Chronic pain (Part one): What I want others to know.

I've refrained from posting anything that from posting about my current health issues on my blog because I don't know if anyone I know if any of my acquaintances that aren't trusted enough for me to be friends with them on Facebook, or upper management from my work ever looks at my blog or will find it. I'm assuming that if anyone in corporate has found it that it would have been brought up to me or one of my managers at some point. I've had ongoing issues that partially mostly has to do with my hydrocephalus, but having do with other health problems as well that has caused me to have a constant splitting headache since the end of 2010, and daily headaches for about a year and a half before that. By constant I don't mean daily or off and on, I mean it never goes away. Before anyone asks I've been seeing doctors including my neurosurgeon for the majority of the time that it's been going on. They've found at least one of the sources of it that does have to do with my Hydrocephalus, but we're having issues fixing it. I do also plan on getting back on track with some of those doctors soon, and if things still don't work out I intend on getting other opinions. So my topic today is about what I want people that I know about my chronic pain. I also hope that it helps others that have the same kind of issues, rather it's encouraging to them or it's something that they can share with others so that they can understand their pain as well. 

I've never been prescribed stronger pain meds, just low dose anti-depressants and low dose anti-seizure meds by multiple doctors to try to "fix" the problems that way. None of them have worked and the Botox treatment they tried worked enough that I couldn't really tell any difference going through the process. But I could definitely feel it when it stopped working several months later. I would be willing to constantly be going with the Botox treatment but I wasn't but the part that the insurance doesn't cover adds up really quickly, and I can't afford to keep going. So instead I take over the counter meds, usually just at work and especially on days where a lot of heavy lifting is done because I work in the produce department at a grocery store. It might not seem like a job that requires heavy lifting, but most produce boxes/containers are at least 30 pounds, and the a lot are between 45 and 60. I've gotten some slack for calling that heavy lifting from people whose jobs require to lift a lot more, but it's a lot for someone with health issues like mine and for someone that has never has a job where I have to lift 100+ pounds. It took a while to even remotely get used to lifting that much, and it helped me burn fat and gain a significant amount of muscle over time. I also assume that it works the same for lifting even heavier amounts. Back to the subject, it gets pretty obvious that I take pain killers more often than people are usually advised to , and what I keep on hand at work looks like a lot, especially considering there's some things that I don't take regularly. I've gotten slack from some coworkers about it, some that I've been open to them about my chronic pain, and others almost not at all because I'm afraid that they'll use that information against me, which has happened in the past. It's not something that is recommended to take on a regular basis, but my health problems are not normal and I've gotten the okay for all the doctors I've been seeing recently to keep on taking it that way. There is also a difference between what is commonly recommended dosage on pain killers to take on the bottle, and how much doctors will say it's okay to take if you're a chronic pain sufferer (depending on the doctor of course). I almost always take closer to the higher 2nd recommended dosage, and I'll admit that sometimes I take more than I should. The people who freak out that I take pain killers, or some others that don't usually freak out when they see me taking more than it says on the bottle to take. Also pain killers doesn't completely take away my pain, it just puts a dent in it, it just makes it more tolerable and makes me function better. 

The first year or two dealing with frequent and then chronic pain was the worse, after barely getting headaches at all for 20 years despite living with a neurological disorder my whole life. But after that in a way I got used to, of course I'll never completely get used to it, especially since considering how the last several years has gone, that it will keep on getting worse until there's something done about it. During this time I couldn't really hide my pain, and the majority of my complaining about it, either in person, or on Facebook was during this time. I started to lose friends at this point, not just because I started to have to cancel plans and slowly stop attending things outside of work, but because of all the complaining I did on social media about it. People who especially didn't understand, just saw me frequently complaining on Facebook overlooking the reason behind it. So there's some that assume that deleted me because of it, and some that were straight forward that they were sick of seeing my negative posts "every time they opened Facebook" and deleted or blocked me over it. After that time period it became in a way that I can't really explain, a different kind of pain. It's gotten worse since then, but still a different kind of pain that I don't need to complain about it as often. It also got old to me as well, complaining about something that's not going away, especially during that period of time when I wasn't really doing anything about after trying the first 2 or 3 times. I complain once in a while on Facebook, but refrain on it because I don't feel the need to complain as much as I did for years, but I get tired of the way the posts get responded to. I also don't to have it seem that I'm doing it to get attention, I do it as a way to vent. Also the greeting of "How are you?" changes with you have chronic pain, and from what I've noticed from interacting with customers at work that it happens when your life just really sucks too. It doesn't feel like a greeting to me, and definitely to others with chronic pain considering what I've learned from other chronic pain sufferers. It feels more like a question, instead of a greeting. There's some that actual want to know how someone is doing when asking that question, but even with the majority of those people "I feel like shit" or a equivalent (less obscene) response to that isn't a reasonable response. So especially someone that you don't know, which is more common when you work in customer service "good" is the only reasonable response, which is also typically the 2nd part of the greeting. I and others with chronic pain feel like we're lying to someone when we answer the question we feel like we're lying to them. If I'm talking to customer then I respond with a positive answer, which still might not always be good. But if I'm talking to someone that I know, again it's usually at work when I'm asked that question I tend to skip answering then ask them how they are instead. I realize it's rude, but the majority of people that ask me are the same ones that would get just as butt hurt if I answered with something along the lines as "I feel like shit". I definitely really don't want to answer with "good" when I can, but I haven't decided which other way of answering would be the rudest. 

