Haven’t discussed this in a while

Hey there, kiddos. I’m going to write this with cold hands so beware of spelling and grammar errors. I have been avoiding really talking bout this for some time. I have been trying so hard to move on from it, I haven’t been confronting it.

So here we go.

I have only talked about my TBI a little bit because it’s daunting. The struggle is difficult to handle not only for myself but the people around me. It’s anxiety, chronic pain, loss of motivation, feelings of loss, memory and feedback problems, not knowing if I want to be out and about or if I want to sit on the couch all day. We can’t forget fight or flight. Since I’m not a fighter much anymore, I want to bail.

Poor Chris deals with this everyday. Luckily when we became friends nearly a year ago, he knew what he was getting into and still chose to make a commitment to me. He doesn’t necessarily take care of me but he has made my, um, can’t think of it but my life better. He has been extremely patient and so loving. But I feel bad for the guy. I guess I’m not too bad most off the time because he never sees the bad like I do.

Here’s an example. If you have followed my blog a while, you would know in July 2014, the guy I was seeing was killed in a motorcycle accident. I didn’t find out until a few days later, on Facebook. Because of all the losses, my anxiety sucks to be frank.

Where Chris comes in is when I haven’t heard from him. My brain goes into this absurd panic mode. He always let’s me know when he is safely at work and when he’s on his way home. (I had told Rafael not to be late for work and never heard from him again). Chris is amazing. I always have to apologize for asking if he’s ok. He never hesitates to reassure me.

The thing about the panic mode is it is messy on the brain. I start to wonder if he was in an accident so I start checking the news or Twitter to see if anything was going on. This is absurd! I hate I can’t control these emotions. I’m very blessed it doesn’t phase him at all. He tells me he understands and it is ok to worry. How did I get so lucky?

Since I have him now, losing him seems inconceivable. So many people have given up on me or bailed since this last concussion. I can’t lie, I know it’s hard to handle. He has stuck around even through the worst of it. He once told me to ask the VA if he could be my caregiver. I don’t necessarily need it but I saw he was in it for the long haul.

Now the holidays are coming around and my anxiety is so much worse. I haven’t happily celebrated the holidays in years. Now I’m always happy. I decorated our tree. I’ve been doing Christmas crafts. It’s crazy. I’m seeing a whole nother side of me, a way better side. I laugh and even giggle a lot now. Giggling! Me!

It was only a year ago I hated life, wanted to be single forever and didn’t want to burden anyone with this. Then he came along and I can’t imagine life without him. I used to hate being around people. I definitely couldn’t be around one person longer than a couple of days. Now I miss him when he’s at work. This is crazy.

Luckily we aren’t dependent on each other at all but it’s great always having my best friend when I need and want him.

A year ago, I couldn’t feel emotions. I would try to be sad and love but I couldn’t. For two years I was an emotionless robot. Now I feel everything.

With all that being said, I am nearly paranoid of losing him especially to an accident. We have plans. We have talked about our wedding, our home, how we would raise our kids. Neither of us felt this way before. I never wanted kids with my ex husband. I can’t wait to have a family with Chris.

I didn’t think it was possible to feel this way. We have rushed a few things but taken everything else at an old school, classy pace.

I mean, come on. When we went to the Avalanche game, the lights and sounds rocked my head. He asked if I wanted to go home and of course that was a big, “No.” Instead he let me lay my head on his shoulder while we watched the game, pushing his hoodie hood over so I had a pillow. He may seem like a tough guy but he’s my sweetheart.

This TBI has done a crazy number on my life. I always begged for a reason why it happened to me, a Soldier who loved the Army more than anything. Now I have my reason and now I love SOMEONE more than anything.

I’m raving about this so much because I had given up on a happy life. Everyday was fighting the urge to end it. Who wants to live like this forever? It’s painful and lonely. You see why so many athletes do it. It could be the brain disease or it could be the misery which comes from it. Few people truly know.

If you’re suffering, you can’t give up. I had to keep scheduling hockey games and concerts to have something to look forward to for years until Chris came along. They are a lot more fun now, with him.

There are people who may not understand exactly how you’re feeling but people who are willing to walk through the dark and light paths with you. There are things to live for.

Sometimes, some people and some things are worth baring the pain for. And they can even take it away. You just have to give them and yourself the chance.

That is all for now, kids. My hands are red and frozen. 🙂

Take care and wear a helmet!

Lots of love.

Holiday Happiness

Hello kids. I apologize it has taken me a while to get to you. As we all know, the holidays can be positively overwhelming. We have been busy.

We are anxiously planning for our Christmas trip back to his hometown to see his family. We had planned to see mine so they could meet him but since they decided to ignore anything I sent them for Thanksgiving, I decided not to. I’ve made all the effort. My sister was 40 minutes away and couldn’t even tell me. So I’m not driving 14 hours down there. I’ve learned family is people who show you they love you always.

On a way more positive note, we are visiting with my dad (ex father in law) Sunday. It’s super great when they are excited to see each other. That’s family. We always make an effort to see each other even if it is only for a little while.

I’m going to depress you a little bit right here but I promise to bring it back so hold on tight.

Not long ago, an Army buddy of mine was arrested for killing his wife. Many of us have tried to pick it apart, justify it. Maybe it was self defense, maybe he snapped. Unfortunately it isn’t looking good either way.

Here’s the thing. A lot of us saw him as a hard ass NCO but a good guy. I remember when we were doing an exercise and he could have shot me in the back. Instead he tapped my shoulder, told me I was dead because my rear security all ran away. Good looking out for your NCO, Joe. I also remember the time I got super drunk and went swimming, in my clothes. We all went up to our room and I couldn’t stop shaking. I fell asleep on the couch. He got a ton of blankets and covered me. He didn’t just cover me, he tucked me in. That’s the person we saw.

I try not to think about it but I know many people we care about have dark sides we don’t see. I never thought my friend would kill himself because of how much he loved his son. Unfortunately, he did. We can’t always see it. Sometimes they wear their masks well. I like to think it was self defense but I know I may have to come to terms he snapped and actually murdered her, some day.

For a long time, I had my own dark side. I’ve been blessed with Chris because I have nearly no dark days anymore. Yes, I get mad, sad; but I’ve also found extreme happiness. I never thought I would be able to remove my mask and be myself. I’ve removed the happy mask but where a frown used to sit everyday, sits a smile.

