Friday, December 27, 2013

Johnny Ramone's brain surgery

I'm going to try to start writing about celebrities with Hydrocephalus, or celebrities who has had brain surgery at some point. These tend to be my most popular topics and I really enjoy writing them. I have a couple Hydrocephalus ones in mind right now but I would have to more research into it, instead of putting it off until it's time to write. If I'm writing about a celebrity that actually has Hydrocephalus I'll mention it in the title. Although it's always possible with a brain injury it doesn't always happen, and I have no proof with it from what I've read about Johnny.

Johnny Ramone is the stage name of Johnny Cummings who played guitar for the American punk rock band Ramones for 22 years, starting from the time they started playing in 1974 until they broke up in 1996. Johnny and his band mates went by the name surname Ramone, which was inspired by Paul McCartney going by Paul Ramone for a short period of time before they became famous in the United States. Johnny Ramone passed away almost a decade ago from Prostate cancer. So I want to make it clear that even if I'm writing about someone who has passed away that his death and the brain surgery is not connected.

I found out about his brain surgery within the last couple of weeks and decided to look more into it. I was having a hard time finding information on it. The information that I kept on coming across was that he had gotten into a fight with a member of another punk band (Seth Macklin of Sub Zero). He was found unconscious and ended up needing 4 hours of delicate brain surgery.  The best article I found what the start of Chapter 5 of his autobiography. In it he said that he had been dropped off in front of his old apartment where his ex-girlfriend Cynthia Whitney (also known as Roxy Ramone) was sitting outside with a guy he didn't recognize. When he confronted her he ended up getting into a fight with the guy that was outside with Cynthia. He didn't remember getting into a fight, just waking up in a hospital, not knowing where he was. According to others who saw the fight Johnny had been kicked in the head multiple times. The result was a fractured skull and bleeding on the brain, which the doctors didn't think he would survive. Johnny didn't think that he had suffered any brain damage but others saw a difference in him. It did however make him more cautious of head injuries.

He had a take it easy for a while and it took a few months before he was able to start performing again. The next album that the Ramones released was inspired by what had happened, and was called "Too Tough to Die". He had a shaved head when he came back to perform which is why he wore a hat for a while. Thanks for reading :)

Saturday, December 14, 2013

Finishing the second year of writing my blog and looking for subject ideas

On the 12th of next month it will be two years since I started this blog. I had trouble for the first year trying to post on a regular basis. At the very start I was trying to write twice a week, but within the first couple months I switched to once a week and it worked pretty well for a while. I ended stopping completely for a couple months and started up again about a year ago. I started up at every other Friday and more often than not that has worked well. It wasn't until the last couple months that I've started to have a hard time coming up with topics again. Some topics I'm picking especially my series of "Media views on Hydrocephalus" takes more time researching for the subject than actually writing it. The problem is I usually don't have time to do both when I get off work on Thursday and Friday nights. I'm going to at least try to start researching at an earlier time in the week so I'll be finished by the time Friday comes around. I still intend to continue writing this blog for as long as I can, even if it means a lot more guest blogs and cutting back how often I write again.

 I've stumbled across a lot of information researching topics that I probably wouldn't have found in any other way. I've met one of my main goals of writing this blog, and that was to help others. I've been able to communicate with some of them through social media so I'm sure there are others that haven't contacted me.

I'm asking for ideas on what to write about, so if you would like me to write about a certain subject rather or not I've covered it already please contact me. I've been trying to keep up with my e-mail so if you don't know me or don't have a Facebook, you can contact me there with ideas. If you do know me, which would probably be the case because I get a lot more views from Facebook and Twitter than searches from please contact with me through social media. I'm also going to start asking more people to guest blog, so if you're interested in doing that rather or not you have your own idea for a subject please contact me in the same way. Thanks for reading :)

Friday, November 29, 2013

Noise sensitivity

I'm going to keep it short. I don't remember when I first became aware of being more sensitive to noises but I knew I was in Junior high. At the start at one of the school years we were each given a assignment organizer with a plastic cover, or a similar material. When we got them a lot of the other kids scratched them to make a similar noise to fingernails on a chalk board. I could barely stand it, but I at least don't remember showing it. With the assignment organizers it also reminded me of how hard it was for me (and still is) to stick to a routine. I associated both with Hydrocephalus, but I wasn't sure how exactly. Sticking to a routine has to do with Nonverbal learning disability but the noise sensitivity might have something to do with the shunt itself. It's common with people with Hydrocephalus but there are many who don't have that problem. The most known noises that are more of a problem is high pitched noises and sudden loud noises. People react to it differently, with some the reaction has to do with the shunt itself. Some get headaches, but others get anxiety like I do. It may go away after childhood, but not with everyone. Thanks for reading.

Friday, November 15, 2013

My tendency to lose jackets/sweaters as a kid..

