It’s a beautiful day in southern California. It’s a warm day, and there is a bit of anxiousness amongst everyone, especially since lately I haven’t been the only thing shaking around here. We have had some pretty good shakes within these grounds. By that I mean earthquakes. Right now I am sitting under a tree at the park enjoying the breeze through my hair. As I think about it these small things are taken for granite. When I say this or write this I am writting this with the anticipation of what is to come within this month.
The last 16 almost 17 years have been a rollercoaster. Adjusting to a new lifestyle of a newly experience of seizures, the anxiety, the embarrassment, sometimes the anti socialism. After 4 times of surgery testings there seems to be a light at the end of this long tunnel. Finally I feel a sense of hope. It is a weird feeling. In the beginning the adjustment was very hard because of the loss of independence. I finally have a surgery date and the thought of being seizure free seems weird to me. The thought of gaining full independence back is great!
The reason for this blog is I am mentally preparing myself for the event to come. As I sit here enjoying the breeze I’m trying to imagine what it is going to feel like if I was to sit in this same exact spot in a month. I wont have all my hair for the breeze to go through, and physically I will have many limitations, but just temporarily. After this last month I will take those limitations over the way I have been feeling. For the many people that know me I have always said “I got this” so at this time I will continue to do so. I might not have this, but I know God does. We are only handed what we can handle, so if the alpha, omega, and my higher power feels I can handle this then that is what I will do.
I now know there are so many resources available. Last month I attended an epilepsy support group with my daughter. The group is mainly for family members. I attended with my daughter because there are many times I’m sure she feels more like the parent. I know my daughter enjoyed it. Listening to family members that are caretakers of family members with epilepsy I now understand the what my family goes through. I thought I had it rough the worry they feel is rough too.
On July 28th we will be on our way home from a basketball tournament. On July 30th I will be in surgery. As long as the sense of normalcy for my son is present then that’s all that matters to me. As the time approaches I’m sure my feelings will vary. Today I feel the positivity of my surgery. I am sure the closer it gets my feelings might change. As the time approaches I will continue to post.
So May 13th I met with my neuro surgeon. At this time I am not a good candidate for the RNS. I was told because of the size of the lesion it will not fully control my seizures, a resection is the best option. For those questioning what a resection is well I will have a good portion of my right occipital lobe removed,( I might lose a few pounds), but I know there are better ways. It may sound scary or maybe for some people there may be hesitation. However I have a 70% chance of being seizure free! What?!?! I know right, I forgot what that would feel like. My mom is nervous, like any mom would be. We were talking the other day about her concerns, and I was telling her how I felt. Presently I don’t feel scared, because I am tired of feeling anxious when in public, the before and after affects of the seizures itself, and tired of having to worry where I can put my pills when I go to the gym. Let me tell you when they are in extreme heat they turn to powder, I’ve learned the hard way. Most of all I’m angry that I can’t be independent. At this moment I’m not even nervous. Does that sound crazy? It probably does. The only thing I’m truly nervous about is after all this how will my family feel? My husband, daughter, and my son especially are who I worry about. The only part of recovery I’m afraid of is so vein, being bald. Another thing is being my stubborn self, and it’s not wanting to follow directions, but literally not knowing how to put myself first and take care of me. I have been fighting epilepsy since 2002. It’s no where near fighting other diseases like cancer. However for many years although I battled, I played the part that I was fine. Many times I still continue to do so, but this time God is showing me who is boss. This time it sure isn’t me! I was in church on Sunday and the paster said something that caught my attention. He said “We are not meant to know the future, because we would fear the future.” Yep so true. If I knew say 20 years ago I would be writing this blog and the reason for it, you better believe I would fear it. Now that I am living it, it may sound weird but I can’t imagine or remember what it was like any other way. Although I’ve been angry along with many other emotions I have learned to accept it, because I can’t change it. I just want to be able to use my experience to help others get through what I have been and continue to go through.
