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
Tuesday, September 24, 2013
Monday, September 9, 2013
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
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
Friday, July 19, 2013
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 :)
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 :)
Tuesday, June 4, 2013
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 :)
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 :)
Friday, March 22, 2013
Reflective after ER visit
Sooooooooooooooooooo
I did end up going to the ER. I will say it was a good visit over all. I can tell that they have been doing some changes. I was seen within 15 minutes. About 10 minutes after that I saw the doctor. He was a doctor I had seen once before when I had a TIA type event. He ordered up some medicines, a few migraine medicine injections (which were stimulants of course), a medicine for vomiting because the migraine made me sick to my stomach. And finally Benadryl of all things to help calm down my heart etc due to the stimulant migraine medication. The nurse was a bit elderly though I think and couldn't see well in the dark room (room was kept dark due to my light sensitivity issues) thus a younger nurse which I have had a few other times came in and gave me my IV. They also did a CT after my light sensitivity issues went away to see if anything has changed in my brain. Of course nothing has changed..
Anyways,
I was debating on going to the ER or not. What really made me decide to go is that the pain level was putting stress on my heart and lungs causing my heart rate jumping from 120-170 BPM. Shortness of breath was also with that. The pain was quite bad, though I will say I wonder if it is just because I haven't had days like the pass few days for a few months, thus my body/mind wasn't use to it so to speak.
So going to the ER does make one reflect on death somewhat because they do ask if I have an advance directive etc. My wife and I have talked about this many times and she is quite understanding of things. Since this is my blog I thought I would share my thoughts with those who read.
I am tired, not just physically tired but also spiritually and mentally tired; even more so on days like this pass week. Not that I am suicidal or wish to hurt my self but I am ready to go and be with the Lord. I find my thoughts similar to those of Paul in Phil. 1:19-25. Though I know God is keeping me here due to His will and purpose I am torn and desire to be with God. To be out of this broken body, out of this world of sin. To not worry if when I go to sleep if I will be able to get up out of bed the next day. To not worry on what my pain level will be or if I will be so tired that I won't be able to do something as simple as play with my daughters and their My Little Pony toys. As I said though I desire to be with God out of this situation. To be with those whom are saved by God's grace and have left this world before me. To be with my God, my Christ, my King. But I am here for God's purpose, for God's will, which is a mystery.
It is a mystery to us here on Earth why God causes and allows things to happen as they do, the simple answer is for His glory of course. For this I have seen in my life, I have lead a couple people to Christ since my condition has became what it is. People whom others may of found hard to relate to. Even though I see this fruit I also still wonder why it sometimes feels like God is teasing me with death. Sometimes makes me feels like I am just on the edge, that I am just about to meet Him. I do know though due to the sinful nature of man there will be things I will never know, never have answers to.
As I said, I am tired though and my thoughts do linger on the words of Paul, "To live for Christ and to die is gain"
I did end up going to the ER. I will say it was a good visit over all. I can tell that they have been doing some changes. I was seen within 15 minutes. About 10 minutes after that I saw the doctor. He was a doctor I had seen once before when I had a TIA type event. He ordered up some medicines, a few migraine medicine injections (which were stimulants of course), a medicine for vomiting because the migraine made me sick to my stomach. And finally Benadryl of all things to help calm down my heart etc due to the stimulant migraine medication. The nurse was a bit elderly though I think and couldn't see well in the dark room (room was kept dark due to my light sensitivity issues) thus a younger nurse which I have had a few other times came in and gave me my IV. They also did a CT after my light sensitivity issues went away to see if anything has changed in my brain. Of course nothing has changed..
Anyways,
I was debating on going to the ER or not. What really made me decide to go is that the pain level was putting stress on my heart and lungs causing my heart rate jumping from 120-170 BPM. Shortness of breath was also with that. The pain was quite bad, though I will say I wonder if it is just because I haven't had days like the pass few days for a few months, thus my body/mind wasn't use to it so to speak.
So going to the ER does make one reflect on death somewhat because they do ask if I have an advance directive etc. My wife and I have talked about this many times and she is quite understanding of things. Since this is my blog I thought I would share my thoughts with those who read.
