Showing posts with label Epilepsy. Show all posts
Showing posts with label Epilepsy. Show all posts

Sunday, October 15, 2017

Losing Myself in Order to Find Myself

   
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      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.

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     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.


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     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.

    Sincerely,
EpilepsyBlogger

   


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 >>> http://www.Aptiom.com 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.

Love,
EpilepsyBlogger


Monday, June 30, 2014

Bipolar Thanks to Brain Surgery


I've been on Prozac since I last blogged. So far the medication has lessened my panic attacks and anxiety... along with the help of roughly 14 days of 1 MG Xanax a month. I'm somewhat upset to see my brain and personality falling apart this way through recovery. My Onfi has been taken up a dose due to auras hitting for the past few days. My Epileptologist has is also considering changing my Triletal (Oxcarbazepine) to it's new edited form called Aptiom (Eslicarbazepine). Learn more about this drug HERE: http://www.medpagetoday.com/Neurology/Seizures/42820 

Aptiom is a perfected form of Trileptal and has fewer side effects. Reports show that is works better than the original drug. I am still waiting to decide whether I want to switch to this drug. It is basically the same drug, with minor changes. However, I have trusted Trileptal for years. I will be making my decision in the next 3 weeks, as an aura has come back. 

It isn't as beautiful, large or detailed as my old auras. It is simple a chunk in my upper left quadrant that appears in the same area. It is rather large, and I see it several times a day. No seizures following yet. However, the doctor is worried that areas of brain needing to be removed may have been missed, or that another medication needs to be added for control. 

As far as good news... I've finally touched a canvas. First time painting in at least 6 months... But I think it's been far longer than that. Using my Grandpa Popsi's old brushes and just painting what I feel. Tears are coming out like you wouldn't believe... But oddly there's a joy of feeling the canvas again. 

God bless,
EpilepsyBlogger

Wednesday, March 5, 2014

I'm Tired of Epilepsy


I'm tired.

I'm tired of not being able to read since brain surgery.

I'm tired of working so hard to repair my brain from the surgery.

I'm tired of being the world's worst "Epilepsy Blogger" due to how little I can provide for fans.

I'm tired of feeling that I do nothing all day long.

I'm tired of my doctors constantly giving me medication.

I'm tired of thinking this, and then beating myself up because I know they're only trying to help.

I'm tired of the money my poor family has to pay to purchase my endless medications.

I'm tired of what these medications do to me.

I'm tired of wondering what they do to my kidney and liver.

I'm tired of wondering when I am going to die.

I am tired of wondering if it will be a seizure's fault.

I'm tired of falling apart without these medications.

I'm tired of gaining weight when I take these medications.

I'm tired of jogging daily, and never seeing a pound drop.

I'm tired of never feeling beautiful on these medications.

I'm tired of the endless list of side effects of these medications.

I'm tired of worrying about what these medications will do to the children I hopefully live to have.

I'm tired of thinking that I shouldn't even try to have children with all of these medications.

I'm tired of the thought of seizures taking over without these medications.

I'm tired of the thought that panic attacks will kill me without these medications.

I'm just... tired of epilepsy. I don't know how to do this anymore. I always wonder if I would be happier without my medications. I dream of how much healthier my body would be. I don't even know if I would really mind seizures anymore. I just want my life back.


Goodnight.
EpilepsyBlogger

Thursday, February 13, 2014

Panic Attacks


Just had a Panic Attack this morning. My Psych, Dr. Velez, has been begging me to wake up earlier and earlier each day. No matter how early my bed time is, my body would automatically sleep until 3:00 PM. Lately I have been able to go to bed by 11:00 PM and wake up by 1:00 PM. Today I woke up at 8:45 AM and oddly didn't feel sleepy, even though I went to bed at 12:00 AM. But out of nowhere, the panic hit.

I had just finished baking my love's cookies for Valentine's Day and BOOM - my thoughts turned into worry.

"What if he doesn't like these?"

"What if the kids eat one?"

"What if you don't love Rafael one day?"

"Stop thinking this way, Mandy. Stop it now!"

And then my stomach started to burn. I knew my body would vomit or have diarrhea at one point or another. My hands and feet both became cold and sticky with sweat. I felt tight in my chest and dizziness. I started to become shaky with fear of what was happening.

Panic attacks have been hitting me since 8 months after brain surgery. Before that they were more simple anxiety attacks that weren't so terrible. But these... These are awful and out of nowhere. I lose a good 12 lbs. as they kill my appetite and give me an upset stomach that lasts days. 

