16 Jun 2019

Epilepsy Blog Relay: A New Mom with Epilepsy

by | posted in: Family + Epilepsy, Jun 19 EBR Posts, Personal Epilepsy Stories, Pregnancy | 0

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Abby on becoming a new mom

My Prior to having my baby girl, Emma, I had many conversations with my neurologist.

After the baby arrives

I was shocked when he seemed more concerned about my health after the baby was born than during my pregnancy.  He was monitoring my levels very carefully during the entire pregnancy, but when I would meet with him, he would always ask me about my plan for after the baby came.

At that point, I really had not thought that far ahead.  Because my pregnancy was so incredibly difficult, I really was focused on just getting through each day.  Each time I visited the doctor, I would give my husband and my mom (the two people who know everything) an update.  There was always a recurring theme of every doctor’s visit.  What is the plan for after?  Are you getting a night nurse? Will you have help?  How will you ensure you are getting enough sleep?

Related: Epilepsy Blog Relay: Epilepsy and Pregnancy – what to expect

Finally, we made the decision as a family and came up with a plan for my mom to come stay for the first four weeks after Emma was born.  As the saying goes, nothing ever goes according to plan.  And, of course, this didn’t either.

Emma made her surprise arrival November 18, 2019, four and a half weeks early.  She was healthy and happy, but the hard work was about to begin.

Let the feedings commence

Because Emma was so early (and I was bottle feeding because I DID NOT want my medicine passed on to her for any longer than it needed to be), we had to feed her every two hours.  It was unbelievably hard, and there were no breaks.  As soon as we finished one feeding, it was time to start the process all over again.

Our story is not unique.  I think most people need help when they have a baby.  But, don’t be afraid to ask for it.  When you have a newborn at the house, it is especially difficult to sleep, but do not be afraid to take care of yourself too.  Having a seizure and being out of the game for two to three days is going to be way more difficult than taking that extra two to three hours for a nap while getting a little help from a family member or friend.

Thank you, Mom

Last, but not least, thank you to my mom.  Every single night for six weeks she was on duty for half the night, except for a couple nights here and there, where we called in even more help!

And best of all, we made it through the newborn stage seizure free!

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

14 Jun 2019

Epilepsy Blog Relay: The impact of an epilepsy diagnosis

by | posted in: Jun 19 EBR Posts, Personal Epilepsy Stories | 0

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Maxine’s Story

I was diagnosed with epilepsy when I was 14 years old. My seizures were tonic-clonic (grand mal) and I was having up to 2 seizures a month.

Because of my diagnosis, my life was changed forever. I missed all the great things that a young woman of my age should have enjoyed. A lot of this due to the sentiment toward people with epilepsy at the time.

I had my first baby at 21 years and was told that I could not bring up my baby and was not able to be a mother. All I wanted was to be a mother and have someone to love.

Stigma and an Epilepsy Diagnosis

I was then placed in Kingseat Hospital and told I was mad due to my epilepsy. I was very frustrated and angry, yes, as no one wanted to listen or hear me, but definitely not mad. At the time, one doctor told me that I should not be allowed to have children. He said, in his country I would have had my cords cut and tied whether I liked to or not.

I had my second baby in 1984, and I certainly had become older and wiser. But, I still have epilepsy so by children were educated about it as they grew up. Then, in 1993, my husband died in a drowning accident and I was left to bring up my children on my own.

I had no drivers license due to my epilepsy and so would need to hitchhike to work just to put food on the table. Then, In 1998, I had a serious accident where I burnt myself in boiling water due to have seizure. This caused 3rd degree burns to 50% of my body putting me in hospital for the next 6 months. Luckily my children and I had the great support of family and friends.
I lost my license many times due to having a seizure and that meant I lost my job. The list of how epilepsy has affected my life could go on and on.

Even still my attitude has always has been, where there is a will, there is a way.

Related: Participate in one of our surveys

 

I am now 64 and my life skills are enormous but I am still fighting to be considered for my valuable skills and experience for a position in the work place other then a support worker.
I have lived in poverty all my life due to my disability and have to say I am used to it but now I am reaching retirement age I am finding it very scary. I work in domestic violence now and although I like my job I can only seem to get the lowest paid. Yet, I have not had a seizure since 2004.

Over the years I have worked so hard to make up for the lost moments. I am now full time working but still looking for that special job that I may be able to give back to my community.

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

13 Jun 2019

Epilepsy Blog Relay: A reminder that we need to stay strong

by | posted in: Jun 19 EBR Posts, Personal Epilepsy Stories | 0

This post is part of the Epilepsy Blog Relay™. Follow along all month!

After 40 years of living with epilepsy Peter reminds us that we need to stay strong and not be afraid to tell others about our disease.

Peter’s Story

Hello my name is Peter and I’ve had epilepsy since the age of 14 years old. I am now 54 years old I’ve been living with epilepsy practically, my whole life.

I want to encourage all the people who have epilepsy be strong don’t be afraid to tell others that you have epilepsy. I’ve worked in construction and as a butcher, and now I’m working as a cook.

We who have epilepsy are just as normal as the next person. To all who have epilepsy: remember you are strong. Thank you for listening to me.

Related: Participate in one of our surveys

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

11 Jun 2019

Epilepsy Blog Relay: Tips for Your Next Epilepsy Monitoring Unit (EMU) Stay

by | posted in: Jun 19 EBR Posts, Personal Epilepsy Stories | 0

This post is part of the Epilepsy Blog Relay™. Follow along all month!

I kicked off 2019 with an 8-day stay in the University of Virginia’s epilepsy monitoring unit (EMU) in hopes of capturing a few seizures on a video EEG. The EMU stay is part of the evaluation I’m going through to see if I’m an epilepsy surgical candidate.

When the EMU stay was first discussed at my doctor’s appointment, I wondered how I could fit it into my schedule with work, etc. Also, the biggest question I had when it was scheduled: How will I keep myself busy for 8 days in the hospital?

No seriously, how will I keep myself busy for 8 days in the hospital?

I talked with some friends who had done EMU stays and they offered great advice.

  • Bring a good blanket and your own pillows.
  • Don’t forget some comfy slippers.
  • Find shows to binge watch.
  • Only pack button down shirts since the EEG leads get in the way.

Their tips were great and helped make the stay feel as homey as possible for my fiancé and me. During the stay, I kept a journal to keep track of my tips, here are some:

  • Make a snack drawer with your favorites treats.
  • A 1000-piece puzzle, books, and a few games kept us busy.
  • If you’re there for awhile, ask if the hospital has laundry services.
  • Keep a journal, since it may be tough to remember discussions with the doctors.
  • If you don’t have a rescue medication, make sure to have the doctor prescribe one before you leave.

The hardest parts

There were two hard parts for me. The first was when my fall risk increased once I was off my medicines, since I started as a level 1, which meant I could move around on my own. Once my meds were off, I was primarily stuck in bed and needed my fiancé’s help with everything.

The second was how I felt off my medicines. I didn’t know what to expect, since I’ve been on meds in some form since 2006. As I tapered of them, I experienced side effects and when I was complete off them my brain felt like mush, I didn’t feel like myself. After I was back on my medicines, I was super lethargic for about a week. Be patient with yourself as it does take some time to bounce back and feel like yourself again.

The best part!

One last piece of advice, ask the nurses if the hospital has volunteer dogs that can come to the room. I know the surprise visit I had from Wali, a golden retriever and one of UVA’s volunteer dogs, really lifted my spirits. And don’t worry, the glue will come out of your hair, it just takes a few washes!

NEXT UP: Be sure to check out the next post by Abby 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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