I have ways of dealing with it, rather those ways may be natural or not. One way is I've become a hermit, and I usually only break out of my shell when I have to force myself to at work. This could be taken two ways, the first being that I don't attend as many activities outside of work as much as I use to, or as much as I wish to. I've had multiple friends cut me off because of this too, not understanding how much it takes out of me. If not intentionally, because I'm just not at those social functions in the first place. The second way and the main point I'm trying to make is that I tend to not pay as much to my surroundings. I live in a pretty sketchy neighborhood, so if I'm walking to or back from somewhere I force myself to pay attention more. I do that at work mostly on the sales floor when on the clock, because customers wouldn't know what I'm dealing with so it's just assumed that I'm being rude and inattentive. Unless I'm really stressed or just have to be really huffing it, which makes it harder to not be a hermit. I'm probably more of a hermit in social situations, not even just at social functions but when I'm out doing things like running errands.  Being a hermit, even when I force myself to be more social, causes me to miss overhearing things that people expect me to, or how I use to do it before my health problems started kicked into gear. Being a hermit is probably equally as much if not more of just a part of my body dealing with chronic pain. The second way I deal with it not so much, at least not on purpose at first. It's mind over matter, which in the beginning I had ways of doing it that would make the pain almost unnoticeable. But when the pain got worse, those ways of dealing with it stopped working almost completely. But those ways that I prefer not to mention what they were, isn't technically mind over matter. Mind over matter is focusing your mind on something else, so that you feel the pain less. Some claim that it doesn't work or doesn't work for them, but they tend to not be trying hard enough, or don't understand how it works. The way that works the best for me, is keeping my mind busy at work, doesn't work as well when I don't have as much to focus on outside of work. Chronic pain also builds over pain tolerance over time, as in my head would hurt a lot more and I wouldn't be able to function at all if it would as hit me as hard as it is now. Much less painful headaches use to cause me not to be able to function in the beginning, which also goes along with my point of it being a different kind of pain earlier on. It also makes any other pain that I have that's not associated with the headache a lot less noticeable, which can be a real problem. For example, if I don't see myself cut myself or see a cut reopen, it usually results in me bleeding and not realizing it until I see the blood. 

I have more that I was going to post about on chronic pain, but it's an important and will probably get a lot of views, so I don't want to bury what needs to be said in this post. I plan to post about this subject at least a third time, so if there's anything that anyone to know about chronic pain or if you would like to do a guest blog and speak about your own experience with it, or anything neurological related in addition to it please contact me. Either on the comments or contact me via E-mail, via Facebook or on the several social media sites that I'll be posting this to. Thanks for reading :) 

September is hydrocephalus awareness month :)

September is national hydrocephalus awareness month,which was helped passed in 2009 by the pediatric hydrocephalus foundation.Although I'm not doing as much as I want to or even as much as I did last year,I'm still taking some part in it.I changed my facebook cover photo and profile picture to hydrocephalus related pictures.Also I've been writing status updates and posting pictures.I'm also trying to use this month to start talking about my condition more publicly,instead of just online.The reason for that is to let people know why I act differently,what I really deal with,and that there might be a point where I'll need brain surgery again,and it might be very sudden.

