a day in the life of epilepsy

Last night I went to bed feeling a bit off. I woke about an hour later having a bit of a panic attack... seizure coming? I swiped my magnet and laid my head back down... it didn't help. The panic got worse and I felt the oncoming seizure. I shot out of bed, grabbed my phone and magnet and ran upstairs. Just as I got to the top of the stairs the seizure was starting. I swiped my magnet again and fumbled for a light switch... I am house sitting, I am not in my own home this week, so light switches and things are not just where I know them to be. The basement is a terrifying place for me to have a seizure- any basement... What if I got hurt? no one would find me if they came to the house, the basement is dark- even during the day.
I got to the center of the living room- safe place- big open area, I think I swiped my magnet three times- I went to the floor but the seizure did stop. I sat on the floor and caught my breath and allowed my muscles to regain some strength- hard to walk when your legs are jello! I went to the kitchen and had a huge glass of water. 
When I went back downstairs to return to bed, I couldn't do it. I rarely have multiple seizures in one night- but what if? I put on my sweats, got my pillow, turned of the tv, and went upstairs! I felt much more comfortable in the reclining sectional in the living room!
Anxiety left, my body and my mind were truly ready to sleep!
This is my life with epilepsy these days. It's hard when Im alone,but then again sometimes when I do have someone there- I wish I was alone! No one can take away the anxiety, or the seizure, no one can stop the things that go thru my head during these events.
I always say I have no fear, that I have faced and overcome my fears... but I actually do have one fear. I am scared to grow old alone, to have these health issues that I know as I get older- leave me risking injury and not being able to get help. I've heard stories of people breaking a hip from a seizure related fall, what if I hit my head bad? I know- all 'what ifs' but I still think about them.
I've had 2 mini strokes, both tied to seizures. What if I have a major stroke? And no one is around to see that something is wrong... Then again no one noticed after the second stroke even in a house full of people. I still have signs of the last stroke, its part of what is causing my depression- Im so frustrated with the changes and my inability to do things the way I should.
I woke up this morning a bit achy and still very tired, but I get up. Staying in bed might be an option while I'm away from home, but not in my regular life. I have a job, I have a home and husband to take care of... I have responsibilities that I can't just ignore because I don't feel good. So I get up, I do what I have to do.
I continue to pray for a cure, or that one day I will just stop having these seizures. But until that actually happens... 

Depression

I have so many different things going on in my head and in my heart right now, so many topics I could focus on to write... all I know right now is that I need to write!
I've been dealing with a number of health related issues in recent months, this, in more ways that one, has contributed to my depression that is at an all time level right now. I haven't talked to anyone about the health concerns- nothing can be done and I am one of those who hates the sympathy thing! I try to hide it best I can- I take naps, I cringe in pain when no one can see, hide in the back room at work when I can't handle it... I hold the breakdowns for when I'm alone. My health isn't the only thing contributing to the depression, obviously, I have a lot going on in my life that has me stressed and down. I don't take meds for depression anymore, maybe I should! But at this point I truly don't think it would help... I need to solve the problems, I need to fix what's broken in order for me to not be broken. Pills can't do that.
I won't go into detail about the things causing my stress and depression, other than I am overworked, I have some relationship issues with a couple people and recently lost the one person who I never thought would walk out of my life- over something as stupid as politics... That has affected me more than I ever expected it could, she meant the world to me. I feel very much alone in everything I do, everything I am going thru, I feel alone in my life.
I have 2 amazing friends- unexpected best friends, who hold me together. I dont' think they realize they do, they don't really understand what is wrong with me and probably feel sometimes they are the problem... maybe a little of my stress comes from them, but nothing I can't work thru! They have been my saviors, my reason to keep pushing...
This week I stopped pushing. I finally broke, stopped caring- about anything or anyone... including myself. I've been scared of myself, and I have valid reason to feel that way. All week I have just been barely dragging thru, trying with all I had left to just get to this weekend. Vacation started- me time- an entire week away from home and away from work by myself. Time to escape the things that weigh so heavy on my mind. Of course those things still exist and will be there when I return... but for now I don't them staring me in the face. I can get a bit of peace, some time to clear my head and relax and try to remember why I do what I do and just maybe break some of this down and see if I can focus on each part of what has me so broken rather than all of it.
I'd like to say I am strong and I will get thru this just like all the other hard times I've had... but I honestly can't say that at this point. I do not remember a time that my depression was ever as bad as it is right now, and yes, I am scared. I have asked myself a dozen times this week  what do I have to even live for anymore? All the things I used to come up with... aren't there now.

