Pursuing Your Dreams

“All our dreams can come true, if we have the courage to pursue them.” -Walt Disney

I have always been interested in having a small business of my own. I loved the idea of controlling my own business plan, having the ability to work from home or my own small shop if possible, and being able to set my own standards for the culture. Perhaps this was because my dad owned his own business and I got to help him out whenever I was with him that I had an interest. I never found a passion or the courage to jump that hurdle. I always knew I wanted a business where I could genuinely help others. I just didn’t know what that was.

I had read many motivational books and articles about entrepreneurship. I have worked in management positions for large corporations for the last 20 years. I had the skill set that I needed but I had no idea what I wanted to do.

I LOVE this book about how TOMS was founded!

Recently I took a Business Law class and it reminded me how interested I was in having a business of my own. I learned the ins and outs of the legal aspects of starting a business and it gave me the courage to explore this opportunity. I still had no idea what I wanted to do and I was constantly contemplating how I could follow my passion while helping others. I also found this to be important to consider because I’ve been out of work for the last year on a medical leave and my doctor doesn’t foresee me going back into that field of business until I can get control over my seizures.

“The Career Manifesto”… a great book about discovering your career path while doing things you love.

In April I had surgery to have a Vagus Nerve Stimulator (VNS) implanted that would one day HOPEFULLY help control my seizure activity. I was cautiously optimistic that this could be the beginning of a solution. With the VNS it is important that you keep a strong magnet handy to help manually control the device. It comes with two magnets… one that you can clip on and one that you can wear on your wrist. The wearable device comes with a plain black band that is pretty boring. I began looking online for different band options that I could change my band with. I came up with almost nothing. The ones that I did find were poorly made or I was not fond of the choices available.

The idea finally hit! I could make VNS bands for this market of people who were also looking for other options. I knew I couldn’t be the only one! Yes, this is a very limited market. No, I will not make much money (at all) on selling these bands. But it met my criteria… passion and helping others.

I began considering different options for the band and doing research on materials and ways to make them. I bought samples of many different items and built prototypes of different bands. I wore each one for a week at a time to see if they were durable, functional, and fit the design that I desired. After trying different prototypes I found the perfect design! I ordered a few other bands that I found online and discovered that the quality just wasn’t good and the bands were not as functional.

I have been working on a web site but until then I have begun selling on Amazon and Etsy. I got beyond excited when I made my first sale!!! I’m fully aware that I will barely make enough money on the bands to pay my power bill each month (if I’m lucky), but I enjoy doing it and it helps focus my energies on something positive.

Caty helps me make them. This also gives us time to spend together, which is so precious to me. I just feel happy that I’m following my dreams, even if it is on an incredibly small scale 😊.

Stop by my shop and check out my bands!

Meds and Side Effects

This has been my life for the last week. I feel exhausted. I go to bed. I toss and turn and think of the million reasons I just can’t sleep: I just can’t get comfortable; I can’t stop thinking about the many issues going on in my life; allllll the to-do lists; I continually look at the clock and calculate over and over how many hours of sleep I will get if I could only fall asleep just now; I develop this horrible fear that if I don’t go to sleep then I will inevitably have a seizure. The list goes on.

When I went to my neurologist last week to have my VNS turned up I talked to her about an increase in my seizures of late. Mostly my absence and myoclonic have increased pretty dramatically. We decided to increase one of my meds, Vimpat, to see if it would help. When I first started taking Vimpat a few months ago it was actually a big blessing to me. As we all know my seizures didn’t stop. BUT my side effects were so bad when I was taking the Zonegran that it just wasn’t an option for me anymore. I couldn’t function during the day AT ALL. Around noon everyday I would start feeling sick and exhausted and I would take a 3-4 hour nap. I was always weak. Everything I ate made my stomach hurt. We switched to Vimpat and I was just glad that my side effects weren’t THOSE so I wasn’t really concerned about any that I did have (except the excessive weight gain… that one was a bummer).

I don’t recall having insomnia when I first started taking it. I think that because I was finally staying awake all day that I was so tired at night that I slept regardless. This ever so slight increase has really jacked my sleep. No sleep = more seizures so I REALLY hope this settles out because otherwise increasing is counterproductive.

I know that my seizure increase has been triggered by incredibly high anxiety and stress levels. All this crap with my dad is stressing me out so much. Some days I’m ready to throw in the towel and say I just can’t do it anymore. Then I remember that he IS my dad and I have a responsibility. He was partially responsible for giving me life so I feel the obligation to protect his. I have to figure out a better balance because my health is important too. I preach this message to others constantly. It’s time I take my own advice.