It’s not easy to admit when you have a problem and need help. Some people don’t even recognize they have a problem. I saw how I was feeling was not the person I used to be. I have worked hard to change it. Life isn’t perfect. It never will be. However, I am making it better.

I have had the last discussion with my neuropsychologist for a while. I told them until we have a team meeting, I will not continue treatment through them. I’m still waiting.

The headaches come and go, some worse than others. Last night, we went to an Avalanche game. This brings me so much joy. If we are having a bad week and watch hockey, it’s like the bad week didn’t happen. My team may have lost but I got to see my favorite player score so it was a win for me.

The downside was by second period, my head hurt badly and felt fuzzy. The life of multiple concussions can ruin even the grandest of things. The flashing lights, the loud sounds and the quick movements of the puck and the players racked my poor brain.

I’m getting my ears retested on Monday. Hopefully we can figure out the tinnitus thing. I’m getting more anxious to get some resolution to these headaches. I’m taking 16 credits next semester.

I am really excited because they are classes I know I can excel in with a little help. I want to accomplish so much but feel as if I am still being held back by this. The story of post concussion syndrome always going away can’t be right. We are nearing on year 4 of this madness.

It’s annoying not being able to remember common words, messing up letters and words. The stuttering, oh how the stuttering gets old. Chris tries so hard not to tease me but can’t stop himself at times. I don’t blame him because I smile. I am normally smiling though, because it’s better than crying every time it happens. The teasing does make me sad at times however. He knows and that is why he has gotten better about it. But if he has to fight it, how am I supposed to give oral reports and not be terrified?

The many questions that keep running through my head. I try to stay positive about it though. Today I read a fabulous quote from Nietzsche, “The advantage of a bad memory is that one can enjoy the same good things for the first time several times.” Brilliantly positive.

Here’s the thing, I don’t even remember what Duchene’s goal looks like now. I know Chris didn’t think it went in but I was already up screaming. I forget so many little and BIG things. I was once told it was because I am aging. I’m barely over 30!! You don’t have the memory of a 70 year old at 30 without something going on neurologically.

Enough about that. It’s a depressing subject. Time to move on to something more positive.

The other day, we had a bad day, just a lot was going on. He had a rough day at work and I didn’t feel well. So I made us dinner and we went out to look at Christmas lights. In doing so the conversation turned to wanting to do our own yard next year. That conversation led me to say, “I want to buy a house by next year.” We had been tossing around the idea for some time. Now it appears we are more serious.

With thoughts like that come thoughts such as, “Wait. Can I work?” “Will I be able to financially do this when I struggle with my schooling and job?” I’m not really sure but I do know I have to make it happen. I don’t know how but it is now my new goal.

I had to toss the thoughts of being a police officer or even going back to the military. Now I have no idea what my future holds. I just know I want us to share a home we can call our own, very soon.

Well kids, it’s about time to call my walk done. I have an appt with my amazing speech pathologist here in a little bit. Hopefully my next blog will render good news of three different things. I cant give a lot of detail yet but I will say one has to do with brain retraining and one is maybe the possible use of one of my photos. Exciting!

If I can’t get back to you until after, have a Merry Christmas and Jolly Holidays.

Be safe and for goodness sakes, wear a helmet! 🙂

Take care, kiddos!

What people don’t understand

Hello my lovely readers. I apologize for not writing you in some time. While I could make a million excuses, we know if you’ve read my blog over a period of time, this happens now and then. The past few weeks have had their ups and downs, sometimes extremes. This is the life of living with this I suppose.

Anyway, I hope this blog is informative. I believe people try to understand and treat what they know yet don’t listen thoroughly making it difficult for them to truly understand. This leads to conversations, meetings and appointments only going in circles which to be quite frank, I am pretty darn tired of.

I’m nearing on 4 years since I suffered my TBI. Still, anytime I approach about ongoing symptoms, I am told it is stress and/or PTSD. Right now, I am putting it all out there. I’m not holding anything back which I have apparently been doing.

This all stems from what was supposed to be a meeting with my WHOLE TBI team and Chris. He was supposed to be able to talk about what he sees daily and how things are at home. It did not end up that way. Instead, he was lead into saying things against me and not on my side. I was not angry at him. He tried. Yet it was put in his head over and over again, it is all stress/PTSD related. It didn’t help 2/3 of the team was not there because let’s face it, I doubt they want to see me. I understand things come up but things seem to always come up. I wonder if they are just pissed someone is fighting them. And that is fine with me. I’m tired of fighting and trying with them when all they want to do is medicate. Medicating fixes nothing; it only covers pain and symptoms. This leads to medication dependency, depression and who knows what else. I will not be a part of that any longer.

If they refuse to see me and work with me on finding results or other alternatives, then that’s on them. They do what the VA allows and refuse to look outside the box or send me somewhere who will work with me.

I’m getting off track. I explained what happened with the meeting above. In the meeting, I was getting red hot. It took everything I had not to flip the desk and walk. If it was not for Chris, I may have. He would try to have my back and I would try to speak up for myself. Yet we were interrupted and he was lead into being manipulated against me. This will not stand. It isn’t fair to him or anyone. He had tried so hard but was walked all over as was I. How are we supposed to learn to accept this life and live with it if no one listens? I was screaming internally. All I have wanted all this time is for someone to hear my screams. Needless to say, we walked out of this “team” meeting with zero results or help. Instead we were told I should do the same crap I’ve been doing since I first saw them and let’s see, take more meds. This is unacceptable for people who are fighting to have a normal life without medication and who is not abusing the system. This is just another example of the VA failing veterans and patients.

Veterans and service members’ lives matter as much as anyone else. We will take bullets or gunner’s hatches to the skull for people. We go out of our way, risk our lives and the VA refuses to look outside the box to help service members.

I’ve kept my mouth closed because I worked for the VA and I’ve tried to have faith in my team. But after the meeting, I realized this is getting nowhere and they truly don’t listen. People wonder why veteran suicides are so high, look at what they come home to. Support is close to nil. Its whatever the VA/government wants and that’s it. If you can’t afford outside care, you might as well kiss any support on picking up your life and fixing it, goodbye.

