Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

Archive for the tag “Medical College Admission Test”

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?

 

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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.

 

 

 

Drowning my sorrows:

Well folks, there are those days that make you stop and wonder why you couldn’t have been born a Romney.

It’s amazing for me to think that I should be one of the 1 billion people in the world that should have everything handed to me on a silver platter, but I wonder why I wasn’t.

I don’t know where this sense of entitlement originated. My parents were poor. I never had extravagant things growing up. I was happy until the age of 15 wearing my cousin’s hand me down clothing.

After that point, I wasn’t happy with anything. I was a teenager.

So, why is it today I feel an absolute sense of envy of all of those people I believe have more than me or who have never struggled. Is it human nature? Is it me?

Today, I got the news that my younger cousin is graduating from medical school. I am extremely proud of her. She’s always worked really hard. She is smart, beautiful talented, but I have this OVERWHELMING sense of envy.

I’ve wanted to go to medical school for the past 8 years, not because of the lucrative income, but because I’ve wanted to make people BETTER.

I’ve wanted it more than anything. I’ve worked HARD to try to get it over the past 7 years, and just when it seems like I was going to make it, I was given EPM.

I went back to  school full time, worked full time, while taking care of my family just so that I could become a doctor.

I took out TONS in student loans, sacrificing vacations, time with my family and developing friendships, with the goal to become a doctor. I wanted to make a difference in people’s lives.

Last June, I was scheduled to take the MCAT. I was facing the prospect of FINALLY making it, then I was told that I had a pituitary tumor that needed to be removed.

The pituitary tumor was going to be the ANSWER to all of my past medical issues. It really answered everything, and once I had it taken out, there would be nothing stopping me. I would regain some of my health and within a few months I would be able to take the MCAT.

Of course, I knew that by removing the pituitary tumor, I wouldn’t gain absolute perfect health. I still have ongoing issues with autoimmune problems (caused by Cushing’s Disease), but I’ve always been able to work through my going health issues to do what I need to do. My health wouldn’t get worse.

All of this has changed when I developed EPM.

I am still working towards the goal of getting into medical school, but now that goal seems ridiculous, and this time I feel like I might not be able to recover to the point of where I was before.

I struggle with working 5 hour shifts at my current job, working less than 20 hours a week! If I struggle with working my current job, then how am I going to make it through medical school and residency. I don’t know, and it’s so distressing to realize that this dream is fading from my life.

I try to push the negative doubting from my mind each day, but any time I really think about it,  I know that I’m climbing a mountain of ice while wearing roller skates.

Still, I’m pushing blindly forward with my goal, but I know what I’m facing, and I don’t know how I’m going to overcome these odds.

Because of this, I’m drinking away my sorrows tonight. I know that this isn’t going to solve anything, of course, but today it seems like everything I’ve worked towards in the past 7 years has been washed away, and I’m looking at a vast empty space.

(Let me clarify this: I don’t drink alcohol. I get sick if I do, so by saying I’m drinking away my sorrows, I mean I’m having a beer. Yeah, I know…it’s pretty pathetic, but maybe it will help me to feel better.)

I am wallowing in self pity, and I’m wondering; WHY? Why is it that I face such adversity in my life? It ISN’T FAIR!!!

I grew up impoverished, with an abusive, alcoholic father and a victimized mother. I was assaulted when I was 18 and became a single parent. I was in an unfortunate relationship when I was 22 and placed another child for adoption. I found and loved the person I believed was my soul mate, but he died suddenly. After years of handling everything on my own, I found my significant other, but our relationship has been anything but perfect, and after overcoming all of those obstacles, I became ill. Once I get the answer as to why I’ve been sick for so long and have a possible treatment, the surgery for it leads (through the incorrect treatment of hyponatremia) to my developing possible permanent brain damage. Instead of getting better, I become significantly disabled. LIFE ISN’T FAIR!! My life isn’t fair.

WHY THE F__K DO THESE HORRIBLE THINGS HAPPEN TO ME? WHAT DID I DO TO DESERVE THIS LIFE?

Just when everything felt like it was about to fall into place, my life was turned completely upside down.

The only good thing about getting knocked down so many times, is that you’re an expert at getting back up; however it’s never easy.

Tonight, is one of those days when I’m stumbling back down.

I love my cousin, and I’m happy for her success, but I have to stop and wonder; Why can’t I ever get a break?

Am I so far off course in my life that God has no choice but to slam me to the ground every chance He gets?

I wish I had the answer to that.

I should be celebrating my cousin’s success, but instead I’m wiping away tears and drinking away my sorrows. (AND I CAN’T EVEN REALLY DRINK AWAY MY SORROWS BECAUSE ALCOHOL MAKES ME SICK…isn’t that pathetic…)

I hope this finds you in better health than me, and in a position of less envy. Cheers!

 

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