Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the category “I just have to say this:”

My life after EPM;

I’m rounding an anniversary. I’m sliding into five years post injury. I have to stop to think that through….has it really been five years? Almost.

So much has changed and so little has changed. I’m still adrift. I don’t know what life holds for me anymore. I have to wonder if if I’m sliding into home plate.

Don’t get me wrong. I haven’t given up. I will never give up. After a five year hiatus, I have started swimming again.

I have to say this is a HUGE deal. First, I was terrified, absolutely terrified. Immediately after my injury, I had started back to weightlifting. I found that I could not do it. My muscles would give out as I pushed myself to lift my normal weights, and slowly, I dropped to lower and lower weights with the same result: my muscles would give out.

I had never been a fast swimmer, but I had always been a good swimmer, and pre-CPM, I was able to swim lap after lap for over an hour at a time.

When I lost my ability to lift weights, I wondered if I had also lost my coordination. Would I fail at swimming as I had failed at lifting weights?

I couldn’t handle the thought, so I didn’t try.

About a week ago, I tried. It was momentous to me. In the first 25 yards, my quadriceps cramped. Then my biceps and triceps cramped. I couldn’t breathe, but I pushed myself to continue.

With every length of the pool, I pushed myself past the pain and fear, and I ended up succeeding.

It isn’t easy. I have to work at it each time I get in the water. I have to push past the pain, the fear….I have to work. And even after, I have finished, later in the day, my muscles will revolt, but my spirit has gained.

I will not let EPM claim the rest of my life. I will continue to push myself to the extremes and beyond the fear. I hope you do too.

Blessings and happiness.

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Trying to Figure Things Out:

Hi, All!

I am so sorry if you weren’t able to access my blog in the past few months. I apparently changed my features, and I had no idea that I basically, blocked my blog completely.

I guess even after all this time, I’m still learning how to manage it.

I hope that you are doing well! I can’t report any major changes in regards to my health. I still have the cramping with typing, and even just writing these few sentences, my muscles are tensing, but I am going to try to make every effort to overcome my pain to reach out to you.

I really hope that you are reading this just for information. I hope that you haven’t been personally impacted by CPM or EPM. If you are struggling with this brain injury, please feel free to reach out to me with questions, and I will try to do my best to answer them.

For me, it has been three and 1/2 years since my injury, moving closer to four. I have seen improvements in some areas of my injury, like with speech, but I continue to struggle with other parts like, Parkinsonism, short-term memory issues, fatigue, cramping, etc.

I found the most relief, in regards to the Parkinsonism, from taking Baclofen, Gabapentin, and Carbidopa and Levodopa. I’m on a mild dose of these, but that said, I’m still dealing with problems. It would probably make sense to increase the doses at this time, but I hate the effects of the drugs. I have also had relief with massage therapy. I really do love the massage therapy. It helps to relieve the tension in my muscles, but it’s kind of expensive. It’s been suggested that I try water therapy, and I absolutely not against it. It’s just difficult locating a place that practices it, and by the time, I find a place then I lose the prescription or it expires. By the time, I get the prescription, I forget where it was that has it.

Personally, I think I have hit another plateau, but it is really hard to say really because when you suffer from memory issues, you really live in the moment of now. It could be that my health is declining. I know it hurts when I get up to walk in the morning because one of the fantastic symptoms of Parkinsonism is plantar fasciitis. Basically, the muscles in your leg cramp which cause cramping pain in your feet. I try to stretch things out, but I really should try harder. I’m supposed to stretch several times a day, and I did that for awhile, but I didn’t find a lot of relief, so I kind of stopped doing it. I don’t think I’ve noticed much of a change since I’ve stopped doing it either.

Ok, so I know I need to practice at this writing thing again.

I’m a bit out of it. This week has been particularly rough because I finally closed the chapter on the medical mal practice lawsuit. I will try to walk you though the ins and outs of what to expect if you decide to pursue it.

You’re kind of put in a tough spot. You have been hurt due to an error by the doctor or hospital treating you. In my case, the doctor admitted that he didn’t treat me appropriately, so you would think that’s it. The doctor made a mistake. He admitted to it. You were hurt. Boom. That’s it. How could it be more clear-cut?

Well, in my case, the doctor was fine with settling the case, but it’s not really his decision. He is represented by an insurance company, that at the end of the day, cuts the check. And unlike what you might experience with an automobile accident, these insurance companies are represented by lawyers, who are paid to stop that from happening.

The insurance companies have spent years, maybe even decades, convincing the public that people that push for medical malpractice cases are horrible, money-grubbing, fakers. They have pushed state governments to set caps to prevent people from receiving compensation due. So, if a doctor kills you or a loved one, in most states there is a cap on pain and suffering of about $250,000 to $500,000. If you receive any more compensation than that, then it has to be from economic loss. Let me stress, that is not what people generally walk away with. They are lucky if they get anything. Most cases are lost.

In summary, doctors pay extraordinary amounts in premiums to insurance companies. The insurance companies have (through advertising and other methods) convinced the public that the reason your healthcare costs are so high is because of frivolous lawsuits, and the insurance company backs out quietly with all the money.

It’s a painful reality that I hope you never face.

In the mean time, if you are the person who filed the med mal suit, then you will spend the next several years of your life under unimaginable stress. You will be told that because a person can’t physically see your injury that you are exaggerating your problems or that the problems are actually psychological caused by every previous painful event that has happened in your life. It doesn’t matter if you were a productive member of society that worked, went to school, or both. It doesn’t matter if you’ve made every attempt to get back to normal because it doesn’t take you long to realize that a lawsuit will NOT solve anything. You will be lucky if you walk away with anything after you pay back your lawyer, court costs and the insurance companies (health insurance).

After choking on that extremely bitter pill this week, I have been extremely depressed. Not because I was expecting millions of dollars to put me on “easy street”, but because I really expected to have enough money to break even. I was hoping to not LOSE money. I have a brain injury, and I have LOST my ability to maintain steady income. I wasn’t rich prior to the brain injury. Heck, I live in a 750 sq foot condo, but now I am actually financially crippled because of the brain injury and I have to suffer from the physical impacts of it for the rest of my life. That is depressing! It hurts me deeply.

But when has life ever been fair?

I know a woman that had breast cancer. She has several kids. She has worked hard her entire life. Life dealt her a cruel hand by giving such a lovely person breast cancer.

What can you do but suck it up buttercup?! Try to make the best of the worst possible situation. It isn’t fair. It does SUCK! You wouldn’t think life could be this way. And you do ask, why me? But at the end of the day, it’s what you do with that bad hand that makes the difference. I could lie in my bed every day and cry, or I could put one painful foot in front of the other, and try to enjoy whatever I have. It could be worse. It absolutely could be worse, and I know that’s hard to believe or accept as you go on this journey, but you opened your eyes, and a lot of us with CPM and EPM don’t get that far.

So stay brave, and let’s focus on making sure what happened to us, doesn’t happen to anyone else. Let’s make a difference, and let’s be strong for one another.

Have a Great Night!!!

Has it really been a year?

Hello, All!

I hope you’re doing well! I am SO sorry that it has been so long since I last made a post. I am still alive and kicking.

Tonight, I am nursing a sinus headache and because of that, this might be relatively short.