Not what I wanted for this Valebtine's weekend. Lord, I will trade these for those seizures any time. Please take these away. I beg you. I really do...

I now lay shivering underneath this blanket, that was once annoying and too warm. But my hands and feet are still freezing. I suppose a warm bath may help. Maybe hot tea. Definitely not coffee. Coffee makes these worse and I was dumb enough to drink some this morning. This could be all my fault.

Dr. Velez put me on a new pill called Remeron. It's supposed to help these... But she said it takes time. Lord, help me be patient like I was after brain surgery.

Please send a prayer or two for those who suffer this way. I know many others like me and it hurts to feel this pain.

Sincerely,
EB

When I Saw Heaven



It has been almost one year, and I still thank God. I thank Him every single day for letting me live to see another day on this earth. Yes, I do often wonder where I am going, I do struggle as I aim to move forward. But even when I fall to the floor, hitting rock bottom, I am reminded... Reminded of what God asked me to do here on His Earth. Reminded that He is always with me, and that He will continue to pick me up whenever I may fall down on this road of the life He has given me.

As I laid in bed, about an hour before brain surgery #2 (the removal of Left Temporal and Occipital) my family came to me. They came to me to pray and make sure that I felt alright and wasn't worried. There were thousands of people praying for me all over the world. From fans, to family, to churches and prayer groups. That is what made this morning so profound... After each day of being afraid, I was at this calm stage of peace. I felt like my body was afloat and as if a million hands laid on me for prayer and protection. I wasn't scared and I felt nothing but joy. The nurses asked me if I had taken pain killers or drugs because I felt so happy that early in the day! (About 5:45 AM) I told the nurses and my family that I was ready to go, no matter what happened. I told them that I was not afraid and that I could feel God and his angels all around me in my bed. I felt loved ones whom had passed with me to fight. But little did I know, I would actually get to see them during my brain surgery, only a few hours away...



~ ~ ~ 

I was moving into a place I had not seen before... I would say walking, but it just isn't the right word... It was like floating yet walking all at once. I could feel my body, but it made the regular healthy body here on earth feel like a pain to carry. I was not heavy at all. I could go forward, back, and side to side with ease. Without my mind having to tell my feet or my legs to move. No sore knees or stiffened joints. No difficulty with my lower back. No pain, whatsoever. 

I chose to move forward as something called me with a language I did not know here on earth. The sound of blessed instruments that I had heard only a few times in my life when God came to me during my seizures. Except this time it was more bold and beautiful. Making me crave what was in front of me in a spiritual way. This music fit my spirit like a puzzle piece, bringing me joy, love, and safety amongst so many other feelings I cannot describe as they do not exist on Earth.  

I started to hear the heavenly voice of my tio Alfred, whom had passed away a few months before my surgery. I saw him right in front of me, with his palm out to me. Many of us call him the father of our family, as his heart was so strong with The Lord and we could run to him for prayer. We were so sad when he passed away from cancer. We all needed him so much and I often questioned where he was or where I would go if I died during surgery. I needed him so much to help me get through brain surgery, and he was dead... Or so I thought, at the time. Because there, in Heaven, he was more alive than ever. His skin color was beautiful. Like a skin color I had never seen. He glistened in a way that was peaceful and joyful and his body praised The Lord. He stood with one arm out to me, palm side up. Letting me know to continue walking toward him.



I continued walking down the beautiful path, with Tio Alfred leading me by my side. I was in awe at how young he looked. His skin was clear and healthy like the skin of an infant... Except was a beautiful color, which let me know health was no longer an issue. I found myself in awe of the beauty that was in front of me and all around me. The beautiful land that made Earth appear to be boring and worthless. I could see Mountains to the left, with beautiful land like no other I had seen. Green healthy plants covered a lot of the land, and it amazed me how it was so healthy. I hadn't even come to the gate yet and I could see this from so far away!



I saw the buildings made of a gold material. Beautiful... And when people ask me what they looked like, the word "riches" comes to mind. God does have a beautiful place for us to go. The glistening of these buildings captured my eyes. So large and glorious, built with perfection. The lovely color of the sky that was not a color I had ever seen. Reminded me of a purple but is definitely not purple. Maybe it reminded me of purple only because that is an important color to me personally?  I just remember identifying a color similar to one that I knew, and purple was the one. The sight of these new colors alone had me in awe. Colors that once did not exist. I long to see them once more. 

