A Lost Friendship

Loosing a friend is hard. Loosing someone that was more than a best friend, a sister, is heart retching.

Sadly, I'm the one that ended the friendship. I did not take it lightly. I did not make a quick, snap judgement. I cried. I sobbed. I still long for her in my life. I miss her. I miss who she used to be. No, she didn't suffer a brain injury, but she definitely went through some changes within that I just cannot be around anymore. I miss what we used to have. Who we used to be. A 15 year friendship is nothing to just blow off. This took weeks of pondering, going over everything that had happened in the last year or so. Going over notes, and messages, texts, and emails. Watching and seeing. Putting it all together and realizing with great profound sadness that I was past my limit of what I could accept in someone who was supposed to be so close to me.

I cannot tolerate lying. Friends, lovers, those close to one another should always have enough respect to tell each other the truth, no matter how painful it may be. The pain will hurt, but the pain of a lie lives forever. So much so that while I am unable to remember the details, I know when I hear or think of her name, I have a mix of anger and sadness that floods within me. There's no happy thoughts anymore like there used to be. I know something significant happened. It changed my soul. It changed deep within me. To the point that it even penetrated through the brain injury and the feelings remain.

It takes a lot for that to occur, but in this case, it has. No matter what happens, I can never forgive her. Our relationship could never be even close to what it once was. This hurt runs deep within.

Part of it were the numerous lies that were told, by her, to me. How could she do that? We always had a relationship built on trust. Why lie? Even little things that made no sense.

Then it was how she changed her own life. She did things that I just cannot accept. Yes, it's her life. I am aware of that. I, though, kept telling her how it would end up. I begged her to stop and look at the bigger picture. She wouldn't. Couldn't. Whatever. What I warned her about all came true. All of it. In both her relationship with her children and that with her husband. How could she hurt them so much? How could she now say that she did nothing wrong? She did. I saw it coming. I warned her. She looked the other way thinking it was all good. I tried to be there for her. I honestly did. I was willing to stick through this nightmare with her and help her try to clean it up.

Instead she began the lies. The "I can't talk to you I'm too busy" excuses. Even when I fell on the worst times of my life recently, she wasn't there. This person who said she'd always be there. Who had been there for me many times over the years. I remember when we'd drop everything to be there for one another. Now, I was nothing to her. Not even a text to say she was thinking of me. On the rare occasions when I heard from her, it was all about this nightmare that she caused herself. Riddle with lies in between.

I had told her she had had one more chance. I was at my limit, but I didn't want to just throw away such a long, strong relationship. She knew it. I made it clear.

She failed. She didn't bother to even try. She used lies and excuses again.

That's when I went off on her. I had been pushed passed the point of no return. I sat and thought about it. Went through the last year of our friendship and just realized that it wasn't a friendship at all. I don't know what one would even call it. That's when I made the difficult decision to end it. Those that know of the situation, I told them. They all told me the same, just drop her and move on. I couldn't just do that. I'm one that likes to know why. Why is it ending? Maybe someone can learn something. Bring closure to the relationship.

So I spent several days composing a message for her. Laying it all out on the line on why we were done. I poured my heart and soul into it. Maybe, just maybe, a part of me was hoping she'd finally wake up and see what she had done. That she'd start to change back to the woman I loved. Start healing herself and those around her. Maybe.

I should have known better.

The reply I got was how she was the victim in everything and how I was "taking sides". The thing is, there were no sides. This was about her and I, not the rest of her issues. This had nothing to do with her other self caused problems. Nothing. This was just her and I. Yet, she ranted and raved about how she is the victim, no one loves her, with a few more lies thrown in, and then the kicker - how I was taking "their" side. I am never on anyone's side. I side with what is right. In this case, there was NO sides. It was between her and I and the issues between us. She couldn't stop for a second to see that. It was all so very self centered. Nothing like the woman I grew to love and call a sister, though through no blood relation.

It's been nearly two months. I never replied back to the message. It was pointless and I could see that now. I thought, through time, she'll sit back and realize what she has been doing and she'll try to reach out. Nothing. It's silent. Does she even care? Does she even realize I'm missing from her life? Is she that self centered that she doesn't realize just how hard that decision was? How much I miss her? How much she has screwed up her own life? That it's not the world against her, it is her against herself. She is causing this damage. She is destroying lives and hearts.

