My name is Angela… and I am a strong and beautiful woman who happens to have Epilepsy

F51D6213-A08F-4FF6-8F07-40ED5A978C3AIf you are reading this, you probably either know me and are following my journey or you are researching and connecting with others who may share your story or the story of a loved one.  Either way, I’m glad to have you here.  I have been contemplating a blog for quite some time as a place to go to log my daily struggles with Epilepsy.  I spend a lot of time researching Epilepsy and reading forums and the stories of others who may be like me.  I often find that many people have questions that go unanswered or they just want to connect with people who truly understand what this life is like.  I have been living with Epilepsy for 32 years and I have a lot of stories to tell.  If I can help even one person through this blog then I will feel highly accomplished.  Plus – I am sure that my life connections who follow me on my normal social media channels are pretty sick and tired of all of my posts about medicines that don’t work, brain fog, cuts and bruises, and all the other struggles of an Epileptic.

So who am I?  My name is Angela and I live outside of Atlanta… Cumming, Georgia to be exact.  I am a wife, a mom, a dog lover, a student, a sister, a friend, a jokester, a crossword puzzle fanatic, and an ”Epileptic”.  Notice I didn’t mention that I’m a hard working career woman.  That’s because I have been on a medical leave of absence for 9 months after a really rough seizure made me step back and realize that if I didn’t step back and take care of me then I would sooner rather than later not live to be any of those things.  My entire life I have desperately tried to never let my E define who I was.  I wanted to pretend that it was just some random thing I dealt with from time to time like a sinus infection or a stomach ache.  I didn’t like to believe that it was a part of who I am.  At 39 years old (oh God… that’s so dangerously close to 40) I have finally accepted my fate and decided that while it is something that I will live with the rest of my life, I have to fully embrace it in order to take control of it.  I have Epilepsy, but it doesn’t have me.

I was diagnosed when I was 7 years old.  This was when I had my first Absence seizure, though I always knew it as a Petit Mal.  I had my first Generalized Tonic Clonic, or Grand Mal seizure, 2 years later.  We knew very little about epilepsy back then.  There were very few medications available and hardly any research done or published to truly understand what it was.  All I really knew was that I was different than other kids and I really hated it.  More on that in future posts.  I had seizures through my teenage years and through my very early twenties.  Ironically they stopped when I was 23 and I thought that I was finally done with all the BS.  After all, my neurologist did tell me that I would probably “grow out of it” like it was a pair of shoes or something.  Then my 30s hit and back came the seizures.  Only a little bit at first and I refused to see a doctor or take meds or even accept that my shoes did in fact still fit.  As the years have passed I have been having more seizures than ever before and it has become part of my daily life.  That’s where I am now.  I will definitely share more of my story, so if you are interested please follow along.  I look forward to sharing my past, present, and future with you all.  And please – feel free to share yours too!

“I’m not an epileptic but you’re an arsehole.  I’m important.  I matter. I can do anything.  I’m a sexy, strong woman that happens to have epilepsy.  Do you get it?  I have epilepy but it’s not who I am.”  – Ray Robinson, Electricity

Continue reading “My name is Angela… and I am a strong and beautiful woman who happens to have Epilepsy”

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Traditional Shinto Wedding

I will now share the last and likely one of the most touching parts of our first day in Japan. It was so unexpected and it really moved me. We ate some lunch and then took a train to our final destination of the day. We walked a street lined with shops, mostly aimed at tourists, but interesting nonetheless.

At the end of the street we approached Hachimangu Shrine. It is a beautiful view from the street, but even more stunning as you enter through the torii gates.

After we entered and purified our minds and bodies at the temizuya, we began to walk around. I realized that there was a wedding going on at the shrine! I walked over to observe, and it was so beautiful! We could not have planned a better day or time to go to this shrine! After reading more about traditional Japanese weddings, I learned that this was a Shinto wedding where only very close family are allowed. The bride wears a white kimono (hers was beautiful) and the groom a black kimono jacket. The bride and groom and seated while a Norito, or a prayer to the Gods, is read aloud announcing their marriage. The shrine maidens then perform a beautiful kaguramai, a sacred dance to the Gods, to make them happy and bless the families. The bride and groom then exchange nuptial cups which is a small, medium, and large size cup of sake. They then take their wedding vows. They leave the shrine the direction they came in and then the family gathers to share the sacred Sake to ensure strong family bonds. They then gather for family pictures and then leave for a larger reception with family and friends. The tradition was similar to American culture, yet it felt much more sacred. I was able to get a few photos.