I have a hoodie that I've been wearing for about 7 years now, and until last year it was the only one that I wore for that period of time. I bought it for about 50 dollars at Hot Topic and it was made by Tripp NYC clothing. It resembles their pants that were still popular with the "modern goth" crowd at the time. It's black, with green fabric on it with a zippers and chains hanging off it. It's pretty torn up now which is one of the reasons I stopped wearing it as much as I used to. My point is that it's by far the longest I've ever had any kind of sweater or jacket. I had a few that I grew out of, but with most I would end up losing them. Some years I ended up going through 2 or 3 of them in one school year because I kept on losing them. I would lose school supplies too among other things. Most often what I lost would be gone by the time I got back. Part of the problem is that I wouldn't notice that it's gone until at night or even the next morning. In the back of my mind I figured it had to do with Hydrocephalus, and I knew that there wasn't much I could do to help it. But I had a really hard time trying to convince others of that. I was always thought of to have behavior problems instead of neurological/memory problems even if I clearly struggled with other problems that had to do with Hydrocephalus and a medical device that goes until my brain. 

I still forget things on a somewhat regular basis but it's usually at work in my department's backroom so depending on what I left behind, it's usually still there when I come back. If I do lose something and not be able to get it back, it's usually something I can replace without it being anyone else's problem. I've also figured out a couple techniques to help me stop myself from losing stuff as often. If I'm going to be sitting down and will be putting something down I'll either make it a point to put it on my lap or at eye level. If I'm at work I usually stash my jacket or whatever I have with me right away so if I do leave it behind, it will be in a place that not's likely to be seen so it's not as likely to be stolen. 

I'm still not positive what causes me to lose things more often than others, and I definitely cant remember when I had different circumstances when I was growing up. There were periods of time where I was definitely more stressed out, but I don't remember if I lost more stuff when I was going through those hard times. Something that I've discovered has a effect on me when it comes to Hydrocephalus related problems in general is weather. It's different for everyone but it usually has to do with weather mainly rainstorms, allergies or weather shifts in general, and the moon. The purpose of this topic is to help other people with neurological disorders, and their loved ones. I hope to help others, especially youth to be understood when they get a tendency  to misplace things. Thanks for reading.

Friday, November 1, 2013

My personal experience with falling behind in the Public school system

This post is inspired by teacher friends, and a few parent friends. The first two parent friends that came to mind when I decided to write are both people I've met through the Hydrocephalus community. I'm writing this because of the Common core curriculum. I don't know much about it personally except from what I've seen from friend's posts and what I read about it online when preparing for this post. From what I understanding part of it is weekly tests trying to get kids on the same level. I'm sure there's a lot more to it but this is the part I'm going to focus on. I've provided some links at the bottom of this post for more information.

Most of my early years were focused on therapy for motor skills and speech problems. I started writing and reading at close to the normal time when other kids in my class was. I really hated writing but I had a few teachers and experiences that changed that. My first was my Third grade teacher, and also father of a childhood friend. I had a habit of writing in really big letters, which I've learned within the last couple years that might have to do with depth perception, but it was also something I was doing on purpose. I hated writing enough that I wanted to write as big as I could so I could fill up the space on the paper I needed to but with using minimal words. When I was in his class helped me stop the habit, even if it really frustrated with him about it at the time. It was also the same teacher who started to actually get me into writing with a few specific writing problems that helped me discover that I could really enjoy writing if I was inspired to be creative. At some point between that point and Junior high I also learned to express my emotion into writing, which mostly ended up being anger and also it wasn't something I would write directly about it. I would hide it but use it in certain characters or their actions. What inspired me even more was being limited to a specific subject for research papers in Junior high. I decided early on in Junior high to really think outside the box the next time I was able to pick out my subject, and write about something I could really get into. It resulted in excelling in papers, and usually getting close to the page limit. If I remember right the written part of my Senior project ended up being the page limit at 12 or 13 pages.

I was still one of the last to finish a writing project in the 5th grade though. I don't remember what it was about but the teacher made the students who didn't finish on time stand outside during recess try to finish. We were expected to finish but the only things we were able to use to write on was the ground or brick wall. The brick wall would cause us to poke holes in our paper and the cement ground didn't help much either. We also had the distraction of the other kids playing. Obviously none of us finished so we had to stay after school until we did. It wasn't the first time I had to stay after school for similar reasons, but usually it would be for something one on one. It was the first time and one of few times that I was embarrassed by a teacher over my learning disability. The other time had more to do with self-image and that was when I was sent to a Elementary school Track and field event and finding out when I was called out to the track for it that I was putting into a race with a bunch of kids with a lot more severe physical and mainly intellectual disabilities than mine. If either me or my parents would have been told about what was going to happen, I would have definitely bailed. I don't want to offend anyone by mentioning this, but I want to and wanted to be associated to be as "normal" as possible.

When I was being held after class or being tutored in some way it was usually because I had a really hard time understanding something, for example in the Fourth grade when I was learning how to play the viola and the multiplication table. It's something that worked time after time, and usually if it didn't happen I would be quick to fail. Thankfully now that I'm working it's something that I end up dealing with a lot less because almost every job I've had included one on one training or something that I could figure out on my own.