I miss her. I will always miss what we had. I don't know if I'll ever find anyone in my life like her again. It was good for many of those years. Yes, we had fights, but nothing like this. I'll cherish the great memories we made. I just don't know if I have the mental or emotional strength to ever be close as we were to someone else again. I doubt it.

Coming To Terms

I believe I have come to terms with who I am. I'm in the process of accepting that I cannot change who I've become. That I'll never achieve some of my most sought after dreams. That I will always be a broken record. It is what it is.

Now I'll start blogging, or whatever, about my life. Because this injury is me. I am the injury. I have to learn to live with it. It isn't going anywhere. It's part of who I am now.

Eyes, Doctors and Books

After seeing the eye specialist again, and talking with him and my neuro together. They believe I have a very high pressure of CFS, which is causing pressure on my optic nerves, which is causing all my vision issues which will, in fact, lead to blindness. I have to undergo more testing. Yeah.

I've been worried for years about going blind. I've been telling anyone that would listen something was wrong. I've been screaming it really loud since my incident in February. No one listened. The neuro casually decided to look into after my last visit but wanted me to be seen by the eye doc again. He noticed right away the seriousness of the problem - though he MISSED IT last Fall when I saw him.

The longer this goes on, the quicker I'm becoming blind with no chance of reversal.

Why does it take a person years and begging and pleading before someone says that something just isn't right here and looks in to it? The eye doctor was so concerned he wanted me admitted to the ER. I refused. Flat out refused. It's been like this for so damn long now. No one gave a damn. Yet, now they are going overboard. Bite me.

Doctors are a strange breed. Some will listen to you. Some won't have a clue what they are doing or even talking about. Others act as if you have no idea what you are talking about (even while describing your symptoms). And we have the awesome ones - who don't have time for you - regardless of what is wrong with you. They will tell you anything to make you go away.

I've had run-ins with them all.

The big medical companies keep saying you should have one doctor that knows your entire history and stay with them. Have they met insurance companies? Have they even met some of these doctors? I've seen doctors seem like they are heaven sent for many years. Then, out of the blue, they don't care if you are really sick, they will see you in 6 weeks. I've been through more doctors than I have friends, lovers, family, acquaintances combined.

People are pushing to get better health care. To have a more reasonable medical costs. To have better treatments and diagnosis. Yet, it's only getting worse. I've been looking for a dermotologist for ten years now. Either they aren't taking new patients or they will only take the state medical insurance. Let's hope that mole I have that's different sizes, different colors with a jagged border isn't cancer. I'm guessing it's not since I'm still alive, but it would be really nice to know.

Anyways, I also finished the book I was reading. It was good. It wasn't great. The reviews all say how funny it was - I didn't see a single funny thing in the whole book. Nothing. I saw a serious injury that, by some miracle, healed itself completely with no lasting effects at all. Yes, I'm laughing now. The chances of having no lasting effects after being diagnosed with a TBI is slim. There's always something. It could be minor, but it's there, especially for as long as the main character had issues. It wasn't as if she only had issues for a few days or weeks. They went on for months, then  just went away with nothing left behind.

I want to contact the author again and tell her how I feel now that I've finished it. I did contact her on Twitter initially. With only so many characters to write, I can't figure out how to write it out without being a blunt jerk: Ur Bk is lie. Was OK as fiction. Failed for TBI ppl evrywhre. That just sounds too harsh. Besides, it will leave her wondering why I feel that way. There's no way to fully explain my thoughts and feelings and how it was so unlikely. Just like the quiet shy girl ending up with a prince on a white horse coming to her rescue. It truly fell into that category for me.

*sigh* Maybe I should write a book about myself. Maybe I should make it clear on what it is really like. How you do heal, but it's only to a point. How there are people that are worse than myself. Then there are those that are a little better off than myself. Overall, though, no one truly heals completely and totally from this. How hard it is. How ugly and sad it is. It's not a joke - though I didn't feel it was written as a joke, but some people that don't get it took it as a joke, I guess.

Maybe I should at least try.

Maybe

Reading Tears

I love to read. It's part of who I am. I still enjoy it, even with my new me. I have been exploring free ebooks on different sites, like Amazon. If something catches my eye, I download to read in the future. So my Kindle Fire is full of books that I have downloaded. I have found several new favorite authors this way and have went on to purchase other novels by them. I don't see why people are so against such a thing. It's a great way to "test drive" a novel before putting down good hard earned cash. I gladly pay for more if the author's free novel was outstanding and will continue to do so. 