After the wedding was over, we walked around and we partook in a few more traditions. We saw many more lovely kimonos and I got my fortune. At the shrine they also had barrels upon barrels of sake. We learned that on New Years they open them and distribute sake to the people in a huge celebration. It was a LOT of sake! We had a wonderful first day in Japan!

Japan: Our First Day Journey Continued

Picking up where I left off yesterday regarding our trip, after we left Great Buddha with some souvenirs and my Goshuin signed, we took a trek to our next temple. Next we went to Hasedera which is also in Kamakura. This temple dates back to 736 A.D. and like the others is just uniquely stunning. We weren’t allowed to take photos inside the temple, but there is a photo on the website. In the temple was what I liked to call “girl Buddha”. She is a wooden statue carved from a sacred tree and more commonly known as “Eleven-headed Kannon” as she has eleven heads atop her own. She is stunning. I made my wish to Kannon and then headed outside the temple where we had such a stunning view of Kamakura. Outside I got a pink candle symbolizing my daughter and made a wish for her success and happiness in life. At the bottom of the temple there are beautiful gardens and a koi pond with enormous koi swimming inside. Of course I had my Goshuin stamp and art of the temple here.

I have one more shrine visit that I would love to share but that will be a longer post and it was extra special! Some other highlights of our first day:

1.. Our first experiences with the Japan rail system. Seemed so confusing at first and admittedly we didn’t get used to them until about day 4. But even though they were generally PACKED, I have never seen cleaner and more efficient public transportation. It is the most common way that people get around yet it is NOTHING like anything I have seen in the states! This is my sister-in-law, Michelle, and Caty on the train when it wasn’t crowded yet.

2.. There are vending machines EVERYWHERE in Japan, and they are so cool! Legit, Damion could not pass one without stopping because the drinks were so good (and cheap) and they were just pretty fascinating to us. They served both hot and cold beverages and the engineering on them was kind of amazing. Of all the vending machines I only managed to get one crappy pic, but at least I’ll remember why I took it.

3.. There are NO public trash cans in Japan, yet the country is so clean! People just keep their trash until they get home or find a place they are SUPPOSED to dispose of it. The trash cans were all removed because of a terrorism attack and they were removed as a security precaution. What amazed me was that the Japanese are culturally loyal to their land and their country that throwing trash on the streets would be unheard of. In America we have trash cans everywhere, yet people still can’t seem to be respectful of public or even private property.

4.. I fell in love with Japanese toilets! First, there was not a single public toilet that I entered that was disgusting. Again… respect. But, while they were all slightly different with the bells and whistles, they all had bidets. Some had seat heaters. Some had automatic toilet cleaners. Some had noise cancelling features so that if you had to take a poo or fart then you could press a button to override the sound. They all had a female wash and a butt wash function. The water was nice and warm and you could change the pressure. Some had dryers to dry your parts when you were done. But all were FANTASTIC! I feel sad coming home to my plain toilet and using bland toilet paper. The one exception was the “hole in the ground toilet” which was so interesting and felt out of place that I had no choice but to have the experience.

5.. No seizures during the day one Day 1 which was a huge victory. I won’t end this good note talking about the end of the day and in my next post I will tell all about our next adventure of the day and the wonderful surprise we encountered!

World Traveler

I knew I had been neglecting my blog, but I really didn’t think it has been since August that I had shared a posting. I have kind of been in a bad place, and perhaps that is the time that it is most suitable to share, it is the time that I tend to bottle up and shut down. I really do have a lot of shares regarding life with Epilepsy from the last three months, but today I will share about most recent and close to perfect times. There may be multiple parts to this posting so that I can actually get it all in, but here’s what I’ve been up to!

I turn 40 in 18 days now (but who’s counting?) and there are so many things in life that I have never experienced. Many were because I was a single mom and I felt working ALL the time to support us was more important than life memories. Some was because I was scared with my epilepsy to take dangerous risks. Some being my own personal hang ups and anxieties (this one not so much pertaining to travels but more maintaining relationships). My personality is probably pretty hard for others to “get” sometimes because some things I have to have a VERY solid plan for… like meal plans and strict grocery lists, cleaning charts and financial plans… I have a list for virtually anything you could imagine and if the lists are not abided by I am quite likely to have a panic attack of sorts. However, big life decisions are best done spontaneously by me and somehow this helps curb my anxiety. For instance, I decided the week before we got married to just go to the courthouse and get it done quick and easy and ditch any kind of wedding. Buying our house – same. Any major life change has usually been a decision on the fly.