Photosensitive Epilepsy

There have been a lot of stories in my news feeds over the last few days regarding the “Incredibles 2” movie and scenes causing seizures in those with photosensitive epilepsy. Disney issued a press release addressing it. I’m sure there will be lawsuits because there were no warnings. I’m sure there will be quite the backlash.

All of the press surrounding it has made me think about people’s perceptions of Epilepsy. I’ve seen it so much even in comments on these stories. I am truly glad that so many people who are ignorant to Epilepsy are able to be that way because they’ve never had to be otherwise. So many people only think of Epilepsy as convulsive seizures and many think that just because you have Epilepsy that strobe lights will make you have a seizure. A convulsive one at that.

The fact is that only around 3% of people with Epilepsy have photosensitive epilepsy. It is most common in children and adolescents and is way more prevalent in those who have my kind of Epilepsy… JME. (It is currently thought that about 1/1500 people have JME). It can be induced by many different kinds of flashing lights but it generally depends on the brightness and the frequency of the lights. Other factors, such as how tired you are, can also play into whether they actually cause a seizure.

Lights are rarely a trigger for me. However, I do find that when I am tired and watching TV in a dark room where the brightness of the TV is really intense and there’s something on the screen that is constantly flashing, I do begin to have some issues. Same with the movies. We recently went to see a 3D IMAX movie that had a lot of fast motion and I had to close my eyes through half of the movie.

For me, I have become aware of triggers through the years and while they are impossible to completely avoid it is easier to manage if you understand how to recognize when something is going to cause problems. For me, my eyes begin twitching and I begin getting a headache behind my eyes. I’m almost 40 though… not a child who doesn’t quite understand why these weird things happen. Some people get no warning at all. They just seize.

I likely will not go see this movie in the theater. I’m not sure that I would have anyway. I am glad that they have made the public more aware so that people can make more informed decisions. But for any out there worried about going to the movie and having someone have a seizure in the seat right next to you… the chances are pretty slim.

VNS 2 Month Anniversary

Three days from now will officially my mark 2 month anniversary of my VNS implant. That means I’ve had it turned on for 6 weeks and had it adjusted three times since. I have two big and not so beautiful keloid scars to remind me of this journey I’ve been on. I have this bizarre giant bruise on my chest that I hope isn’t permanent. And I have serious hope that this thing is going to work. A lot of people ask me how it’s working. I will have no idea for many more months because it’s not even remotely set to therapeutic levels yet. But I’m hanging on the the hope that one day I can celebrate being seizure free.

For anyone out there considering this surgery… or for anyone else wondering what this is like… here are my experiences so far broken down by the good and the bad.

The Good

• Healing time was considerably fast. The pain was manageable and the incisions closed fast. I mean… I did have my throat and my chest sliced open. Of course it sucked, but I really imagined that it would be worse.
• Outpatient surgery! I was in the hospital at 6 am and outta there 12 hours later. I really don’t dig hospitals so I was happy to have a short stay!
• People are always really fascinated to hear about this cool device in my body, and I’m always so excited to spread the word! I really wish I had known about this years ago and I think that there isn’t enough knowledge out there about it.
• You get special treatment through security lines. As soon as you tell them you have a magnet implanted in your body and show them your fancy medical card you get rushed through the line like a true VIP. They NEVER know exactly what it is that you have in there, but they know they don’t want to mess with it either way!
• I have something to believe in again… some kind of hope that things are going to get better. I haven’t had that kind of hope in a long time.

The Bad

• I scar easily and it’s not pretty. I could tell immediately that the incision on my neck was going to form a keloid. I could feel the tissue hardening as soon as the bandages came off. The one on my chest was looking really good at first and then it’s like it just stopped healing.
• Where the magnet is implanted in my chest I have begun getting this really intense bruise on my skin. At first I thought it was just part of the healing. Now I can not help but wonder if when I use my magnet over the device if the strength of the magnets together are causing this bruise. If so, I suppose I’ll just have it for life. My neurologist told me she had not ever really seen that happen to anyone, but I’m accustomed to being an anomaly.

• My VNS also has a heart rate sensor. Since your heart rate either dramatically increases or decreases during a seizure (depending on the type) then it automatically begins going off upon detection of a spike in heart rate. So this means that if you are exercising or doing anything causing a spike in your heart rate that it shoots the impulses and doesn’t really stop until you either manually stop it by holding your magnet over it or your heart rate goes down. Damion says he always knows when I’m mad because my voice starts changing a lot.
• As for the voice thing… it happens. It sort of sounds like talking through a fan when it goes off and your throat clenches up so you get short of breath when talking or doing anything. If I’m on the phone and talking to someone when it happens they’ll start to say “I can’t hear you… you’re breaking up”.
• It takes a LOT OF PATIENCE! This isn’t a miracle cure. It doesn’t work for everyone. After the surgery there’s a long way to go before getting the settings right and then it’s no guarantee you can come off of meds. You become besties with your doctors office if you weren’t already because you have to go in every two weeks for quite some time to get it adjusted. Every time it gets adjusted and gets stronger your throat hurts for days and it can be a little painful. You just have to be strong and be patient and know that it’s all for a good cause.