VNS... Better or Worse?

I realized today that a number of people believe I am having a lot of seizures and that my VNS implant doesn't seem to be changing things much. I want to explain a bit about this, because I do still feel this device is the best thing I have done for myself aside from Thrive.
I have never been one to share on social media every time I have a seizure. Yes, once in a while, if they are big and bad and caused injuries or whatever, but not all of them. Now, I do share about most of them, still not all, as a way for me to kind of keep track. So it may seem to outsiders I am having more.
Also, before my surgery, I was having minimum half dozen small seizures every single day... up to probably 30 or 40... they were seriously out of control and destroying me physically and emotionally. Those are next to gone! I have maybe a half dozen a week of these smaller type- and that's on a bad week!
When it comes to my full blown seizures... probably 4 out of 5 times, I am able to get it stopped in less than a minute and a half- it's that 5th time that I actually do go fully unconscious and am more likely to hurt myself.
I have seizures that make me unable to talk... and I have seizures that make me fall down and injure myself, go unconscious, forget things I did ten minutes prior- or the entire day prior. It is frustrating and painful, even now with the VNS- I still get very frustrated!
But, bottom line- this incredible modern medical technology was a very positive addition- no matter how creepy it seems, to my body and my life. Yes creepy. I have some electronic device in me with a wire running up my next that pretty much electrocutes me in order to help me, a device that runs off batteries and magnets and will be in my chest for the rest of my life. Anyway, I started this post like 3 days ago and have been too busy to even remember I was writing! So that's all for now. Please understand that I am doing much better than before and I am very happy with this device and with the change in my life it has brought.   

just a post of random thoughts

I suffer from depression. It took me years to accept this, even more to admit it. And lately- I've been in a really dark place with it all. People ask what's wrong... umm- I can't even answer them. I mean, yeah there's things going on in my life that are upsetting, but seriously- not enough to make me the basket case that I am! I do have a lot of positive going on in my life- it just isn't jumping out as strong as the negative. 
A year ago yesterday is when my best friend lost her battle to cancer. I battle this every day, but this month has been rough with her birthday and the memories of last visits and last texts... and that last phone call from her husband. It hurts, she was more than a best friend. I know eventually these 'anniversaries' will be a little easier to get thru.
My health is declining again. I have my ideas of what is going on, but I honestly don't feel it important enough to tell anyone. If it gets worse I may call my doctor, but other than that- no one has time to be concerned about my health so why bother telling anyone?
Yes, that is one of my biggest issues right now. I feel invisible. I do so much- at work, at home, for everyone I can... and I never get a thank you, or a 'good job', or an offer to help me... or even 'how was your day' or 'why are you crying?' I have expressed way too many of my emotions on social media the past couple days- i hate opening myself up like that, but I am so frustrated... and hurt. And thought maybe if the people who claim to love me cant see it in my face or in my texts, maybe when they are buried in Facebook they might see my pain and reach out. Stupid me!
I'm pretty much done expecting people to notice what I do, how I feel or think...
I think I should walk out the door one day and leave my phone home... and just disappear for a week. Maybe then some of these people would notice- not all of them, but the ones who expect me home or at work.
One of the things holding me together... most think it is what is tearing me down, I have an incredible family living with me. Honestly, if they werent here, I probably wouldn't be either. I know I have mentioned them in my blog before, they really have shown me so much about love and family... and I can't imagine my home without the noise and constant goings on. 

