Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the month “August, 2012”

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.

Advertisements

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.

 

 

 

Post Navigation