Haven't been productive today

So today I didn't make it to church, sort of sucks because I was looking forward to it after missing last week due to Maggie being sick.

Anyways Ithought I would go into some reasons why I miss church and family events.

The main reason I miss church or family events is because of pain. If my pain level is an 8/10 or above I tend to stay home. This is because when my pain is that high I tend to lack the ability focus, sometimes get feverish, and also can vomit from time to time. Also high levels of pain makes me quite tired. That is why I missed today, I was in quite a bit of pain. I woke up took some aleve and my morning muscle relaxer and went back to sleep. I also tend to miss if I am passing out a lot, having seizures, or can't move/support my self upright.

These things happen from time to time. A question that comes up quite a bit is why don't I just get more pain medication or additional pain medication. The simple answer is that I do not want to take it. I would rather work through the pain than be on additional medication. Pain medication can be addictive and a person can become dependent on it. I do not want that to happen. Also medications in general are bad for you. They are bad on a person's liver, teeth, and digestive system. Also a few of mine tend to cause me to feel dehydrated. I tend to already be on more medication than I really wish.

Symbicort 2x a day
Neurotin 2x a day but can take up to 3x a day
Zanaflex 2-3x a day
Metoprolol 2x a day
Asprin 1x a day
Daliresp 1x a day
Asprin 1x a day
Imetrex for Migraines as they come

So besides the pain another reason I may miss a family function or church function is sick kids of course. With my oldest I tend to be the one who has to stay home with her.

The final reason I may miss something is distance. I do not travel well. Car rides tend to vibrate my brain and cause pain levels to increase and other symptoms severity to increase. So sometimes it is a trade-off. If I travel one day I won't be able to do anything the next day and by not being able to do anything I literally mean not anything. Staying in bed and getting up to go to the bathroom if possible.

Something else I would like to address in this post is that I do not sit around and play video games all day. I actually do get some stuff done and then the rest of the day I sleep, that is if I even bother or can get out of bed to do more than just take my pills. I usually sleep all day until Laura gets home from work. I usually don't play games until 8pm, then I only play for a couple hours Tuesday-Thursday, that is a dedicated raid time for FFXIV. Yes it is true sometimes I stay up all night until Laura goes to work the following day. During that time I don't always play games, sometimes, a lot of the time I try to pick up after the girls and catch up on the tv shows I have DVR and sometimes watch a movie from time to time. Generally speaking and this is become more true all the time I actually go to bed about 2AM and sleep until 8AM, take my morning relaxer and go back to bed till 11:00AM take my nerve pain pill, do my symbicort puff and metoprolol dose and then go back to bed. I spend a lot of time sleeping anymore. Sometimes more time a sleep than awake.

Ok time to take a hot bath to try to let the hot water override some nerve pain...

Long time no blog

Hello,

So I haven't blogged in a while. I just really haven't had the time or the energy but tonight it is 5:15 AM and I am up ungodly thirsty. So I am drinking some water. So in this blog post I first want to touch on an article I read and then I will give an update on my self.

I have looked to see if I can find the article but I can not, perhaps it was taken down? Anyways it was an article posted on one of the Chiari support group's facebook pages. At first I really enjoyed it. It was by a woman who had been in a wheel chair since she was a kid/teenager and stats out talking about being okay with being disabled, accepting it and even taking pride in it. After that it goes on about how Bieber was in a wheel chair at Disney Land and got to cut lines. Then goes on about how its nice to see someone famous (at this time it was unknown why he was in a chair) using the disabled card to get in front of a line. How it makes the disabled people the cool people and such. After this the writer continues to go on how the disabled should expect special treatment, enjoy the special treatment and even somewhat make others jealous of the special treatment. The disabled should just let others do things for us even if we can do those things for our self because the disabled served it becuase they are disabled.

This bothered me and my wife quite a bit. It makes disabled people come off as someone who has a sense of entitlement and laziness. I am a firm believer that even if a person is disabled, in a chair, deaf, blind or what not the person should do everything they can while they can do it. The moment we give into the attitude of expecting special treatment and having others do things for us that we can do our selves we lose a part of our self.

With all of that said, yes there are times that a disabled person does need help and it is okay to assist them when that happens but a disabled person also needs to be independent. There is a great Golden Girls episode about this where Rose's sister is blind (played by the same lady who played Mrs Deagle in Gremlins). Also there are times when special treatment of the disabled is required such as allowing service animals into stores, movie theaters, and other places. Allowing spots for wheel chairs in movie theaters and such. But to expect special treatment when it is not necessary is taking things too far in my mind.

Okay now that my rant is out of the way... how am I doing....

