Sunday, October 15, 2017

Losing Myself in Order to Find Myself


      Over a year ago, I laid in my bed with my iPad, struggling to write a blog for all of my readers. Something that was once as easy as breathing, was the most difficult thing to do after my brain surgery in 2013. A surgery that took pieces of me that I still seek to find or somehow regain every day of my life. Here is what I had saved as a draft for all of you:

      “Hello, my beautiful Epilepsy Warriors. It feels like forever since I've spoken a single word to many of you. For that, I truly do apologize from the bottom of my heart. Life has been such a whirlwind these days. I will be 23 in April, finally back at work again, and attempting to figure out where I'm going in this life! A little lost at the moment, but I'm sure in time I will figure things out.

      Falling away from advocacy seems to be so easy when one is lucky enough to have stumbled upon successful treatment for the first time in their lives. For once, Epilepsy isn't their main issue. This is mainly what seems to have happened to me. Unlike before, I am not having 100+ seizures every day, and instead, one or two quite tiny ones a week. These seizures aren't big at all, and don't exactly fall under a specific type anymore. They last about 30 seconds max, occasionally coming in clusters for the entire day, and then they pass. For me, that is amazing! I could finally live without really having to think about this illness.
      However — ”

      ... And that’s where the blog had to be cut off. Where time seemed to have stopped as I  realized the truth about how I truly felt. Realizing how difficult it was for me to put both my feelings and my writing together. Pure frustration attempting to read and correct each sentence. The embarrassment of having to use Siri to read each sentence back to me in order to find my many spelling errors.
      I felt like a broken human. I suddenly began to hate my doctors and regret my choice of getting the brain surgery. Yes, my seizures were gone... but so was my life. A dear teacher and good friend of mine, Mrs. Mila one told me, “For every imperfection you have, God blesses you in return with a skill to make up for it. That is why you are the beautiful woman that you are.” I never believed her until I let the surgeon remove my imperfections, because I lost many of those beautiful skills for quite a while.

      Now, before this sounds like an entirely depressing and negative blog post, I want to reveal the upside to this story. Although it has taken me years to recover - involving constant medication changes, physical and mental therapy, and a daily life of trial and error - I would have to say that I have come quite far and developed bridges surpass the gaps that this surgery had left for me. And I realized that all is possible with persistence.

     I am now a Plasma Laboratory Technician for QualTex Laboratories, and it will be one year on the 18th of October. It is a full-time position that I pushed myself to gain and successfully follow-through with as it was something I could never do before the surgery, have all those seizures each day. So I do have to say that in that sense, I have come a very long way. It is a fast-paced job that requires multitasking, which seemed to be a weakness of mine for a while. But I do have to say, I think I’ve mastered it! I am now currently hoping to work with patients as a Patient Care Assistant, and considering finally finishing school.


     During my time working here, I had moved out from my home into an apartment with two of my best friends. I learned to pay my bills, use public transportation, and live life as a disabled human being. None of which was easy, but the lessons I learned in the process taught me so much about surviving on one’s own. So I no longer have a fear of the future and how I can take care of myself. I was careful with my spending and smart with my savings, but realized that after paying the bills - there wasn’t much left. So I decided to move back in with family to save up enough for living on my own again.

     Upon moving out, which was around October 2016, I also released news to loved ones and friends that wasn’t easy in any way. For years, I always questioned my sexuality. Even when I was with my previous partner that I often posted about, whom I loved dearly at the time. But after the brain surgery, for some reason I seemed to be more interested in dating women than men. I am still attracted to both, so I consider myself bisexual. Coming out itself was one of the hardest things I’ve ever had to do emotionally and spiritually. It’s against everything I was raised to believe, and broke the hearts of many that love me.


     The one thing that I have learned in the last few years is that in order to find yourself, you have to first lose yourself entirely. As difficult as it is, it’s something we all have to do. As hard as it has all been - from the illness prior to surgery, to the struggles of regaining stability after surgery, and dealing with the overall difficulties of life - it has made me the powerful woman that I am today. Each imperfection that we see is tied to a strength that we don’t see right away. So if you’re a post-brain surgery patient yourself, hang tight and you will see how intelligent and resourceful  the human brain really is. You will develop “short-cuts” and strengths that you never knew could exist! And if you’re still fighting those seizures, know that you are blessed with qualities to make up for what you see as imperfections. Don’t give up. It may take you 4 years like it has taken me, but you will return to your passion or find what your true passion really is.



Tuesday, September 2, 2014

Switch to Aptiom - Week #1

If you didn't know already from my last blog posts, my Epileptologist has finally let me switch to Aptium. Aptium is in the Trileptal (Oxcarbazepine) family of medication, and is considered a perfected form of this drug line. I promised to keep everyone updated for the 3 (possibly 4) week transition. 

