Life after an epilepsy diagnosis: Rafaela reminds us, we can be happy

Rafaela’s Story

Hi! I’m Rafaela, 31 years old, from Brazil, and living in Marina del Rey, CA. I decided to show people that are affected directly or indirectly by epilepsy, friends and family, that is possible to have an amazing life after an epilepsy diagnosis. It’s important to educate and end the stigma around the condition. So I want to get people together because it’s time to build awareness.

Epilepsy diagnosis

People need to know they’re not alone. I’m in my thirties, and it took me 20 yrs to accept and talk about epilepsy. I’m blessed, my husband, family and friends are very supportive. I just had a baby, he is turning 1, and his birth date is March 26, which is Purple Day! What are the odds? Well, I feel that this is more than a huge coincidence, I consider it a blessing.

So, I created an epilepsy awareness platform called @i_epilepsy, I have instagram account, website iepilepsy.com, facebook page and twitter to spread information and educate people about epilepsy.

I have shared the story of my baby, and despite the risk of congenital malformations, due to epileptic medication, I had my baby and went through pregnancy without seizures. Meaning I have epilepsy, and this didn’t stop me from trying to having a child.

Epilepsy doesn’t define me, and it shouldn’t define anyone.

 

Epilepsy Blog Relay: My Kindergarten Epilepsy Advocate

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

“How many seizures has your baby had today” asked my 3.5-year-old daughter, Rowan, as she regards her new little brother in my arms with a challenging look on her face. I answered, playing along, “uh, none so far today”. As Rowan held a little baby doll donning an NG tube just like Jack, her little brother nestled in my arms, she told me, “Well my baby has had three seizures so we have to go to Egleston, see you later.” And away she pranced clutching her special needs baby doll and click-clacking in her too big plastic princess heels. My first thought was that I should probably tell her not to play that game at school; and then, is it even healthy to let her play “seizures”? My insides burned with regret because in just a few short weeks since her brother’s birth, Rowan’s life has changed so drastically that she now plays seizures, hospital, and therapy games with dolls. But now, over two years later, I can so clearly see the truth in what my daughter was doing in her newfound play activities. My 3-year-old had already adjusted to her brother’s special needs and was waiting on everyone else to catch up. I felt it then, but I know it now: she will always be his biggest advocate and best friend.


Related: 5 year old Riley shares tips on epilepsy first aid


Love and acceptance

Epilepsy has changed my little family in unimaginable ways. While it has caused so much heartbreak, epilepsy has also provided a certain perspective that we may have otherwise never gained. However, there is no perspective to be had when you’re in a fight for your child’s life so it was difficult to watch my daughter playing “seizures” when my son was still an undiagnosed infant suffering intractable epilepsy and frequent hospitalizations. It’s interesting the little things that pop into your head while you’re suffering a trauma, especially one involving a child. You can find cruel and unique ways to blame and punish yourself for what has happened. For example, I didn’t know if I wanted a second child as Jack Jack was quite the surprise. I didn’t put this fear of the second child into words until I was pregnant with Jack and I told my family that my biggest concern about having another child was that it would take something away from Rowan’s life. It was hard for me to imagine loving another baby as much as I loved my daughter, who had been at my side for three full healthy happy years at that point. What if something is wrong with the baby? I had recently watched a show that portrayed special needs in children as scary and detrimental. I was worried in a way that I never was when I had been pregnant with my daughter. Maybe my body knew what my mind wasn’t ready to hear yet, but for a long time I blamed myself for saying those words out load and making them true. We can justify almost anything during times of tragedy, but my daughter has never seen her life as compromised or degraded in any way since her brother’s birth and I could not be more grateful for that.