I generally talk to my brother via text what amounts to be a few hours out of every day. One day he made a brief comment about us visiting him in Japan and within an hour we had flights booked that he very generously bought us. I have never really been out of the country before unless you count crossing the border into Canada for an hour during our trip to Niagara Falls or our Bahamas cruise. Eight days in Japan was scary and a dream come true at the same time!!!

The flight was a bit rough, to say the least. We first flew Atlanta to Toronto. Two hours… no big deal! Had a 5 hour layover in Canada. Meh… rather just be on a plane and get there but I got a cute little magnet souvenir.

The flight from Toronto to Tokyo was like evil punishment! I think it was 12 or 13 hours, but with the time change difference and all the things it felt brutal. After we got off the plane, my whole body started to swell up like a balloon. I couldn’t get my shoes off or on and it all looked like if you put a needle in my skin it would just POP! It hurt so bad! I was so glad to be in Japan though!!!

We went out for Sushi the night we flew in. I LOVE sushi, but I have to say that American sushi and sushi in Japan is NOTHING alike! Sushi there is mostly just the raw fish and rice but it is sooooo fresh! Some may have multiple kinds of fish or some may be wrapped in seaweed but there’s not all the fattening fillers like in the US. Just delicious, fresh fish. More like sashimi. After we ate, we went back to Curtis’s house where we got some good rest before the next days adventures.

Saturday we spent the day in Yokohama/Kanagawa. We started the day at a restaurant having Japanese breakfast. What we discovered, which I suppose is a little strange, is that the Japanese really don’t much distinguish foods as “breakfast, lunch, or dinner”. Food is just food. I suppose that in American culture it is a little odd that we feel the need to eat certain foods only at certain times of the day.

After eating, we went to Kanagawa to see Great Buddha. This was the first temple we visited so we learned the proper and respectful cultural traditions for visiting the shrines and temples. I said a prayer and made a wish to Great Buddha and we had the opportunity to walk through the inside of the copper statue. I really can’t properly describe the experience. It was here that I also bought a book called a shuincho in Japanese. You can take this book with you as you visit temples and shrines and monks or others there will put a Goshuin stamp from the temple or shrine and put beautiful calligraphy art on the page. In my opinion, it’s better than most any souvenir you could bring home with you!

We visited one more shrine and one more temple that day and did some street shopping. I tried to be a trooper but it really did a number on me. I pushed WAY to hard and my body paid the price.

I do promise that I will come back and continue where I left off. It’s so much to document but it was such an amazing place that I have to share. Until then… Ki o tsukete!

Small Blessings

It seems that I went from posting once a day to being lucky if I fit one in a week. Let’s be real though… there’s only so much you can talk about before daily gets dull.

Today I actually want to share a bit of excitement. For those who don’t know, I’ve been on a medical leave of absence from work for one year and one month now. It has been really difficult for me to NOT go to work. I’ve work official jobs since I was 15 and it was completely out of necessity, but also out of sheer enjoyment. I worked long and hard hours and always had total dedication to the companies I worked for and the people I worked with. Not working was never an option. There were many times that I had health issues where I really had no business going to work, but I just never saw that as an option for so many reasons. My health got to a place that it was so bad, and situations with in my job were making it worse. I had to finally make the choice to take care of me.

At first I was having so many changes in my medications and so many struggles that I really didn’t think much about not being at work. Then I started finding myself really depressed. So much that I started taking medication to help with my depression. I had no desire to talk to anyone or see anyone, especially from work. Every time I thought I was going to be able to go back to work, there were more hindrances with my health and I just couldn’t. There is so more to say about my leave, but that’s not really the good news that I’m sharing today.

Also a different topic that takes a whole posting, but my husband hasn’t really worked in several years. This has caused some issues in our marriage and partly in our finances since to took my leave. I was still receiving 70% of my salary and we were living more frugally, but it was still rough in many ways. Recently, we have gotten a little brave and decided to try a few things.