In April I completed phase 2 of testing for epilepsy surgery. The beginning of this month I received the results. There has been some changes from this most recent testing to the past testing over the last 6 years. Instead of the option of the RNS implant the surgical team feels a resection of the part of the brain is a more efficient option. I was told the RNS will help control the seizures, but with the resection there is a high percentage that I can be seizure free! I never thought I would hear those words. Recently there was a 2 week period that my seizures caused me to shake like an earthquake with aftershocks. I know it’s never a good idea to google what I am about to endure during this surgery, but I did. I am curious and want to know somewhat what I should expect. Although watching some of the videos, and listening to some patients and doctors, I feel a little more at ease. I know that sounds crazy, especially since it’s the motor of my body. What brings me ease is knowing that I have amazing doctors, a strong, large, and great support system. I know there are always pros and cons to everything in life, but knowing that I could actually be seizure free, and that I will feel comfortable in my own skin again brings more comfort than I can describe. The area that will be resected is my right occipital lobe which will effect the vision on my left side. I already have some peripheral vision loss on that side anyway.
Am I nervous? Definitely! I would be lying if I said I wasn’t, but I am hopeful, trying to be optimistic, and reiterate to myself “I got this”!
The next and most important step is to make sure I am physically, and most importantly mentally prepared and healthy. From this point on I will be focused on getting prepared, because I’m sure this will be my marathon.
I am not sure what to label myself! Am I stubborn, definitely. Am I persistent, sometimes. For instance today started out a little rough. I woke up and did everything I would normally do on a Saturday, cook breakfast, make coffee. Except this morning was a little different, because I felt different. My son had 2 basketball games this afternoon and I would make sure I don’t miss them. Actually I would be damned if I would miss them. It is around 930 I start to get ready for the day. I begin to feel swollen, heavy, and start to see strobe light flashes of light everywhere. I take one of my pills to help make the aura stop. After a few minutes I go in my sons room to be with someone because I know any minute I’m about to start flopping like a fish out of water. He gives me another pill because the first did not touch my aura and I know will not touch what is about to happen next. As I am beginning to spiral all I can think about is the reaction I will get after the shaking stops. As I am coming out of this episode both my husband and my son are telling me, not asking me, but telling me I will be staying with my parents and cannot go to my sons games. I know they worry, but I’m a big girl and WILL make my own decision whether I go or not. I tried to pull myself together real quick. If you suffer from seizures you know that is not easy. This was a rough morning, but I refuse to allow this episode make me miss my son’s games. Yes I went. Was my head killing me? Absolutely. At this very moment I still feel like my head is in a vice. I guess my point to this story is I am so tired of allowing epilepsy ruin my day, or determine my life. After this morning I am more eager and look forward to trying the RNS because #epilepsysucks!!
It has been a while since I have posted anything. My everyday life is consuming me from the way my brain feels, to a sense of feeling like I am drifting without a purpose. I know everyone has a purpose, but I am not able to be “me”. The “me” that loves to be around people, go different places, and try new things. I am not able to be “me” because I am literally nervous to be in public, nervous to think I can have a seizure with the possibility I might not realize it’s coming. For the last month or so I have began feeling orher auras, what I thought were auras. I began to feel tingling in my face, heaviness in my body, feeling like my adrenaline is rushing, and echos as if I am in a tunnel. I emailed my Dr, who is absolutely awsome by the way. She said by the description it seems like I had a sensory seizure. I don’t know what that is, but thank goodness for google. A sensory seizure is a seizure coming from a different part of the brain than my normal seizures do. This to me is a little worrisome, because I am in phase 2 for the RNS surgery. Can I just say phase 2, the cognitive thinking evaluation that literally lasted 7hrs is exhausting! I think my brain might have caught fire a few times. When I go back in a few weeks for the results and meet with the surgeon all of these episodes will also determine where the stimulators need to be places. With all of these new symptoms coming to the surface I am feeling a little more anxious about this process. I know this is my only option right now, and I am praying it works, because after reading my last MRI report my brain is angry at me.