Awareness is important for any medical conditions,and even more for conditions that are invisible.A "invisible" condition is one where you can't tell someone has it by looking at them.You can't see my scars and the only time someone could notice that I've had brain surgery was right after I had it as a toddler.You can see my shunt on my neck and collar bone,but it could be missed or mistaken for something else like a vein.The ways that it effects me are usually mistaken for normal problems,or even just not caring.

Another important reason for awareness is for people who are uneducated or just ignorant about medical conditions.Other than hydrocephalus some of these include down syndrome,and lupus.A common misconception about hydrocephalus that's it's been cured because of how well the treatment can work when it comes to being mentally function able.Also because the treatment usually shrinks the skull back to the normal size or close to it.It's something that's usually seen and made fun of because people think of hydrocephalus the way you would see it on google images.The majority of pictures on google that is tagged with hydrocephalus are other children and some adults with extreme hydrocephalus.Then most of them were from before sixty years ago when the first effective shunt was first invented,and in third world countries.That's what causes people to believe it's cured,and they wouldn't be able to spot someone with hydrocephalus because that's the only thing that comes to mind.Extreme hydrocephalus is also commonly joked about as "waterheads" or involved in urban legends.A well known comedian who has made a joke about "waterheads" is Larry the cable guy,who also helped give a lot of the impression that people with hydrocephalus are mentally retarded.

A personal and important reason for awareness for me is to make people connect my name with hydrocephalus,and I don't mean only think of me for that.So that when they meet someone else with it,or may have it,or if someone else that they known is dx'd with it they will know who will come to for questions and support.I don't mean coming to me and asking questions that they should ask a nsg.Instead having someone to talk to that knows what it's like to have the condition,on top of asking the doctor questions as well.

Thanks for reading,and I'm hoping to post more on a regular basis instead of skipping weeks because the melon season should be coming to a close in about a month.

Not all disabilities are visible,and not everyone with ones needs a wheelchair.

I've been told a couple times lately that I'm not disabled.When I've been told this they mean they don't see it in the work,not so much that I don't actually have one.This is coming from people who know I have hydrocephalus and someone who doesn't.The first time I was kind of offended because my first thought that my "disability" doesn't actually exist.Then later on he mentioned why he thinks that,and even if he still doesn't understand how it effects me I still respect him for it a lot more than people who think the opposite of me.My disability is invisible technically compared to others,meaning that it doesn't effect me physically as much as others.A example of this is that I'm not in a wheelchair and unless people don't know me or are to ignorant to get over stuff like my speech impediment than people know that I don't have a intellectual disability The reason I ended up staying in special ed classes wasn't because I wasn't smart enough to take certain classes with everyone else.It was because I couldn't keep organized at all and didn't know why,and my memory failed me when it came to remembering to do homework.When I did remembered I struggled to remember what I had studied the night before when taking the test.It wasn't limited to these problems but most of it I know now is directly related to having a brain injury.

My disability is hydrocephalus and it's considered that because of the brain injury and condition itself,and everything that may or may result of it.Rather it's actual learning disabilities or just the side effects of brain injury.It's also considered a disability because of the pain it causes,and even if you can't believe it surgery doesn't "fix" it every time or even a option.Everyone has experienced pain and most have had migraines or at least headaches.Think of how it effects you and imagine how it effects people who have to deal with it on a constant basis,not just with hydrocephalus or other neurological conditions but with anyone who has conditions that have to do with constant pain.It isn't always obvious and a lot of the time daily routines can still be done,but that doesn't mean that it's doesn't make things a lot harder.

I've been working hard to overcome all the side effects of my brain injury and anyone who has known me for a long time,knows how much I've struggled.Rather or not they know what causes it,it's always been a part of my life in every way.It's not something that's just not going to go away and I've had to deal with certain things like worse again like my speech impediment,and if/when I need surgeries again than it will mean I would have to re-learn things again each time.With a lot of the side effects like organization skills I've improved a lot and you don't always notice it as much if you look at my work area compared to what my backpack looked like in high school.With others like short term memory loss I've learned to hide more than I use to.If you look at the work of others and look at mine then you won't always be able to tell I'm the disabled one.But also a lot of people don't try when it comes to things like that because they don't think it really matters,but with people like me we've been working hard to be "normal" our whole lives or starting when we became disabled.So remember that not disabilities are visible,and not everyone with one needs a wheelchair,thanks for reading.