I learned pretty early on that I had a really difficult time with memory, mostly with short term and working memory. It started out with me always being the last to remember a weekly bible verse in a Christian based type boy scout group in the First and Second grades. The really big blow came in the Sixth grade when after focusing mainly on catching up using therapies in Elementary school I started a translation into several separate classes, a lot more homework and tests. I ended up doing very little homework and failing my tests until my Individualized Education Program meeting a couple months into the school year. I was failing all my core classes already. I had to put a lot of hard work into that year and my learning disability really started to show. The major problems I had off the top of my head was not being able to remember or at least express what I had just read right after I read it, understanding homework, and being able to store enough in my working memory to be able to pass a test the following day. I spent a lot of time doing homework that wasn't supposed to take that long to complete, and really struggled to pass tests. For most of that year even if I was working as hard as I way (along with my Dad that was helping me) I was only getting the average grade of a C. It was really discouraging to know that my friends were getting higher grades and seemed to have to work a lot less for it. I ended up just barely getting by during the rest of Junior high and failing a lot of classes during my first couple years of High school, which ended up causing me not to be able to catch up fast enough to graduate with my class. I wanted to drop out the entire time but I knew my parents wouldn't give me permission and by the time I turned 18 I was only half a credit from graduating so it would have been really foolish not to go for it.

Reading and hearing about Common core makes think about how much I struggled. I don't know what I would have done with myself if I would have had to start to have to remember information so early on for tests on a regular. Then no matter how hard I tried to end up falling behind on those tests and fall behind in that way behind peers. I honestly feel bad for kids with learning disabilities who have to deal with that blow right away, without at least in a way enjoying their first few years of school first.

If you're curious to learn more about my experiences in school I have all of my posts labeled, so those will send you to similar posts. Thanks for reading, while I hope that you may have learned something new about me, I especially hope that you've learned something about yourself or someone that you love and care about. <--Pediatric Hydrocephalus Foundation, including state chapters in 35 states currently and the Washington D.C area. The list of State chapters can be found if you scroll down the page some in the "contact us" section.

Wednesday, October 23, 2013

Reasons for not being able to write as consistently right now..

I've been writing this blog for about close to 2 years, and I've been posting at least something every other Friday since the start of this year. Before that I had taken a break for a few months when I was stressing out about work too much and pretty much dropped everything I had been doing at the time. I might be hitting that point but with medical problems this time. I'm not going to discuss any of it here. People can access my blog simply by looking up my name on Google, and I don't want to talk about it much on a page where everyone can see. It might sound silly considering how much I've written about my past and some current struggles, but that's the past and I at least don't feel people could use that against me now much. When I've spoken about current struggles it's usually things where the people who may know me or maybe have only met me a few times can use it to understand me a little bit better. Yes, it can be held against me and be used in a negative way but because it would only be the way I'm treated as a person I'm willing to take that risk. With medical problems it's something I'll rather keep it between people I'm close enough and trust enough to be Facebook friends with, and also others with the same condition but I'll still only give them a certain amount of information unless it's someone I've gotten particularly close to.

I don't want to stop writing altogether during the next few months, but it might not be necessarily every other week like it has been for the last 10 months. I had a couple posts that was a couple days late but except for that I've been pretty steady. I understand that writing is something that you can only do when you feel like it, and most if not all of friends that write blogs or other blogs don't do it on specific days so people who read it on a regular basis can get a idea of when to look for a new post. The Hydrocephalus Association and other foundations may, but I haven't been following their blogs very closely and haven't paid attention to when they post. Of course there's nothing wrong with posting just whenever you think of something to write, or as soon after as possible rather it's finding of time or just finding the desire to write. Posting on specific days was a idea that was brought up to me when I first got the idea to write a blog, and was asking for feedback from Facebook friends.

Considering you have to want to write to really do it, then I'm pretty impressed that I've been able to be this consistent with about 20 straight posts every other week, give or take a day since my last hiatus. Of course a few of these posts were guest blogs and others were ideas that I've gotten from others. As long as I still have ideas floating around in my mind, getting ideas from others and I have friends who are willing to write something once in a while I don't plan on stopping writing this blog completely any time soon. Medical problems might keep me more behind at some point, but if I know I'll need to take a hiatus again at any point because of it or other problems I'll try to post about so it wouldn't just been a sudden stop. I know people have many reasons to stop writing their blog but with a few of the blogs I've found I've noticed that they just came to a sudden stop a while before without any explanation at all. Of course people have reasons for a sudden stop like that, but it's something I'll rather do differently. I realize that people find my blog all the time because one of the posts show up in a search they do on Google, or on other transferring sites. I rarely get new followers at least that I know of but if they do or they just go digging through my other posts I'll rather not have them wonder.

By the time I had remembered to write it was the day after I normally post and I knew I wouldn't have much time to sit down and write something for another few days, forget thinking of a topic and doing research ahead of time. Thanks for reading and I hope that I'll be able to get back on schedule for my next post on the 2nd of next month.

Friday, October 4, 2013

Personal experience with childhood bullying

This is something that both me and my friend Keyt that does guest blogs for me once in a while has written about. But it's one of those topics that I feel should be brought up several times because it matters a lot more than some people think it might. My topic is bullying, and I'm going to mainly focus on childhood bullying and long and short term effects of it. It was a subject that someone that I've spoken to with on Facebook had asked me to write about. I spoke about it some in my last past that I wrote, and my most recent post that my friend wrote for me. But I feel the need to include it into the title and really going into depth with the subject instead of just one or two sections in a blog that ends up being at least a couple pages long.