The reason i named this post #epilepsystruggles is because everything that comes along with epilepsy is a struggle! Trying to balance work, family, and your own sanity at this point seems non existent. Right now at this very moment I thing applying for the position of the clown riding the unicycle while juggling in the circus seems more simple. I am not able to work or drive, so I am literally at home all day, and I feel more pressure and stress than I did working and commuting. It probably sounds crazy that I would rather be in traffic after working a full busy day, but that is “me”. I need to be busy. I thrive off a crazy hectic work day dealing with cranky patients. My struggle at the moment is accepting my current situation. My struggle is accepting my loss of independence. The biggest, and worst part, is my struggle to have to rely on others for help!
As I am writting this at this very moment my struggle is knowing I have been in denial this entire time. I am always trying to be positive for everyone around me, and make sure they are ok. Yet I do not take care of myself, both physically and mentally. Personally I think taking care of myself physically will be easier than mentally. I am one that will put my feelings aside and go about my day until I shake it out, literally. It might sound like a negative way to let out stress, but if I am extremely stressed out It does cause seizures. After having a seizure I feel relieved as if I shook out all my stress.
March was a rough month mentally and emotionally for me. The unexpected loss of my friend, and a week later the loss of my father had me in a rut. This month when I met with a few members of my surgical team I realized I am not just trying to deal with the loss of life around me, but most importantly I need to focus on the life ahead of me. I need to climb the mountain of things I am not able to do, so I can appreciate and conquer the many things I will be able to. #epilepsystruggles.
No one, not even myself knows what tomorrow, next week, month or even today holds. What I do know is the anticipation, anxiousness, and eagerness to get rid of an oncoming seizure. The mental, emotional, and physical feeling of a seizure is undiscribably draining. Mentally nervous to go in public or not wanting to be alone. I fear the embarrassment of being in public, and fear of seizing alone. The anxiety right before a seizure seems almost unbearable. The physical pain of my entire body is something indescribable. What I can tell you is I am entering phase 2 of my testing for RNS surgery, and although knowing my skull will be sawed open, the thought of not having the loud ringing in my ears, the echoes of everything around, the tingling in my face, racing of my heart, spinning and heaviness of my body before the house party in my brain begins will NOT be missed. I forgot to mention the feeling of my head being squeezed by a vice that follows. I think when people know someone is epileptic they assume it’s “just” the seizures that are hard to go through. There are so many other things that go with it. I personally think the shaking of the seizure is the easy part, it’s the baking ( before and after) that’s the worst. It’s the constant self consciousness, and feeling unsociable depending on whether your brain is about to rock and roll. If the RNS will alleviate the shaking and baking then the future holds good vibes. I want to keep pushing the testing forward, so I can keep moving forward. 💜
Good morning everybody, as I’ve spoken about before my breakthrough seizures began in October. The seizures just kept coming, and each time they were different, even my auras were different. After my seizures my body felt different, my taste buds were almost nonexistent ( which is horrible because I LOVE food), and I was off balance for days. I had never considered medicinal marijuana, however my husband was doing his research, he came across a company that has all natural cbd products. I was a little hesitant, actually very hesitant. I expressed to him feeling high all the time was not an option for me. He knew I would say that, so he found a company that made natural cbd oil without thc. Everyone that knows me,knows how stubborn I can be. (I’m pretty sure for them it’s not my best quality.) At the time I was tired of feeling nasty, (more like dog poop), so I figured I would try it. I mean #at this point what did I have to lose? When it came in the mail I was still hesitant. I started with koi natural 500mg. I took it at night, and it helped me sleep without auras waking me up throughout the night. During the day my auras were still continuing, so I started taking it twice a day. I increased the amount I was taking to help stop the auras, but the auras continued just not as frequent. The company I purchase my koi natural cbd is called #Green Wellness. When I called them to order more she, and I mean one of the owners recommended 1000mg. I didn’t realize how much the cbd helped until I ran out. My brain was again feeling nasty. I was just waiting to drop like a fly, because I had felt like I had not taken my medication eventhough I had. #At this point I am game to try anything that will help me get through the day. The reason I mention #Green Wellness is because my husband told me the story behind the company. One of the owners has a child that is epileptic, and she created the products for her child. As a parent she did not let epilepsy stop her, she allowed it to motivate her. Now she is able to help her child, myself, and others attempt to maintain a somewhat normal daily lifestyle. I personally feel like being epileptic regardless will make everyday lifestyle different. Well let me rephrase that: epilepsy affects my everyday lifestyle if I allow it to!