When Chris and I walked out of the meeting, we drove and walked. As I drove with tear-filled, red, puffy eyes, I couldn’t tell if I was crying because I was heartbroken or angry. I’m blessed to have a true supportive gentleman behind me. I let loose everything I was feeling that I wasn’t allowed to say during the meeting. I tell you now.

My headaches aren’t always caused by stress, reading or writing. While they take their toll, they aren’t the only things causing it. Want to know how I know this? Because despite wanting to flip the desk and walk in a fit of Hulk-like rage and reading and writing in class yesterday, I DIDN’T HAVE ONE STINKING HEADACHE! As I’ve told them before and as Chris tried to tell them, they are either there or they come and go. Sometimes they are gradual going from a 1-3-5 or they can shoot from a 1-8 in an instant. This is what they aren’t listening to. And they aren’t always migraine headaches. Sometimes they are, heck, probably most of the time. Yet sometimes they still hurt where I was hit. Sometimes I feel like the sides of my head are being crushed by a vice. Let’s not listen to the person trying to explain what they feel though. Many times, I wish they could suffer multiple concussions so they could experience what not just I, but other vets go through.

There was one thing I was told which set me off completely. I don’t remember what it was but it’s probably good I don’t remember. I don’t understand how people could be so blind and/or just refuse to look into something. Yes, my MRIs come up clear. Anyone who truly studies concussions/TBI know that’s the case 80% of the time. It doesn’t mean there is not other imaging out there. But wait, it’s all the VA does and of course, will not send people out for further research or analysis.

I’ve tried telling them a million times how I felt. I tell them I still have memory and recall problems. I’m told I did well on the testing. Of course I did. I’ve used a computer since kindergarten and picking colors and numbers is easy. Give me a story to read or information to recall and my mind is empty. We tried to tell them I’m still clumsy. Ok so nothing is wrong with my ears. That’s great. Want to make a more difficult test than walking around a shoe? Try having me walk through a doorway where I run into it. Or watch me get into my car and watch me hit my head every time. The only time I can clear a door is a giant truck. Even Chris has noticed something is off.

The orb in my eye ball is nothing. My vision is close to perfect as the opthalmologist doesn’t see it. Great. Tell me why it’s been there a year now and doesn’t exactly follow my eye movements, it’s slower but I see it. The 24/7 tinnitus and floater makes me crazy. Yes, music drowns it out and I can live with it. It doesn’t mean it doesn’t make me want to stab my eardrums with a sharp pencil. That’s if it is inner ear at all.

I’ve been sleeping great, pretty hard actually thanks to pain meds. With no pain when I lay my head down, I can sleep. It’s the only reason I can’t sleep. Yes, I have nightmares but what normal human being doesn’t?

With that being said, I do not need to rehash what happened to me growing up. Yes, I was raped, sexually assaulted, beaten, almost murdered and abandoned. Guess what? I’m ok, really. Yes people who have had those things happen, have turned out to be horrible people. I did not. I became better because of it. I knew I was not going to let it run/ruin my life. Yes, sometimes I have bad dreams, sometimes I have bad days where I stare into space. However, I grew up to be successful in the military, school and my personal life, until I suffered this head injury.

I’ve been told repeatedly it cracked the memories open like an egg. It may have. But the memories aren’t what is messing with me; it is the blasted headaches and symptoms from getting hit. I’ve been told I need to talk about these things so I can get through them. I have gotten through them. I’m not repressing anything. I’ve emptied my mind and soul on here, to neuropsych and Chris.

There’s a difference between repressing and moving on. I’m told all the time these are stressors in my life. Here’s the thing, they really aren’t. I have used my life experiences to make me a better person, help others. It does suck they happened; but I could let them control my life and keep me depressed all the time or I can think about them and think about how I survived them. I’m not a victim. I’m a warrior. I’ve survived more than a normal person should have in 32 years. I have a great boyfriend and goals. Why would I let my past ruin that? Why do I need to open up old wounds only to truly suffer from the PTSD to the max? I’m going to have good days and bad days as we all do. My life will never be 100% but I’ve accepted that and so has Chris and he has stated a million times despite my numerous efforts to push him away, he is not going anywhere. So please tell me why I need to talk about things which will only put me in a bad place. How about letting me move on positively? If I have a bad day, I will talk about it. If I am having a good day, why ruin it with reliving my insane childhood when it could potentially not only ruin my relationship but me?

It’s bad enough I have some emotional barriers because of it and I’m going to most likely live with these headaches forever. Don’t make good days bad or bad days worse. Here’s the thing, my head could be hurting around 8-9, yet when he allows me to lay my head on his lap, I’m still the happiest I’ve been in years. That’s a good thing, right? All I need help with is the blasted headaches so I can go to and enjoy school and work a job I will love to support our family. Why is that so much to ask for? I’m ok with the not perfect life but it should as close to it as possible. Happiness is what gives us long life. Anxiety and stress only raise the chances of suffering heart attacks or strokes. I don’t want that. For once in my life, I want to have kids and grow old with my love.

I’m sorry if that was depressing kids but it had to be said. I do not know at this time if I will continue trying to talk the VA into actually giving a crap. I may take a break. I may just say screw it, refile comp and pen and try to have the best life possible. While I would rather have no injury, no comp and pen and the career as a cop, it doesn’t seem possible, not even in the distant future. So here is to living the best life possible with the one person who truly loves me through thick and thin, good or bad, sickness and health, as I will him forever.

I will still participate in TBI activities where I can continue to help others but only time will tell if I will continue seeking help myself. Helping others brings me happiness and as good of health as possible. Wallowing in my own sorrows leads to nowhere.

Well there’s that. All my readers, you are wonderful and I always look forward to and anxiously wait to write you.

I hope you all have an amazing Friday and a beautiful weekend.

Stay safe in all you do and live every day as if it were your last!

XOXO

Music and the soul & mind

Hello my friends. I hope the week greets you well and you enjoyed the weekend. My weekend had its ups and downs as life hands us but nothing too crazy. Saturday I did some graphic design you’ll see later in the blog while Chris golfed. And yesterday we enjoyed a quiet day at the batting cages and resting at home.

You’re probably wondering what could I possibly be blogging about today then (shh, hint in the title).

Yes, let’s talk music. I’m not going to talk about music people like and dislike or Kanye’s political role (which we all know he meets ZERO qualifications to be president). I’m going to talk about what music does for our mind, soul and our physical bodies. Bear in mind, I am no doctor (could you imagine, haha). I am basing this on how it has made an impact on my life, research and readings. Please feel free to comment and have some dialogue with me if you would like.