Even the “bad” isn’t actually so bad. Scarring and bruising? Yeah, that’s kind of been my life since I’ve been having the tonic clonic seizures so frequently. What’s a few more??? My dermatologist did give me a prescription for this badass gel, Recedo, to put on my scars. I just started using it this last week so we will see how it works!

The whole voice and breath thing… luckily for have learned how to use my magnet to my advantage. The wrist magnet can be swiped across your chest to make it send a signal if you need it to, like if you can sense a seizure onset or during a seizure a witness to the seizure can swipe it over to potentially stop or slow down the seizure. But… if you just hold the magnet there for an extended time it will temporarily turn your VNS off. I try to use mine accordingly so if I start running out of breath or if I’m talking to someone and it begins going off and becomes troublesome, I just use my wrist magnet to control it!

The wrist band that comes with the magnet is pretty boring so I started making my own. I then decided to open a little Etsy shop and sell on Amazon with the hope of helping others. I’ve sold a few bands so far. I’m not really making money on them but it makes me feel good to know I may make someone else happy with something simple. Caty and I make them in our own little workshop upstairs. It gives us our own special time together too.

These are the bands I am selling on Amazon. Lots of great prints and patterns! Makes wearing that chunky magnet more fun!

My Little Amazon Shop

Daddy Issues

I’ve sort of ghosted my blog for quite a few weeks. I’ve been trying to help my dad which has been an exhausting process. After spending several weeks of doctor’s appointments, court dates, logistical issues, and attempting to help get his life and home together I finally hit my point of too many triggers which have caused problems of my own. But today isn’t a post about me, but rather a post about when roles reverse and you must begin taking care of your parents. In this case it is about taking care of your parents as though they are small children.

I spent most of my childhood dismissive of my father. Sometimes you might even say that I held some hostility towards him. I’m not sure how fair that was since I didn’t really know him all that well. My parents divorced when I was less than a year old. I don’t remember a time when they were together and my first memories of my dad were probably when he married my stepmother when I was 6. Prior to this we never even had a “holiday dad”. My stepmother, Elena, was a wonderful woman with an enormous heart. After they married she made a strong effort to ensure that we spent time together. I’m not sure how much I truly appreciated all that went into loving someone else’s children unconditionally until I became a stepmom a few years ago.

There was quite a bit of “dad drama” that occurred long before I even remember having a dad. I’ll just say here that my brothers were old enough to remember and were completely scarred by the experiences. I’m actually glad that I can’t remember and I’m fully aware that because of my age at the time I did not experience the trauma of his actions even remotely in the way that my brothers did. I do recall spending my childhood feeling resentful of him based on hearsay. As many epiphanies do hit as we get older and have more experience in life, I also understand that there are at least three sides to every story and the truth is always isolated somewhere on its own. It’s possible that I felt resentment for things that didn’t actually happen the way I (never) remembered and it’s possible that I didn’t feel enough. I could tell the stories here but they honestly don’t even matter anymore.

After my Elena came in the picture we did actually begin seeing my dad a little more frequently. He officially became “holiday dad”. They lived a state away so it would definitely make sense that we wouldn’t see him more often but the times that we did were not exactly pleasant. He had a terrible temper and me being quite coy as a child I did everything I could to maintain as pleasant of an environment as I possibly could. He wasn’t exactly kind to my stepmom and I found myself feeling sorry for her that she had wound up in that situation. She certainly deserved better. He was definitely a very disconnected dad. He was hard working… there’s no question about that. But when it came to emotions he was truly incompetent.

I really tried to forget as much as I could. A few things I do remember… the time he took me to get a “haircut” at a barber shop that was located in some trailer and told them to cut off my beautiful long locks into what wasn’t even a cute “boy haircut”. I was ugly as sin after he did that but I wasn’t allowed to cry. There was the time that I had a seizure during the night and peed my pants and I was so ashamed and afraid to tell him (I had no idea that it was normal to pee yourself during a seizure at that time) that I hid my wet panties in my suitcase for 2 solid months. If you ever smelled old urine you can imagine what my suitcase smelled like when I had to pack my clothes back in it at the end of the summer. To say the least, my mother was beyond livid when I arrived home and found that I had been so afraid of him that I felt like that was the only choice. Some of the most appalling things would come out of his mouth. I don’t mean the standard curse words. I mean words of derogatory and discriminatory meanings that made my skin crawl every time they would exit his mouth. I truly grew to resent every moment that I spent with him.