I knew that I would not have any trouble writing about it, just trying to think of some events in my childhood that I would rather forget. But I just happened to stumble upon a Facebook page that has to do with making a effort to get the public school system to take bullying more seriously, and to support those currently being bullied and those that had been in the past. Reading through those comments I had found a couple people who had been diagnosed with Post Traumatic Stress Disorder. I've never been diagnosed with it and I don't claim that I have it, but what I do know is that I do have anxiety problems, even if I manage to hide it pretty well most of the time. I've always thought that struggling really bad in social situations, taking people seriously and thinking that I'm getting picked on or that someone is made at me when they're only kidding, and insomnia has been because of Hydrocephalus. The insomnia part I learned about a while back but with others things I've been finding out that it's not necessarily connected with Hydrocephalus. I'm not a professional in anyway and neither is the people I've found out about this from, but it's something that I'll be looking into and I encourage people who have a medical condition and had traumatic experiences, especially if it's before they can really remember should look into. Hydrocephalus may still have a major part in it though because just problems with the brain in general can really mess with emotions.

I'm not going to mention any names or the name of the school or school district. I've rarely done that on here and I only have when it's something really positive. However I still talk to a couple of the people that was involved, and if they remember my name all they have to do to find my blog is to Google my name. I've spoken about others in my blog before, and I would only do it if I thought it was necessary. I started this blog to help others rather or not I know them personally, to help people understand myself a little bit better and at times to help myself. I've used writing to cope ever since I was first encouraged to write at all in the third grade. I would either just write something out and not share it with anyone, give it to a teacher or someone that could help me or find me help, or give it to the occasional peer rather or not they knew that I wrote it to cope. I'll talk about this a little bit later on in my post.

If you don't know me personally or don't know me that well, or haven't read many of my posts than you might not know that unless a lot of others with Hydrocephalus except for the shunt placement I had a surgery free childhood, and I only had one appointment with my neurosurgeon when I was in Elementary school. My last series of tests to see if my shunt was working for years was done right before I started school, so I'm not including that one. I did have my therapies but except for getting pulled out of class for them, it was something that was able to go unnoticed. I don't know how aware other kids were about where I was going to but I figure that the speech therapy was more understood than adaptive Physical Ed. When I started Speech therapy when I was in preschool I couldn't speak at all, when I did say something it wasn't understood. I couldn't speak in full sentences until close to the end of Kindergarten and people usually couldn't understand me until I was about 10. A lot of the time my sister would translate, and at school sometimes my peers. I forgot which year it was but I have a memory of being spoken for/translated to a teacher on the first day of school. It kind of got on my nerves at the time, but I really appreciate it now. Before learning to speak I used hand gestures to communicate to my parents, somewhat like Sign Language but it was something that only I and my family could understand. The weird part is that I didn't really realize that I had that bad of a speech impediment. When I spoke it sounded a lot better to me than it did to anyone else. It wasn't until a speech therapist recorded my voice and played it back to me that I realized how bad it was, and really got to start to notice it and work on it. The same problem that causes my speech impediment caused me to take a few years longer to get potty trained than other kids.

When Kindergarten I was still in diapers and it was noticed. Between barely being able to speak, not being potty trained and I'm sure other things made me a prime target for bullying. Part of it was physically and other parts weren't but the physical part tended to be a constant thing, even if at some points it was a lot worse than other times. Things were said to me and I was put into a position where things would be a lot worse if I told someone so I kept quiet. It came to a sudden stop the day they got my younger brother involved and my mom caught them on the same day. I don't know who saw them doing things to me during those five years but I remember one of the guys got caught (by a campus monitor) holding me up against the wall at least once or twice. She asked us if he was hurting me or if we were just playing, he said we were just playing and I agreed because he was standing right next to me. Thinking back I have a problem understanding how she thought that it was really a situation where "we were just playing". I really wished she would have pulled me aside later on when I wasn't with the guy. I probably wouldn't have admitted it at first and I don't know how things would have turned out if I gave in and told on them but I'm just really disappointed in that certain person. If anything she could have at least kept a better eye on me, like what was already being asked to be done for me because of my shunt.

At first it was always just something that I just accepted, and dealt with as it came. I think it might have been after the worse of it that I started to think of others way to deal with it. Some of the ways I realized what I was doing more than others. I purposely decided to start to "act out" some in Junior high at least some. My intention was not to spend lunches alone anymore and to avoid getting at least physically bullied in Junior high like I had been before. I regret changing myself in some ways or at least trying to change in other ways. I realize now that the kids that I would become friends with and ate lunch nearly every day in Junior high and High school would have accepted me no matter what. I'm not sure a lot of others, but that's the part that would backfire on me later on. 