I have no idea what I have posted in the past. I mean, I know generally what I have included, but nothing specific.

So, how have things changed in a year? Seriously, I have no clue because my short term memory is still impacted by the injury. There are obvious changes; my kids are older. I am older.

I still live very much in the now, and this still has significant complications for those I know and care about. People who don’t know me might misunderstand this lack of attention as a lack of interest, but it really is that I don’t have a great method of keeping track of time, people, or events. This means that I forget to call or write people. i don’t make doctor’s appointments that I need, or I show up to doctor appointments at the wrong time or on the wrong dates.

I just went back to work part time. It is hard even completing that job because as policies and procedures change, I find it difficult to remember or adjust to the new stuff. It also takes a significant amount of concentration and patience. In general, I find that it takes about 2 hours before I’m stressed and about four hours before I’m mentally and physically exhausted. It is hard for me to complete tasks prior to work and then spend time at work. After work, I am so stressed that on most nights, it is hard to socialize at all with my family. I become so overwhelmed that even our little dog’s attention becomes too much. I need quiet time. Literally.

I’ve heard autistic children have this same tendency.

I still have a significant number of daily issues with movements, blurry vision, tinnitus, balance issues. I have cramping in my hands, feet, legs and hips. The cramping because significant with repetitive movements, like typing and writing. I have found that a certain blend of medication has given me the most relief with twitches, jerks, and severe shaking. I use a combination of Baclofen, Gabapentin, and Carbidopa/Levodopa. That said, the drugs tend to peak with ongoing use. This leads to a need to increase the dosages. They help, but they aren’t a permanent, absolute fix.

I have talked to people in many different countries who say that they have the same issues.

I do believe it is very important to stay as active as possible. I have daily pain with walking and using weights, so I stopped exercising for several years. It didn’t help. I recently started walking again and using light weights. I still have continuous daily pain. It hasn’t improved with exercise, but the mental aspects did. I felt better mentally. I felt like I accomplished something, but honestly, it really hurts. Almost with every step, I experience pain. You have to push through it. If you can’t change it, you need to accept it. I know that sounds like such a bitter pill to swallow, especially if you have recently been diagnosed with the condition. It is hard, but you do become more accustomed to the pain.

A lot of my fellow CPM/EPM survivors have had the same experience. The activity helps, but prepare for physical discomfort. It is recommended that before you start ANY physical activity that you consult your doctor first. It is also important to start of slow and build from there. Don’t expect miracles and give it time. If you also have balance issues, etc, I definitely recommend that you do NOT exercise alone. There are MANY times during a walk that I slip or trip or just lose my balance. I have no doubt a fall will happen eventually, but on almost all of my walks, I have my friend go with me. You’ll be surprised at how many friends are willing to get out with a friend for an hour or so.

Well, that’s all I can manage for now. As always, I am interested in hearing from you. If you have a question or need help, please leave a comment, and I will try to get back to you as soon as possible.

Many Blessings! Have a great night (and hopefully, I’ll be back sooner rather than later) 😉

A brief Update:

Hello!

Yes, I am still alive. Unfortunately, I have been ongoing vision issues. It seems that the more I try to read or type the more issues I have, and so I really limit my time doing either. My desire for researching information and trying to find answers for those of us suffering from brain injuries is there, and I REALLY wish I could devote more of my time doing it, but it’s just not as easy.

I have tried new glasses. I got lenses that had anti-glare and tint to them because I thought the blurry vision was from an outside source. However, the new glasses did not have a great impact.

Just like the ongoing issues tinnitus, the vision issues are intermittent, but at this point, it happens almost daily.

The best news that I wanted to share is that the jerks and twitches that were almost constant have resolved greatly with the use of an dopamine drug. I can’t remember the exact name of it this moment, so I will try to revise the post with the correct information.

Unfortunately, it has not helped with other issues like the resting tremors or the cramping, but seriously any improvement is AWESOME!!! TRULY AWESOME.

I’m afraid that is it for my extremely brief update right now.

Please be patient as I try to overcome some of these physical issues, and please if you need help or have questions, contact me. I will be happy to help if I can.

Have a great day!

Questions without answers:

If you’ve ever been sick for an extended period of time, then you will probably be able to relate to this. Sometimes there are questions that don’t have answers, or at the very least, no one knows the answer.

I’ve been experiencing a lot of that recently.

One of the biggest questions that I’ve had, why am I having issues with blurry vision. As the months have gone by, the periods of blurry vision have become more and more frequent and longer lasting.

Of course, this makes everything more difficult, driving, reading, writing, working.

Initially, I thought I just needed a new prescription, but my opthamologist said there wasn’t any change, but my glasses were old, and I thought if I got anti-glare and tint that it would make it better. It didn’t.

I was sent to a neuro-opthamologist. He’s requesting more tests. There doesn’t seem to be any physical issue with my eyes.
I am glad that there isn’t anything physically wrong with them, but I also wish it was something simple, like cataracts. If they know what the problem is, then in most cases, they can fix it.

So, why is my vision getting worse? Why are the spells of blurriness lasting longer? What can I do to fix it? And more importantly, what is going to happen if there isn’t an answer to it?

I never expected any of this to happen. I never expected to be 36 years old with a brain injury, to be losing my vision, to have periods where I can’t control my movements, to not be able to remember appointments, have trouble reading, etc. Someone told me the other day, never assume that things can’t get any worse because they most certainly can.

I am grateful for the things that I can still do. I am disappointed over the things that I can’t, and I am hopeful that the things in the future will be better and not worse.

Dreams:

I have had very vivid dream since I was a kid. I don’t know why, or why I dream about some things. I don’t believe that dreams hold secret meanings or prophecies. Generally, I believe that dreams are our psyche’s way of relating encounters and memories or even possibly dealing with feelings that we can’t necessarily handle in our daily lives, but last night, I had a dream that was so overwhelming that I woke up with a bittersweet hope, and it faded to bittersweet despair within a minute. It was dream that made me want to close my eyes and hope that it would continue. I wished that I could just transport myself back into that dream and stay there. It stayed with me, and I’ve spent the past day just absorbing it over and over again as it starts to fade from my memory.

So, I’ve been sharing it with my friends, with Tom, etc. And now, I’ve decided to write about it because I hope that I can keep it in the moment of forever, and I hope that maybe I’ll dream about it again. For once, I wish that I did believe that dreams can be prophecies, that they can become reality.

I dreamt that I was a doctor, actually a resident, and we (a group of other residents and an older doctor) were making rounds. We were new, and we were excited to be on the floor. We stopped first in the ER, and a patient was having severe abdominal pain. The older doctor asked, “what do we do in a case of severe abdominal pain? Anyone?”  I responded, “Run a full blood panel, a pregnancy test due to the woman’s age, and I would suggest doing an immediate CT scan to check for possible appendicitis or ectopic pregnancy, assuming that they’ve already done a physical of course.”

The doctor in charge was impressed and ordered the testing. In my dream, a patient across the room started to become aggravated. He was waking up from a surgery that repaired a aneurysm in his throat. (I did not even know if that could actually occur, but it turns out it can). He had been intubated, and he did not realize what had happened. He suddenly was waking up in a strange place, in severe pain, and he couldn’t speak. He was trying to get out of bed and go across the room. The nurses were trying to restrain him before he did significant damage. My group was already moving to the next floor, but I stepped in to try to assist the nurses.