My pharmacy was currently out of 800 and 600 MG pills, so I will be using 400 MG pills for these first 30 days. They are rather small and round. Non-coated, which I assumed I would hate. However easy to swallow, so I can't complain. No funky taste or smell. I will be on the MAXIMUM dosage, as this will be taking place of my main seizure medication. 

So far this week has been decent. I will say that I have had severe nausea in the mornings. I might blame this on the fact that I have had a Mirena IUD inserted this week as well. Therefore, I will wait until week #2 to discuss whether the Mirena is to blame or not. I have had one implanted before and never experienced nausea.

I seem to get a little dizzy/lightheaded after each dose. It takes a good half hour before I experience this. Thankfully, I take this at bed time. In the mornings I am good to go. This is aside from the nausea and diarrhea, of course. It has happened every morning this week. This is normal when switching any drug, so it isn't something that has surprised me.

One thing I definitely have noticed is anxiety. I know that Trileptol worked well with people who had anxiety, but I have not found any information that Aptium does the same. I had an anxiety attack in the car today and didn't want to hear any sound or be close to anyone. I felt stuck in the car and wanted to get out. Using my breathing techniques and closing my eyes got me through this, but it does worry me somewhat.

Most importantly of all, no seizure activity... Of course, it is the first week. So I am praying the second week doesn't include this activity. I will keep everyone updated, and if you have any questions feel free to ask! This is a very new medication that has just been released to the market not too long ago. So all info is important.

May you be seizure-FREE,

Friday, August 29, 2014

I nailed it! Oh, nevermind...

Went to sleep at 9:00 PM... Woke up at 10:45. So here I am, wide awake tonight, folks. My hair is a mess, my body is in pain and I couldn't sleep even if I was tired. My brain feels it is day time, so here I am. However, I will not be too negative about it as it is giving me some time to fill you all in on how I am doing as far as seizures, medications, and life in general. So here we go!!!

Seizures - Only had them this week that I had a cold. They were out of body for the most part, but it also did some sleep-walking ones. I have never sleep-walked in my life, and I had a nice bit tongue when I woke up. So yeah. But other than that they are well controlled for once.

Medication - Still praying that my Epileptologist will let me off of Onfi. It is a great drug, but definitely adds to my insomnia/over-sleeping issues that I need to find a way to control. I am wide awake at night, and then sleeping 12-14 hours a day. Onfi is a great drug, so don't take it wrong. My body simply can't handle it. Everyone is different.

I am being switched from Trileptol to a newer version of the Oxcarbazepine known as Aptiom. I believe I mentioned this drug before. If not, click here to learn more about it >>> this drug is a perfected version of Oxcarbazepine, and is known to have less side effects. It was released just this last year. My doctor feels I may be more successful and may control seizures completely! 

Other Health/Post Brain Surgery Issues - Due to surgery, my hormones have gone haywire. My Testosterone is higher then it should be and my female hormones are lower. I have hair growing places that I could never mention, and it grows so thick that I feel like a wolf. I had a Mirena inserted/implanted today (IUD) to attempt and help with periods. Periods for me come whenever they'd like to, but are never on time. And that is IF they feel like arriving at all. Two a month, one tiny one a week, cramps for two months and no-show... You name it and that's how TOM acts.

My reading is still difficult. Haven't started classes due to this. Not sure what to do with my life except being a writer, as I wish to do... I can read short text messages or e-mails. But if it is more than 3 lines, I have Siri do the work for me. The letters still switch things up and my blind spot gets in the way. Very difficult to deal with. 

Especially since I tried to work at a restaurant. My brain forgets numbers easily along with names... Didn't go well. However, I got a job at H-E-B Grocery where I used to work as a CSA. So happy as they work wonderfully with the disabled. I am very blessed!!! So happy to start in two weeks!!!

Interest in artwork and blogging has returned. It seemed to go away during my first two months of Prozac. I felt so distanced from my true self that you just wouldn't imagine. But I am feeling more like myself lately and I am even working on some hospital baskets again. It took a lot to get that far, but I made it!!!

That's all the new things I can think of for now. Nothing crazier has happened. Pray I don't jinx myself!!! God bless and sweet dreams!!! I'm off to go work on some art.


Monday, August 11, 2014

My Strongest Personality

EpilepsyBlogger is my strongest personality when weak. However, makes me feel weak as if I am standing inside of a costume of this strong girl who can handle it all. When truly, I am just as frustrated as each and every one of you. From changes in medications to struggles at home with the family. Deciding whether or not to buy something purple and show my full support, or to buy what I truly want that is my favorite color green. Constantly mentioning my illness, and wondering what a person thought inside. But somehow she holds it all together in her purple suit. And she's been on a long vacation for a while... Ignoring society and crying because of that. But she is back and ready to make a difference - no matter how afraid she may be. 

She misses and loves you all.