Posts Tagged ‘neurofibromatosis type 2’

You twisted fucks. You attempted to raise my guilt levels and ultimately succeeded in doing so. I was about to utilize my travel break to travel to a nine hour time zone difference and back within four days to visit my “ailing brother”. I don’t know how ailing you can be when you continue to compose jackass e-mail messages from your bedside.

I’m fucking sick and tired of being everyone’s punching bag. Enough is enough. Don’t just contact me when you need to blow a load and transfer your insanity to me. I’m fucking done with you bastards, you good-for-nothing imbeciles. Leave me alone you crazed bullies. Don’t attempt to twist my fate and my reality yet again.

You ill people continue to use me as the scapegoat so you don’t have to look at your own damn problems. Well it’s time you take a good hard look and stop fucking with my life. The moment I try to do as you say, to contact him, to communicate with him, you say, “Did you actually expect him to jump for joy when he finally heard from you?” Well maybe not jump, but judging from other people’s messages, I figured it would at least do some good.

I’m not going to sit around and pretend like nothing happened. I don’t care how sick someone is, no one and I mean no one has the right to be an evil pompous prick as he has been displaying. Fuck, I can’t even put into words how damn angry I am for falling for the trick, for allowing you to mess up my brain, yet again.

Family, what fucking family do I have? All this incident has shown me is how unhealthy and irrational all you people are and how honestly, I wish you were all dead.

It’d be a lot easier to justify not having a family if everyone was deceased. Instead, I get to look at reminders of how dysfunctional you all are and how you all hold Adam on a pedestal and how the crown prince of Neurofibromatosis Type II continues to be the diamond of everyone’s eye. I know you will likely never see his faults, and you will constantly put your hurts and fear and horrid feelings onto me. I am being who in your mind doesn’t matter and is so fucking ill. I went through unnecessary and dangerous testing because you believed I was at fault. I was sectioned off from society for years. And for what and why? Because you thick people can’t bear to think that you do anything wrong. It’s not all on me. I wish you’d show me the compassion and love I deserve. Since that won’t happen, I will continue to displace myself, and struggle on my own. Struggling on my own is better than being terrorized by you.

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You know why this sucks? It’s dormant, one day I think I’m good, enjoyed one day, and the next day, out of nowhere it attacks It messes with my mind, at least dysthymic depressed people can expect, can predict that the day likely won’t be grat if their depression is untreated.

Meds. don’t help for me, they actually make things worse. It’s called Bipolar Type 3 which is NOT bipolar, but the DSM has no way to classify as of now. Essentially, it’s that antidepressants actually make things worse, actually having an adverse or no effect from taking them. Psych. meds. are the only meds. that have no long-term evidence of efficacy, and psychiatry is the only doctor-directed field that exists nowadays.

Consistency form day to today is taken for granted by most people. I would love to know that when I feel good, it will last. I understand that it can’t be permanent, I just wish more “good” days or even times existed.

My analogy for situational depression:it’s like prey sneaking up on you in the savannahs picture Simba in Lion King when he was learning to hunt.

A friend’s analogy for this disorder; it’s like a python wrapping around you, until you have no breath to live and cease to exist. Fitting, particularly when intertwined with an eating disorder.

I was thinking about how things have become quite impersonal. Often, texting is seen as impersonal, conversations are done electronically and the value of human contact has disappeared.

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With the disease my brother has, texting or e-mail is all we have. He hasn’t learned enough sign language to communicate through a medium such as Skype. Most likely, his hearing will only decline. He’s about 90% deaf. 50% can not be restored, at least with the medical advancements that currently exist. You can’t fix auditory nerves that were ruined when removing a tumor. Because of NF2, the impersonal nature of texting has to exist because I can’t talk to my brother in another way.

I mentioned to him that specific vegetarian and vegan diets has been shown to slow tumor progression. He thanked me, he had no clue. Seriously? Health 101 people. Interesting and surprising that Barbara never mentioned to him that diet was an option, as she seeks out any sort of treatment for his disease day after day. When I told K that he’s super skinny, and that this has been attributed to the disease, K said, “or not” (referring to the possibility of an eating disorder). Hmmm. See this is why doctors ought to practice comprehensively. This is why I’ll become a doctor an provide what I believe to be the best possible route for the patients.