Because, I knew what it meant to be sick and afraid, I was able to step in and help this man, Joe, and ease his fears. I was able to lead him back to his bed, explain the situation, and calm him.

I told him that I would take care of him. I would help him. I got him a couple of warm blankets, as they moved him to his actual room, and I gave him my name on a piece of paper. If he needed anything, at any time, he could contact me, just give a note to a nurse. I would do anything that I could to help him.

In that dream, I felt such a huge surge of contentment that it woke me up. It was like I knew this was where I was supposed to be and knew this was what I was supposed to do, and it felt so real. The warmth of the blankets, the color of the florescent lights, every wrinkle of Joe’s face, and his dark brown eyes full of appreciation. It was as if I was really there doing those things, talking to those people. Everything seemed so real, but most importantly the sense of contentment and belonging. Within seconds of waking up, it was like being doused with the cold water of reality. I almost started to cry.

Why did I have that dream? What was the purpose of experiencing that moment in my life, to feel that moment of contentment and then face the reality of what my life is?

There is no greater heartbreak then to see what could have been and face the reality of what is. It is even more bitter to know that this shouldn’t have happened. There were ways to prevent it. There were ways to fix it, and for whatever reason, this happened despite them.

I don’t know what is going to happen in the future. I don’t know what’s going to happen tomorrow, but if I can stop CPM/EPM from robbing you of your dreams, I will.

Concerns:

Foreword: I wrote this a few days ago, and I think it gives a pretty accurate description of how frustrating it is to have a brain injury. I wish I had more answers as to what to do for it. Hopefully, as time goes on, there will be more answers, more treatments, more ability to have a normal life or better recovery.

It gives me strength to know that I’m not alone in this. I think it’s important to let you know that even though you might have lived past an injury that they thought you would not survive, even though you are grateful for your life, it doesn’t mean that you don’t grieve over the way your life was.

Concerns:

I don’t know what’s going to happen in my life. It has already changed TREMENDOUSLY. The biggest issues that I have is with the way I think, how I act, not being  able to live my life like the way it was, but this might be as GOOD as it gets, and that is extremely SCARY.

 

I was right. My occupational therapist said that those who suffer brain injuries can have their brains turn to MUSH. Ok, she didn’t use the word, mush, but that’s pretty much what happens. (She thought that was ridiculous before, but she went to a conference and they acknowledged that it was happening.) The brain calcifies. It can take a few years up to 40. In autopsy, they removed the brain of someone with CPM, and their brain CRUMBLED in their hands.

 

I’m 35. I have two kids. I wanted to be a doctor, and that was a realistic possibility, and now I’m stuck working about 12-16 hours a week taking sales calls. I have TRIED to pick up my textbooks. I have TRIED meeting with my MCAT study partner. It doesn’t work. My mind doesn’t work. It’s like throwing cooked spaghetti at a wall. It might stick for a few seconds, maybe a few minutes, but then it’s gone.

I want to get better! I want to be back to normal.

It’s exhausting trying, over and over and over. I find comfort in the things that I do remember. I remembered an appointment, and that gives me false confidence that things are better or that I’m better than I am, and so I think, I don’t really need to write this down. I’ll remember it. Or I won’t need to create a reminder on my phone to pick my prescriptions, I’ll be driving by the pharmacy and that will cause me to remember. That’s how it used to be. Everything, would just fall into place as I did something. I would be able to organize things in my mind, as simply as one puts the pieces of a puzzle together. It was so easy.

 

It does bother me that the other day I could not remember how old I am. I could not.  It bothers me that I don’t realize I bought the same video game from three different places in a 24 hour period.

 

I don’t want o be like this for the rest of my life. I’ve always been a survivor. I’ve always been able to overcome obstacles. I have lived through SO much: physical, mental, emotional abuse, sexual assaults, long term illness (when they couldn’t figure out why). I’ve worked through it all. I’ve lived through it all. I’ve overcome it all, and just as I was beginning to think I had the possibility that it was going to be better (pituitary tumor removed), I was mistreated and ended up with brain damage. And now, to face the possibility that after losing my mental abilities and that now I face years of losing my mental abilities over the course of 5 to 10 years or longer until I die, until my brain turns to mush.

 

I am extremely tired of having to deal with the brain injury, of having to make adjustments to my life. I HATE not being me. I hate that I have to make notes to get things done. I hate that I can’t remember if I’ve taken my medications or not, or that I forget to call a prescription in, or that I didn’t fill the prescription box correctly. I hate the side effects that I get from the medications. I hate that they don’t fix the problem. I hate that I have people question my integrity when they don’t know who I am or how much I’ve accomplished and Lived through. I hate that I have to walk into work and feel like a slacker because I’m not able to work 30,40, 60, 80 hours a week. I hate that I watch the same shows over and over again and that I remember the faces but I don’t remember the story.

 

I hate the stress. I hate the fatigue. I hate that I have to go through this. It’s not fair. It’s not right, and I don’t know what to do about it. I don’t know what I can do about it.

I don’t want to live the rest of my life having other people take care of me. I don’t want to live the rest of my life dependent on medications, physical or occupational therapy. I want to be 35, and live the life of a 35 year old. I want to go back to school. I want to get into medical school. I want to be a doctor. I want to be the strong, independent person I was before the brain injury.

 

What do you do when what you want to do, who you want to be, is no longer what you can do or can be?

 

I am not sure what to do next, and I’m trying to be happy with what I have, but I’m not. There is a hole in me that’s so BIG, the disappointment is so tangible, the grief is so pungent, that I feel lost. What do I do next?

 

WHY?

I’ve been trying to stay focused on creating posts that are more about central pontine myelinolysis, what to expect, how to compare it to other brain injuries. I’ve been trying to stay away from writing about me.

Frankly, you can only take so much of listening to someone go on and on about horrible things are in their life. It’s hard living through it too, but most people don’t really care, and they don’t want to feel “bummed” about how bad someone else has it, so I’ve tried to refrain from going on and on about my feelings or my struggles with EPM. Tonight, I have to discuss about what’s going on with me.

So, you might be wondering, what’s wrong?

Today, I was told that the “basic” cognitive testing that I had a few weeks ago, showed that I have significant impairment, but that it’s not consistent. Basically, the doctor felt that my symptoms are being created or exasperated by psychological issues.

I have to say that I agree that stress, fatigue, and anxiety the issues I have worse. Isn’t that true for anyone? Even if you don’t have any brain injury, you’re just perfectly normal, doesn’t stress, fatigue, and anxiety make issues worse?

I’ve never been a strong test taker. Never. I was usually one of the last kids to turn in a test. The last college classes I took, I would run out of time, especially in chemistry. I was usually one of only 4 or 5, still taking a test at the end of the exam period, out of more than a 100 or more. I felt this was because of my perfectionism. In reality, I would just tend to over analyze questions. I would get stuck and read over the same question over and over again because I thought that there were multiple ways to interpret the question.