There was also a few of my peers that I took out my emotions on others whenever I felt I could. It was mainly in Junior high but also during the last couple years of high school. This isn't the most legit way of doing this, but if you were one of these people and you found my blog in one way or another I want to apologize. If you're someone that considered me a friend then or even still now, I really appreciate you putting up with my crap and still accepted me instead of not wanting anything to do with me. :)

As I managed my other major way of dealing with the emotions after the years of bullying was through writing. I was less aware of what I was doing, but unlike my other way of dealing with it, it didn't backfire on me. Actually close to the end of high school it was my method for reaching out to get help, and it worked in the form of getting counseling my Senior year. There's a copy short stories I wrote that I can remember writing at least around the transition from Elementary school to Junior high (one that I turned in a assignment, the other I wrote in class and gave to a peer) that I figure now should have come off as a cry for help especially with the one I turned in as a assignment. I never got the assignment back but I also never got spoken to about it either.

I don't remember my emotions very well but I did start feeling down more about the situation and started to have trouble sleeping around the time I was 8 or 9. But this was also about the time that school had started to become a lot more stressful for me for a variety of different reasons. Some of it had to do with the teachers but also the difficulty of learning new material. It's something that would get worse the next few years, especially the next few years. I felt that no matter how much effort I put in I was far behind at least the people I would hang out with during lunch, and it also appeared to be like that with nearly everyone else. So I gave up trying and just barely got by in Junior High and flunked a grade in High school (came close to doing it a second time too). I didn't start trying again until it was too late for me to graduate with my class. It's off topic but it could be very well had been causing some of the stress that I could get mistaken for other causes of anxiety. 

It started to get worse in high school when I really became aware of what people think of me. A mixture of that, dealing with Puberty with Hydrocephalus (think over-emotional person who was already over-emotional in the first place because of brain issues),anxiety and other personal problems started to make me have suicidal thoughts and made me a very angry person even if I didn't show or talk about any of this at all until the end of high school.

I don't remember when I started have problems with social situations including getting paranoid or desperately trying to ignore actually being social with a large group of people (especially when I don't know them at all or very well). I do know that it's gotten worse since high school and I've been trying to avoid social situations for several years now. I do get out but not without being paranoid. 

With sleep problems it started when I was in the 5th grade with Sleep walking and night terrors, but mostly sleep walking. I still think that at least the sleep walking part was a neurological thing, but I guess it's something I'll continue to look into. The problems sleeping and staying asleep started around the end of high school around the time that the sleep walking ended. Now this I know is anxiety caused even if it's something that I've only started to realize and treat recently.

I hoped that this helped you understand me a little bit better, yourself, or a loved one. Thanks for reading, and if there's anything that you feel I missed please let me know so I can add it the next time I talk about a similar topic.

Friday, September 20, 2013

Life with P.T.S.D (Post Traumatic Stress Disorder) Guest Blog by Keyt Harrington

Well, I haven't been here in a while! It's been a very busy summer with a bathroom remodel, a old-time buggy wagon restoration, farm remodel and me being sick with...what else..shunt issues.

I wanted to touch on something that relates not just to those with Hydrocephalus but everyone that walks with Earth. It's called P.T.S.D. Most people know it as Post Traumatic Stress Disorder, but I call it Please Take Seriously Disorder.
I was diagnosed in 1997 after having gone though a tumultuous marriage and divorce and subsequent issues between my parents that I was put in the middle of. I began therapy in 1999 and only stopped a couple of years ago. Here's a good description:

Most people think of P.T.S.D. as something people who have been in war deal with. That is far from true! Only in the last 10 years or so are doctors starting to recognize this condition in various other traumatic issues. If someone has been through anything from physical or emotional abuse or even medical traumas can have this disorder and I fit the bill in both of those areas.

Really, my issues could go back to when I was in school. Most kids didn't understand why I was sick all the time. No one knew how could I be out of school for months at a time and come back looking a lot different than the last time I was there, or why I would come to school with bandages or bandanas on my head. Some people thought I had Cancer or some kind of contagious disease. Most kids were decent to me, but I did have a good share of them who took what they didn't know and turned it into something it wasn't. I learned to take it and even tease myself before anyone could and it eventually got better. That was until I got married.
Whenever my ex and I would argue, he would say things like "If you weren't so stupid" or "Why are you acting like a psycho", etc. That would set me off in ways I now find embarrassing but it eventually tore my marriage apart. Subsequent relationships didn't work out well either because I would think my boyfriends hated me for one reason or another when in reality, I hated myself because I was letting the past control my every day thoughts.

In 1997 after a terrible argument between my parents that led to me having a major emotional breakdown, I went to my room and was crying so hard I couldn't breathe. That was the last thing I remembered because the next thing I knew I woke up in a hospital. A short, stocky guy in a suit was sitting on the edge of my bed and he asked me how I was feeling. Other than a raging headache I thought I was OK. I sat up to talk to him and my stomach started to reel. The guy in the suit asked me if I wanted some water and he had some questions for me. What the hell, I wish this idiot would go away because I just want to sleep. I figured I was there because my shunt failed again, it's not like it was the first time I woke up in a hospital not knowing why!