I am tired, not just physically tired but also spiritually and mentally tired; even more so on days like this pass week. Not that I am suicidal or wish to hurt my self but I am ready to go and be with the Lord. I find my thoughts similar to those of Paul in Phil. 1:19-25. Though I know God is keeping me here due to His will and purpose I am torn and desire to be with God. To be out of this broken body, out of this world of sin. To not worry if when I go to sleep if I will be able to get up out of bed the next day. To not worry on what my pain level will be or if I will be so tired that I won't be able to do something as simple as play with my daughters and their My Little Pony toys. As I said though I desire to be with God out of this situation. To be with those whom are saved by God's grace and have left this world before me. To be with my God, my Christ, my King. But I am here for God's purpose, for God's will, which is a mystery.
It is a mystery to us here on Earth why God causes and allows things to happen as they do, the simple answer is for His glory of course. For this I have seen in my life, I have lead a couple people to Christ since my condition has became what it is. People whom others may of found hard to relate to. Even though I see this fruit I also still wonder why it sometimes feels like God is teasing me with death. Sometimes makes me feels like I am just on the edge, that I am just about to meet Him. I do know though due to the sinful nature of man there will be things I will never know, never have answers to.
As I said, I am tired though and my thoughts do linger on the words of Paul, "To live for Christ and to die is gain"
Thursday, March 21, 2013
Pain
So I haven't written in a while,
I really haven't had a lot to say or what not but today I figured I write something since people do check this to see how I am feeling. Today I am miserable. Constant migraine since 6:00am with dizziness and shortness of breath. Also my vision has been blurry and having blindness in bright light type issues. I am experiencing some dizziness today, shortness of breath, and nerve pain real bad in my legs.
I haven't had these combination of symptoms for quite a while and it really sucks because you can forget what it feels like and miserable it makes you until it happens. So how do I cope. Well currently I am sitting in the living room wit no lights on, black out curtains on the windows with my monitor brightness on low. Also drinking water because my stomach is all upset due to the dizziness and migraine. Earlier I laid down with all the covers over me, not letting light in where I did some breathing exercises to prevent my self from screaming/crying in pain, I eventually passed out for a bit and woke back up.
So back to the question, "How am I dealing with this today?" Well one really can't, you just have to let it happen and run it's course. Took some migraine pills which have been failsauce today. If I am not better in a couple hours I may go to the doctor or ER. Like all post I am not really posting this to complain or get sympathy, just being informative. People always ask me what I am like on my real bad days and this ranks up there pretty high but at least I can get out of bed and I am able to move :)
Anyways the screen is making my eyes hurt, I will post back later with an update
Dustin
I really haven't had a lot to say or what not but today I figured I write something since people do check this to see how I am feeling. Today I am miserable. Constant migraine since 6:00am with dizziness and shortness of breath. Also my vision has been blurry and having blindness in bright light type issues. I am experiencing some dizziness today, shortness of breath, and nerve pain real bad in my legs.
I haven't had these combination of symptoms for quite a while and it really sucks because you can forget what it feels like and miserable it makes you until it happens. So how do I cope. Well currently I am sitting in the living room wit no lights on, black out curtains on the windows with my monitor brightness on low. Also drinking water because my stomach is all upset due to the dizziness and migraine. Earlier I laid down with all the covers over me, not letting light in where I did some breathing exercises to prevent my self from screaming/crying in pain, I eventually passed out for a bit and woke back up.
So back to the question, "How am I dealing with this today?" Well one really can't, you just have to let it happen and run it's course. Took some migraine pills which have been failsauce today. If I am not better in a couple hours I may go to the doctor or ER. Like all post I am not really posting this to complain or get sympathy, just being informative. People always ask me what I am like on my real bad days and this ranks up there pretty high but at least I can get out of bed and I am able to move :)
Anyways the screen is making my eyes hurt, I will post back later with an update
Dustin
Tuesday, January 29, 2013
I'm okay, you're okay...
Hello,
Last post I talked a little bit about being okay and not being okay. In this post I thought I would expand on what does it mean for me to be okay. Any day I am able to get out of bed I see my self as being okay. Anytime I am able to do stuff such as playing on my computer and things I am fine.