I have found since I’ve had the brain injury, I’ve had more issues with this. It becomes harder for me to shut off the internal dialogue I have with myself over directions, questions, etc. I will tend to confuse directions for one section of the test with other sections. For example, if you ask me to name all the animals that I can think of, my mental gears start spinning: birds. Well, birds aren’t really animals are they? Aren’t they considered more along the species of reptiles? They have a connection to dinosaurs. Do they want specific animals? Like Robin? Robin is a type of bird. I wish I could look up whether a bird is really an animal. Aren’t animals considered types of mammals? There are marsupials. I wish I could look up the answer. I really don’t want to sound stupid by saying birds if birds aren’t really animals. And what if they want specific animals.  Aren’t animals any living organism? There’s different types of Kingdoms. Shit, I’ve studied this stuff, why can’t think of the right answer? Humans are animals. Maybe I should just say humans. Good answer! My answer is humans. How about insects? FRICK!

SO, that’s just an example of how my mind works in the moment of answering ONE freaking stupid question….and they want me to to name as many animals as possible, as quickly as possible! It’s just not that easy any more. I used to be able to shift gears faster, think through things more quickly, and get to an actual correct response, but I don’t have that ability any more. I get caught, stuck.

Another example, they asked me to count the dots in the following pictures one by one, or maybe they actually said individually. I’m not sure exactly how it was worded. The first problem I have is, is staying focused and tracking the dots. The first group was scattered dots everywhere on a page. There must have been 20 or more. They weren’t organized, and when I started counting them I lost track of where I began, and I wanted to give the right answers, so I double counted them. I thought it was the answer that was important, but it was actually the amount of time that it took that they were monitoring. The next pages they started organizing the dots into groups. My first reaction, well that’s a group of five. There’s two groups of five. There’s three groups of three. It’s a total of 19. Wait, they said count them individually. Maybe this is an illusion.  They have those optical illusions where your mind looks at something and doesn’t process it correctly. Did I miss a dot? So, I counted the dots a second time. No, no I think there aren’t any that I’m missing. Are you sure? Yep, I’m sure. Ok. 19 is the answer.

So, if I had known that the answer didn’t matter, then I would have just blurted out numbers. If I realized that it wasn’t a trick question, I would have been able to respond more quickly. If I had just asked for clarification or asked them to start over once, I figured out what I was supposed to do. Frick!

Trust me. I feel stupid over the testing. I don’t know why that part of my mind is broken. I mean, I did have that problem to some extent prior to the injury, but at some point, my reason would take over, and I would just be able to answer the questions. I would be able to shut down that internal dialogue, and just take a test. At the very least, it didn’t interfere as much as it does now.

In other words, I was never quick at taking tests, but now, I’ve become discouragingly slow. It’s just harder for me to process information, directions, to figure out what I need to do and then do it.

 

I am going to say, in my defense, that I had only had four hours of sleep that night. I really wish that they did testing around the times that I’m normally awake. If I don’t fall asleep until 4 or 5 am, and I’m scheduled to take a test at 9am, I’m practically set up for failure, but they don’t start testing in the afternoon. Two pm would have been the best time for me, but doctors do testing around a typical 9am to 5pm schedule, not a 2pm to 10pm schedule.

So, what does all of this have to do with me?

The testing I did reflected poorly on me, and so my integrity has been questioned.

I am so extremely grateful that I know what my issues are, and that my friends and family believe me and know. My cognitive therapists and occupational therapists believe me and see the struggle that I experience, and they believe me.

It really seems that the testing itself is the only thing that doesn’t work in my favor, but I just don’t think that the tests account for the type of mental distractions that I have because of the brain injury. Well, I had these some of these issues before, it’s just so much worse now.

In the end, getting this news just stresses me out even more, but then I begin to regain my composure. I don’t really care what the tests say. I know what’s going on with me, and that’s what matters. I just have to brush off this bad news and regain my focus. Keep on, keeping on.

I know stress, fatigue, and anxiety complicate my problems, but I’ve always been able to work around those issues. They’ve never stopped me from doing what I wanted or needed to do.

They are causing issues now, and I’ve tried everything I can to control those factors, so that I can become more functional, but they aren’t the cause of the deficits that I have, and it has left me exasperated and frustrated.

Let me give you an example of how people can misinterpret a problem. A man is having a drink at a bar.  He’s chatting with his friends, and as he gets up to go home, his friends stop him and ask him if he needs a ride home. They suggest that maybe he call a taxi. He feels insulted because he’s only had one drink. He refuses the taxi. The next night, at the same bar, he sits down to have a drink. After a glass of wine, he gets up to leave and another person suggests that he not drive home. Again, the man scoffs at the suggestion. On the way home, he gets pulled over by a cop. The cop believes that the man is drunk. The man refuses to take sobriety test. He feels angered at the fact that people keep suggesting that he’s drunk. Since he refused to take the sobriety test, the cop takes him to jail to sleep it off. The next morning, they find the man dead in his jail cell. He wasn’t drunk at any time. He had had a stroke.

How do I feel that this story relates to my experiences? It is not uncommon for people to look at someone with a brain injury and because they do not see any physical injury on the outside, they assume that there is an external cause to the problems that you have. You don’t really have memory issues. You’re just stressed. You have trouble with concentration and reading because you’re mind is creating those problems, because you are focused on issues.

It’s so easy to judge someone when you’ve never experienced the same problem. It’s easier to put on a filter and say that these issues are mental when you’ve never lived with them.

I’ve been told by so MANY people that they’ve forgotten to pay bills. It’s normal. I’ve forgotten where I’ve parked. It’s normal. I’ve forgotten to take my medications. It’s normal.

Yesterday, I couldn’t figure out how old I was! I’m 35, and I forgot. I wasn’t sure if I was 33, 34 or 35. I could not figure it out. I forgot my son’s birthday. I forgot the significance of 9/11 (also my son’s birthday).

THIS is NOT normal for me! This was not who I was before the brain injury. I worked full time. I went to school full time. I took care of the bills. I did NOT have these issues. I’ve never ever had to have an 80 year old man have to shuttle around the parking lot trying to find my car because I couldn’t. I could do advanced math in my head without any issue. I could figure out patterns and trends. I could read through law books, Title 21 of the federal code of regulations.  Shakespeare was like a Dr. Seuss book to me. I could spend 6 to 8 hours reading through legal cases. I could spend 10 to 13 hours studying for the MCAT while working 32 hours or more in a week. What I live with now, IS NOT NORMAL FOR ME! I’ve always lived with stress, but it did not cause impairment.

To have some guy read through one to three tests and can tell me that he has my brain injury figured out, TOTALLY pisses me off. The most brilliant scientists in the world do NOT have a great understanding of how the brain works. They don’t!  Were the tests even designed for a person who has a brain injury? Does it take into consideration that the person has an issue with understanding directions, language, or writing.

I had cognitive testing done BEFORE my brain injury, and I would have difficulty completing tasks in an allotted time. I was able to get the puzzles, etc correct, but not within a standard time frame.

I was told by my cognitive therapist today that I was right. A few months ago, I told her that there is a belief that over time a person’s brain can turn to mush after they’ve had a brain injury. In a person who has had CPM/EPM who lives for longer than a few years, when they move the brain at autopsy, it crumbles. It turns to mush.

When I told my cognitive therapist this, she told me that it wouldn’t happen. (She has been working as a cognitive therapist for more than 20 years. She is an expert.) She went to a conference this weekend, and they are finding that these injuries can kill the brain slowly over time, that the brain can calcify after a brain injury. She told me that I was right.

