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...
Sunday, November 9, 2014
Saturday, September 13, 2014
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
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
Saturday, January 4, 2014
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...
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...
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