At this moment I am okay I guess. Earlier today/tonight ( as in 9/12) I wasn't so great. I went to lay down about 1:30ish PM and stayed in bed until dinner was done. Laura came to get me and my body was in extreme pain and I couldn't really move, so I didn't wake up. After that I went back to sleep and woke up a few moments later unable to see or move or speak. My breathing was also getting hard to do and my heart was for lack of better words felt odd. Soon after I gained the ability to speak and the ability to somewhat see I realized I was quite thirsty so I yelled at Laura to get me some water and she did. She had to help me drink it. The kids also had to "help"..Anyways it was at this time I started to spasm and some what have a seizure. Also breathing becamerather difficult and I stopped and restarted once or twice. I didn't stop for no long length of time but yea it sucked. To be honest I was wondering if tonight was going to be the night I left this world to go be with God. Obviously by me writing this now, it wasn't.

So you may be wondering how I feel about that. Well I would of been okay if it was the end of this life. I would of been relieved. I have given great thought on death especially death from the Christian perspective. I have come to this conclusion:

Submitting to to death is not failure nor is it giving up for the believer but rather it is fully accepting the victory Christ made for us on the cross. It is just another part of the salvation process, a part that helps us reach its conclusion. It is not a bad thing for the believer.

But....
That didn't happen and now I am still here to live and toil another day.

God Bless,

Dustin

Oh yea it is Chiari Awareness Month

Jan. Post

Greetings,

Thought I'd drop a quick post. Not really have a lot to say right now though. The cold sucks, it makes my joints hurt and hard to move around but that is pretty normal for this time of year.

I recently had a tooth pulled due to a nerve regrowing after a filling came out. The nerve was grown up and out of the tooth and got infected from a lung infection I had. It was all sorts of fun.. Dentist just numbed me up and used a pair of plyers to yank it out. Was a pretty quick  pulling.

My back has been bothering me quite a bit so I have been sitting on a heating pad quite a bit. The heating pad has been helping some.

On the plus side we had a good Christmas. We did a lot of traveling to several family events. It was an alright time but wore me out quite a bit. It took me a couple days to recover from all the traveling. We had around 3 different Christmas events to go to. It was over all pretty fun though.

Anyways I need to get off of here for now.

Ta ta for now, may write later...

Two Updates in One Month? How bout that..

Soooooooo,

I went and saw my doctor the other day and told him of my pain increase and my migraine frequency and pain level increase. He decided to put me on a new migraine medication. It works pretty well. It makes me sleep for a couple hours almost immediately after I take it but then I feel pretty fantastic. Not that I can magically walk again or anything like that but more so more functional (not laying in bed as much). This may be because the pills contain serotonin which is as some call it a "happy/wellness chemical" Anyways the pain free effect seems to last just about 24ish hours which is nice. My doctor also increased the frequency in which I take my nerve pain pills as well (neurotin).

So how have I been?

To be blunt quite miserable. A lot of pain off and on (hince the doctor visit), dizziness, breathing issues, and been weak and stiff. I've also been quite busy lately. Debating on planning a youth Halloween event or not. As I told my doctor I try to do as much as I can while I can. I have also have been finding my self nodding and smiling my way through things.

More recently ( pass 24 hours) I haven't been doing that great either heh...I spent part of the day laying down unable to get up out of bed which has really sucked. I also had some chest pains, dizziness, shortness of breath for a brief moment earlier. I took an aspirin and they eventually went away.  I hope today/tomorrow is better.

Now for some what more on the treatment of the disabled; something I touched on once before.

I want to ask those who read this, what do they see what is the first thing they think of when they see a disabled person? If you don't mind please comment on this post your honest answer. I won't judge you or be upset. I would like to say this, I hope for a variety of honest answers.

So this was Chiari month. I am unsure if Missouri had any fund raising events or not. I didn't hear any so I didn't post any info, I apologize if I missed any.

So yea life has been hard this month but I think life is hard for everyone at some point or another. Also when I said life has been hard for me I in no way mean to say my life is worse than anyone else. I believe that topic like that is somewhat relative to an individual and to said individual's own situation. Something can feel like the worse thing ever to one person and not to another, that by no means belittles another person's situation. Not that I think everything in the world is relative but this yes...

Anyways time to get kids ready for school.

Dustin

A Couple Things

Thing One:

It is Chiari Awareness Month. That means certain websites will be giving information on Chiari.

http://www.conquerchiari.org/index.html

Chiari awareness month color is purple. I thought of changing the website's color scheme etc but I am far to lazy to do so.

Now that the Awareness Month announcement is out of the way. I have been doing alright I suppose. I've been having some dizzy issues as well as some breathing issues. Nerve pain has been pretty fail as well. I get by though. I've also been having some odd pain in my left hand.

Pass the month or so has been pretty busy. We have had a family reunion which was alright, I wished more people would of showed up.