I’m going to start with a conversation between Chris and I this weekend. Anyone who has read much of my blog knows I love philosophy. This gentleman had the perfect philosophical quote to add to my collection.

“Famous neurologist and author, Oliver Sacks passed away today. Chris asked me today how could I remember song choruses but I could not remember simple words (and stammer when trying to find words). I didn’t know how to answer. I do believe Dr. Sacks knew how to word it for me,”Music can lift us out of depression or move us to tears – it is a remedy, a tonic, orange juice for the ear. But for many of my neurological patients, music is even more – it can provide access, even when no medication can, to movement, to speech, to life. For them, music is not a luxury, but a necessity.”

(The notes are from the beginning of Jim Brickman’s If You Believe).

Dr. Sacks wrote the book Musicophillia talking about the science of music and the brain. I have not picked it up yet but I plan to do so very soon.

Now I shall share my thoughts with you.

When I was but a wee little tyke, I wanted to be a ballerina. Yes, this tomboy wanted to dance. If you know my childhood, you know it was only fantasy. Thing is, that doesn’t matter. I had the Nutcracker music. When my mother was a good mother for those 15 minutes, she would lay pillows down all over the living room and crank classical music for me. I would get as high as I could on my toes, leaving me at about 3 foot or so. I would twirl and twirl until I made myself dizzy, hence the pillows.

I took some piano at 8 years old. However my learning did not go far. I do have hopes to get back into it someday. I always loved music. If something bad was happening, it was my happy place.

At 14, I got my first Jim Brickman CD. I begged my mother for a cheap keyboard. Listening to him play the piano was like HEARING magic. I never got that keyboard but it’s ok. I had his CD and would move my fingers to his key strokes. I still do that now even if they aren’t the perfect notes. I’m always moving my hands to his music.

On game nights with just my mother, we would have the music loud and I had pens or pencils in my hand, drumming like I was in an 80’s hair band.

When the ex-spouse deployed, music was there. When depression put me in the blackest of places, music was there. Long drives driving my humvee or a van full of Soldiers, music was there. Music has always touched me although I had not much experience in it myself.

Things changed after my TBI. Music wasn’t just important anymore, it’s what kept me waking up and falling back to sleep each day. Even now if I do t have my ear buds in, I’m either with Chris, driving (then it’s coming out of the car speakers) or there is something seriously wrong.

I listen to it all, classical, oldies, rock, rap, whatever is appealing to my ears. The MRI techs at the VA once told me I had a strange taste in music. If I’m correct that is because Cher, Meatloaf, Godsmack, Elvis, Luke Bryan and maybe Pavoratti played while I laid in the giant magnet.

Music keeps my mind away from negative thoughts, from going too fast, I can’t stay on a single topic. Music allows me to write freely and open my imagination. It tones out the never ending tinnitus which sounds like the emergency broadcast system that never goes off. Music allows me to be me no matter the headaches or moods.

I’ve been known to go on long drives. I will burn through every song on my iPod. I have even smacked Chris’ hand for touching my radio in my car because he hates the new country and Luke Bryan is my imaginary other boyfriend. I told him his car his music, my car my music. No wonder he likes to drive; or it could be the accidents I’ve been in. 🙂

When I’m writing these blogs, I am at my favorite park walking around with the buds in my ears. Fret not, I keep it low being cautious not to damage my hearing anymore. I’m sure people are tired of me saying, “Say it again” as much as I do as it is.

To me walking and listening to music allows my thoughts to flow freely with no blocks or distractions. I can get it all out and I know what I write is truly how I feel and I’m not missing anything. Music and writing allows something talking does not. I can talk without studdering, stammering and veering off because I can’t think of words. Speaking aloud terrifies me especially if it’s with a stranger or in front of class. Maybe one day this won’t be an issue.

To me, music is more than melody and sound, it’s my peace.

Dr. Sacks

Well that’s it on the music side.

Now a few random thoughts of the day.

Just because someone isn’t financially ahead because life took a scary turn;  doesn’t mean they will take something which is not their own. It seems the person trying to get their life together makes an easier target so someone who’s life is magical when something is misplaced. It was found to be only misplaced.

I have the opportunity to receive compensation because of what happened to me. This is, despite attempting to get ahead since I did leave my job for knowledge, does not mean I should get compensation for something that happened to me.

Here’s the thing. To a person who has only suffered such a thing, it can run their life. For many it is the most devastating thing which could ever happen. DO NOT think I am dismissing it as important because I am not. No one should ever go through such horrors. The criminals who do so, should suffer slowly in my opinion. All I am saying is that for me it was lime stubbing my toe compared to being hit by a bus. When you’ve almost been murdered, your mother has abandoned you and it’s not the first time it happened, you learn to not let it control your life. If you do, you’ll suffer forever.  For me, I would rather help those who suffered from the same thing, help them see they aren’t alone, show them they can still be happy and successful. I’m still working on my success but I know it is possible.

Life plays tricks with us. Some people have perfect lives. Other people suffer trauma and tragedy over and over again. To me, I’m not a victim. I am a warrior. I have a lot of madness going on in my life and I am a very unlucky person. BUT, I won the love lottery and he knows it. I can’t imagine being anymore lucky. He has my back and I have his full support and love. With all of that, my TBI team and the TBI Freedom guy, I know my luck will continue to turn. It won’t always be sunny. Some days will be stormy. But that is when I throw on the rain boots, sing in the rain and splash in the puddles.

Life is too short to dwell on the negative. I saw this today and it is so true.

I can be angry at the things and people which and who have hurt me or I can learn from it and make the best of it. I’m making the best of it.

I think the thought process there is why I’m always trying to learn so much about not my tbi alone but tbi overall. I’m very interested in the science of it. It’s why I always ask my team so many questions. It isn’t because I am trying to annoy them and want a perfect life; it’s because it is so interesting. The brain is a complicated yet fascinating part of us. Heck if I wasn’t so old and my interest was more law, I would probably go into neurology, maybe in my next lifetime.  It’s the same reason I have many tbi books. I’m not only looking for answers but knowledge.

Alright my friends, my battery is running low and I like to save it up for my love in case something comes up. I wish you all a magnificent week. If you ever want to chat, you can follow me on Twitter under the new name Kadberie (Kadberry is Chris’ nickname for me).