That being said, I normally see this huge list of books on my ereader. I have no idea what any of them are about by the time I get to them. I'll spin the carousel back and forth and land on something that just seems to hit the spot. Sometimes it does, other times I wonder what I was thinking. 

Today it landed on one that I could not, for the life of me, figure out what it would be about.Clearly, though, when I saw it on Amazon it pulled my interest. So I decided to begin.

I'm about a third of the way through this new book. I am struggling with it. The writing is great. The grammar and punctuation and spelling are perfect. The story line has me hooked. 

So what's the problem?

It's the story of a young girl that suffers a TBI. 

I'm trying to find out if it's based on the author's personal experience, someone close to her, or if she just researched it. 

Does it matter? Not really. You see, I am struggling with it because I get a couple more pages in and I have to stop. I can no longer see the pages with the tears flowing out of my eyes. My heart just sinks into my stomach and twists. My eyes are flooded. I'm gasping to catch my breath. 

I know this girl. I feel this girl. I am this girl. 

The things she feels, sees, comprehends and doesn't comprehend are so very real to me. It's my life. People reacting as if it's not a big deal. People not understanding. People being rude and mean. People trying to be helpful but only frustrating you more. 

I will finish this novel. I will. It might break me, but I will. I will also find out how the author can relate. I will. I need to. 

Maybe I should attempt to write about my life. It would be a struggle, but it might be the struggle that is needed. For people to finally understand where I'm coming from. With my daily struggles with simple basic things. Maybe I should. 

New Neurologist

So I saw a new neurologist last week. She has a better bedside manner, seems to be more thorough. Time will tell if she's worth it or not.

She was honest - I am how I am nothing out there in the world can help me be who I was prior. I knew that, but to hear it was like a slap in the face.

I am having more tests done to see what happened earlier this year. My vision is all weird in that left eye still along with a few other issues. So we shall see what happens with it, if anything at all.

I'm pretty much me now. This is the new me. I have to either figure out how to accept it (i.e. remember it) and move on or keep dwelling over who I was. How do I move on, though, when I don't remember that I need to? It's basically damned if you do and damned if you don't situation.

I feel like my life is just wasting away. That I should be doing something with it. But what? How? When I can't remember what I just did or what year it is. How can one figure out what they are supposed to be when they are trapped in time?

This is a puzzle for someone who is brilliant. Someone with an overload of intelligence.

*sigh* Life is moving on, even though I, essentially, am not. It's strange. Everyone is getting older, things are changing, life is moving forward for every living thing, except for me. This may end up being the hardest thing I ever do in my life. I need to find a way to move on. The biggest challenge of my lifetime.

Medical Mystery

Well, there's something wrong with me. Something more than the usual brain injury crap I deal with on a daily basis. Something that is deeper within my head. Something that happened not long ago. I don't know what that is. Why? The doctor I've been seeing wants a test done and while I agree to the test, I don't agree to the contrast that she wants to use. I have valid reasons. It nearly killed me - twice.

I'm more than willing to have the test done without it or any other test possible. She won't budge. I feel as if my doctor has failed me.

Several weeks ago I woke up one morning and couldn't sit up. I couldn't stand nor walk. I was falling to the left and was unable to use my left leg or arm. It was scary. The children were at school, Dh was at work. I thought maybe it was an ear infection or something similar. Things like that can really affect one's balance.

It passed after about a day, though I was very dizzy for a few days afterward. Since then, though, things have been worse. My emotions are worse than they ever were. My head is never "as good as it can be". My vision is exceptionally worse. I have severe headaches more than I ever have had in my life. I have issues with balance, though not severe, they are there when they weren't prior. I have lost the ability to "make" my left leg walk properly numerous times since then. Never had that before.

My vision is the worst of the issues. I can only see about half. The outside part of my eye is nothing but blurry. It's as if there was water on glasses and you are trying to see through it. It's impossible to make out much at all. There are constantly little flashing lights in my vision in the left eye. I have noticed that with the right eye, there is the blurry vision on the outside of it, but it's very minor and only in a small spot compared to my left, which is the entire outside half of it.