My life is far from perfect, but happiness is what we make it, it's in our attitude and how we respond to the challenges life gives us. I choose to ignore the problems that I don't have time for. I deal with the now and as long as the other stuff can be pushed aside for a while, I do it. Eventually I will have to face the reality and confront those problems, but for now it doesn't affect my daily life, so why stir things up?! My health cant' take facing big problems right now, I really need to start focusing on me and my health and stop putting my focus on those around me.
I realized something tonight... I recently hit the ten year mark of walking out of prison, quite the emotional anniversary- didn't at all see that coming! Anyway, there has been much discussion about me returning to speak to the girls out there, but one of the conditions of the corrections dept is you have to be out for ten years. We went so far as speaking to the governor about getting me in about 4 years ago, but we never followed thru. Now I don't need him to say its ok, I just need to go thru the process and I can get in! Its actually a very scary idea for me... to walk back in that place. I remember the first time I walked in- I remember everything about that hallway. 

My youngest will become a teenager this week. I was looking at birthday cards the other day and just started crying. How do you even pick a card for someone who means the world to you but you know nothing about them? I can't get her a daughter card, I can't get her some sappy 'i love you' card- that would freak her out I think. So what do I do? get her some cute little gift, I guess, no card.
I've made contact with my parents, and I feel really good about where it might go. That is an entire post in itself- I have a lot to say and to clear up on the topic of my parents. So for now- good night and blessings to all.
Remember to say I love you. Make someone smile. Do a random act of kindness... whenever possible!

Christmas 2016~ A First Christmas

How do I even explain what this Christmas was like?

I have not celebrated this holiday since 2004, this was like my first Christmas!

I made a decision that I was going to change my attitude for the benefit of my family and myself. I went shopping for holiday decor~ Ambri said I was like a kid in a candy store! We put up a tree and decorated it, we put lights and decorations around the house, not a lot- limited budget, but it was still awesome. I was excited! I have let down my daughter for years by not doing this- she deserves better, she deserves happy memories!

This year I have a house full- and they have brought so many smiles and so much love to our home... how could I not give it back?

We were very concerned about getting gifts, money has been very tight since the family moved here- for all of us, but we did what we could. Then someone reached out to me, someone who heard about our family. A couple nights before Christmas they showed up at my door with boxes and bags of gifts and food. Gifts for each of the kids- enough to fill under the tree. Food for Christmas dinner and other basic grocery and household needs. I was so overwhelmed, a crying speechless mess! They went way beyond anything I could have asked or dreamed. This is the spirit of the season, helping others. Yes, we would have managed. These kids have all had rough Christmases with little under the tree, we would have managed a decent dinner... But we had a great dinner! And the kids got many gifts, things they wanted and needed.

The smiles on everyones faces are all I wanted, my goal for Christmas was to have a house full of happy people, smiles, giggles... it was perfect! And we even got a white Christmas! Woke up to a foot of snow outside!

The last time I celebrated Christmas I had both my girls with me...

This year I had my oldest and her husband and our extended family... and I was able to get a gift for my youngest... for the first time since 2004. I didn't give it to her in person, but she did get it.

I am already making plans for next year! This was so much more than just Christmas for me. It was a new beginning.

I hope every year is as amazing as this was, I want others to experience the true spirit of the season... I want to pay it forward and help others as we were helped this year.

I will never NOT celebrate Christmas again!