Also, take some time to do something fun. We are in the middle of a prank war after he attacked me with vanilla whipped cream last night. Life is too short to not be a kid now and then. It’s ok to be an adult when it comes to clean up time.

Be safe and wear a helmet. Find peace. Until next time, my friends.

Lots and Lots to tell you

Hello kids. Welcome back. I have so much to tell you. Be prepared to laugh, cry and possibly throw things in my general direction. Also, you made need to grab some coffee or a Monster or something to keep you going. This may be long.

As most of you know I just returned from vacation with Chris. Yes, we made it back and he didn’t have to take me to the hills and leave me there. However, we did go over some mountains, or one mountain a few time . I can’t remember.

Our first day was the 14-16 hour drive. Woof.

Second day we went to the river. This was amazing and an adventure. It was so peaceful just lying on the bank with my feet in the water while he fished. Then I found gold! Ok, so it was just fool’s gold but it was the first time I had ever seen it so it was exciting.

 
When it was time for us to hit the rocky trails back, we saw a bunch of guys leave what we thought was a blocked off area. We go back there after seeing smoke. These crazy fools had left a huge bon fire and the dock on fire! This was where Chris grew up! So he put 20 gallons of water on everything and we tried to suffocate everything else. I took 30 photos to take to the police. We did such after catching up with them and grabbing vehicle descriptions and license plate numbers. Sadly, we were dismissed because it was out of their jurisdiction. But we have family helping us now to catch the guys. We know if we hadn’t caught it, with how dry everything was, it would have been a forest fire. Thank you Smoky the Bear for reminding us only we can stop forest fires.

Ok, so the next day we went to a different part of the river. As we were about to leave, we saw 8-9 big horn sheep coming down the mountain face! He handed me the binoculars and we watched in awe until they were out of sight. I smiled from ear to ear. I had never seen them outside of a zoo. It was an amazing time to share with him.

So now I think we are on day 4. This day we took one of his nieces and his nephew up to the river. Yep, third day at the river. And yes, I have a pretty sweet tan now. Lol. While his niece and I skipped rocks, the boys built a giant sand/rock castle. The best thing was when Chris went to do something, his niece and I helped his nephew. When Chris returned he said,” You can go back to throwing rocks now.” He is 3! I laughed so hard. Kids do say the darndest thing . Lol. I love it.

Now the next few days were kind of a jumble but amazing all the same. Chris and I spent our last few nights at a hotel/casino. It was so much fun. I gambled for the first time and lost everything. Luckily he picked up what I lost. He has amazing luck. I, on the other hand have never had luck until I met him.

These days consisted of him having father/son time golfing with his dad. I rested in the room and lots of time at the machines in the arcade. I learned… he beats me at everything. Ok, seriously never go near a casino with this guy. He can’t lose at anything! Lol.

I also… met his family, well a lot of it. I met one of his brothers and his daughter, I met an aunt and cousin, one of his super cool uncles, his gramzy and then HIS PARENTS! I was terrified. He had put it in my head his dad may tease me a lot. However, the completete opposite happened. His mom and I hit it off quickly being the ladies in his life.

When it came to meeting his “Pops,” it went great. Because I was military, his brother is military and his dad is super military supportive, we hit it off. We had some serious one on one time laughing and almost crying. In such a little time, there was a bond.

By the end of the trip, I had two “Welcome to the family”, gramzy’s seal of approval and his uncle saying he had a wonderful time spending time with us.

It was amazing!!

Unless you have read a lot or all of my blog, you probably know I have a very tiny family and it’s a little strange. To recap, I have my daddy (who is my bro and sis’s dad, not even mine). I have my sister (same mother), her son (my sweet and amazing nephew) and his wife. Then I have my dad who is the ex-husband’s dad but who has never seen me as anything less than his blood daughter in 11 years. I’ve been divorced four of those and I still see him more than his own kids. While my family is tiny and different, I love it. However, it leaves me in a weird place now and then.

I have no idea what a big family is like. I also don’t do well around people and meeting so many people. It was interesting and terrifying. However, instantly I felt bonded to my new family. Everyone was so open and fun. They were very welcoming and courteous. I am truly blessed I must say.

Well, we got that all out. Now the part where you may want to throw things at me but sadly it must be added. This is the TBI side where people need to reecgonize things which happen now and then. Luckily, Chris was amazing although I wouldn’t have been so probably.

I have not been too open about this in fear of what others may think of me but I am going to clarify some things first. Chris and I have discussed this all. We are taking it on as a team. We are partners in crime. We are also going to have a meeting with my TBI team to maybe get a clearer diagnosis and better ways of treatment since they will be able to HEAR from him what he sees and experiences with me. Here we go.

As some of you may know TBI affects behaviors and moods dramatically. You may be able to see that in my different blogs. This unfortunately is why I chose to stay out of relationships these past three years. I will say though, I have A LOT more good days than bad days now. I give him most of the credit, my VA team gets a lot too. Thing is, when I have bad days, they are BAD whether it be from pain or just uncontrollable mood changes.

A few times, I freaked out, over little stuff. Like I know that’s normal sometimes because I’m a woman but it was different. Since I have abandonment issues, when Chris left me alone once, I lost it. If I misread or we miscommunucated, I would freak out. Thing is, that’s why he likes me. I’m normally not like that at all. He knows I only do that if I’m not feeling well, I get uncomfortable or my anxiety is up.

Here’s the extreme downside. My fight or flight reflex kicks in. And since I’m not a fighter except when it comes to my health care or the police process, I want to run. I don’t want to run because of him but because I feel like a horrible person when I get this way even though I know it isn’t me. So I told him like 3-4 times I was breaking up with him. It wasn’t until we talked when I could see this is actually more painful for us than fighting through the hard times together. Luckily although I am not great at fighting for things and talking things out, he is. He is a master at it. And we quickly resolved any issues which came out with no festering.

We have decided if I freak out, I will take some me time, gather my thoughts and talk about it with a better head on my shoulders. I won’t run away but take some time. Also we will try the hug-right-away thing. So we have some options and we are taking steps. It also helps we are going to try to meet with my team together so hopefully we can find even more ways. So far, this is all working well for us.