Rowan has continued to show the same sort of uninhibited love and acceptance for her brother as he has grown and gone through many changes with his medical needs. As he struggled to learn how to walk, she cheered him on and drew photos of him using his walker alongside the family. When I reprimand Jack for trying to take his shoes and SMOs off in the car, Rowan will pipe up and say, “he’s just using his hand motor skills like you always want him to”. How do I even argue with that? I can’t tell Rowan not stick up for her brother just because it will take me another ten minutes to get his orthotics and shoes back on. I can’t feel anything but pride in a big sister who is protective, empathetic, and aware. Nothing will ever take away the sting of epilepsy, nor the strain it puts on a family, but it doesn’t have to devastating all the time. All of Rowan’s friends/their parents know the words epilepsy/seizure and none of them are frightened or feel uncomfortable by these words or the cute little boy they usually surround because of his amazing big sister. Rowan continues to spread awareness in Kindergarten this year and has formed two special connections with teachers (not even in her grade) based around her brother’s special needs. Both teachers have made a point to tell me about these experiences with Rowan and I was once again blown away by the power of a special needs sibling and the connection of community. One of the two teachers has son with epilepsy also and now she always speaks to me when I visit the school or am in the car rider line and has even told me to reach out if we ever need anything. The other teacher is incredible at sign language, making her a Rockstar to Rowan because of all the signing we have done and still do with her brother. Rowan has blossomed as a big sister, thriving despite the obstacles, and become the best 6-year-old epilepsy awareness advocate around. It’s important to me to show both of my children how proud I am to spread awareness about Jack’s rare disorder and different needs, while also demonstrating that epilepsy doesn’t define Jack, nor does it define our family.


NEXT UP: Be sure to check out the next post by Rafaela at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

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Epilepsy Blog Relay: Caregiver Fatigue

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

We all have someone who cares for us a great deal. For those of us with Epilepsy, or any chronic condition, there’s always a person or two who have extra responsibilities. Even if we are independent and can manage our epilepsy, there are those family and friends who look out for us daily and notice any changes. I certainly do this for my family and friends. Sometimes it is very tiring.

I never really thought much about the concept of caregiver fatigue until I became a therapist. I enjoy what I do and love caring for others. If I’m honest, though, it can be exhausting. For me, that took a long time to admit. In my caregiver role, I always want to seem strong in my mind, body, and emotions. That’s not realistic. We all have times where we’re strong and times when we need extra support. I was almost 2 years into my job before I finally could admit to myself that I wasn’t well. I gave so much of myself to everyone else (professionally and personally) and I was running on empty. I wanted to keep pushing through–I’m pretty stubborn like that. I was exhausted (more so than usual). I had no energy or desire to do anything other than lay on the couch or sleep. I cried a lot and my headaches increased. I knew I was neglecting myself but I felt extreme anxiety about taking any time away from the care I gave to others. Ultimately, my entire life suffered and I had to take a step back.

How I use self-care

For me, it meant giving myself permission to take Saturday mornings and watch a little more TV than normal. It meant extra long, hot showers to relax. I spent less time on social media and left my phone at home more often. I spent more time writing with a nice smelling candle right next to me. I started doing yoga and let myself be comfortable with letting a dish or two go unwashed for an evening. It took some support from others to get into a routine of relaxing…weird, right? I needed people reminding me to slow down. I learned that it is okay to take that step back. It doesn’t mean I care any less or I don’t have the same drive to help others. I wasn’t ignoring others and I wasn’t undermining anyone else’s needs. I was giving myself rest and using self-care, something caregivers don’t typically think about.


Related: Self-care tips to try


Signs of caregiver fatigue

Don’t be afraid to admit you have some caregiver fatigue. It just means you have to take some time for self-care. It will be okay. The world will not fall apart when you take a nap or spend a couple extra minutes in the shower.  As hard as it might be, loosen some of your control and delegate tasks to others. Ask someone else to fold the laundry and sweep the floor. Remember, there are people who want to support you! Make yourself aware of signs of caregiver fatigue and take a moment each day to notice what you’re feeling. Once you care for yourself, you are able to care more for others.