I could see the gate from afar... The actual gate! It is real! Just like The Bible said! Made of a beautiful, very tall, cream-colored stone material... Like a pearl, but very large and stone. Polished well and glistening like the sun. The brilliance and depth of the color of the stone was beyond this world. But it let me know where I really was, and I was not even touching it yet. Seeing things from afar in heaven was easy, as my eyes were not weak and distance did not matter. I could move with ease, and time nor space could hold me where I was.

As I saw grandpa Popsi I first questioned who he was because it was such a young man.... Yet somehow I knew it was my old Popsi. I only knew Popsi when he was very old, and I had honestly never seen him when he was young. So I was curious how it was happening... How was I recognizing this young man in front of me whom I never knew at that specific age? I never even knew his voice as a child because he was so sick. When he was alive, I only heard him speak a few times. Other times he would just write to my family on a piece of paper or point to what he needed. So how is it that I knew him and could recognize him so young? He spoke in the same music that Tio Alfred spoke in. Yet somehow he laid the knowledge on me of who he was. Therefore I knew I was looking at my Popsi. This was truly amazing.

Tio Alfred and grandpa Popsi both walked with me and spoke to me. My Tio told me what to tell our family and what to tell Tia Mary. (Tia, by the way, was not going to come be with me for surgery even though I begged her. I spoke aloud in my room asking Tio to please change her mind, and only minutes later she called saying she was coming to be with me!) Tio Alfred told me to tell Tia that he would always love her, and the same for his children. He also asked me to tell the family to be happy for he is in Heaven with The Lord and that he was no longer sick or in pain. This love amazed me more than it ever had before. But when Tio told me he was expecting me, and knew he would see me before I was in heaven, my mind was blown. Before he died, he whispered to me during a prayer at his dinner table saying "You and I will be going through something very hard together soon." And when I asked him what it was, he never replied. This is what he spoke of and it was yet another miracle on it's own. 



Popsi told me something that you would think would shock me; He told me that grandma Jojo would be with him soon. My father and I take care of Jojo regularly, so the thought of losing her is a little sad. But knowing she would be with Popsi and get to be somewhere so beautiful does not make me sad at all. It makes me so happy for her. Popsi told me to tell Jojo that he loves her and is in heaven waiting for her. As Popsi spoke I noticed how jolly and young he really truly was. How handsome and healthy. But how young!!! That was the most amazing to me!!!

Ever since I was little I was slightly scared of heaven. The Christian songs mentioning how we would "fall to our knees" or become "unable to speak" sounded so awful in my mind. But it took me until I was outside of the beautiful gates of Heaven to realize how amazing it really is to fall to our knees and become speechless. As Tio, Popsi and I came to the gate The Lord spoke. His voice more powerful and beautiful than all the others. More instruments than you could ever imagine played with his every word. Technically they weren't even words and were that music alone... I just somehow knew what He was saying as I fell to my knees in grace.

God told my Tio Alfred and grandpa Popsi to hold each of my arms. Tio Alfred grabbed my left arm, and Popsi grabbed my right arm. He said it was "Not yet my time". This made me sad, yet at the same time I was enjoying God's voice and it's beauty. The Lord appeared in front of me in an instant. The way he travelled was amazing, and as He spoke, He moved me with Him to see what He spoke of. I begged Him to let me stay and go through the gate. He reminded me of those whom I love, such as my mum and dad, and Rafael. But even then, I begged to stay. It was amazing - I wanted to give up everything I loved in life to stay in Heaven. 

Why? Heaven was all I needed. No hunger or thirst or pain. My body moved freely and music left my mouth. I praised God with every word. What was the best? Well, I could see my Father's body up to his bottom lip. He would not allow me to see the rest of His face for some reason... Or maybe I was not fully equipped to see it? I will never know until I return to heaven when I die. Regardless, it was pure joy, and nothing but. For that unexplainable beauty, joy, and peace, I continued to beg even more.