I hate he has to go through this with me but I guess that’s how I know I have a real man who truly loves me. He sees past my bad days and only sees my good one . He never brings up past arguments and he learns with me. He says the good days make up for any bad days. I like he sees me for who I really am and not just the weird person I become for 30 or so minutes on a bad day. Plus, it doesn’t take much for him to cheer me up.

He is the most positive person I know which we all know I need in my life. He has been known to make me giggle like a five-year-old and melted my heart when he said he didn’t know what he would do without me. I’ve never felt so comfortable with anyone. And I love who I am with him. It’s like the old me but better. By doing things for him, us, our home, any stress or depression goes out the window. I know it may seem silly but I love cleaning and cooking for us. I love doing things he needs help with. There is this overwhelming sense of accomplishment and fulfillment I haven’t had since I served. I can honestly say I don’t remember the last time I was so happy.

That my friends is why I am willing to fight now. Fight for the good. He doesn’t make it a hard fight though. It’s more my inner demons I have to scare away. But we are doing it together and it is amazing. I promised him I would treat him like my king and never hurt him and I plan on keeping this true with all my heart.

Want to know when you know it’s just right? When my head hurts between an 8 and 10, my eyes are watering, I get nauseous when I lift my head; he puts my head in his lap as he combs his fingers through my hair and I finally sleep. I mean I feel bad for the poor guy since I drool and shake but dang, I SLEEP!

Ok, kids. That’s all for now. I have more to write tomorrow but it’s time to head home and cook us dinner. He does most nights because he loves cooking but tonight is my night. Woot! You all take care and have an amazing evening. Keep your eyes open tomorrow.

Be safe and always wear a helmet. 🙂

Taking a leap of faith into a new adventure

Hello there my dear friends. Be prepared for some exciting news. I have taken a major leap in my life (well a few).

I have officially left my job at the VA. After nearly 12 years of military/federal service, I am taking a break. I have been accepted into a local university, one of the few with an Art History program. 

This is a scary leap to take but I am excited about it. After attempting college 3 or so times since my head injury, the fear of failure of course lingers. However, with little to no distractions with work and the classes being in class lectures instead of online, I believe it will go quite well. I’m very lucky to maintain the support of my speech pathologist and my neuropsychologist. 

I know there will still be good and bad days with the headaches and nausea and maybe even a little anxiety, confusion and memory loss. The fantastic thing is the college has fantastic support for veterans especially ones with TBI and/or PTSD. I can get a note taker if I have to miss class, can record my lectures and can get a tutor as needed. I do believe I will be successful without using the resources in excess. 

It’s scary since I have financial responsibilities and I know the GI Bill can go a whole without being paid but I’m hoping to get a head beforehand. It will be different going from a normal work routine to a new routine of commuting 2x a week, class, homework and exercise but I see it as a fun new routine and possibly a better chance to heal peacefully instead of overwhelmed with stressors. Don’t get me wrong, I know four classes will be stressful but I also know I am in control now. I don’t have to follow anyone else’s agenda. Although, I must consider I am no longer one person. 

I am not going into this alone. I have my amazing teammate, my partner in crime, my loving boyfriend by my side. While our schedules will be different and distance will keep us apart at times, we are making a fun leap together also. 

As we leave on vacation tomorrow, we also will be thinking about our life when we get home. Yes, our home. We have mutually decided I will be joining him in his home (our home) permanently upon our return. This is huge considering we both had the same life before each other. We never thought we would be taking such a big step but we are and we are going to do it as a team like the Red Wings he loves. 

I was worried at first. What if I had a bad day? Should I really put this TBI on him? But he knew he was getting involved with before we even met and that makes it exciting. He has been very supportive on decisions with my care and has helped me make a lot of decisions. He has also helped me recover immensely by being such a strong support system on his own. I can honestly say this is the happiest I have been in over three years. My bad days come less and less. 

Now I don’t want my friends to think I have forgotten about them but there is something I must admit. While many have been generous in sharing their roofs with me and allowing me to call them family, it felt as if I were just couch hopping this whole three years. My docs had told me they really didn’t think I should live alone but I needed to feel like I had a home, a place where I could take solace in knowing I am an integral part of keeping it together, embracing the reaponsibilities. 

While most hate bills, when your mother is a user, you want to be independent, take control of your own life. I have not been able to do that in three years. Every time I tried, something would fall apart. NOW I feel like this is home. He often reminds me it is mine now also. It doesn’t feel like I am just couch hopping. I do dishes, I clean, prepare meals and help maintain OUR home. It’s wonderful feeling like I am finally where I belong after so much time. It feels freeing. And I am blessed knowing he has made me a large part in his life by inviting me to share it with him. 

I know I will have my rainy day; but I finally feel like I’m in the open field where I am covered by sunlight until evening. And in dark of night the fireflies swirl around keeping my life lit (all I have asked for other than good health these past few years).

I feel at peace and like life is going in the right direction now. 
With that my amazing friends and readers, I must put this to an end for the day so I may continue packing. I wish you all well and please be safe. 
Lots of love. 

How to live with someone with TBI or ABI

Hi kids. I am sending a quick post out for very important information. Hope you have an amazing weekend!

So the Brain Injury Law Center posted this amazing article on how to live and/or care for someone with a brain injury. I am sharing the link and adding the article.
http://www.brain-injury-law-center.com/latest-news/guide-caring-brain-injury-victims/?utm_source=social&utm_medium=twitter&utm_campaign=repurposed-blog

A Guide to Caring for Brain Injury Victims

Last year, the BBC released a scandalous film that highlighted the poor care to which brain injury victims are routinely subjected. Audiences were aghast to see health care workers in their own national healthcare system treating rehabilitation center patients with carelessness — at best — and often with actions bordering on abusive. Safety procedures were ignored, hygiene was neglected and, in at least one case, doctors’ orders were directly violated.

The film was made by the spouse of one
brain injury patient whose concerns over her partner’s well-being were repeatedly ignored. Rather than give up, she installed a secret camera in his room. Among other things, the footage showed a health care assistant cleaning the patient’s stomach tube with the tip of a pen, and giving him drinks of water even though he was supposed to receive nothing through the mouth.

The film brought much-needed attention to the plight of brain injury patients in Britain’s National Healthcare System. But it also shows the awful effects that ignorance and lack of care have on the well-being of a victim of brain trauma. Even those who are surrounded by a loving support system can suffer due to a family’s lack of information or assumptions about their condition.

