Two weeks ago yesterday I was rolling into brain surgery. Last night I was trying to fall asleep and realized two weeks ago I was laying in ICU realizing I finally took the plunge having the part of my brain removed to becoming seizure free. My last seizure, or shall I say set of seizures was July 19th. It is after events like that I realized it was time. The day of my surgery my daughter had posted something about my surgery on social media. It is so amazing to see the outpour of support that I had received from people I didn’t even know. Many of them had questions pertaining to how epilepsy changed my life. One question was a great question and really got me thinking. I wasn’t sure how I would answer that one. The question was “did epilepsy change my marriage”? For so many years I hid my seizures from people I had known for many years. It wasn’t because I was embarrassed. It was more so because of the reaction I would get. It was more because I was self-conscious and anxious because of how people would react or lack of if I had a seizure in front of them. I always carried a little green pill box that carried my pills to stop a seizure. If that pill box was in my pocket, or on my workstation it was going to be a shake and bake kind of day. If my husband or kids saw the pill box in my pocket they would say “oh no maybe you should just stay home”. However if one of my kids had a game I wasn’t going to miss it because what if they did something amazing. I wasn’t going to let this stop me. I don’t think epilepsy changed my marriage but I do think it had an affect on my marriage. After seizures my husband would tell me “you make me nervous”, “I’m always worrying about you”. I’m sure anyone married to someone that has seizures feels the same. He would tell me he is always worrying if I was okay. That has to be a horrible feeling. I was afraid of being alone and having a seizure but he was worried if I was going to make it to work okay, or if I wasn’t feeling good if he would have to pick me up from work. That must be a horrible feeling. Just the unknown must be hard for him on top of regular everyday stress. At the time I was dealing with my seizures I was thankful he was there to pick me up both physically and more so emotionally. After my surgery I can say I’m so appreciative that he has been by my side and walked this long journey with me, and continues to motivate me during this fresh beginning. So the answer to this question is yes epilepsy has affected my marriage. It has given me such an appreciation for the man that has held my hand, rubbed my head, wiped my tears out of fear and frustration, tried to calm me down, and taken care of me before and after my break dancing while laying down. It has been such a long road, but finally I made it to the traffic signal that no longer has a red or yellow light. The only light on the signal that works is green!
It has been 7 days since my Brain surgery. I had a partial resection. The Dr removed a piece that was 1.5″ and I was told felt like rubber. As I sit here reflecting on that coin machine jawbreaking piece that took up space and created chaos. Let’s name that little brat Beavis. Beavis for the last 16 years was like a bad neighbor he threw parties at all times of the day. The music wasn’t good, however the house parties sure made me dance some better than others.
I am so mixed with emotions I don’t know where to begin. The best way to describe this blog was when I was small my beautiful aunt Georgia always had a smile on her face, she was always laughing, and always positive. If I would fall she would throw her arms out like an empire and loudly say :”safe” so I would be destracted. Threw this past 16 years my life has felt like one big fall until now because of all the emotions epilepsy has created, and that I allowed. But at this very moment I can hear my aunt and see her throwing out her arms “safe!!”
As my husband and I were watching tv tonight he asked how I felt. I tried to explain to him all the different emotions but I cannot pick just one, because I honestly I never thought this would ever be possible. I know my surgery was just 7 days ago, but I am very optimistic, blessed, and so thankful.
If I could use one analogy I would say for the last 16 years I have been confused on why me, I have been angry because it was me, and tried to be positive and strong for everyone else but me. As I write this trying not to cry at this moment I feel like I’ve been chained in water which is horrible because I can’t swim and the thick chains have been cut. I am finally free!!
For those reading this that know me thank you for walking this path with me.
The past 16 years have been a journey! In 8 hours I will be rolled into surgery! Finally this chapter will come to an end, and a great one will begin. My next chapter will be full of opportunities without limitations, and I will once again have my independence back without restrictions once I’m fully recovered! I say this with great optimism. With the best of the best working on me tomorrow I got this! With the support of my family and friends it feels like having a high voltage generator when the power goes out.
Many people have two masks I am one of those people. On the outside I will smile and give the persona that everything is great, even after a seizure of an avalanche. That mask is put on because I don’t allow others to know or see the side I had the perception of what I felt was weakness. However what I didnt realize until now was it’s just my reality. The second mask I didnt know I had until recently was how I deal with reality, I don’t ask for help because I want to be my own rock and how I cannot be in control of everything especially life. I can control my actions, my future, but I cannot control the cards I was dealt. However from this moment on I can and will control how I can use this experience to better myself and help others.
See this has been a stepping stone or a bump in my road. I can admit the stepping stone seemed a little out of my reach and a bump that seemed like a mountain. When this process is over in about 13 hours I will have reached the stepping stone and conquered that mountain! I can say this is the countdown to the end of this madness and a new healthy beginning.
After the last 16 years I have never been so ready. I was having a conversation with my mom a few weeks ago and she asked if I was scared. At that time I said “no” because I was so tired of feeling like my head was in a vice. Last week I felt nervous, and of all times I would’ve thought at this moment I would be more nervous or even scared. I don’t feel either for myself. I have all those emotions for my parents, husband, and especially my kids. I’m not looking forward to the pain I hear about, but again I feel very positive.
Good morning. As I lay in bed restless I can’t help but to think in 6 days I will be laying in a hospital bed recovering from my surgery. This last 16 almost 17 years have a been a crazy ride not just for me, but for everyone around me.
I am ready for this to be over! Friday was a physically draining afternoon. After taking a ride not on a rollercoaster but in an ambulance my brain was fried literally, and my body exhausted. Yet again breakthrough seizures. Yes that was plural. I can still hear the voice of my son telling me “it’s ok mom” and feeling his hands rubbing my hair as my brain and body were break dancing. Thinking of that is a not so great reminder of when he was little and I would feel his chubby little hands on my face saying those exact words “it’s okay mom”.
This whole time, especially now that my kids are older, feeling like I am the child, the roles have felt switched. Switched and unfair because they are taking care and worrying about me like a parent should be doing for them.
After waking up in the hospital all I could think of was to keep it together because THIS IS ALMOST OVER! For me keeping it together was for me not to break down and cry because the experiences are horrible, but to remind myself I can actually say “I got this”, and believe it is priceless.
The recovery of the surgery will be a long road. Am I afraid? No! Well not right now. The hardest part for me right now will be the recovery and following directions, getting rest, and most of all depending on others. I didn’t follow directions very well in school, after my back surgery, thus the reason I need another one. Even when I feel my worst I stay busy to distract myself from wanting to rest because I feel sleep is a waste of time and there is so much that needs to be done. Depending on others is and has been the hardest of this whole situation. I don’t like to ask for help because I feel like a burden. I don’t want anyone to feel obligated thus the reason I would rather do things myself.
Which reminds me of my appointment last week. I was told that the when i explain my loss of independence it is similar to the words in a song of a rock and an island. At the time I didn’t think so, but now thinking about it… I suppose it does. Many would love not working and get tired of driving. However work is my getaway. I say that because working with the public is challenging but I enjoy the social aspect because no two patients are the same. I miss socializing with people I don’t know. I miss driving because being in a car, listening to music, and sometimes thinking about who I am besides a mom and wife, and what I want to be when I grow up is my time. Sometimes I want to grab my keys just to sit in my car even in my driveway. That’s crazy I know I need a hobby.
Adapting to the seizure lifestyle at 23 was a challenge. However the thought of going back to my life before seizures sounds fabulous. Count down begins 6 days until this is almost over!
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.