I will fast forward many years as the in between isn’t really necessary right now. In 2010 my stepmother lost her life to a long battle with cancer. Because of his ability to emotionally disconnect, it would seem to the average eye that he was not at all bothered by her death. That’s not exactly true. Everyone has very different coping mechanisms. But sometimes he just doesn’t know the right things to say and do. For instance, when anyone passes away he does provide his condolences. He means well. But his words look like this: “I’m happy for him that he is dead. He no longer has to experience the world we live in” or “It was truly a blessing that she is dead.”  He just doesn’t understand that sometimes it’s just best to say “I’m sorry for your loss.”  Because he is able to emotionally disconnect and is very tactical he would have appeared to have very little care either way as to her passing. He became estranged from everyone who had been in “their” lives. This didn’t seem to bother him as he felt he did nothing wrong. I felt he was fine and self efficient. I was offered a job promotion in a Washington DC and I accepted it and moved away.

At first we spoke every day. I could tell by speaking to him that he was lonely. He decided to join a few dating sites to meet women. I thought this was amusing since he didn’t even know how to operate a computer. One day he told me he had a date and after this I didn’t hear from him for months. One day my phone rang and it was his number that appeared. I answered the phone, glad to finally hear from my dad. Except it wasn’t my dad on the other end. It was a woman who said she was his wife and she wanted to obtain financial information from me regarding my dad. What the serious F?!? I knew this woman was up to no good.

Basically, this woman took him for everything he had and then some and then got him arrested for “domestic violence”. He likely would not have gotten arrested but he made one of his stupid comments out of anger when the police arrived… “If she said I did it then you’re just going to believe her anyway so I guess I did.” The fact is that he was angry for justified reason, but never laid a hand on her. He wound up in jail for almost 9 months. I had no clue he was in jail. I just thought it was another long span that I didn’t hear from him and whenever I called his house nobody answered so I guess I have up. I don’t actually recall how I found out but I was completely devastated.

I moved back to Atlanta and at that time I found that my dad had met people while he was in jail and was of the mindset that not everyone who goes to jail are bad people. Not untrue. But his house turned into some place where ex-cons turned up for a place to stay and he gladly took them in. They would ask things of him and he would always oblige. “Can I borrow some money “Mr Rick?” (Never saw it again), “Can I use your car to go find a job Mr Rick?” ( car then stolen), ” Can you sign a bond on my friend who got arrested Mr Rick?” (Turned out to be meth addicts who would wind up in his home and would never appear in court. I’ve recently learned he has 9 Property Liens on his house). His house turned into the place where the county sheriff’s department sat and waited for criminals to emerge. It became the place they could go and take advantage of and steal every little bit of things that he had left.

I saw these things going on but every time I said anything to him he just got angry. I eventually stopped going to see him because it made me so sad.

Recently I started to spend more time with him again and while I suspected he was losing his mind, it has been completely confirmed to me. He would spend 5 days at my house and then forget he was even there. I’d talk to him on the phone the next day and he would say it’s been a long time since he has seen me. I think that the last 6 years has created so much stress and trauma in his life that it has brought on Early Onset Alzheimer’s or Dementia or both. I began the process of taking him to a neurologist close to me and trying to convince him to sell his house and be closer to me (he is currently around 60 miles away). The process has been exhausting between trying to take care of these liens on his house, trying to get people out of his house, clearing things out, etc. I’ve spent every second that I’ve had trying to get things taken care of.

Two days ago he called me and completely flipped out on me. Told me I was taking advantage of him and trying to steal things from him and take control over all his things so I could rob him. I am beyond hurt because of all of the things I have done for him. I have sacrificed my time and my health in order to help him have a better life. I am aware that this is part of this disease that the doctors have not yet pinpointed. I am aware that he is not in his right mind. But he thinks that his mind is perfectly fine. Regardless, it doesn’t make it hurt less.

I feel torn. Do I just let it go and refuse to help until he decides he wants to be helped? Do I continue to do what I can at a distance and allow the process to drag on? Do I take legal control regardless of his feelings and do what needs to be done while making him ridiculously angry? My heart feels broken right now and my efforts feel worthless.

***NO FANCY BANNERS OR PICS OR ANY OF THE THINGS THAT MAKE THIS BLOG LOOK MORE INTERESTING. I JUST DON’T HAVE IT IN ME***