In addition to helping brain injury victims get justice and legal resources to improve their lives, we at the Brain Injury Law Center want to help our community with resources for learning what to expect in this new chapter of their lives and how to offer the best possible support to a loved one suffering from brain injury or trauma.

Here are a few of the things we’ve learned.

Know What to Expect

Every brain injury produces different results, and thus every victim of brain injury is unique. However, here are some cognitive and physical changes common to most brain injury situations:

• Shortened attention span
• Memory problems
• Problem-solving difficulties
• Poor judgment
• Partial or complete loss of reading and writing skills
• Language problems, including communication deficits and loss of vocabulary
• Inability to understand abstract concepts
• Difficulty learning new things
• Weakness
• Muscle coordination problems
• Full or partial paralysis
• Changes in sexual functioning
• Changes in the senses (hearing, sight, touch, etc.)
• Seizures (also called traumatic epilepsy)
• Sleep problems
• Speech difficulties

In addition, the personality of a brain injury victim frequently undergoes a change, since the brain is processing stimuli and information differently than before. Here are some behavioral changes that may occur:

• Difficulty with social skills
• Inability to empathize with others
• Tendency to be more self-centered
• Inability to control one’s emotions
• Increases in irritability and frustration
• Inappropriate and/or aggressive behavior
• Extreme mood swings
• Depression (individuals with TBI are considered to be at a high risk for depression)

Self Care

Your brain is the command center of the rest of your body, not to mention your emotions and, obviously, your intelligence. You wouldn’t rush someone who had broken their leg or suffered a gunshot wound; it’s equally important to give a brain injury patient time and space to heal. Caregivers should also encourage the patient to give himself or herself that time and space. Victims of brain trauma frequently get frustrated with their inability to heal faster. Encourage your loved one suffering with brain injury to do the following:

• Get lots of rest.
• Avoid doing anything that could cause another blow or jolt to the head.
• Ask the doctor when it’s safe to drive a car, ride a bike, play sports or use heavy equipment because reaction time may be slower after a brain injury.
• Take prescription medication according to the doctor’s instructions.
• Do not drink alcohol or use street drugs.
• Write things down to help with memory problems.
• Ask the doctor to recommend rehabilitation services that might help recovery, and follow those recommendations.

In addition, you as the caregiver must take care of yourself. Your loved one needs you to stay healthy and monitor your own well-being, in order to receive the best care possible from you. Family Caregiver Alliance puts out a wonderful fact sheet on self-care for family caregivers.

Don’t Go It Alone

Several resources exist, both locally and nationally, for the caregivers of brain injury patients. In addition to support groups and advocacy organizations, Caregiver.org is replete with answers, advice and suggestions for where to find compassionate company in your situation.

The team at the Brain Injury Law Center is among this group. We are people who understand what you’re going through and are committed to helping you recover your life when a family needs legal assistance after a brain injury. Call us at (877) 537-4340 for a no-cost, no-obligation consultation, or fill out the Free Case Review form on the right side of this page.

– See more at: http://www.brain-injury-law-center.com/latest-news/guide-caring-brain-injury-victims/?utm_source=social&utm_medium=twitter&utm_campaign=repurposed-blog#sthash.DPoBa0mX.dpuf

Everything we have done and an UPDATE

Hello kids. I’m hopping on to clarify some things. Everyone always wants to help and asks, “Have you done…?” The answer is yes. I’m not upset; I just want to clarify because answering the same questions all the time is getting exhausting.

No matter what has been brought up, we have tried it. That’s why I keep pushing for answers. So here are all the fun things we have attempted.

When I first got hurt and finally went to the doc, they did a CT right away. Came up fine. They knew I had a concussion right away and I started doing manual, physical, occupational and speech therapy immediately so I could still get on the bird to Afghanistan.

I was sent home which was why/when I started this blog originally.

I received pretty much zero help for a while. I had an MRI done with no contrast closing on a year after I was hurt, it came up fine… Of course.

I went to neuro so many times and was told it was just PCS (post concussion syndrome).
I was still symptomatic for a long time and I kept fighting. After multiple suicidal ideation issues which I knew were not normal for me, I reached out to anyone who had experience in the area even outside the VA. After going to the VA patient advocate, I was finally put with a TBI team.

At first I saw the DO and poly trauma psychologist. The psych helped with the PTSD, anxiety and depression. The DO was supposed to help with the physical aspects of the injury.

We tried nerve blockers in the area of the head where I was hit and botox for the headaches.

Because I have a floater in my eye that has stuck around, I was sent to ophthalmology where they didn’t see it and said my vision was fine.

I was sent to ENT for the tinnitus. My hearing was meh but survivable; and there was no damage to the inner ear causing the vertigo and tinnitus.

I told them about the shaking and the other odd symptoms. It was chalked up to other side effects or “stress.”

We have done balance tests over and over. I’m good.

I have neurology Wednesday which I really don’t want to go to at all. I’m so tired of hearing nothing is wrong and everything is fine. I can’t wait to get there to tell me it is still PCS and I have to live with it for a little longer or forever and they can’t tell me how long.

I have ENT again in a couple of weeks. This because my hearing in my right ear hasn’t been great. Supposedly, this is supposed to help figure out why. $20 they blame it on aging.

I’m going to be honest and be prepared for curse words.

I’m not a doctor but I’m not a dumbass either.

When you can’t do shit for days, all your energy gets pinned up and needs to be expelled. I normally do that by getting tattooed, driving or going to the batting cages. I haven’t been able to do any of that this week. When the energy builds and it has no place to go, it’s like a volcano ready to explode. Needless to say, I’ve been very angry and anxious especially the past few days.

I don’t give a shit about money or anything else. I want to get better. If I’m not going to, give me some closure so I don’t lose my loved ones or spend my nights hugging a bottle.

Learn with me. I know they aren’t used to dealing with my specific brain injury. The fuck protocols and the damn books. Let’s look into it and try to figure out what the hell is up. WHY is this too much to ask? Would you prefer I take the damn money, live on a mountain somewhere, hating the world? I want to be a damn cop! I don’t care about money. I care about having a good life, healthy, even if I am living paycheck to paycheck.

I want to be normal again!!

My primary doc who has been amazing put me in for a new MRI with contrast and possibly and eeg to figure out my scrambled eggs. Even if everything comes out ok, at least she TRIED. And at least she is willing to help me understand.