I suppose my point is that being fine and okay are relative per person. When one has a condition it is amazing what a person can learn to live with and accept as normal behavior. My personal definition of being fine also isn't what most people would consider consistent. This is because as my condition progress. My base line of fine though still involves being able to get out of bed. Eventually though it may end up being me being in bed but able to move my arms or something of that sort.
ANYWAYS... time to get kids to bed.
Dustin
Last post I talked a little bit about being okay and not being okay. In this post I thought I would expand on what does it mean for me to be okay. Any day I am able to get out of bed I see my self as being okay. Anytime I am able to do stuff such as playing on my computer and things I am fine.
I suppose my point is that being fine and okay are relative per person. When one has a condition it is amazing what a person can learn to live with and accept as normal behavior. My personal definition of being fine also isn't what most people would consider consistent. This is because as my condition progress. My base line of fine though still involves being able to get out of bed. Eventually though it may end up being me being in bed but able to move my arms or something of that sort.
ANYWAYS... time to get kids to bed.
Dustin
It's Been A While
Been a long time,
Haven't posted for a bit, I've been busy with sick kids and also with some of my own issues. I finally got a minute to post. Been in a lot of pain lately which sort of sucks but I get by. Also I have been having some fatigue and dizziness as well.
So I promised to talk about how I deal with my symptoms. Well to begin with I have to take things one day at a time. On days I have a lot of pain and fatigue I usually just stay in bed all day because it usually hurts to move and such. I also try to focus on other things when I am in pain to take my mind off of it. Breathing exercises also help quite a bit.
The main advice I can on dealing/living with a disability of any sort is to accept things how they are are. This DOES NOT mean give up on life but accept your own limitations and learn how to live with your self. Some more advice for people who are disabled and have a condition that keeps getting worse is do what you can while you can. This may sound simple but it really isn't. You have to find a support group of friends and family to really help you adjust. You also have to find a balance though, you do not want to rely on your friends and family too much and forget how to do things for your self. Sometimes when someone is disabled they tend to give up and just have everyone do everything for them, which is fine if they truly can not do anything for them self.
Sometimes it takes just learning how to do things differently. Such as I have learned to use my arm strength (when I have it) to get a lot of things done. Such as crawling up into the bathtub or pulling my self up onto a chair.
Also one last thing to remember... It is OKAY to get upset, to get depressed, and to get angry. It is normal to go through these emotions..You just can not dwell on such things and try to be positive. With that said no one can be positive all the time. I admit sometimes I fake being positive just to please people. Sometimes I hate doing this but it can be easier than not faking it. I personally do not recommend doing this; this is something that I am still working on.
Well off to the doctor..
Haven't posted for a bit, I've been busy with sick kids and also with some of my own issues. I finally got a minute to post. Been in a lot of pain lately which sort of sucks but I get by. Also I have been having some fatigue and dizziness as well.
So I promised to talk about how I deal with my symptoms. Well to begin with I have to take things one day at a time. On days I have a lot of pain and fatigue I usually just stay in bed all day because it usually hurts to move and such. I also try to focus on other things when I am in pain to take my mind off of it. Breathing exercises also help quite a bit.
The main advice I can on dealing/living with a disability of any sort is to accept things how they are are. This DOES NOT mean give up on life but accept your own limitations and learn how to live with your self. Some more advice for people who are disabled and have a condition that keeps getting worse is do what you can while you can. This may sound simple but it really isn't. You have to find a support group of friends and family to really help you adjust. You also have to find a balance though, you do not want to rely on your friends and family too much and forget how to do things for your self. Sometimes when someone is disabled they tend to give up and just have everyone do everything for them, which is fine if they truly can not do anything for them self.
Sometimes it takes just learning how to do things differently. Such as I have learned to use my arm strength (when I have it) to get a lot of things done. Such as crawling up into the bathtub or pulling my self up onto a chair.
Also one last thing to remember... It is OKAY to get upset, to get depressed, and to get angry. It is normal to go through these emotions..You just can not dwell on such things and try to be positive. With that said no one can be positive all the time. I admit sometimes I fake being positive just to please people. Sometimes I hate doing this but it can be easier than not faking it. I personally do not recommend doing this; this is something that I am still working on.
Well off to the doctor..
Saturday, January 19, 2013
So what is wrong with me?