Happy Saturday everyone, happy for almost everyone. I just got some devastating and unexpected new. My friend Elaine Garcia passed away 2 days ago. She didn’t have epilepsy, she passed away from having not 1, but 2 massive heart attacks. It is losing my friend that has brought me to writing today’s blog. Regardless of whether you are epileptic, diabetic, have cancer, or any other disorder or disease. Life is too short! I have read many blogs about epilepsy, and many people with this disorder also suffer from depression. Some people have even admitted to be suicidal. For those that feel those dark and empty thoughts speak to someone, anyone. I won’t deny I sometimes don’t feel like myself, but I am very thankful I have family and friends to help get me through those times. Life is too short to let time pass us by. Don’t let epilepsy, and everything that goes with it win! Hopefully some of you reading this are USC fans let’s ” Fight on”
I know it’s been a while since I’ve written anything, but to be honest I was a little nervous about #putting everything on the table. By that I mean everything. I’m not talking about 50 Shades of Grey Everything. I’m talking about how I really feel about epilepsy everything. Lately, I’m not going to deny I’ve been doing a lot of self reflection, and how I feel about my situation. I have been reading the blogs of others that go through what I do. Many people have had it much worse than I have. Many people have lived with epilepsy since they were children, yet I feel self-conscious. When I first started having seizures I was nervous about going out in public. In October my breakthrough seizures began again. I was at my son’s school for a parent function. I told my mom I needed air. My mom and I went outside. I remember hearing my husband’s voice, and after that I just remember waking up at home, needing to take a shower, because my entire body was sore. At that moment I knew it was a good one. I don’t want to offend anyone, but I deal with my situation with humor. I guess you could say #I laugh my way through this. My brain embarrassed me again during one of my son’s basketball games. This time my aura was different, so I wasn’t sure if I needed to lay down or talk myself through it. Now I find myself feeling as I did when my seizures first started, self-conscious, embarrassed, and afraid. Self-conscious because I don’t feel like myself. I am unable to drive (loss of independence), and financially contribute at the moment. Embarrassed to go in public, even though I am always with someone. I think it is just the thought of being in public and not knowing where I will wake up, meaning the same place I dropped, or in the ER. I am afraid to be alone because having a seizure by myself has always been my biggest fear.
After reading how others have dealt with their situation’s, and how they feel on a daily basis, it has brought me some comfort. Don’t get me wrong, my husband, kids, parents, and only a few friends know what I have gone through are very supportive. In the beginning and somewhat now asking for something like a ride to go somewhere seems like an inconvenience. My mom takes my son everyday to school, and picks him up, thank God she lives close. My daughter takes me to the store, which it should be the other way around. It’s the small things that I took for granted. Since I’m not working my husband is so exhausted because he is working his a$$ off. I just want to go back to being ME. Only a hand full of my friends know my real struggle, and that struggle is real. Some times I guess you could say I’m somewhat anti social, especially when I don’t feel good. If it wasn’t for my husband making weekend plans I/we might be sitting on the couch eating bon-bons. ( some of you might be too young to remember those). All of my friends see me smiling and laughing. Only 2-3 see me sitting in a hospital bed with wires glued to my head, or shaking like I’m dancing laying down. I guess you can say that is one of my secrets.
For those of you that know what it feels like, you are not alone. For the people that support and continue to take care of us dealing with this disorder, we are very thankful. With the community of this site, and our blogs we can continue to help each other through this “We got this”!