NEXT UP: Be sure to check out the next post by Leah at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

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Epilepsy Blog Relay: Epilepsy and Pregnancy – what to expect

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

Abby’s Story

What a year it has been! There is no other way to say it.

I’m Abby and have been blogging here at Living Well with Epilepsy for a while, but this last year has been an absolute whirlwind. Why? I had a baby.
I had a baby, and I am proud to say that I stayed seizure free throughout my pregnancy (I did have some intense auras) but overall I did well.

 

Pregnancy and epilepsy

That said, there are a few things that I have to say about pregnancy and epilepsy.

One: it’s hard. It is by far the hardest thing I have ever done in my life for so many reasons, and I’ll get in to those for those of you kind of wanting to know more.

Two: it’s life changing, for obvious reasons.

Three: it’s worth it.

I do not want to scare anybody with epilepsy away from having a baby when I walk through my experience. First and foremost, know that you are not alone. My ultimate goal is to help educate women with epilepsy and maybe give them a sense of what can be expected and that it will all be okay. Rewind my life to last summer when I was in the thick of pregnancy, I was not so sure.

Pregnancy is hard (epilepsy makes it a little harder)

I never could have imagined what I would go through and for purposes of keeping things simple for a blog post – there were three difficulties I had – morning sickness, severe depression, and pure exhaustion.

For starters, I had extreme morning sickness that lasted throughout the day. I was sick in the mornings (hence the name) and then again around 3:30 or 4 p.m. every. single. day. until around 22 weeks. Was getting sick an inconvenience? Absolutely. Do a lot of women have this? Yes. So why is it different for those of us with epilepsy? For starters, I could not keep my medicines down. When I would get sick in the morning, I’d usually lose some of my medicine. Not good, and my levels were dropping.

In addition, many women when these symptoms get bad enough, they are able to take an anti-nausea medicine to help them. Well, when it got the absolute worst, I took it, however the anti-nausea medicine safe for women who are pregnant can counteract your epilepsy medication, so you have to take it sparingly. Plus, there are side effects to the baby on that medication and you’ve already got enough side effects to worry about with the epilepsy medication by itself.

So, moral of the story, I took the anti-nausea medicine all of twice the entire pregnancy to ensure I did not have a seizure and that my meds stayed in my system. Other than that, all I can say is that I survived it while we continually increased my medication dosage.

Expect the unexpected

Second, for me, the depression was unexpected. This should be the happiest time of your life, right? For me, I believe that the depression came (or got worse) from not feeling well overall and not having enough time to give my body the proper rest it needed. I also am able to look back and know that some of that was because I was absolutely terrified that something would be wrong with the baby because of epilepsy, because of the medicine, because I would have a seizure, etc. My mind was constantly racing about if she was going to be healthy. The last part of feeling down came from the constant changing of my doses. My whole pregnancy, I’d go get my levels checked every two to three weeks and each time, my levels would drop because my body was metabolizing my medicine so fast. By the time my daughter was born, I was on three times my normal dose… also considered a “toxic dosage” as soon as I had her.

Sleep more if you can

Lastly, the exhaustion is overwhelming. It’s overwhelming for anybody. You’ll never meet a pregnant lady who is not totally exhausted. So, I do not want to say that the pure exhaustion is just for those of us with epilepsy. I DO want to say if I had to do it over again, I would work in time for more sleep and rest. I’d figure out a way to get more rest the next time around, because I do think I would have been in better shape all around had I taken a little better care of myself in this regard.
All that said (and I’m still exhausted by the way, just in a different way), Emma is the best thing that has ever happened to us. She was three and a half weeks early (so she was a preemie), but so far, she is healthy and doing fantastic!

Reach out for help

If you are thinking of getting pregnant or are already and struggling, please reach out. I had people help me (a BIG THANK YOU to Jess and Maureen) and I want to be there for somebody else and pay it forward. We are all in this together!


NEXT UP: Be sure to check out the next post by Leila at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

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