Hello,
Today I am going to be addressing what exactly is wrong with me. It can be confusing and not everyone is always understanding of Chiari and other medical conditions/disabilities. One of the main issues with Chiari is that it is what is called an invisible disability. In other words not all of it's symptoms can be seen; such as nerve pain. So no one can really know how a person with Chiari is feeling but that person. Personally my dog (pictured on my profile) always tend to know how I am feeling and can even catch me when I pass out. Be warned if I am having a bad day and you are not my wife and kids or close family member she will not let you inside the house if no one else is home.
So what exactly is Chiari? Chiari is more technically called Arnold Chiari Malformation. It is a deformity of the brain in which the cerebellum (usually just the cerebral tonsils) grown down into the spinal column of the neck. Some correction can be done with brain/neck surgery. For this surgery they shave the vertebrae in the back of the neck down to practically nothing and "bungee" the tonsils to the back of the skull. This surgery has a 75% success rate, with a 25% of symptoms return during some point in the person's life. 10% of the 25% fail rate there is no visible reason for symptom return and symptom progression. After seeing several doctors across the state and in contact with both doctors and other people with Chiari via e-mail it has been concluded I am within the rare 10% of the 25%. With that said, one doctor I did see comment on that my cerebellum is somewhat enlarged, not just my tonsils, this can cause pressure to be put on the brain and brain stem.
Okay so now I am going go over symptoms that I have been dealing with off and on the pass few years. Overall there are 100's of symptoms associated with Chiari and someone who has Chiari can have any of these symptoms at anytime, in any combination. I am going to list the symptoms I have personally dealt with. I do not always deal with all of these symptoms at once, sometimes only a few, other times quite a bit at once.
Chronic Migraines/Head Pressure Pain
Neck Pain
Light Sensitivity which can lead to painful blindness
Ringing in ears
Loss of hearing
Dizziness (pretty constant just worse at times than others)
Chronic Fatigue/Extreme Lack of Energy
Hyperactive Insomnia
Nerve Pain (described as pins and needles pain but extremely worse than when a limb falls a sleep)
Paralysis (sometimes from waist down, from neck down from time to time)
Stiffness
Muscle Weakness
Balance Issues
Loss of sense of taste
Word Retrieval/Word Confusion Issues
Memory Loss/Confusion
Mood Swings
Depression
Loss of Speech (most likely vocal cord paralysis)
Echolalia (bad stutter in which brain sends signals to say a word or sound repeatedly)
Cardiac Events (brain tells my heart to do dumb things that feel/look like heart attacks)
Facial pain/facial sagging at random
Fainting
Drop Attacks (similar to fainting but I am awake and aware of what is going on)
Seizures
Muscle Spasms
Shakiness
Stomach Spasms/Nausea
Blurry Vision
Lack of Sensation (mostly in hands but can be other areas)
On top of having Chiari I do have other medical conditions as well. First to mention is scoliosis. My spine contains two curves, one in the upper spine and one in the lower spine. These curves may of been caused by my Chiari Malformation, through muscle spasms occurring while I was growing/developing . These spasms can cause the spine to slightly shift out of position a little at a time until maturity is reached. My scoliosis is at a phase in which it should be operated on but any form of operation would be extremely risky due to my brain deformity. The scoliosis surgery would involve fusing metal rods/plate up and down my spine in a Wolverine fashion so to speak. There is always a risk of permanent paralysis with this surgery. This risk is increased with people with Chiari due to the brain growing into the spinal column. The scoliosis does cause me lower back pain quite a bit but I have learned to deal with it as I have had lower back pain since Jr. High.
I also have a heart condition in which one of my heart valves opens up backwards. This causes some chest pain from time to time. More so it causes an irregular heart beat. My heart can slow down and then speed up. Once I was diagnosed with Chiari I learned that this heart condition was common with a flexibility mutation common in people that have Chiari. The mutation is called Ehlers-Danlos syndrome. Basically the person have extreme flexibility due to how the muscles are put together. Since I have been able to put both legs behind my head and at one time could bring my leg fully vertical parallel with my face since Jr. High it is likely I have the muscle mutation as well, though I have not been officially tested due to it being a mutation with no treatment.