My husband had to wake me up early this morning. I was crying off and on in my sleep. When I came to, I realized I wasn't having a bad dream, but was having sharp stabbing pains just above my left ear that went deep into my head. He gave me medicine and after about an hour, it turned into just a sore head, if that makes any sense. I was very exhausted and my head was sore, and if felt as if my left eye was swollen. Though on the outside, there was no signs of it being swollen.

I have no idea what's going on. I just know that it's killing my soul. I'm terrified of dying. I'm not ready to die. I don't know if it's that serious, though, because my current neurologist won't be bothered to run tests that won't kill me to find out what it is, if anything at all.

I'm terrified. I'm emotional. I can't see as well as I had been. What is this? Why, when we have good health insurance, can't I get a doctor to listen to me and run other tests to see what it is? Why do I feel as if I'm a bother to these medical professionals when it's my life on the line?

I can't think straight anymore. The vision, the pain, the entire ordeal has me a mess emotionally. Why won't any doctor help me? Why won't they find out what is going on? Why?

I believe I should get all my affairs in order, just in case. I've never had that feeling before, but I do now and can't shake it. I guess that's what I'll do today as long as I can see decently enough to do so.

This is America. I have Blue Cross Blue Shield medical insurance which we pay a huge insane amount to each pay to keep. Yet, I can't get the help I desperately need.

Hate

I hate this brain injury. I hate what it's done to me. I hate having all these issues. I hate loosing who I was. I hate that I can't remember what's going on. I hate that I feel like a failure. I hate that I need help. I hate that I'm so terrified to ask for it. I hate the fear of getting worse. I hate the fear of loosing my vision. I hate the fear of loosing my hearing. I hate the fear that at any point in time, I'll forget how to walk, talk, turn something on/off. I hate what this has done to me. I hate that I feel no one can help me. I hate calling a doctor to tell them I need help, so I don't. I hate sitting and not knowing. I hate not remembering. I hate that life is passing me by and I don't remember it. I hate feeling stuck in time. I hate that I can't be the wife I once was. I hate that I can't be the mom I once was. I hate that I feel so damn hopeless. I hate that I feel so damn useless.

I hate who I have become.

Acceptance

If I were to tell people that I had cancer, do you think the person would say they had it worse? They had a broken arm and it's painful but they live through it; therefore, so should I? Would they go off on how I need to stop telling people and just move on? While there are people that would be that hateful, most would not say that. Most would be respectful, kind, considerate. They'd try to be more understanding, even if they were completely clueless.

So why, after all these years, when I tell someone that I had a brain injury, I still run into people where they believe it's okay to compare their non life changing injury with my life changing injury? To belittle me? To make me feel as if a brain injury is just a small bump and I should move on? Do they not realize that I'm trying to share my feelings? To inform them on why I may act odd at times? Why at times I'll use words that make no sense? Why, at some point, I'll forget something important? Why I like different things, feel different ways, and honestly just want to be alone more often than not? Is it wrong to tell someone outright before they see these issues and think I'm insane? I don't think so. I think it's a smart move. I let people know that I will not remember them and why. That if I'm counted on to do/bring something, that I could end up forgetting and to remind me. To just cut me a bit of slack because I am trying. I'm still adjusting.

I had that with my family. I had it with now former friends. More recently I had it with a support group. A woman went off, not only to me but to two others with a brain injury, about how we need to move on. What were we expecting from our families? How she had a leg injury and while she still has pain, she doesn't tell anyone about it, she just keeps living her life and being happy.

She didn't get it. I went off. I lost it. I do that easily since. I let her know how rude she was and why her comment made no sense. I had Endometriosis and Adenomyosis. Most people didn't know. I didn't feel the need to tell the majority of people about it. It was extremely painful. It left me with very little living that I could do. It was hell on earth. I had a hysterectomy, but the Endometriosis in my legs have badly damaged my muscles. I still have a lot of pain. Once in a while, my pathetic ovaries will work and I'll have abdominal pain. I also have a bladder condition and end up in severe pain from it off and on as well. I don't go telling people about it, because it's not something they need to know. It's something I can hide without affecting anyone's life.

A brain injury isn't that way.