God once again told me that I could not stay. He told me about my work to do here on His earth and He told me to help those suffering like I am, and to bring them to Him. He showed me my future children. He showed me their creation right in front of my eyes. Not the creation the Earth and humans see, but the heavenly creation. I saw a small baby grow from the womb to a human filled with God's Holy Spirit. This baby was a boy and had the features of my love, Rafael. I remember seeing this child have his father's eyes and skin. I asked if God was showing me Rafael as a baby boy. I did not understand what I was being shown. And then God spoke, saying this was one of my children. It was so beautiful to see, and although I wanted to stay in heaven, I did want to hold my child so badly in my arms. I felt the love of a mother seep into me, making me long to hold a child some day. And with this thought, God put his hand in my head and told me "Your time has not come. Go back to Earth and help those who suffer the way I have helped you. You no longer have anything to fear about your illness, for I am with you." 

With a light press on my head, God pushed me back into my body and I woke up in my hospital bed. I hadn't waken up for a little too long and my family and doctors were worried. The worries of me being brain dead and non-responsive burdened them, for they did not want to lose their child. But there I was! finally waking up. I felt earth once again and saw my uncle Steve and aunt Lina by my side. But I felt my body breathing, and the aches and pain of my head. So I closed my eyes to sleep. For I was alive again, and pain was proof. But I laid calm knowing God was by my side all along, and forever will be. 

~ ~ ~ 

The entire experience of seeing Heaven was far beyond amazing. I did my best to explain it decently to you, and I apologize if I didn't explain it well enough. Feel free to leave questions in the comments and I can answer them for you. 

As far as the update on my health, I have only had a small handful of seizures this year. In my mind they are gone. I have, however, started having Panic Attacks, as you may know from my last post while I suffered from a small one. Most of them last for quite a long time. Almost an hour, and are very difficult to deal with. But God has been with me through so much that I can not lose faith in Him now. I will say that now that my seizures are gone, I realized how beautiful so many of them truly were. Seeing those colorful auras is the gift that I miss. But God only gives us gifts for so long here on Earth, and I look forward to those that come in heaven after I walk through that gate.


Thursday, January 30, 2014

Today's Doctor Visit


Sitting in the room waiting to see my Dr. Szabo. Just spoke to my amazing Epilepsy Nurse, Janice. Always makes me laugh, somehow. Everything sounds good. I had no reported seizures to tell her about aside from 3 little auras over a 4 month period, which is fantastic compared to the 100 seizures and endless auras a day before brain surgery! 

The only things that worry me are my Onfi. A fantastic medication that saves people who suffer from seizures in their sleep. Lessening chances of SUDEP (Sudden Unexplained Death in Epilepsy). This drug has caused tightening of my throat to the point where swallowing food is impossible without water... At least I think it's the pill's fault. We'll see.



I am also very worried about my ridiculous lack of sleep. It's throwing me off mentally and physically. Looks like I will have to sadly be put back on a higher dosage of Ambien for a while to avoid the seizures returning. After all, every aura so far has been due to lack of sleep. All occurred on days where I didn't sleep until 3-5:00 AM. 

My panic attacks are lessening, which is good. I definitely do not recommend acne medications to anyone who has Epilepsy. They mess with hormones and in turn cause your body more stress than it needs. However, I am glad I took the pill, as it helped me understand why I have had cold hands and feet since brain surgery. Basically my body's way of fighting depression an anxiety. Mini panic attacks that did not win!!! (At least until I took the acne meds lol!)


Check out my awesome rash! No idea what it is from, though. Possibly the Cedar trees. But I've honestly never had this before. It just hit me yesterday and it looks awful!!! It could also be some sort of skin yeast infection. My mum recently had this issue... Contagious?! 

Anyhow, I shall be off. I will write again after my follow up with my Psychologist, Dr. Velez,  this next week. Her appointment will be interesting, as usual. God bless and I wish you all a seizure-FREE weekend!!! 

Wednesday, January 22, 2014

Money is Tight This Year


The new year is here. While it feels great to be done with last year, it also hurts because I feel the holes that are burning into my pocket now that insurance has restarted. No more "You've hit the deductible, so you're good to go!". We're back to pulling out all the cash, checkbook, and credit cards. 

Just got a call from my doctor's office letting me know that tomorrow's appointment will be a little more than $100, and if the doctor does a quick (2 minute) test on my VNS (Vagus Nerve Stimulator) it will be an extra $240. I seriously think I have just had a heart attack seeing these numbers again. And this doesn't even include the cost of my meds. I am hoping I can get some permission to come off of a medication or two...

God, please keep me calm. 


Monday, January 6, 2014

It's Been Quite a While



It's been quite a while since I have written.  Since my brain surgery last February it has been difficult to process thoughts at a decent pace. Worse than that, it has been extremely difficult to read. I am still hardly able to do so and it has almost been a year of re-training.