Ironic as all else that we both have not only neurological disorders,  but central nervous system ones at that. And Barbara (contributing to 1/2 of our chromosomes wanted to be a neurophysiologist since the age of 9 and didn’t pursue that path.

It’s my birthday today, and apparently calls are just considered an inconvenience. It’s days like this I’m reminded that I really don’t have a family willing to take time to appreciate me. Honestly, it’s just an arbitrary day that is indicative of our place in the universe at one moment which can be represented by a calendar day every 365.25 days. Wordy, yes. I don’t mind.

I kind of wish I were back in elementary school, bringing cupcakes for the class, when even if the world was crumbling around me, at least one day existed where I was the focus of people’s attention, and for one day, I mattered.

 

 

I’m starting to have almost chronic (daily) pain from my extreme tightness attributed to Cerebral Palsy.

I keep thinking about what the neurologist said a few weeks ago about how stress seizures are really common in people who have experienced pre-verbal abuse. To sum up, pre-verbal abuse, is abuse that occurs at an age before the child can speak. It makes sense though, considering I barely uttered a word until the age of three anyway.

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Growing up I was told that it was speculated that I developed CP as a newborn, probably a few days old. The story developed a bit as I grew older and could better conceptualize ideas. It was said to me that everyone (yes everyone) has clots throughout their body. The body is generally able to rid itself of these clots and there are no repercussions. Yet, since I was a preemie and came into the world at around 6 months, I was very tiny. Any clot that developed in my body could and most likely would be detrimental. That’s exactly what was speculated to have happened.

However, once my mother told me that she didn’t know I had CP until I was 1.5 years old, even though doctors said they mentioned it when I was a baby. It’s ok if you want to read that last sentence again, except no matter how I read it, or type it, it still doesn’t make sense to me.My dad has previously mentioned that doctors told him I COULD have a whole host of ailments, not that I did. I wonder if she’s confusing that with truth. No surprise there.

Might I mention that I went through my first two months of life and the concurring medical records for the first two months I was in the NICU. Every time something neurological was in the record, I paid special attention to it. I was given a battery of tests and had many many conditions charted in these records. I had a lot of diseases ranging from jaundice to severe hyaline,  membrane disease to apnea to bradycardia. You name it, I likely had it. The funny or ironic thing is that nowhere in these charts is there ANY indication of a neurological impairment.

I’m trying to play detective here and put pieces of the puzzle together. Yes, I know I over-analyze a lot of pieces of life a lot of the time. I doubt that will change. You don’t need to be Sherlock Holmes to figure this one out though. Look at this picture:

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Do you “see” any neurological issues here. Key word, “see”. A lot of babies have eyes that still need to play catch up with their brain A.K.A. one eye wanders, both eyes can’t focus on the same fixed point at the same time. This is common. Look at my eyes. There’s nothing abnormal there.

I’ve been told I was a handful as a baby (and many times thereafter). I cried often, barely slept. It makes sense for someone to have a sick baby and not want them around and try to hurt them. It also makes sense to have a caregiver get frustrated with a baby. I understand all of that. I’m not blaming anyone, probably because it would almost be Mission Impossible to find out exactly what happened 25 years ago.

Parents fighting all of the time. Annoying baby. Sick baby. Tired. Trying to do anything to make the crying stop. May have already taken it to lesser extremes in the past and resolved “issue” of finicky baby. Too late to go for a car ride to soothe baby. I don’t know, I’m just guessing in the dark here.

I’ve been looking at videos online of ways to improve the symptoms of Cerebral Palsy and am bothered because my mother seeks out every imaginable treatment for my brother and his condition (NF2-Neurofibromatosis Type 2). Why won’t she spend her time seeking treatments for me? My way of life could always be improved. After all, probably everyone’s could.

Maybe I developed CP from shaken baby syndrome, maybe I wasn’t. Either way, I’m still stuck with Cerebral Palsy and stuck looking at surgeries or advances or practices that could have improved my life had my parents sought out appropriate treatment for me as an infant. Why would you want to seek treatment for someone you didn’t want in the first place though?