I am blogging tonight because I can’t release my thoughts while running. Let me rephrase that I don’t feel comfortable running alone to have the opportunity to release my thoughts, frustration, and anger. This week has been a rough one. Actually the last 2 weeks has been rough. It has been a long time since I’ve wiggled like this. It has been a long tim since I’ve felt nervous or anxious to be in public for the fear of having a seizure.
However I am appreciative for each day I am seizure free. I am appreciative for my family and definitely my husband. I’m sure he could use a good release because I know, well I don’t know, but I hear the fear in his voice recently as I’ve been shaking and baking. The feel of his hands as he rubs my legs to see if I respond during the last few seizures, or the tone is voice as he is telling me to breathe deep. Father’s day was yesterday and I can’t show or tell him how much he is appreciated because he would just say “oh stop it, are you sure” jokingly.
I am very appreciative of how much my kids watch out for me. I’m sure they worry as much as their father. Actually I know they do. My son who is about to go to college asked me “what are you going to do when I leave” well son I’m going to watch you spread your wings with a smile. I have been so blessed with everyone surrounding me during this journey. I just feel like this journey has been long too long.
What can be done to control or stop this shaking? I wish I knew the answer, but I’m almost lost for words considering the possibility of another surgery. The testing might be worse than the recovery it seems.
For now im just laying in bed thinking of how much I appreciate everyone!
It has been 2 months since my last post and my last seizure which is good . Monday was a day full of internal frustration. I am tired of being tired of feeling limited or feeling a certain way which is indescribable. Besides seizures running is my way of releasing my frustration. Having a seizure is not a positive way to release stress or frustration, but on many occasions after a good seizure my mind and body feel as though my body has shaken out my stress. For the 1st time in a long time I wanted and needed to run. Not run from my day, my current situation, but I needed a release. I needed a positive release.
As I am getting my stuff together such as my phone, seizure pills and water my son is getting my car keys as if he is going somewhere. I asked him where he was going. His answer: ” I’m going with you you can’t go alone.” At that moment feeling like a kid I made it very clear to him and my husband that I dont need a babysitter. I’m a grown woman with 2 children and a grandchild why do people feel the need to have someone go with me? During my last lap my body was feeling like it was time to leave. After an amazing run and positive release of emotions and pressure I get in my car which my son was driving and everything changed physically. The lights flashing as though I was in a club about to dance. The loud echoes that seemed as though I was in a long tunnel and the loud ringing in my ears that I could not handle. As I’m trying to get my pills out of my pocket my son knows what’s about to go down. Its me I’m about to go down. The flashing lights are not a sign of get down like I’m about to dance I mean go down like go down shaking.
With my son about to be 18 in a few days and his mom always having seizures he is what seems a professional. He makes sure Im able to have access to my pills, he asked where my nasal spray was just incase, and calls my husband to tell him we are on our way home to be outside to help him. What the hell! This is not right! This situation is just not right! It’s been 2 months since my last seizure this should not have happened. My dr added on a new medication and it was working. My main issue was this was not supposed to happen in the instance of my husband and son were right! With a deep sigh I guess I needed a babysitter that day.
My resistance is strong and may seem like a child about to get spanked holding onto the door jam because after my surgery a year ago and these damn seizures coming back even stronger, though a large decrease in frequency but duration is worse. I dont want to have another surgery which may be a necessary possibility. Thus the reason of the added medication.
Since I started having seizures I have faught and refused to allow this break dancing while laying down stop me from doing many things. Although while in the moment it’s fearful that has not changed I guess I’ll go back to walking for awhile then hit the track again in a week. Some people might say I’m allergic to exercise, but I’m allergic to throwing in the towel and giving up. I will fight this challenge and everyone that allows it to attempt to consume or define me. Almost everyone around me nods their head or just sighs because they don’t understand. They will only understand if they walk in my shoes. I’ve been called stubborn, a brat, and Jimmy Moreno. I am and I’ll admit I am all those things. Being stubborn at times is one of my best qualities. A brat will almost always get their way. I will get the life I want back nothing less, but more will come out of it! Well the Jimmy Moreno that was my father and that could mean many things.
As I am literally on a gurny in the ER. I am trying to get it together and keep it together. Is this just one of those dreams or is this really happening? Unfortunately this is really happening. What have I done for this fight. The realization of fighting an unseen opponent is frustration and anger. Today i felt a hit but couldn’t see who hit me! This is the reality of epilepsy, but it does not nor will it ever define me! In order to be a true warrior you must know your opponent. I refuse to backdown to you epilepsy, you will not get the best of me, and you will never consume me! Enough is enough!
It has been a while since I’ve laid things out on the table. I’m not talking about cards I’m talking purpose. In my last blogs I wrote about my seizures returning after the drs removing part of one of my lobes. It might sound nonchalant but that’s how I have gotten through these last 17 years. At times the path has felt as though I’ve walked through a tornado, flooding, quick sand, hail, and many feet of snow but one thing has carried me through this obstacle course it is Humor!
For the last 4-5 months I have been attending a support group for epilepsy. Everyone I have met has a story and what I got out of these meetings is so much more than support. I now have a better understanding of what everyone around me is feeling. People call us warriors those of us that live with epilepsy. I have met and heard the stories of parents, children, and spouses of epileptics that attend our meetings they are the true warriors. As I continue through this jouney the realization is I am not the only one fighting this beast. It is challenging many times to throw my pride aside and ask and allow my family to help. For the longest time until actually at this moment to ask and allow my kids to help. It should be the other way around.
