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.