However, I have come very far. Compared to before surgery, having 30 to 100+ seizures a day, I now have only had a handful. And I don't mean "per day"... I mean since surgery. Definitely an amazing blessing and that is for sure. Plus - my hair is growing back beautifully!!! 

I am now only taking Trileptal and Onfi for my seizures. I was taken off of Felbatol entirely - which was a challenge to do, but I did it! - and I will hopefully be coming off of Onfi in about 3 months. 

My Psychologist that works with my Epileptologist has decided to put me on Pristiq. I was not entirely happy about taking this drug at first. The thought of being stuck on more medications had me enraged. But when I started to take the pill, I honestly felt my happy emotions as clear as day for the first time since surgery. When prior to taking Pristiq, I constantly had mixed emotions or don't feel emotion at all with people I loved. 

I was able to get off of this medication for quite a while until about a month ago. My brain had major difficulty with depression out of nowhere. We aren't sure why, but it could be one of 3 things:

1) I was put on an acne medication that had side effects of serious depression. The doctor never told me this and I was not aware until I had been taking it a month (which is when the depression hit).

2) I came down with a bad stomach virus. This happened at the same time as the issue with acne meds. I am not a cold-catcher but this one germ was too powerful for my body to beat. I lost 17 lbs. of weight in a week and could hardly down water. I would get anxious and intensely sad just before I would puke or during the chills and sweating episodes.

3) My depression may simply be seasonal. It's been a cloudy season, and December hardly gave me any sunshine. Rainy days made me feel down. Days when it was too cold to go outside made me so anxious and depressed. All at once.


Anyhow, all three of these happened at literally the same time. So there really was no way to know for sure. My doctor have me a low dosage of Xanax to last me for 7 days until the flu bug cleared up. 

I have overcome a lot of my issues in many ways. From daily exercise to making art when emotions are difficult. Taking a nap to clear my mind, to great apps that help with anxiety and SAD (Seasonal Affective Disorder) which is also known as Seasonal Depression or "Winter Blues". Drinking delicious teas as I sit out in the sunshine for 30 minutes a day has been the best, by far.

Anyhow, it is 3:00 AM and I really should be in bed. Just wanted to update you all and let you know that I will be writing more and more. I am slowly becoming EB again. It just takes time and patience!!!



Wednesday, April 10, 2013

For All Epilepsy Warriors on the Ship to Galilee




NOTE: I hope what I say in this post makes any sense - it has been a long day. Missed therapy so I had to take an extra long walk that has worn me out, yet I cannot sleep. But I thank The Lord nonetheless!!!

I have gotten many e-mails from folks going through hard times. Preparing for brain surgery, preparing their child for brain surgery, medications are not working, having too many seizures, having trouble sleeping, issues with health insurance, losing their jobs, relationships falling apart due to having a partner that dislikes their condition, and so on. I will continue to pray for The Lord to help you all through these times. I know they are hard.

We may not have gone through the exact same things but we have both definitely experienced those periods of the rough waves hitting our ship in Galilee. I think that many times those waves never truly get stopped by Jesus, as He often wants us to trust Him and lay down by his side until the storm calms.  Anyhow, if we asked Jesus to calm the storm (and if He did calm it) could truly block something He may want us to see, strengthen by, or a gift of the ability to help others that are struggling with what we are as well.

Wednesday, February 20, 2013

I Will Destroy Epilepsy for My Epilepsy Family



So the hospital called two more times. Now I am going in at 5:30 in the morning for surgery. I decided to stay awake, write one more short post, finish packing and thank you cards. Getting so exhausted that it's not even funny, but I'd rather go into surgery tired because I won't have time to be so nervous.

Cramps are coming in more and more by the minute, so I know my period is going to start pretty much any minute now. Not happy that I'll be getting my monthly gift in the hospital during brain surgery. I am actually rather upset... But maybe that's just my hormones making me cranky?



Just got off the phone with my sweetheart. It was so hard to hang up... You know, I love him with all of my heart. And over the last few weeks I have realized that his love for me has truly grown. The way he loves and protects me is just... Unbelievable. Especially for our age and distance apart. I wish he was back at home right now, but I am thankful simply to be with him. The Lord has spoiled me with such a sweetheart.