A brain injury affects personality, speech, language, feelings, likes/dislikes, mood, vision, hearing, balance, walking, memories, etc. A brain injury changes a person. No matter if it's a mild one or a life threatening one. It changes who you are. You are no longer the person you were prior. You are someone new. Someone that is different. You will loose relationships. You will gain new ones. It is a life changing injury. It changes the very core of who you are.

I will never understand why people feel the need to go off on someone like that. I don't understand why they can't take a few minutes, listen to the person, and just know that they aren't the same and you will have to just give them a little break when it comes to things, life, how they are. They don't want money, pity, sympathy. They just want a little forgiveness. That's it. They want you to understand why they forgot something, why they can't speak with understanding that day, why they are not listening - because they truly cannot hear at that moment. Why they are fearful about driving, yet they drove yesterday. It's a way to answer all the questions before they come up.

So if you are reading this, I doubt anyone is, just keep in mind that this isn't a normal injury. This isn't something that might change a few things about you, but not your soul. A brain injury will change a person completely. They are a different person and when they tell you, it's not to brag. It's not for information for them, it's for you. So that you understand why they do the things they do from now on. They don't want pity. They want respect. They don't want money. They want your understanding.

They just want you to cut them a little slack. That's all. Just a little slack.

I Love You Just The Way You Are

Let me back up a bit before explaining. My husband is a wonderful man. One who works hard, tries to provide me with all of my heart's desires. Who has stood by my side through so much and not once flinched. He's not a romantic man. Never was. His idea of a proposal was "So, ya wanna get hitched?" Yes, I'm serious. :-) At first, I wasn't aware that it was his official proposal. When I learned later that it was, I was stunned, but didn't say a word. Now, 15 years into our marriage, I look back and honestly would not have had it any other way. 

He has brought me flowers off and on through our marriage and before. But through time, I've learned a few things: 

1. Valentine's Day is silly. If you truly love someone, you should not need a special day to tell them. You should feel free to tell them off and on as time goes by. 

2. The prices of flowers seem to go above and beyond the inflation rate in February. That dozen roses was $15 in January, will be $15 in March, but right now? They are $50. All because of a so called holiday. 

3. I LOVE flowers. They make me smile. Make me feel comfortable. Smell wonderful and remind me of wonderful Spring, Summer, and Fall memories. Yet, when I try to grow them, I end up killing them. Have I mentioned that I have killed numerous cacti over the years? Yes, I'm a true black thumb. 

4. We got married February 8th. What was I thinking?!  Oh, yes. That I love that man and want to be his wife. I couldn't let another day pass without being his wife. I didn't take into consideration Valentine's Day or the cost of everything at that time. 

So I ask for candy for our anniversary. I ask for any gifts on our anniversary. I don't ask for anything on Valentine's Day. I never ask for flowers, but always secretly wish for them. 

This year, is a hard year. I'm struggling right now with this brain injury. I'm questioning my life, my existence, why I am here when I'm essentially useless. He's heard me. He's seen me. He's watched my daily struggles with this. I don't know why he's with me. I'd love to leave myself behind, if I could, but one cannot leave themselves. 

So I was very surprised this week. I had flowers delivered to me. This is even more rare than just getting them from the store, because delivery is a lot more expensive. I, then, was curious. I took them out and was stunned. I read the card. Read it again. Then again. And again. That's when it finally dawned on me. My husband loves me. He loves ME. He loved the old me. He loves the new me. He loves my silly mistakes (leaving him in WalMart and going home, forgetting to turn on the oven when supper is in it, etc), he loves every single thing about me. Even though I'm different and unable to accept myself, he has. He accepts me and loves me. 

How can someone love me? I need to find a way to love myself. I need to find a way to laugh at my mistakes. I need to find a way to love me. I'm not going to get better. I'm going to get worse. I'm going to grow old. I need to accept it. Somehow. Someway. 

I am lucky. I am loved. 

PS I had to have my son count them. I knew it was more than a dozen roses, but I couldn't count that high. I was too flustered and shocked to concentrate on counting. There's 24 roses. Two dozen. . I have a great husband. 

Walk Like A Man...

Well, I wish I could, that is. For some reason, my brain is really not working as one's brain normally should. Instead of just doing normal daily things that one has done for the majority of  their life, mine takes a "vacation" or forgets how to do these things.