In the end, what can I do? I have to keep moving on, but tonight, I raised my hands up to God and cried. (I don’t cry often because my immune system causes issues after.) I don’t understand, why?! WHY? Why do I have to live through this? I’ve already had a pretty tough life, but to go through this too! Why God? Why do I have to go through this too?

Can’t I just be normal again? God, I would give anything to have my old mind back! I wish I could just put this whole brain injury thing away! I wish I could get back to doing what I wanted to do. I just want to go back to school, get into medical school, work at saving people.

I wish I knew why.  I wish I could just get over it, as if I was getting over a cold. I don’t think they understand how frustrating these things are for me. I don’t think they understand how strong I am, and how hard I’ve worked, and how desperately I want to put all of this behind me, but it isn’t just a mental thing. It’s just not, and I have to learn how to work with the deficits I have and try to make the best of my life and my abilities as they are. I will continue to work with my therapists in trying to get new connections, with my doctors to get on the right medications, and try to become the closest to my old self as I can. I guess that’s all you can do when you’re living with a brain injury.

 

The moment of Now:

Oh, the beauty of having a brain injury, is that you truly don’t remember what has happened previously.  I have no idea if I’ve visited this topic or not. I’ve no idea.

It’s now over a year since I suffered my brain injury, and tonight I feel myself feeling a bit depressed over the idea that I have not gone farther than I have.

I have so many friends and family members who tell me that I’m just being negative. They tell me that if you think that you aren’t going to get better then you won’t. They tell me that it’s your mindset that influences where you go with your life.

I have to say to them, Screw off. I say that with love, but no one I know has a brain injury. No one. I wouldn’t want them to have one either.

It’s not easy. It’s unbelievably hard.

Do they even know what I go through on a daily basis?

I never know exactly what I said, if I said it, if I did it, if I didn’t do it. My mind does not work!!!!

You get over breaking a toe. You just don’t  learn to “live” with having a brain injury.

You can learn to live without an arm or a foot. You can learn to live with an illness. I had.

I wasn’t healthy before the brain injury, but I could DO things. I could fight through the pain, the fatigue, the frustration, the nausea, the headaches…all the physical issues, I was able to fight through it. I was able to work 60 to 80 hours while being sick. I could go to work and then spend my days off studying for the MCAT while I was sick.

But, when you have a brain injury, well that’s having your mind broken. The chemistry in your brain is screwed up. They way you think is broken. The way you process information is broken.

What good is a computer monitor or keyboard if your hard drive does not work?

A year ago, I had hope that this injury would get better. I have seen some improvements. I am not stuttering as much. I am not walking into walls. Ha, that’s funny! I can’t even remember the things that I used to do when I initially had the brain injury to give you an idea as to how it’s improved.

I think that’s part of the problem. I live in the now. I can not make plans because I can not envision how things will be in a week, a month, a year. I do not have the capability of saying…oh, I can’t do that because I will be doing this instead. Because in my mind, the canvas is blank, the calendar is mentally empty. I can’t say that in a year I will be in medical school or in a year, I’m going to take a vacation.

In my life, there is no next year.

I do not remember what commitments I have until I pull out my phone and check my calendar or reminders.

My son might tell me that he will be going to a party next weekend. Sure, that sounds fine. Right now, that does sound fine. I can’t remember that I wanted to get his pictures taken with his sister. It doesn’t register in this minute of my life. In a few days, I might have another plan set in my mind, like going out to dinner as a family.

Things hit me as a realization….Just now, I realized that Halloween is this week. This triggered the memory that I took off that day off from work. Why did I take that day off? I must have had a reason. I don’t have a costume. I don’t have a party that I’m going to. Trick or Treat is the day before. I don’t know.

This is just one example of how things just happen in my life. I live in the present. I don’t remember the past, and I have no idea how to plan for the future.

In this moment of now, I feel a loss. I feel melancholy. I feel jealous of those who do not know what it means to live like this. I feel ashamed that I feel so bad about the life that I should be grateful for. I feel alone because no one I know shares this life with me. And I feel hate over the fact that this injury was caused by someone else, and that person will be going to sleep tonight without any regard for what I’m living with and what I will have to live with for the rest of my life.

I’ve tried to regain my life. I’ve tried counseling. I’ve tried therapy. I’ve tried medicines. I’ve tried dozens of doctors. I’ve tried just doing it. I’ve tried exercise. I’ve tried forgetting about it. I’ve tried organizing. Now, I have to try to live with it, and to learn to live with it, and be happy with the fact that I have lost everything I was working for before the injury. I have to try to figure out how to make the most of the life that I have now, and to make that mean the most to me.

I figure out there must be a reason, and I pray with time that reason will become apparent so that I can try to make myself believe that this injury was for the greater good.

I’m certain that I am not the only who has a brain injury that feels this way. I know that there are so many people in the world that are living with the same feelings, and with that I have to say despite the negative tone in this post, I still have hope for tomorrow. What can we do but keep on keeping on?

This is a journey and even if the path is rocky, it’s still worth the view.

Life moves on:

First, let me apologize to anyone who has tried to find my site in the past few weeks. I faced a challenge, and I have to say it is an ongoing challenge of what is right for me versus what is right for others.

My purpose in writing this is blog is to help other people, and I was recently faced with a challenge of trying to decide, but what if doing this hurts me in some way or another?

It helps me, but it also hurts me. It helps emotionally to be able to put into words everything that I just can’t say eloquently in person, but it causes the physical issues with writing/typing as well. There’s also more complicated issues that writing my blog might cause, and I had to think through what I should do.

I’m still not sure what the right answer is. Do I write the blog and help other people or do I stop writing it and think about myself?

I think I would be a monumental hypocrite if I stop writing this and face the possibility that  another person lives through what I have to live through.

I do not have answers as to why I have gone through the struggles in my life that I have, but if I can help another person live through or prevent a person from going through what I have, I believe there is a purpose behind it.

I hope that makes sense. What purpose is there in life if we are only living for ourselves?

So, I’ll take the risk in hope that if you are reading this you will be help to someone else. Or maybe you will be able to find help from my blog.

Without further adieu:

I have not been crying as much lately. Maybe you get to a point where you just can’t keep crying…been there, done that, and apparently it doesn’t do anything except give me extremely puffy eyes and a headache.

I have to say that even though I am not crying as much, I am still not in a “happy” place.

I am coming to a point of acceptance that I am not the same person as I was before. Now, if you are like my therapist, you might pause and say: You have been EXTREMELY vocal about how you are NOT the same person you were before. What do you mean that you are FINALLY coming to a point where you realize that you aren’t the same person you were before?

And here is my hopefully coherent, feeble way of trying to explain it:

I KNOW I am not the same person I was before, but I’ve never really ACCEPTED that I am not the same person.

I’ve been told over and over that I could get better in time, and I’ve kept thinking that this would be the case. I did get better, but I haven’t really seen an improvement in anything in a while, and I am even beginning to see areas where I’ve gotten worse.