On my end, after I had my surgery I began looking for alternate bands to wear with my VNS wrist magnet. No luck. I decided to make them and also see if there was a market out there to sell them. It took a bit of time and energy to build different prototypes that worked. I finally found a style that was a winner. I opened an Etsy shop, began selling on Amazon, and built a website. Trust me, I’m not making much money on these bands. My business is $142 in the hole right now because if “startup” costs. I make roughly $13 profit from every band I sell. I sell on average about 3 per week. But I get beyond excited every single time I get a notification that I sold a band! I get this sense of accomplishment that I haven’t felt in quite sometime. I have several ideas of how to better promote my small business when I am no longer in the negative. I really don’t think it will ever be something that I’ll make much money from at all. But it’s nice to have something that makes me feel good.

Click here to see some of my bands on Amazon.

Check out my Etsy shop here!

My business name is “Epilepsy Life” and Caty made a business logo for me. We are in the process of getting trademarks for both. She helps me make all the bands and it’s definitely something fun for us to do together!

In other news, Damion has been selling some of our cars to make money as well as to afford to buy Caty a car when she turned 16. We had a few that we had purchased that he has been working on fixing up that we always knew we would sell. He is REALLY passionate about working on cars and loves a good project. I convinced him to get his car dealer license so that he could go to auto auctions and buy cars for cheap and turn around and sell them for a profit. After much consideration and convincing from me, we finally decided to do it. There are a LOT of stipulations in GA when it comes to getting your license. I’ve been able to work through these things to overcome obstacles and we are working towards getting the business license. To get it you have to have a place to do business out of that has your visible business name outside of the building and a dedicated landline for the business. I found an office space for really cheap and also found a doctor’s office that is closing the office so I got office furniture for next to nothing $$.

“DC Motorsports”… a work in progress

It won’t be until mid or end September probably before we can finish all the things and get the license. It’s really exciting though and I am even more excited that he is really pumped up about something. He has been going through a serious bout of depression for several years. I love seeing him so energized about something.

A few cars we’ve turned recently

As with any business, it will be awhile before this business is lucrative. And hopefully it is. Either way, it’s exciting to see some good things happening despite the tough times among us. The nice thing about both of these small businesses is the flexibility. When bad days hit, it’s easy to just take a break and roll with it. I’m incredibly hopeful that things will work out. 💕

Epilepsy Mom

My kind, beautiful, and intelligent daughter just turned 16 last week. I’m not sure when I got old enough to be the mom of a 16 year old and I definitely don’t know how I got to be so lucky to wind up with that one. Caty and I are very close. I was a single mom until she was in middle school and we built such a strong bond together. Caty has always been very strong and independent but so kind to others. I feel blessed to call her my child.

She started a new high school last week. We bought a house in a different county last October but did not make her change schools during the school year. She doesn’t really deal well with change so I’ve been so thrilled with how she has taken to her new school. She had her first assignment for her AP Lit/Lang class which was to write an essay about something that happened in your life that changed you or made you realize something about yourself. She came home and thought about the paper for a few days and decided she wanted to write her paper about me.

Caty has been aware of my Epilepsy for years and she has experienced the aftermath of several seizures, but until last week she had never actually SEEN one of the tonic clonic seizures. She wrote her paper about that experience. Reading her paper made me feel proud of her, but also so sad that she has to feel some of the things she does because of me.

She felt that she had betrayed me by not being able to do more to help me. She felt that she has been selfish over time by not fully understanding the depth of what I endure. She felt scared because when it happened I stopped breathing and I turned purple. She had never realized that what we dealt with on the daily was something that could easily kill me. I don’t want her to have to feel scared or selfish or not good enough. I hate this stupid disorder for so many reasons, but when I see it impacting my beloved child I really despise it at a different level.

I anticipate sleeping the day away. I woke up at 6 this morning and went back to sleep at 8 after Caty left for school. I woke back up around 11:30 feeling horrible. My limbs have been jerking for the last 2 days and my headache hasn’t gone away. Today I feel drugged. I feel this way quite often a few days before a big seizure so I think I’m just going to let my body get as much rest as it wants.