I started to cry on the phone with him from the fear that has finally kicked in 5 hours before my first surgery. I realized this is happening TODAY. No more days to count down to. I told Rafael "Thank you for staying by my side through this. Your love has kept me so strong when I just wanted to fall apart sometimes. You're my best friend and I couldn't have done this without you". He replied saying, "Anything for you my love." Then we said our classic form of I love you that we say to each other each day and night:

"I love you," I cried.

"I love you more," Rafael whispered.

I sobbed and replied "Never."

"Always and forever." he said, bringing a smile to my face.

The boy always knows how to calm my tears. I wonder sometimes if he's an angel in disguise. Anyhow, I had to hang up because I refuse to keep him from his sleep. He has an education to achieve and I will always make sure he gets all the rest he needs to do so. So I held back my tears and said goodnight.



I am having faith that our good Lord is going to bring me through this surgery. I won't lie to anyone - I am scared out of my mind! This is no foot surgery or appendix removal. It's a brain, and it's a big deal. I contemplated chickening out, but I did a lot of thinking and a lot of praying. After that long process I realized that Epilepsy will always be a battle, but the cure we find someday is going to rely on us to be brave and make choices that don't seem so attractive.

So my sweet Epilepsy family, I am doing this for all of you. For those of you fighting Epilepsy now, and those of you who will fight Epilepsy later in the future. I am getting this surgery to help show you all that you can do it too, and that you can find success. I am claiming my healing from the Lord, and rebuking any suffering.

Death has been eating away at my brain for quite a while now with Epilepsy and making me suffer tremendously, but with our army of prayer warriors and the good Lord's blessing of an amazing brain surgeon and Epileptologist, death's meal is about to be put to an END. I love you all, and just know you are all appreciated and loved by this blogger and advocate. I may not know you personally, but I have a love in my heart and a great understanding of your suffering and I want to help you achieve your Epilepsy Success.

So please stay tuned to the blog and/or Facebook pages. My family will be updating daily and I will as well if I have the energy or feel well enough. Also, keep me in your prayers because I truly need my prayer warriors right now. Thank you for the love and support, and I am going to show you all that overcoming Epilepsy is possible with faith, love, hope and a little bravery.

Matthew 17:20
"He replied, "Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you.""



See you all soon,
EpilepsyBlogger

P.S. - I have gotten comments and messages on Facebook regarding sending monetary donations and/or gifts to me. I was unable to reply to several due to privacy settings on Facebook. Therefore, if you would like to send a donation or gift, please e-mail MandyKrzywonski@EpilepsyBlogger.org for the mailing address.

Tuesday, February 19, 2013

Nevermind, Brain Surgery is Tomorrow

So, everyone... I must have jinxed myself because my surgery got moved to tomorrow instead of Thursday. A spot opened up and my doctor wants my surgery done as soon as possible. Not super excited, but I suppose it's better to get it done as soon as possible.

Here's some photos from the hospital blood prepping today! Don't I look so excited about the date change?







By the way, that's my hair in my face lol...






Anyway, this is probably my last blog. I'll try to write more tonight if I have time, but after that my family will be posting! Love you all, God bless and stay brave!

EpilepsyBlogger

P.S. Jesse from University Hospital at the San Antonio Medical Center ROCKS! This is how we do it, Jesse ;) Stay cool!

2 Days Until Brain Surgery - So close!




Today was a really nice day, actually. I felt more sense of calm than being nervous. I think it is because I did a lot of praying... Actually, I know it was because I did a lot of praying. I spent my morning sleeping in and slowly packing my bag throughout the day. I thought I was going into the hospital Wednesday night, but my mother read the letter wrong. It really said:

"After 3:00 PM on Wednesday February 20th, a nurse from Outpatient Surgery will call you and give you a time to report for surgery the next morning."

NOT "Report to the hospital at 3:00 PM on Wednesday". (Laughs)

Monday, February 18, 2013

3 Days Until Brain Surgery - Good Luck Party



Hey everyone. Forgive me for writing a little late - things have been hectic! I'm now at 3 days left until surgery, so I have been doing my preparing... A lot of it! Saturday, the 16th was my " good luck party" day. It started out great because my father surprised me by going to get my darling Rafael (three hour drive) and bring him home. Rafael was originally coming home, but the ride fell through. So I wasn't sure how we were going to pull it off. I really needed to see him.