Potty training Anah has been a fun experience I suppose. I also haven't been too useful with the kids lately due to not feeling the greatest. Been in bed quite a bit the pass month. Pain levels have been high enough to cause me to pass out from time to time. I've also been blind a couple times this month. When I say blind I mean that with my eyes open all I see is painful light due to my eyes not adjusting properly. Thus extreme headache + light or keeping eyes closes for a few hours till things get better. It has been annoying. I've also been tired lately, mostly due to the pain.

With all of that said I have started playing a new game the pass couple weeks. It has been fun but it has been hard for me to play due to coordination issues etc. I should be maxed level by now but I am not :/

Well that is all for now

Saw a video

Long time no post...

So yea, it has been a long time since I have posted. I actually forgot I had this blog till like last night. Anyways I am doing well I suppose.  Been dizzy a lot lately and the heat/humidity has been driving my COPD crazy thus I have been coughing, spitting, and short of breath quite a bit. I have also been having some light sensitivity issues with my eyes but not too horrible.

Anyways the reason I am posting is because I saw this video.

http://www.upworthy.com/the-wheelchair-is-2300-years-old-theres-finally-a-better-option?c=ufb1

It basically features an exo-suit that would allow someone who is wheel chair bound to be upright and walk artificially so to speak. Personally I do see how it could benefit people in wheel chairs, though I am unsure if I would use one. I have accepted and have somewhat grown use to being in a wheel chair. Not that I do not want to be out of it by my own power at some point but I do not see it as a mode of transportation or a disadvantage. I actually have grown to see it as an extension of my self. Also for me due to other issues I have, such as passing out at random etc.

The man in the video says with the device he feels like part of society again and part of communications again. Since being in my chair I have never really felt like I am not part of society while in my chair nor have I really felt like I was left out of communication. Perhaps this is because I have accepted my situation and my life in a positive way and he has not. I remember reading a book in college how when someone becomes disabled they tend to go through the stages of grief/death as if a relative were dying etc. Denial, Anger, Bargaining, and eventually Acceptance.

Now to express my cynical side of things, the people in this video seem to assume that if someone is in this exo-suit would be treated like everyone else, where as someone in a wheel chair isn't. At least that is the impression I got by the guy talking at the end of the video. With that said, it is true people look upon those in wheel chairs differently due to the person in the wheel chair being different. I do not think this suit will change that. My reasoning is because the person is still not getting around by their own means. Yes they are sitting up, standing, and walking but they are not doing it by their own power. They are getting around but it isn't by their own power thus people will still treat them differently because in an exo-suit or in a wheel chair at the end of the day the person is still disabled. This may sound cruel and uncaring which isn't what I am trying to say, I am just stating that people who are cruel and mean to disabled people in wheel chairs will most likely still be cruel and mean to those in exo-suits. Those who think they need to do everything for a disabled person in a wheel chair will most likely still think that if the person is in an exo-suit. My final thought on the exo-suit is this: it seems like a cool idea and I do see the great benefits of it. Is it for me, most likely not. Could it help people who are in a wheel chair, absolutely. It will also cut down on complications that people get from being in a wheel chair (though some of these complications can be helped if a person does proper therapy and exercises)

Now to address treatment of people in wheel chairs because this video sort of touches on that.. As I said above those of us in wheel chairs are treated differently. Some people treat us differently and don't even realize it. Others do it on purpose. I have grown to laugh at some of the things people do. Such as people assuming since I am in a wheel chair I must be hard of hearing so people speak loudly to me. Senior citizens face that a lot as well. Other things do annoy me such as people not letting do the things for my self which I can do etc.

Those who treat us in wheel chairs differently do so because they are unsure on how to respond/react to people like us. Some look at the chair and see us helpless and want to do everything for us or just the opposite and try to force us to do things on our own that we really sometimes can't. There is a happy medium that should be reached and varies due to the condition that has put the person in a wheel chair.  My advice for those who are around people in wheel chairs is to ask if the person needs help, just don't do it for them. If they say no that is okay and if you see a person in a wheel chair fail at what they want to do themselves that is okay too. If the person needs help they will ask for it. Also those who have accepted their condition tend to have a humor about them self and learn to laugh at their failure. Also it is okay to get frustrated at a disabled person, guess we get frustrated at non-disabled people. One fun example I have seen is the preview of Michael J. Fox's new show in which he is trying to serve his family and his wife takes the spoon away and says you can have personal victory later we are all hungry. Things like that do in happen in my household and are a normal thing. Anyways... the treatment of the disabled varies person to person just try to be polite and respectful as we as people should be to each other at all times anyways.

Well I am unsure what all else to say. Have a good day everyone :)

Possible New Format

So I haven't written for a while; this is because I have been debating on changing the format of the blog. I am debating on writing here 5 days a week. Usually before I go to bed and sort of do a daily symptom list and severity of said symptoms.

Afterward maybe a random thought or rant about something or another. Sometimes it would be a positive rant sometimes a negative rant or perhaps just a reflection of my mood.

Anyways that is all for now :)