However the demographics of my area lacks many things good medical care and other resources. The way my daughter drives it takes an hours to get to our support group. The way a normal person drives it would take them a good hour and a half. The path to my journey might be longer than anticipated but I truly believe my path is to help other adults like myself and be able to provide information that I have learned through this.
For instance surgery is not guaranteed to fix my brain it just somewhat improved the frequency of my seizures. It also brought out so many mixed emotions. Just as I thought I was cured the seizures came back so did more medication. The medication never went away just more was added along with more testing.
I think of it as this is my journey it is tough, it has been frustrating, and at times unbearable but all this is the walking path. I was told this last hospital visit I would never be seizure free but all I want is to wake up feeling great and being able to pay it forward. If I can help and provide the emotional and informative support that I have received then I am fulfilling my journey. In April my epilepsy support group will begin in my area. It is much needed here.
Everything happens for a reason smile through it good, bad, or indifferent keep smiling and just push forward. I guess it’s easy for me to say because this is my everyday struggle but if you are not living it don’t tell someone this you might not get a good reaction.
As I say this I will keep pushing through this next set of testing and possibly another surgery but I will never stop smiling, laughing, and pushing along this path.
As I lay in bed wide awake, in the dark because I can’t find my remote my mind is running faster than a race car. I don’t know why maybe because I know what is to be expected and the anticipation. July 30 was my 1st brain surgery thinking it would be my only. October 11th was my first seizure since surgery which was frustrating and scary at the same time. 21 days later on Nov 2nd I had a cluster seizure, and the 23rd another set of cluster seizures. The auras continue to roll daily in multiple sets. My medication has increased. I am now up to 5 different medications. That’s a strong cocktail of medicine. Back to the drawing board we go. More testing an MRI petscan, and in Feb it’s official shaking on purpose. Surgery again is inevitable. This time my brain will either have more removed, which if anyone talks crap about how small my brain is I can’t argue because it will be true, or the RNS will be placed at this moment there is a possibility it might be both. You should’ve seen the look on the resident’s face when I asked him if the RNS is placed inside my head can I go out in the rain. He looked at me with such disbelief it was funny. I knew the answer to that question but humor has gotten me this far I figure I’ve got to keep pushing.
For me that’s easy to say because I can deal with my emotions or try to anyway but those around me see things differently. My family sees and has to deal with me, poor them. Am I disappointed, definitely. Do I get frustrated, definitely. Am I angry for sure! These emotions fester a sense of feeling like I’ve lost myself. I at this time cannot work, drive, and must depend on everyone else including my kids. For me it is a sense of embarrassment.
How weird is it that running errands is nice because I get to see other people. Knowing that February is around the corner and the testing is going to be done again sucks. I looked at the last 17years as a journey one that I thought was over. I guess God has other plans although I wish I knew or at least he would give me a hint. I guess this journey will continue for the time being. I call it seizen for a reason!
Here I am 3 months since brain surgery and 2 and a half weeks since the first seizure after brain surgery. My emotions are flowing with frustration, at times sadness, but commonly anger. I guess going into the surgery I was very optimistic that this would be 100% over and the shake and bake would be gone. The auras continued after surgery and the fear and frustration of not knowing what to expect was fearful. At times I truly felt the seizures were almost easier because I knew what to expect when an aura appeared. After surgery it was uncertain until a few weeks ago. I must say on the upside I knew it was coming. For a week prior I felt it coming, it is almost like a volcano or earthquake the stress builds up. However my body doesn’t explode it just shakes out the stress to release the pressure. I’ve always embraced my seizures with humor so I think of my seizures as I shook out my stress.
Since my seizure I find myself what feels like to be almost my old situation along with the same emotions of frustration, anger, sadness, and uncertainty. Frustration because 60-70% seemed like good odds of living normal. Anger because I would like to not worry of carrying around my little pill box and to have 1 day without multiple auras hoping the aura doesn’t escalate. The sadness of wondering will this continue for the remainder of my life. The doctor said 6 months up to a year is normal. What is normal to them? This sure doesn’t feel normal to me! Especially since I lived my whole life what would be considered normal before the seizures.
At times I wonder what did I do wrong to deserve this but then I redirect what am I supposed to do with this? This challenge has my mind spinning in all kinds of directions. At this point I should think of this experience as things could always be worse and for whatever reason I was given this challenge for a reason. I need to bring attention to this unnoticed beast and really focus on what lies ahead and where I’m going from here.
What is truly frustrating is unless you are carrying this around with you , you don’t understand. Regardless of how hard you try. If you are the caretaker of someone with epilepsy imagine your head being squeezed in a vice, your body feeling heavy due to your medication or just because you didn’t wake up feeling well, experiencing your aura then the spinning as if you are drunk, the echoing in your ears, and the feeling of your body being heavy as if you are on a carnival ride. The ride that sucks you up against the wall. There is nothing fun about that.
Everyone deals with their situations differently. I don’t make fun of my situation, but I try to at least smile as much as I can about it. I saw something on social media that said: “With every hard road is a beautiful destination”. I’m hoping my destination includes a beautiful beach, hammock, and a breeze, or having the pleasure of sharing my story.
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!