If it’s weird, let’s put our minds together and put them to work and see what we can come up with. I don’t want to hear, “that’s not it” with no explanations and no other options. If you don’t tell me what it can be, I’m going to do my research and try to figure it out myself. When I do, I can’t be shot down with no explanations.

At least I AM TRYING instead of screwing over the VA, the government and service members who truly deserve and have earned help!

So that’s it in a bunch. I’m going to tell you what I told my amazing boyfriend yesterday.

It’s like falling into a well and the more bad shit is just more buckets of water thrown in, trying to drown me. I try to climb out. I get almost to the top and a storm comes pushing me back down, drowning me. I don’t need a ladder. I just need to see a hand over the stone. I will climb up and grab on. I need the hand to pull me over the wall. Then I will be home free.

Luckily Chris has been my strong arm. Now I need the docs to give me my footing, not just push me over or throw the water in.

Ok that’s it for now.

You kids be safe, wear a helmet and wrap yourself in bubble wrap. Have a great week!!

No longer apologetic

Hi kids. I’m just going to write a quick post and throwing it all out there.

For the past year I have had two great providers and one who really hasn’t given a crap. If it doesn’t go by the book or the VA way, it isn’t possible. For the longest time I have been apologizing for annoying my providers.

I am no longer apologizing for wanting a normal, healthy life.

Living with a TBI is difficult. It’s even more difficult for those around me.

Right now I am missing work and fighting through pain to write this in bed, under my covers. The whirling sounds are causing such severe nausea and headaches, I have to fight vomiting.

My boss told me to talk to my docs, go to an ER or something. I no longer trust the people I should have been able to. I am tired of being pushed off, told there is nothing wrong.

Want to know what isn’t wrong? Standing up for your health when you know your life is different. I went from being the best soldier I could be to bailing on work because getting out of bed hurts.

Yes there are people who abuse the system for financial gain, etc. Not once have a fought for more compensation. What I have fought for is to understand and get better.

I have requested meetings, done tons of research, not just for me but so I can help others.

I am very blessed to have loved ones keeping my brain busy and keeping me happy during the dark days. I want to be better for them too.

Sometimes I want to ask these civilian doctors do they have any idea. Yeah I am sure they wake up with the flu and not want to go to work. But do they truly know how it feels to be terrified of the nightmares when they close their eyes? Do they know how it feels to wish they were asleep somewhere, this is all a terrible nightmare and someone would wake them up?

This is reality however. I have goals I want to accomplish. There are jobs I want to do. I want to ride roller coasters again and shoot guns again. I want to have a happy life and future with my amazing boyfriend without him worrying every time I don’t feel well.

I am no longer letting someone’s rules dictate my life and me getting what and to where I want in life. I may be down some days but when I’m up, I will be the best I can be.

That is all for now my amazing friends who still read three years later and to the new readers who know they aren’t alone.

I will catch up with you soon.

Be safe, wear a helmet and wrap yourself in bubble wrap.

The world continues to spin around

Hello kids. Yeah I know it’s been over a month since I have written you. If it helps, it’s mostly for good reasons, reasons I will mention here in a bit. But since everyone keeps telling me I need to write and have been asking about the blog, I figured today is a good chance.

I have been staying busy with work which is good. I still like being at the information desk. I feel like I can really make an impact there. At the other desk, it was avoiding getting yelled at everyday. 

Very soon however, I will be taking a break from work for a while hopefully. I have orientation to go back to school in under two weeks. I’m so excited the school has an Art History program. I don’t have much longer and I will have my degree.

Thins is, the VA police sergeant stopped me today and asked me to send him some paperwork so he can finish my application. I thought it had been completed and I was passed up. Now I don’t know what to do. I’m wondering if I can finish my schooling before I am fully hired. I mean it does take at least 6 months to get fully hired on with any job within the VA; and I only have about 6-10 months left of school. What to do. What to do.  I honestly think school is the right direction for now given circumstances and all.

Since the car accident we have noticed even the slightest hit to the head and I don’t feel well. That isn’t good when your job consist of the strongest possibility hits to head could happen very often. 

I do have a neurology appointment the day after orientation. Maybe we can figure out what’s going on with the old noggin because barely getting hit isn’t jarring the brain any.

It appears where 3 of my skull plates meet behind my right ear, there is a gap. Maybe that could be what is causing all the issues. We will see.

So you’re probably wondering why I have been neglecting you.  I have been hanging out with my best friend Ash like all the time. Girls day is so much fun especially after the mess we have to deal with at work.

Oh, and…

I have been spending most of my time… with the boyfriend (Chris). Yes, you read correctly. Me? A boyfriend. Someone has finally been able to reign me in.

I don’t know if I mentioned it but when I got into my car accident, I was on the way to a baseball game; it was with him. So yep, we have been dating a while now. I think the accident actually brought us pretty close pretty fast. But I can honestly say, I can’t possibly be happier.

This guy knows all about my brain and the bad stuff that comes along with it And he has been all in. Needless to say, many of the issues have diminished greatly because he has made me so happy and kept my mind sound. He was the one that told me I should write you all by the way if that explains how amazing he is.

I love we are so different but can be weird together too. Dr. Seuss had it right.

I like the fact we don’t NEED each other but want each other. We give each other such happiness. We can be completely open and comfortable with each other. 

All this time I was happy being single, I had no idea I could be happier. And often we thank my speech pathologist for using his mind tricks and getting us together.

Which by the way, I am happy I don’t have to see my pathologist anymore because anytime something is getting better, it’s a good thing. But I will not lie and openly admit I’m really sad my routine of seeing someone inside my comfort circle has been interrupted. I’m not comfortable with many people in my life and I often only surround myself around those I can truly trust and talk to.

I am looking at it as positively as possible though. That part of my life is getting better and I do have Chris because of him. Oh the twists and turns of the road named Life.

To put this thing to bed for the day, I am so much happier. While dealing with the pain and some of the brain issues are still constant and daily, my life has been given a few more paths and I am looking forward to them. This is much better than the only path was off the mountain a little over a year ago.

That is that for now my friends. I will update you after my appointment and we will see where life takes me next.

I hope you all had a wonderful and safe 4th of July and hope your days ahead are great.

Stay safe, wear a helmet or wrap yourself in bubble wrap.