During our conversation I learned I overdosed...again. No, it wasn't the first time and it certainly wasn't the worst but it would eventually turn out to be the most pivotal. I remember asking him why he even cared, I've never met a neurologist that did. He said he was a Neuropsychoanalyst - basically a doc that studies mind and brain. I asked if attention was brought to him because I had gone as crazy as a person could go. He said the best 4 words I had ever heard a doctor say; "You're far from crazy!". I spent the next week in the hospital being asked every question imaginable when Dr. Small said my issues were caused by P.T.S.D. I had never heard of it but I was very glad to have a name for it!

It's been 16 years now since that visit from the, as he called it, "Small name, long title" lol. I was on meds for years but when my neurologist changed my anti-seizure meds, I had to go off of them and increase the dosage of one of my anti-seizure meds which helps with the "freak outs". I still have issues now and then. For example last year someone called me a retard when I was acting silly. I hadn't told that person my issue with that word but it shut me down immediately and I wasn't able to speak to them for a couple of days. More recently someone had pushed me out of plans that meant a lot to me after we had talked about them for over a month. It reminded me of my childhood when kids would leave me out of something because they thought I was too stupid or embarrassing. I ended up saying some things to that person that I now totally regret and it still puts me in tears to think about it!

This is why I have spent the last 10 years not having too many close relationships. Telling people about my Hydro and shunt and multiple surgeries, etc is bad enough. Most people know what P.T.S.D. is and that has such a negative stigma it's worse than telling people I have a seizure disorder which really freaks people out! I have even had friends tell me it's just an excuse for crying, saying things I don't mean or shutting down so easily. It doesn't give me an excuse not to have friends and be a hermit because I'm afraid a social situation will set me off either, it's just a matter of finding a balance.

So, P.T.S.D. isn't about people who have been in wars panicking when they hear thunder or having bad dreams in their sleep. There are many forms of trauma which means there are many types of P.T.S.D. and doctors are finding more every day. Someone's anger, crying easily or shutting down may because of something they are going through now or have experienced in their past. Maybe they just need someone to talk to instead of being yelled at or ignored. Having Hydro and a lot of health problems with P.T.S.D on top of it is a personal hell to say the least. Going to therapy helped but it's my family and friends who were patient with me that helped the most. I can probably count on one had how many there are but they mean the world to me!

By the way, if you look at the symptoms of P.T.S.D., one of them is difficulty falling or staying asleep. I'm finishing this at 4:30 am...while talking to Tim =)

Friday, September 6, 2013

Putting things into perspective..

This post is inspired by it being hydrocephalus awareness (September) and a recent loss of few different people with mutual friends through the hydrocephalus community on Facebook, one of them being someone that I had connected with a few years ago and spoke to a few times. Hydrocephalus has a much survival rate than it used to have 50 years ago. When the modern shunt was first invented in the early sixties the survival rate was about 5% and now it's basically the opposite with the survival rate being 95%. It's not a death but people still die from it and I've lost a few that had spoken to online, and some have their lives changed traumatically. I have to do with a lot of pain right now at least partially because of hydrocephalus but I am very fortunate compared to others.

It's also a lot common than people think it is too, it’s just that it's a mostly invisible condition so unless you know what to look for it's a condition where you might never notice that the person has it or even if something is wrong with them. Hydrocephalus impacts everyone differently and with some people you can tell that something is wrong a lot more than others. Personally with me there are things about me where you can tell pretty well that there is something different with me (especially with my speech impediment and how I look). 

1 in 500 babies are born with hydrocephalus, and another 6,000 develop it within their first two years of life (like me). Countless more develop it later on in life due to illness, injury or other reasons and some that are unknown. It's the most common reason for brain surgery in children, and the annual costs for hydrocephalus related procedures alone are more than 2 billion dollars.

Shunts are thought to be a "cure" by a lot of people who uninformed and that includes some people who have a shunt, or the family members of the person with one. It's a treatment and one that has few improvements in the last 60 years and those improvements has been mostly been few and far between. Some of those improvements (specifically programmable shunts) have caused more problems although with some people those problems are worth how much it helps compared to fixed valves. However with some people who have had fixed valves their whole lives their bodies have a hard time adjusting to programmable shunts if it happens at all. I don't mean to scare people by saying this, but I want it to be taken as a warning just in case. I wouldn't say it if I haven't heard the same thing from multiple people and have a link telling the story from one of those people. I'm not a medically professional in any way, and you shouldn't take advice from me like if I was one of them. What I say on my blog and basically anywhere else (social media etc etc) should only be taken as someone who has lived life with the condition and have spoken to many people who have it too.

Although the shunt failure was a lot worse when they were first invented and the risk of serious injury was a lot worse it still is a major problem today. Half of all shunts fail during the first 2 years, and after that the failure rate just keeps on going up so unfortunately we're never in a "safe-zone". Nearly half of all shunt operations are due to malfunctions, and another 12% are due to infections. Shunt operations are performed every 15 minutes on average in the United States alone. Shunts can cause many problems, and most of those things cannot be corrected by surgery, it's just something that we have to live with.

There is a alternative to shunts, but very few people qualify for it and it too has a high failure rate. The procedure is called a Endoscopic third ventriculostomy and it's basically having a hole put into the wall of a hole put into the third ventricle of the brain so that the excess spinal fluid can be drained that way instead.