From the very beginning of my injury, people have been giving suggestions on what I should do to adjust to having a brain injury: make lists, write things down, underline words, read out loud, create labels, become organized, etc, and I would listen and smile and put in a fair effort to do those things, but each time I did it, I would have this unbelievable pain and stubbornes about having to do it. It irritated me. Why should I have to change the way I am? They say I should get better.  I shouldn’t have to change what I do to be the person I was before. It takes so much MORE effort. Yes, and I say over and over, THIS ISN’T FAIR!!! I just have to wait a few months anyway, and I will see improvements, but this hasn’t happened.

Each time I make a list or forget something, I become extremely frustrated and upset. It’s not fair. This is something I didn’t have to do before.

In the past few weeks, I have been resigning myself to the fact that the brain injury isn’t going to go away, and I am going to have to make major changes in my life on a daily basis in order to- not be the same person I was before, that person is fading from my memory, but to become this “new” me, to just succeed in getting through each day.

One of the main issues I am facing in this “new” me is that my ability to drive isn’t reliable and  possibly even dangerous. I have fought the reality of this tremendously.

I think driving represents to all of us a sense of independence. If I want to drive around the country side, listening to Billy Joel blaring on the radio, with the windows rolled down, I’ve always had that freedom. I could go where I wanted, when I wanted. I don’t want to lose that, but in the recent months, I’ve realize more and more that I am compromising my safety and those around me, and it’s starting to scare me.

I figure if it’s starting to scare me than those driving next to me must be about to have a heart attack.

Suddenly, I understand the frustration of those in our aging population. Driving is something that I’ve always been able to do. It doesn’t take a lot of effort. I was able to start driving to the hospital while in LABOR. I was able to drive when I had a broken foot, or when I was horribly sick, even after I had surgery.

I am now in my mid thirties, and I am facing the reality that I probably shouldn’t be driving. This is so stressful. It’s humiliating. It’s a loss of my abilities, a loss of my freedom, my independence. But, if I keep driving, what will happen if I cause an accident? What are the possible consequences?

I don’t think I have to hang up my keys yet, but I know it’s in the near future, and that is scary.

The other day, I went to a doctor appointment. I have gone to this office for five years. A friend drove me to the appointment and dropped me off. I had difficulties finding the office. I couldn’t remember what floor the appointment was on. So, I read the signs to the office. When I got off the elevator, nothing looked familiar. The name of the office didn’t seem familiar. I thought the signs at the elevator were wrong, and so I got back on the elevator and went to a different floor, but that didn’t look familiar. I had to look up the appointment information online to determine that the sign was right. I experience the same type of disorientation when I am driving. It’s scary. It’s stressful, and I have a feeling it’s not going away.

It’s a year after my brain injury, and I am finally coming to a  point of acceptance: I am not the same person I was before, and no matter what medications I try, therapists I go to, or adjustments I make, life moves on and I am just going to have to learn to accept it.

Fate:

 

You are not supposed to talk about it. You aren’t supposed to ask, but I am. Why?

I truly don’t understand, and I don’t have an answer, but I find myself asking more and more, WHY?

Was I on the wrong path in life? Is there a reason behind what I’ve gone through in the past year? Was there something I was supposed to do or something that I was doing that made a higher power intervene?

I do not understand, and it eats at me each day. Why?

I finally had an answer to 8 years of ill health. The door had opened to me. I had an answer AND a solution.

I was going to have to live with endometriosis for the next 10-12 years, but I could do that, and by removing the pituitary microadenoma, I was going to stop the deterioration in my health. I couldn’t reverse the autoimmune issues, but they were mild compared to most with the same problems. It was truly an aspirin a day that would prevent major complications to Anti-phospolipid syndrome, as well as monitoring.

I am not exaggerating when I say the door was opening. Even my scleroderma antibody elevations had returned to normal. This lifted the fear that my health would continue to deteriorate from that.

I was ready and seated to take the MCAT after spending over 12 months of long hours of preparation, sometimes studying up to 12 to 14 hours a day on my days off. After finally having answers for my health issues, with having the knowledge that everything would be fixed, I KNEW I could do it. I KNEW I could reach the goal, and I was ready.

So, WHY? Why did this happen? Why was it when things finally looked their brightest did I develop brain damage?

Why have all of the doors not only slammed shut, but I have become trapped in this freaking cage. Not only is the vision of becoming a doctor fading and the reality of each day brings the realization that I have very little chance of ever meeting it, but even working my current job and living every day life has become a struggle. From the fights that I have with my family, from the loss of being able to enjoy simple things like Sudoku or crossword puzzles, each day holds challenges that I NEVER expected to face in my life. I never thought this would be me? I don’t think I could ever imagine such a horrible fate.

And so now, I am asking, WHY? I know, I shouldn’t. I know I should be so very grateful for what I have. I should be counting my blessings that I am not paralyzed, that I can do the things that I can do. I KNOW I should be thankful, but I am not. I am and I am not.

I have to say truly that my heart aches from it each day, the battle of knowing I should be grateful and the heart wrenching fact that I am not the same person I was 14 months ago, and I am depressed about it. I am so horribly, horribly depressed about it.

I haven’t stepped inside a church for years. But yesterday, I stepped inside the church I attended from infancy through graduation from high school in order to attend my niece’s baptism. I faced my parish priest that I hadn’t seen in over 5 years. He looked at me with his piercing blue eyes and asked, How are you? My eyes immediately started welling with tears, and I could not choke out a response. He asked, Are you doing okay, and I semi-shrugged and shook my head, No, but it could be worse. I am very lucky.

How could I explain to this person in a few words that everything I’ve struggled to live for in the past 8 years has evaporated, and that I have no idea as to why, and I don’t know how I can accept this new me. How could I explain that I am terrified from the realization that I am only 35, and I have the memory of a 60 year old person with Alzheimer’s? What is going to happen to me when I am 60?

How can I explain it kills me with embarrassment to face people that I have worked with for five to ten years, and I can’t remember their name? Or that people constantly make comments about or question my integrity? How there is nothing more that I would rather do than forget that this has ever happened to me and just get back to normal?

To look in his clear blue eyes and know that being back home is a safe zone, to stand in front of this man, and know without question that he BELIEVES everything I say because he knows who I am and what I stand for…period. The relief that I got from that moment gave me strength and walking away from it gave me the realization that I MISS that safety, the safe zone. I spent two hours around people that know and love me unconditionally and that make me feel normal even when I’m not. It made me realize how much I need that and crave that.

Is that why? Is that why this happened to me? To get a better understanding of what my family means to me?

Was it to put into perspective how I am missing so many important things in my life?

Was it a way to show that I am not on the right path in life? That I should be doing something else with my life? Is this Fate intervening?

I don’t know. I really don’t know, why.

 

 

 

I can’t do it all:

 

I’ve been at a breaking point for weeks now. It seems like when you think you can’t handle one more thing, five more things are forced upon you.

All of the things that I’ve been going through over the past few weeks are related to having a brain injury, and it has made me SO angry, and so upset because there is nothing that I can do about it.

I’m stuck living with it, and there’s nothing more that I can do to fix it. Don’t get me wrong, I am trying to fix it still. I’ve just started taking several new medications to help with the things like pain in my hands, cramping, shaking, etc. I’m going to start taking medicines for ADHD to see if that will help with my focus, and I will start taking anti-depressants to see if that can help make me happy that I have a brain injury and have lost everything I was working so hard to achieve over the past few years.

