to live in community - we are a village and we are here to help one another. It is incumbent upon us all to help one another, and recognize that we each go through times and seasons of varying levels of effort and generosity.
We are all in this beautiful world together - and we have to share in each other's burdens. Thank you for reading as I share in mine.
NEXT UP: Be sure to check out the next post tomorrow by Karen C. at http://livingwellwithepilepsy.
I leaned over my toilet, cradling it almost like I was hugging my little girl. I closed my eyes, breathing deeply - and summarily vacated my stomach of the day's food. I had the stomach flu - courtesy of my little babe who picked it up from somewhere (as an infant, who knows just where). With every heave, I silently prayed to God to let it be over, but I also had a thought that I wasn't just vacating the contents of my stomach, but also purging my body and my soul of all the negative thoughts that have plagued my mind as of late, "I can't do my job... I can't write... I can't bathe my child alone... I can't drive... I can't be a good sister... I can't be an attentive wife... I haven't seen my friends in ages... nobody understands... I'm afraid I'll have another seizure... What if I have one and I hurt my child? ... I can't leave her alone... I can't leave my husband a single parent... what the heck is going on... uggggh.... my stomach!!!"
In short, its been a long couple of months. In my last blog, written before I went back to work, I had an optimistic view of all that had happened, and all that was possible. And that is still true - I have been so blessed. My post portrayed an optimism that is encouraging, uplifting, and very much who I am, as a person. Always looking for the bright side, always taking life as one big learning experience. But I'm going to be honest for just a moment and say this: epilepsy sucks - and that is a kind way to put it. The reality of being a mom, and being a mom with epilepsy is something I don't think any parenting book, or any blog or advice column could have prepared me for.
The majority of the past year has been challenging, just as it is for any parent who works. I went back to work in August and adjusted fairly well. I had my good days, and my bad days, and was starting to finally figure out the schedule between childcare, pumping, and getting everything I needed to accomplish in one day. Then, in early December I had a breakthrough seizure. It was very unexpected and scared the bejeezus out of me as I was holding my daughter at the time the seizure hit. Thankfully she and I were both fine - other than shaken up. But I wasn't expecting the aftermath and what would come with it.
For me, typically, the months after a seizure my brain seems to work in slow motion and incomplete thoughts and fragment. Having a child, and thus having less time to myself and less sleep has exacerbated these after effects to a degree I could not have foreseen. And this is most evident at work. Little details slip through my mind like sand through my fingers. Things and details I once noticed disappear into the ether - and I've tried every trick in the book to make them stick. Notebooks meticulously organized, planners on paper and on the computer, and my mind still betrays me. I forget conversations and meetings that I have had, and feel as though I am constantly behind as I struggle to keep up. I have great thoughts or think about items to-do, and if I don't write them down at that moment, or get distracted in any way, it feels to me like the thought never existed at all.
And struggles with work are something that any working mom can relate to - baby brain is a real thing (or so proclaims my neurologist). I just finished reading "Maxed out: American Moms on the Brink" It was a really interesting memoir that I think any working mom, and even some working dads, could empathize with - and it brought up much of these notions about especially in America we are not a family-friendly workforce. Take the very notion of work life balance. The typical mom faces a situation where she goes to work in the morning (after 2-3 hours of getting herself and child(ren) ready for work), puts in an eight hour day, eating lunch on the go, or at her desk. She goes home and gets dinner ready, helps with the kids, puts them to bed. And then often goes online, once again, to finish out the day's business. And that is if she is lucky. Many moms and dads don't have that flexibility. They don't have the time to go to doctors appointments, or take sick leave - or even a weekend.
In short, it's hard. It's hard for any mom to fight against this incredibly strong current - and it's hard for those of us with chronic conditions whose body necessitates a schedule that is no longer the societal norm. A true 40 hour workweek. With stress as my main trigger for seizures, I need time in the evening to decompress - the busier and the more hectic the day - the longer I take to decompress. I don't check email. I don't go back online to get more work done. I won't - I need the time to let my brain rest. And I would be lying if I didn't say that I was paying a price for that small need.
So what do I do instead? Where do I find purpose? While I know this isn't for everyone, my faith is what brings me that greater sense of purpose. It has comforted me and let me know that I am ok - just as I am... epilepsy and all. That I am enough - enough for my baby, enough for my husband, and enough for me:
For I know the plans I have for you, says the Lord.
Plans for your welfare and not for woe, so as to give you a future of hope.
When you call me, and come pray to me, I will listen to you.
When you look for me, you will find me. Yes, when you seek me with all your heart.
(Jeremiah 29)
I also heard this song at a concert last week (music is often a refuge of mine, whether I am participating in creating it, or listening to it). And this song brought me to tears. After a very trying week, and feeling exhausted, this spoke words of comfort to me. While listening I had the feeling of being held and comforted, of knowing that I am not alone in my struggles. That there are others out there who know, who understand it, who get it. And there are others whose struggles are more demanding than my own - and my heart goes out to them.
There are times, days, seasons and years when I have felt I could do anything - and some people in this relay will share in that sense of empowerment. And there are times, like now, when I must rely upon the grace of others to receive the help I need. I do not like it, but I also know that in going through it, and only by asking for the help I need will I, in turn, perhaps make life that little bit easier for ones who follow me. From relying on my husband to drive me to do errands, like grocery shop, or be home so I can give our daughter a bath, or telling my boss that I need more time to complete my work and sometimes flat out fail at my job, to begging forgiveness of friends for having to cancel plans on them, or just needing to stay in to recharge my energy - I am dependent upon the grace of others to get through the day. And by recognizing that my life is a gift and that God will use my talents in His own way, and understanding at a deep level "thy will be done..." comes a moment, a glimmer of peace, comfort and rest.
By looking at our culture of go-go-go and saying, "no, no, no... this is not the life I choose, this will not be how I measure my success," is my own way of seeking peace in a time of tumult. The culture we are in today is one of incredible independence and self-reliance and it is very scary and lonely to go against that culture. But I believe it is a fight worth having, and that we have to work against this trend. Humans are made to live in community - we are a village and we are here to help one another. It is incumbent upon us all to help one another, and recognize that we each go through times and seasons of varying levels of effort and generosity.
We are all in this beautiful world together - and we have to share in each other's burdens. Thank you for reading as I share in mine.
NEXT UP: Be sure to check out the next post tomorrow by Karen C. at http://livingwellwithepilepsy.
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