It's also common to think that after you put the shunt in that we are just "fine". There are many challenges we have to face on a daily basis because of Hydrocephalus and I have written about many of them. The problem is that a lot of the problems we have (specifically pain and neurological issues) are invisible so you don't notice to them and very often it's not understood by a lot of people. A lot of times it results with people just thinking that we are lazy or not trying hard enough. In some cases it will cause bullying, even beyond childhood. I've personally had a lot of trouble with bullying at work, more at the job that I'm currently at more than any other. The time period I've been working there has had a lot to do with it (6 years as of this week, and the most I've stayed at any other job was a little over 2 years). But still if I would have left after 2 years or just counting the last 2 years that I've been working in my current department I still would have had to deal with a excessive amount of bullying compared to any other job I've ever been at. Some of it have been dealt with, but others can’t be proven that easily or was brought up to management at some point just to be blown off.

We have to deal with a lot of problems growing up and then as adults that doesn't necessarily isn't directly caused by hydrocephalus, but it caused by having neurological problems in general. One of the most common problems is learning disabilities, most commonly nonverbal learning disability which is also very common with children and adults on the Autism spectrum or people with attention deficit disorder. So we are commonly thought to have or are actually misdiagnosed as having one or the other.

Another common problem is bullying as adults too but more commonly as children. Basically it's done because of how we're different and children who tend to be the bully look for kids who are different or  are just weaker. I personally went through for 5 years of physically bullying started in Kindergarten and ending in Fourth grade. The only times I was asking about it was when the main kid doing the kid doing the bullying was caught a few times. The campus monitor would always ask us if he was bullying me but they would only ask when I was in front of him so I would always agree with him saying "we're just playing". She would for some reason I don't understand now accept the answer and not look into it further. I'm not sure if I would have told her the truth right away if she would just pulled me to the side and asked again later on, but I did always really wish that she would have. I never told any teachers or my parents because of threats that was made to me if I would have ever told and that I know of it was not something that was always seen by teachers. I know some of my fellow classmates knew about it, but either nothing was done or they approached me about it but never by trying to force me to tell a teacher or them telling a teacher themselves. What finally caused them to be caught was when my mom left my younger brother (who was 4 at the time) with me at the school while she went home to for a few minutes (we lived across the street of the Elementary school, and we still do). What happened next was a normal thing for me but not something that had happened with my brother around. When my mom left the group of kids came from wherever they were across the street and jumped us. My mom came back catching them in the middle of it and let the principal know what was happening. They got in trouble and after that day I never had any major with those kids again and even eventually became pretty good friends with a couple of them. I regret not telling anyone before that day, just because my brother was dragged into the situation along with me and he ended up being physically hurt by a group of kids that were twice his age. It's not forgotten and probably never will be, but at least most of those kids were forgiven a long time ago even if it was never actually said. I'm not mad or holding any grudges at any teachers or peers because especially with the teachers they didn't know what was happening. Most of the time I was targeted was after school was normally after school when nobody else was around anyway.

If you have a child with hydrocephalus or any other disability or a caretaker of one like a teacher it's very important to know the signs of bullying, and if you notice them to question the child if possible on a one to one level. They might not admit it at first but the response may indicate it even more so it's important to ask the child more than once or at least keep a eye on what’s going on.

Another thing that a lot of people about people don't understand about us is the emotionally problem that comes with having hydrocephalus. This may include having a hard time showing emotions when you should or having a hard time controlling them. Personally a problem has been with anger, although I've have it under control more now than I ever have before. A big part of it has to do with understanding it more, and that has helped with a lot of things that has to do with hydrocephalus. 

My biggest problem I ever had it with was when I was going through puberty. Now it's pretty well known that people going through that period of life has a lot of strange emotions. Imagine having those emotions with a neurological disorder on top of it that causes emotionally problems too. It's also about the age where a lot of us with Hydrocephalus really begin to realize what people think of us, and often it's something that is taken very hard. Most of time it's something that's not something that we understand. I don't have any references for this when it comes to links, just again my personal experiences and hearing other's experiences. In my case and with many others it can cause us to become really angry at the world, depressed and in some cases (like mine) have suicidal thoughts.

There's many other problems that come with the condition that a lot of people don't understand and many of them I've covered in other posts. You will also find a lot of them in the hydrocephalus teacher's guide and other links I'll be posting below. Thanks for reading, I hope I've helped you understand me, yourself or someone in your life a little bit better. If you have something that you'll like me to talk about in the future please don't hesitate to ask.

A lot of the facts I used was taken from the Hydrocephalus Association Facebook page.

Pediatric Hydrocephalus Foundation,specializing with families with children with hydrocephalus but not necessarily just them.

More information of Third Ventriculostomy

Signs of being bullied

Signs of suicidal thoughts

Teen depression guide

Sunday, August 25, 2013

Attention needed from schools for children with Hydrocephalus (a view point of someone living with it)

Sorry I'm a few days late, I ended up working a really weird schedule this week and didn't have much time except for working and sleeping. I also had a hard time picking out a topic. I had some ideas but nothing that I could write a significant amount about it, and some that I feel would be going off too much off subject. I've decided to go back to a subject that I've talked about before. One of my main goals for this blog is to help people, and while I don't know about this from a parent's point of view I can write about this on a point of view of someone with the condition itself and from what my parent's have told me. I'm going to talking about what was does to keep me safe in Elementary school, and I realize that it's different for everyone. Some had more limitations because their childhood experiences with Hydrocephalus is a lot different, or because their parents or teachers were more cautious usually because it was a different time period.