You know, I’m just going to say this. I think people, doctors, therapists, all believe that when life hands you shit, you should smile about it and exclaim how fantastic it is and not feel horrible that you’ve been handed a whole load of shit.

If you lose the love of your life or a child, and spend the next few months crying over that, they believe that you need antidepressants. They believe you are depressed. I wonder what people did before they had antidepressants?

They mourned, and it was an expectation. They wore black. They stayed inside. They didn’t participate in normal social activities, but somewhere along the way, we began denying ourselves this process, and began to feel that if you were upset that the man/woman you lived with for 50 years died, that you should start taking antidepressants to help get you through it.

Now, I don’t have all the answers. I don’t. I could simply argue that people would have used anti-depressants if they had them available. We have advancements in medicine that make these wonderful new medicines available, so why shouldn’t we take advantage of them?

But, I think there is a need to find the middle.

For weeks, I’ve been struggling with the stress of dealing with lawyer stuff, family issues, work issues, health problems and then the disheartening realization that I am still unable (at this time) to return to studying for the MCAT. AND it really hit home this week that this totally SUCKS, and it’s completely unfair, and there is nothing that I can do about it.

I have SO much stress directly related to having a brain injury, and it could have been prevented. It SHOULDN’T have happened!!!

No matter what happens, I will never receive enough compensation to make up for what I have lost, and at this point, I don’t think I’ll receive any compensation for what I have lost.

So, I was at my cognitive therapist appointment and tearing up at the idea that they want me to do more there as well. I’m just so fried mentally, emotionally, etc that the idea of doing these worksheets that a 7 year old would have no problem doing about caused me to have a complete breakdown.

And then to make it even worse, my therapist looked over at me and told me that I would need to start taking antidepressants or I would need to give up things that I was already doing or wanted to do. She told me that I needed to stop doing things in order to get better because if I was so overwhelmed when I came in to work with her, then I would not be able to do anything that they needed me to do.

Of course this makes sense. If I’m so stressed out that the thought of doing mental tasks that they require me to do sends me into a tizzy, then they really can’t do anything for me.

This ramped up my anxiety and stress by 80. I mean, my therapist understands me, and she has helped me so greatly over the past several months. She KNOWS and UNDERSTANDS what I’m going through. She has the answers, and she’s a fantastic person and a wonderful friend, and if there is anyone who is going to help me get back to “normal” then it is her.

What am I going to do if I lose her too?

So, I’m left with the choice of going on antidepressants or stopping therapy. There really is no choice. I’ve already made the call to my doctor.

I have to say that even I don’t cotton to the idea of going on antidepressants, I understand why my cognitive therapist wants me to do it. I’m functioning on the edge of about completely losing it every day. She can’t work with that. And, I spend a good portion of my therapy time discussing how crazy my life is and how stressful it is, and that adds extra stress to her life.

As she put it, she sees a younger version of herself in me (sans the brain injury), and it is physically and mentally exhausting to see me make the same mistakes that she made.

In the end, she said, I can’t do it all, and I spent the night wondering what was I supposed to give up. How was I supposed to give something  up? I can’t very well go home, and say to my kids or Tom, well, I’m sorry. I’m unavailable for anything any longer, fend for yourselves. I can’t call the lawyer and say, sorry if you need answers to the questions that you want me to answer, figure it out on your own. I can’t call my disability insurance company and say, too bad if you need medical records, I have brain damage so screw you. I can’t walk into work and say, I’m just going to stare at a wall for the next 5 hours, don’t bother me.

So what am I supposed to stop doing? I have no flipping clue.

That night, I went to my psychologists office, and I’m going through all the same stressful things that I went over at my cognitive therapists office. I was overwhelmed. I am overwhelmed. What am I supposed to do?

Can you imagine my surprise when she told me that I needed to start taking medicines for ADD? She felt that I had a long standing issue with ADD, but that the brain damage has just pushed it over the edge. She believes that taking medicines for ADD would really help ground me and help keep me on task.

At this point, I will try anything. Truly, I think I will try anything. So, I added that to the list of things to see my doctor for. But, then she told me something else, she told me that I needed to give something up, that I can’t do it all. It was hard enough for someone who didn’t have a brain injury to try to accomplish what everyone wants or expects me to accomplish, so I shouldn’t put that extra pressure on myself to be perfect or to do everything that everyone wants me to do.

Here it was, two people, two extremely smart, extremely wise women telling me that I was going to have to stop trying to do everything. I have to accept that I can’t do the same things that I used to do, no matter how unfair it was. I have to stop telling myself, I used to be able to… Having that mentality, holding onto the past, will keep me from moving forward in the future. Wow, right?!

I have to learn to accept and be able to say: I can’t do it all.

 

Floating….

Last night, I had to take my little puppy to the pet ER. She just wasn’t acting right. Turns out she had eaten a penny awhile back, and it caused Zinc toxicity or something along those lines. It caused her to be severely anemic, so she needed a blood transfusion.

I knew she was sick, and on the car ride to the pet ER, she used her little bit of strength to crawl into my lap. She looked up at me with those completely innocent puppy eyes, and I knew she trusted me completely, which made it horribly difficult to just hand her over to the assistant, as she mustered up just a little more energy in the form of a protest.

That was difficult, but when they came back and told me that she was going to need surgery and the transfusion, I was tested even more. We can’t afford it. Shoot, we couldn’t afford to buy her in the first place. It was one of those spontaneous EPM reactions that I never experienced before! What the Hell was I thinking?

So when they showed me the bill, and the reality hit that I could buy two more puppies for the price to fix this one, I was left with a terrifying choice; Put this one to sleep or save her life.

Maybe there was never really any choice at all. I can’t stand hitting butterflies with my car…not kidding, I actually cringe (try living in the country and not hit a butterfly with your car), so I don’t know why I thought I could possibly euthanize my little puppy.

Guess fixing the central heating and air will have to wait another year.

I really don’t know what I was thinking when I bought a dog, but when I walked into the room where she was in her cage, and she mustered up all of her strength to stand up and walk over to me and climbed up into my arms and put her little head against my cheek, I couldn’t help but start to cry. And it was even more heart breaking when I had to put her back in the cage, and she struggled to get back to me. One of the assistants had to come over and take her.

She is so sick, and she still wanted so desperately to be with me.

It was devastatingly hard coming home last night, knowing that she was going to be in that strange place, alone, and going through surgery.

I think I cried for an hour straight.

The really pathetic thing in that is that I can’t cry without causing a severe immune reaction. If I cry for five minutes, it looks like I’ve been crying for hours. I get a severe headache, my eyes swell severely. It feels like I have sand in them, so it then hurts to blink. The next morning my eyelids will still be swollen to the point that they look translucent, and that’s only if I cry for five minutes. Because I cried for an hour, I woke with them seeping and swollen, and I have an unimaginable headache.

I was finally able to get some sleep when I found out around 5:30 am that Toffee made it through surgery, and is recovering well. Thank God!

But then I got additional bad news and with the exhausting pressure that I’m under, it seems that any news is bad news, and I don’t see silver linings. Frankly, I see lightening bolts. I see a million lightening bolts directed at me.

I’m EXHAUSTED. I’m physically, mentally, financially, and all the other ally’s exhausted. There is no more that I can take.