I Do Solemnly Swear… That I Will Drink More Water

A follow up from my doctor’s visit on Friday… we increased the intensity of my VNS from 1.75 to 2.0 which also increased my magnet intensity to 2.5 and my heart rate sensor to 1.875. We also increased the frequency from every 5 minutes to every 3. Just like every time that we increase, it takes my body time to adjust. My throat gets sore, it’s difficult to eat and drink, it hurts to swallow, and my voice gets all funny every time it goes off. Those symptoms get better after about a week or so. I know the drill. We talked about this headache that just won’t stop. She prescribed a steroid pack to see if it helps. She said that they have found that many patients with extreme postictal struggles get over them faster with the use of those. I’m willing to try anything right now. I see her again in two weeks. If it hasn’t helped then we will schedule some testing to ensure these last seizures didn’t cause brain damage. She also recommended that if I have a major seizure before then that I should go to the ER. That generally isn’t needed unless the seizures last more than 5 minutes or due to severe bodily harm because there’s not really anything they can do there. But considering the situation, she said I should go so that they can take more immediate action. I really hope the steroids work. So far they’ve just given me heartburn and tummy aches.

This last week it has occurred to me that I am not drinking nearly enough water. And by not nearly enough, I mostly mean almost none. I’ve made the commitment to a minimum of 64 oz per day, though I know I really need more. It’s a good place to start. When I am used to drinking water all the time, I really do feel so much better. It flush my body out and I lose a lot of those extra pounds I pack on when drinking extra calories. When I try drinking water again it becomes a nuisance because I seem to want flavor out of the things I drink. I have a infused pitcher to keep in my fridge with sliced fruit. I ordered another this morning along with a water bottle and recipe book. I’m thinking it may help me get on board with drinking water again.

Fruit Infused Water Book

Individual Water Bottles

Fruit Infused Water Pitcher

I’m excited for them to arrive!

It’s awesome being a mom!

This week has been really busy as we “do life” and I’ve been trying hard to do that thing I’m not so good at and lean on others around me for support. It’s hard to remember (or want to) that I can’t do it all anymore. I am lucky that I have those in my life that I can lean on. This week has been a busy one but I’ve been trying hard to keep it as stress free as possible.

Recovering from these last seizures has been quite the challenge. I suffered some serious battle wounds on my body and I spent most of my week in severe pain. My body is still healing from the scars and bruises, but my biggest struggle right now is my memory loss. I am struggling hardcore with my short term memory and it is really frustrating. I have also had a migraine style headache since last Wednesday that just won’t go away. I go to my neurologist tomorrow so I will see if an MRI is necessary to ensure I didn’t do any severe damage this time around.

This week has also been centered around Caty’s 16th birthday. I have no idea when she got so grown up, but this day was pretty special. I wasn’t sure what we were going to end up doing about a car for her. A few weeks ago we had a talk with her about not getting a car right now because there were definitely things around that she could drive since I’m not driving. This caused a lot of tears on her part that she was trying to hold back and watching that was so hard. Damion and I had some chats and we started searching. Caty ended up with not ONE car, but TWO. We found her a car the weekend before her bday that was an adorable BMW 323i convertible. It was a manual but we didn’t think teaching her would be a problem. We brought it home and she was oh so grateful… but we could tell she didn’t love it. Last weekend we came across a Jeep Liberty that was super cute and Caty size. She has been wanting a Jeep for the last year. We ended up sorting some things around and ended up with that one for her. It was definitely a more exciting option for her. She adores the Jeep and it definitely made her bday spectacular. She looks really cute in it too.

Her birthday was Sunday. Kind of last minute I began thinking that she really should have some sort of party. On Saturday I began throwing something together for her. She deserved to be celebrated.

Today was her first day of her Junior year of High School at her brand new school. Of course she was incredibly nervous. I think that other than a small round of crying in the bathroom during lunch, she enjoyed her day. She was full of energy when she got home and talked about her day for hours. By next week she should be totally fine.

Tomorrow I will go have a visit at the neurologist office. I am going to consult about this influx of seizures I am having and will also increase my signals on my VNS from every 5 to every 3 minutes. I think I’ll keep the level the same. It always takes my body a bit to get used to it every time we adjust so I don’t really want my body to go in shock.

This last week I also wrapped up my summer classes. I had to delay exams because of all of the seizures and injuries. I ended up the semester with disappointing grades which I know was a result of me not being able to remember anything before and during my exams. I ended up with an A in legal studies and managing organizations, an A- in business analysis 😩and a B in Finance 😩😩😩. I am glad to have several weeks of rest before I begin taking some classes in the Fall. I’ll use this time to continue to rest and heal.

Be well all. You deserve it!