So, dad and I left early in the morning. I was so glad that I got to accompany my dad so I could spend extra hours with Rafael. However, my father is passing kidney stones so the trip was a little slower than expected as he had to make stops every half hour. He actually passed a stone at a gas station! Anyhow, we eventually arrived and when I saw Rafael standing outside his quarters my eyes just watered. I was so happy to see him... You wouldn't believe me if I told you! Just sitting next to him was a blessing.



Friday, February 15, 2013

6 Days - Someone Knock Me Out


I don't know what to feel today or what to write. It's becoming more real than ever. I'm mad at everything and everyone for no reason. I cry every time I'm alone. I've broken down on my mother twice in front of everyone. I just want to scream and get all the energy and anger out of my body. But, instead I just sit here because I am afraid to look crazy, and I write. For some reason it's easier to write my feelings than to show them or talk about them aloud.

I know I'm being snappy and I'm sorry. I'm just so upset. Not to mention that I can't rest and enjoy life because my brother and sisters don't cook or clean. I wish someone would do it for me. But then that makes me selfish. Maybe I am selfish.

My tia, nana, and cousin arrived from Michigan today. I'm so happy to see them but my heart and my mind won't let me show it. It was so embarrassing to cry in front of them. I'm usually so strong. "The EpilepsyBlogger". The girl who kicks Epilepsy's ass and never sheds a tear. Hah. Not anymore.

My mother told me I technically go in to the hospital on the 20th, so I have 5 days to "enjoy" life at home. Still haven't started my period so I'll have to just get used to the fact that I'll be bleeding from more than one place in the hospital. Sorry for the gross details, but it's just what's on my mind. God, I'm crying all over my iPad screen.

I almost wish I'd have a seizure tonight, simply to knock me out of this mess.

Goodnight,
EpilepsyBlogger

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EpilepsyBlogger's Women - Being a Mommy with Epilepsy ft. This Shaking Momma

Foreword

Hello everyone! It is my pleasure to present this awesome article to you, straight from a talented blogger (who also happens to be both a woman AND a mommy with Epilepsy)! Women with Epilepsy have a lot on their hands. (Sorry men, but we carry just a little more than you do!) We not only have tricky hormones, but we also have to take extra care when it comes to things like birth control, fertility, getting pregnant, carrying a child, giving birth to a child... AND, if that isn't enough, being a mother.

I will cut my intro short before it turns into it's own blog post. It is a pleasure to introduce Jessica, the "Shaking Momma," and her amazing guest article about pregnancy and Epilepsy. Be sure to comment with your thoughts and share as well! Thank you, Jessica for such a great post!

P.S. - I sure hope you'll be back! LOVE this article. Brought me tons of peace of mind about being a mother someday, which is my one and only dream. (Seriously lol!)

NOTE 2/15/2013: There WILL be a second article coming about the emotional side of pregnancy and Epilepsy! So keep your eyes out!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~


"Our last picture in front of our WA home"

           My name is Jessica. I’m 33 years old. I have two kids: Isabella is 7, Dimitri is 4, and one great husband, Val. I had my first seizure when I was 16 years old. My seizures were controlled with medication and only happened when I missed meds. I lived a very normal life - played sports, went to school, drove, did everything my teenage friends without epilepsy were doing! Next, I graduated from high school, moved onto college, met my future husband, graduated and got married.

Thursday, February 14, 2013

7 Days Until Surgery - Officially One Week



Today my brain surgery is officially only one week away.

7 days.

168 hours.

10,080 minutes.

604,800 seconds.

Great.

Monday, February 11, 2013

These Seizures Won't Give Me a Break, Break, Break...



Today is one more of those days filled with seizures... And if it wasn't seizures, it's been a massive headache that could knock out an elephant. Surprised I even felt well enough to make my family some homemade peanut butter cookies (photo) and sit down to give an update. But I assure you all, as soon as I'm done writing this, it's back to bed for EpilepsyBlogger.

I didn't get too much sleep last night due to a lot of slight simple partial seizures. These seizures are less frequent and not as normal to me as others, so they freaked me out like you wouldn't believe. I didn't run upstairs to scare the parents, and did my best to relax until they passed. Finally I slept around 3:00am and if I had to rate my sleep, I'd say about an 8 out of 10 stars. So not too bad.

Saturday, February 9, 2013

12 Days Left with My Whole Brain



Not sure why, but everything is randomly getting stressful. As you can see, I had to cut my hair even shorter... Not really loving this hair at all. I feel and look like a guy. Hate to be negative, but that's all I see in the mirror. And I look identical to my brother. This is awful.