Tonight, it decided it has no idea how to work my left leg. I can't stand on it, I can't walk without falling over. Yet, my right leg works perfectly fine. No issues at all with it. But I can't figure out how to work my left leg. It's difficult to really put this into words. It's the oddest sensation to have to contend with. I'm almost completely certain that it will return tomorrow, but there's always that small part of me that wonders - what if it doesn't? Not just with this new leg issue, but with my vision in my left eye, my hearing in my left ear. Most people don't have this issue.

Speaking of that....

Most people forget a grocery list, forget where they put the car keys, forget to set the timer for the food they are making. Those are all normal things that people have issues with here and there. It's not the same. When someone says to me that their forgetting where they put the keys is the same as me forgetting where the keys are, what they look like, and what vehicle they are for - it's not the same. Completely different. People with TBI have a much deeper issue than those without have. It's not the same and to say it is, just kills us a bit inside. It tells us that you don't fully understand us and it appears to be a slap in our face. That what we are contending with isn't anything major in our lives. It's trivial in your mind and that bothers us deeply.

When a normal person says that their mind isn't working today: it implies they are having issues multitasking, misplacing items, under a lot of stress.

When I say my mind isn't working today: I don't remember the year, I can't figure out how to do daily things (turn on the faucet, walk, start the oven, which is the salt and which is sugar,etc), what day it is, who I am, who my kids are, what I'm supposed to be doing that day (from appointments to practices to even if I showered or not), etc.

It's not the same. It's clearly different. When my mind isn't working it doesn't just affect myself, but everyone else around me. I'm unable to function enough to know if I even ate that day, let alone to try to make food for my family. If I go to the store with my husband, chances are high I'll leave him there if he steps away from me - even for a minute. These are not normal things that normal people go through. It's the life of someone with a brain injury. It's my life.

Right now, my left leg doesn't know what to do. Oh, it's not injured. It's my brain who is, for some reason, forgetting on how to communicate with my leg. It has no issues telling the right how to work, but the left it is clueless. Same with my left ear and my left eye. It's as if my brain can't figure out how to work the left side of my body at times.

As a matter of fact, I've realized something else while typing this. All the letters on the keyboard that I type with my left hand  - I have to go back and correct. It isn't working clearly. It's hitting wrong letters and I"m struggling to stay focused on what I'm doing here. It's so frustrating that I can feel the pain in my head slowly forming. I'm going to get a headache from just trying to type right now. My brain is working overtime to try to keep up with my thoughts and it's failing when it comes to my left hand and typing.

It's not fair. It's not the same. Am I going to loose the left side of myself at some point? No one can tell me. I'm scared. No, I'm terrified.

I have a blog?????

Since when have I had a blog?!  I came across this by accident this evening. It was a complete shock. As I read through it all, it was as if reading things a stranger posted on the internet, but clearly it had to have been myself. It's like when you find an old letter you wrote when you were a child. You know you had to have written it, but you... well, no, normally you'd remember at least part of writing it or why. I don't have any feelings at all towards my blog. Though, it made me cry. 

I guess I'll keep going about myself and life with a brain injury. 

Last Fall I found a new neurologist. She ran all kinds of tests and wanted a final test done. I can't because Blue Cross Blue Shield won't cover it at all. It's thousands of dollars. I don't have that lying around here. So she said she doesn't know if she can do anything for me. She had me see a colleague of her's during that time, who gave me the results of my other tests. My MRI showed scarring, at least I think that's what my handwriting says. My EEG showed many abnormalities. He believed there was nothing that could be done to fix me and I'd have to find a way to live with how I am now. They also said that the vision and hearing issues were directly tied to my brain. There was nothing wrong with my ears or eyes - I was tested by specialists. They also could not give me any answers. Was I going to loose my hearing for good? Was I going to go blind? No one knows. 

Over a month ago, I developed a blind spot in my vision. It's annoying as can be. My vision in my left eye is also degrading. Yet, it's not the eye itself, but my brain. The blind spot is in the same eye. It's annoying and hard to accept because I was left eye dominate. Now what do I do? 

My mind is just reeling. I'm terrified of loosing my vision. Life's stress has my mind already in a jumbled mess. This on top of all the other stuff? I feel like I'm loosing my sanity. 

The doctors were impressed with how I've come to adjust to my new self. They said that I was doing incredibly well. Maybe I fooled them? Because I feel like a waste of space.