The governor and porn

So today it was announced that our governor wants to set aside $50k to give a non-profit organization to help in the efforts to block porn from Utah children... This non-profit holds conferences and educates people on how to protect your kids from porn.
I normally don't have a lot to say when it comes to political stuff and the decisions of our leaders. But this I do! And I feel I am totally justified in having a say! 1~ I worked in the porn industry. 2~ I was married to a man with a terrible (and dangerous) addiction to porn. 3~ I went to prison for hell sake! For not keeping porn 'properly' away from my children.
Porn is like beer- if kids want it, they will get it. Look at the internet! Kids have cell phones and their own computers... not that hard for them to access the crap! And if parents want to keep it away from their kids- it's pretty much common sense, right? Just like drugs and drinking- open communications, be active in their lives, blah blah blah! Utah has a bad habit of pretending things don't exist... if we don't tell our kids, they will never know. Good hell! Don't tell your kids porn is evil and will cause you to become a rapist, don't tell them it isn't real, either... guess what- some people enjoy watching porn with their spouse! Some people look at porn as an alternate to going ut and hurting someone. I have talked to many people about porn... I lived it, I needed to understand what and why. It isn't just kids watching it! There are couples, there are women wanting ideas to add spark to their failing marriage, there are lonely old men... And the people making porn? is that even an issue? I'll tell you who makes porn... women- and men- who want to be able to pay the bills without having to live paycheck to paycheck, moms who want to be able to have an income while being a stay at home parent, people who love the camera and their own bodies, people who know there are others out there who want to see them without clothes on, normal everyday people!
Will this $50k stop the exploitation of women? Or men for that matter- yes, there are men who are exploited too! No, it won't. That is an entirely different issue. And not one that can even be touched on a state level! The internet is not local!
Will it help with the sex trafficking of minors? Hell no! Not even in the same realm of issues! Yes, Utah has a BIG problem with this, but has our gov even acknowledged it? This is Utah, folks, what we cannot see- doesn't exist. Yes, the sex trafficking is a big concern, and that $50k could be a huge start to addressing it and putting a stop to it.
FIFTY THOUSAND DOLLARS! in the entire state budget, it is a minimal amount. But think of the things that money COULD do! We have so many problems that need funds. Take $50k out of your own damned pocket to give this non-profit! and leave my tax dollars out of it!
Gov Herbert declared porn is a public health epidemic or something like that... I very much disagree with that. Yes, there are a lot of problems, but an epidemic? It is a choice! ok, a choice that can become an addiction... has Herbert put any money toward solving our drug addiction problems here? Honestly, I have no idea- Im hoping he has but I really have little faith in this man anymore.
Pornography is something that will never go away. I just don't get why our tax dollars have to fight this mans personal battles! do what is best for our state, not your opinion of what is best!
Sorry, that's my rant for tonight. I don't like this man, I don't like the things he stands for. I don't like being told I have no idea what I'm talking about, and I absolutely don't like being told by "someone who knows all" on this subject- that I don't get it...

Best Thanksgiving Ever

Over the years I have had some pretty great holidays and some really crappy ones... which led me to not ever want to celebrate any of them ever again. With November being such a miserable month normally for me, and memories of Thanksgivings gone by~ I especially hated this holiday.
But I knew some day that would have to change. My daughter is married now, I want to create positive memories, new traditions- things for her to smile about and share with her family.
So this year, having my in-laws living with us, my daughter and her new husband, my husband who has put up with years of me not wanting the holidays... I decided to make the best of it. We had little- ok, no money, I had no idea how we would make it happen, but I had to. For the kids- all of them. Thru the kindness and good hearts of others we were able to have plenty of food- all the mandatory Thanksgiving feast dishes! It was amazing. All the family, and the love, the smiles and happiness~ it really was an incredible day for me, and hopefully for everyone who was a part of it.
I had to work part of the day, so I wasn't here to help prepare much of the food... but I did help with some! First time ever prepping a turkey! Dinner was eaten late because of my working, but it was worth the wait! We had pies too!
I just can't explain the happiness, the love... how blessed I truly felt that night. I have a new family, and new tradition for Thanksgiving... for years to come.