With me most of what was done when I was participating in mainstream classes, I was unaware of until years later. I did have speech therapy until high school,and a few years of adaptive P.E, both in small groups or one on one along with a Individualized Education Program meeting each year. Each thing up until Special Ed classes starting in Middle school were things that I was pulled out of class for. So I still participated in regular P.E and it wasn't too obvious that I was getting help with either thing, although it's always been pretty obvious that I have a speech impediment, especially in Elementary school.

One thing that should be done with anyone with a shunt is that is either young or not be able to recognize their shunt malfunction symptoms is to have someone who knows what they are to look after the person. This includes parents,teachers or any other care taker. I didn't know that they were, and for years every time is was brought up I didn't know what they meant by it. Some did a better job than others and in some cases a lot better of a job, but with most it feels good now that they made a point to do that for me. Thankfully nothing major ever came up and except for the shunt placement as a toddler I had a surgery free childhood.

Another thing was that I couldn't play contact sports because if I got hurt it might have damaged my shunt. It might not sound fair to some people, but it was the one thing that my neurosurgeon told my parents I shouldn't do. I wasn't interested in playing sports anyway because of other physical limitations caused by Hydrocephalus. I learned a few years ago that many kids were left out completely out of P.E and had to sit out everyday. Most of these people were born a decade or two before me, and they were the first generation of kids to be born with Hydrocephalus to have survivors who could function, due to the invention of the modern day shunt. But there are some that are closer to my age who still had to sit out. My P.E teacher never had me sit out, instead she made rules that everyone had to follow that allowed me to play football, dodge-ball etc etc. The few times the activity was something that I wasn't supposed to do she made it a option for others to sit out too so I wouldn't be alone. If it something I needed help with due to physical limitations or not having depth perception when it came to gymnastics, I was it was offered help or given it without option.

 The one thing that was done that I was hadn't been done, was when she (or the school) had been participate in the track and field day at one of the high schools in the district. They didn't explain to me what was going on at all, and neither did my parents or they wouldn't have let it happen. They had me participate in a run with the more severely disabled kids. I don't mean to offend anyone, but there's a lot more I'm capable of than some others with disabilities. At least in high school the reason I stayed in Special Education classes was because of problems not getting into habits, and organizational problems. If it wasn't for done I would have been taken out of those classes my Junior year. It really hurt being compared to people with more severe disabilities in that way now. It hurts a lot more when I get treated that way now, but that was a major part in realizing what people think of me.

I'll love to talk more about this subject either on social media or by e-mail. It's the same with other topics, but this is one of the subjects I would like to talk about again in the near future using other people's experiences. Thanks for reading.

Pediatric Hydrocephalus Foundation



Friday, August 9, 2013

How I found out I have no sense of direction..

Some of the effects of Hydrocephalus are spatial, which means relating to space. This includes poor hand eye coordination and balance issues. But it also makes us directionally challenged. We tend to have a hard time telling where North,South,East and West are. I understand that there are many other people without Hydro with this problem. But it's something that just happens to be a lot more common with us. You also may disagree, and I understand if you. However it's not something that I would consider fact without legit sources.

I have plenty of stories that has to do with me getting lost, including getting lost on my friend's street every single time I attempt to walk to his house after knowing him for 16 years. The one I'm gonna talk about is my first one, and the one that is definitely talked about the most. I may have gotten lost before on a field trip before this if I remember right. But we were indoors and as soon as they realized I was gone they went and found me pretty fast, even if it seemed like a long time to me at the time. This was also the school year I discovered how easily I could lose school supplies and jackets.

It was three days into the school year, and it was my teacher's first year teaching. I don't remember who it was but a classmate asked me if I could walk her home. She didn't know that I had to wait for my mom, and as far as I know she still doesn't know. I'm sure she lived close to the school, probably right behind the school. I lived across the street from the school so I figured that as long as I could find the school again I would be fine. I remember starting to walk the wrong direction at one point because I remember walking past the neighborhood park and then turning back around when I realized going the wrong way. Considering where they ended up finding me, I know that I must have started walking the right way but then I missed my turn. After they realized I had left the campus alone my Principal and one of the teachers went to go find me. They found me walking down a street that goes along the side of school but I had gotten about half a block down the street after missing my turn. I was walking toward a main street. I'm not sure what would have happened at that point,but I know I would have at least attempted to changed direction again.

Back at the school I decided not to tell them why I left. I would rather get myself into even more trouble, then get her in trouble for it too. I told my parents about why I left the campus a few years ago but if anyone that was involved in it is reading this,it's probably the first time they've found out why. The result was not being able to walk home alone for the rest of Elementary school, or at least for most of it. It's something that I usually bring up once in a while, and apparently it's something that my teacher at that year brings up very often. Thanks for reading :)