It’s when you hit this point in life, I think, that you simply become numb. You reach the moment where you have struggled so long and so hard that you simply can’t struggle any more. It’s time to float.

Rinse, Wash, Repeat:

Of course that’s not right, but that’s how my mind works now.

I didn’t realize for quite a while that I didn’t have it right. I thought it was, but then I realized, it’s wash, rinse, repeat.

But that’s part of the problem. I don’t do things in order or at least it takes a long time for me to do things “correctly”. I have problems doing basic things in life that most people take for granted.

For instance, I now have to spend at least an hour or more getting ready to go to the grocery. It used to take me 10 to 20 minutes to gather coupons, go through grocery ads, and figure out what we needed from the store. Now, I avoid going to the grocery store, and wait till the point that we are completely out of cheese, milk, cereal etc. At that point, I have a hard time figuring out what coupons we need, where the best deal is, and what we need from the store. It creates a huge amount of stress.

I think that’s why I tend to find comfort in my car. Yes. I find COMFORT sitting in my car. I’m not sure why. I guess, it’s because it feels like I’m going to do something productive. It might be because after a certain period of time elapses, I end up going somewhere and that tends to make me feel or believe that I have done something.

There are many days where I find myself sitting in my car with no true understanding of what I’m going to do next. I’m not sure where I’m going to go or even if I need to go anywhere at all, but at least I’m DOING something. Right?

Sometimes, I will end up sitting in my car for 15 or 20 minutes not sure where I need to go or what I need to do. Or I find myself sitting in my car trying to organize or complete the things I should have done while I was inside my house but forgot to do or was too distracted to do.

I wish I knew why the inside of my car feels so comforting, like a security blanket.

I’m guessing that part of the comfort is because there are so few distractions when I’m in there. There aren’t any kids, no puppy, no phone calls, no T.V. There is the radio, but I can not listen to it. It’s too much of a distraction. I can’t handle the noise. (Try explaining that to your 16 year old son.) I think that’s why I like being in the car. It has become a quiet place for me, a sanctuary.

Not being able to listen to the radio any more is heartbreaking to me because it was something I loved to do, but now I find it takes all of my attention to drive to somewhere or to remember little things like refill my prescriptions, or pay a bill, or go to work.

I hate how things get pushed around, and how I can’t get as much done as I used to. It makes me feel like I’m lazy. I’m not, but because it takes so MUCH more energy to do basic every day things, that I avoid doing them all together. I find that I avoid tasks like writing letters, mailing letters, calling the pharmacy or doctors office, or the insurance company, or even talking to my friends.

I will actually forget to call my friends and family, which has come with  a price. I have begun to experience an unintentional detachment

The simple things are no longer easy and the difficult things seem impossible. It truly is for me; rinse, wash, repeat.

 

About to Explode:

I haven’t posted in awhile, and that’s mostly because I didn’t know exactly what to say.

I guess, I should have gone through previous posts to determine what I could expand upon, etc, but honestly the thought never even crossed my mind.

And, I guess that’s the point. In the past few weeks, nothing seems to be cross my mind. It’s been a blank canvas of nothingness.

I’ve tried to express that experience to my cognitive therapist and the counselor that I see, but I don’t think either one of them has quite understood exactly what I’m talking about.

How could they? I’m not even sure what I mean.

My cognitive therapist thinks I’m in some sort of depression, but I’ve scoffed at that idea. Me, depressed? I get up. I get dressed. I do the things that I normally do. How could I be depressed?

Am I depressed?

I don’t know, but that’s it, right now, I don’t know anything.

It’s like someone plopped me into the ocean without any sense of direction.

I’m floating along with no idea as to what to do, and little desire to do anything.

The people that I’ve enlisted to help me, I don’t feel like they’re really helping me. Maybe that’s not a fair statement.

Maybe it’s that I don’t want to listen to the advice that they are giving me.

So, you’re probably wondering, what the Hell am I talking about?

Since my injury, my mind has been blank. I have had huge issues with figuring what it is that I’m supposed to be doing. Really, each morning I wake up, and it’s like a blank. I don’t have any plan. I don’t know what’s going to happen except go to work or cognitive therapy, and this leads to me not getting anything really important done.

Before my injury, I used to be able to get SO much done each day: study, pay bills, do laundry, go to the grocery store, go to work, make phone calls, go to a doctor appointment. ALL in one day!!

Now, if I get one or two things done in a day, it’s a HUGE achievement.

I just got ANOTHER notice saying that I didn’t pay a bill. GOD, this is driving me  crazy. I have things programmed in phone to let me know when I need to pay my bills. WHY, didn’t it get paid?!! Is this my error? It has to be.

I’m so frustrated. This is going to trash my credit history. I feel so overwhelmed!! I haven’t been late on my bills in YEARS!!! Now, it’s happening at least once a month.

I had an AWESOME, 750+ credit score, even after the economy collapsed. I don’t want to know what it is now.

I’m spending my money on truly stupid things, and I don’t remember doing it.

I also don’t remember things like eating. FOR REAL, I don’t remember if I ate something or didn’t eat, so I either don’t eat at all for 6 to 8 hours a day or I eat more than I should.

To make matters worse,  I find myself so overwhelmed from everyday tasks that I just ignore them.  I know I need to contact my student loans department, but having those conversations, dealing with sending them information, etc just gives me anxiety because I know it’s never enough. I know they’re going to want me to do MORE than what I’ve already done, which leads to more work, more time, more effort, more memory, more STRESS. So, I avoid it.

Which leads me to this: I AM READY TO EXPLODE.

I feel like it’s going to happen soon.

The pressure I feel from my cognitive therapist to do more (she wants me to do something but I can’t remember what), my therapist (who wants me to create a notebook and scripting for work), my student loan company (who wants me to send proof of my disability), my lawyer (who needs doctor’s information about my injury), my long term disability company (who needs proof that I’m still injured), my car insurance company (who needs information regarding how many hours/week I’m working), my employment attorney (who I need to reach regarding my health benefits), my employers (who think that I should be working more)…etc.

Ok, so the above seems like a good list of what I need to do, but doing those things seem SO hard. I can’t figure what to do, or what’s more important, or what each person needs, and how I can get what they want.

Don’t they understand that it’s hard enough for me just to get through each day?!! I simply can’t handle more.

Everything seems like a disorganized MESS.  Plus, each of things mentioned above will lead to MORE things that need to be done. Shit, I can’t remember if I washed my hair or not or if I ate lunch or paid a bill, how am I supposed to complete all of the tasks above?

It’s about to cause me a freaking total meltdown.

So, I create distractions so that I don’t have to deal with what I should be dealing with right now. I eat up time by shopping, or playing stupid iphone games, or checking out Face Book because it’s easier than dealing with the problems that I face everyday.  It’s easier to do nothing than to do something.

I wish I could create a little glass bubble where I could happily ignore everything in the world, not deal with any of the stress, nor be accountable for anything.

I think this is what drives my desire to just get in my car and drive to ANYWHERE. I can sit in my car and not think. I don’t have to think about anything when I’m driving, and I’m doing something at the same time, so I have that illusion that I’m accomplishing something. It’s relief, a distraction.

And that’s what I need more than anything because I don’t know what’s going to happen when I explode…

 

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