The final medical condition I have is asthma due to premature birth. My asthma has recently gotten worse and now I am on a COPD medication as well as Symbicort twice a day. The breathing issues may be Chiari/brain related due to my brain can tell parts of my body to do rare/unusual things.
So yea, that is all that is wrong with me. Tomorrow or in a few days I will do another post on how I personally deal with the symptoms.
Thanks for reading
Dustin
Today I am going to be addressing what exactly is wrong with me. It can be confusing and not everyone is always understanding of Chiari and other medical conditions/disabilities. One of the main issues with Chiari is that it is what is called an invisible disability. In other words not all of it's symptoms can be seen; such as nerve pain. So no one can really know how a person with Chiari is feeling but that person. Personally my dog (pictured on my profile) always tend to know how I am feeling and can even catch me when I pass out. Be warned if I am having a bad day and you are not my wife and kids or close family member she will not let you inside the house if no one else is home.
So what exactly is Chiari? Chiari is more technically called Arnold Chiari Malformation. It is a deformity of the brain in which the cerebellum (usually just the cerebral tonsils) grown down into the spinal column of the neck. Some correction can be done with brain/neck surgery. For this surgery they shave the vertebrae in the back of the neck down to practically nothing and "bungee" the tonsils to the back of the skull. This surgery has a 75% success rate, with a 25% of symptoms return during some point in the person's life. 10% of the 25% fail rate there is no visible reason for symptom return and symptom progression. After seeing several doctors across the state and in contact with both doctors and other people with Chiari via e-mail it has been concluded I am within the rare 10% of the 25%. With that said, one doctor I did see comment on that my cerebellum is somewhat enlarged, not just my tonsils, this can cause pressure to be put on the brain and brain stem.
Okay so now I am going go over symptoms that I have been dealing with off and on the pass few years. Overall there are 100's of symptoms associated with Chiari and someone who has Chiari can have any of these symptoms at anytime, in any combination. I am going to list the symptoms I have personally dealt with. I do not always deal with all of these symptoms at once, sometimes only a few, other times quite a bit at once.
Symptoms
Coordination/Dexterity IssuesChronic Migraines/Head Pressure Pain
Neck Pain
Light Sensitivity which can lead to painful blindness
Ringing in ears
Loss of hearing
Dizziness (pretty constant just worse at times than others)
Chronic Fatigue/Extreme Lack of Energy
Hyperactive Insomnia
Nerve Pain (described as pins and needles pain but extremely worse than when a limb falls a sleep)
Paralysis (sometimes from waist down, from neck down from time to time)
Stiffness
Muscle Weakness
Balance Issues
Loss of sense of taste
Word Retrieval/Word Confusion Issues
Memory Loss/Confusion
Mood Swings
Depression
Loss of Speech (most likely vocal cord paralysis)
Echolalia (bad stutter in which brain sends signals to say a word or sound repeatedly)
Cardiac Events (brain tells my heart to do dumb things that feel/look like heart attacks)
Facial pain/facial sagging at random
Fainting
Drop Attacks (similar to fainting but I am awake and aware of what is going on)
Seizures
Muscle Spasms
Shakiness
Stomach Spasms/Nausea
Blurry Vision
Lack of Sensation (mostly in hands but can be other areas)
Other Conditions
On top of having Chiari I do have other medical conditions as well. First to mention is scoliosis. My spine contains two curves, one in the upper spine and one in the lower spine. These curves may of been caused by my Chiari Malformation, through muscle spasms occurring while I was growing/developing . These spasms can cause the spine to slightly shift out of position a little at a time until maturity is reached. My scoliosis is at a phase in which it should be operated on but any form of operation would be extremely risky due to my brain deformity. The scoliosis surgery would involve fusing metal rods/plate up and down my spine in a Wolverine fashion so to speak. There is always a risk of permanent paralysis with this surgery. This risk is increased with people with Chiari due to the brain growing into the spinal column. The scoliosis does cause me lower back pain quite a bit but I have learned to deal with it as I have had lower back pain since Jr. High.
I also have a heart condition in which one of my heart valves opens up backwards. This causes some chest pain from time to time. More so it causes an irregular heart beat. My heart can slow down and then speed up. Once I was diagnosed with Chiari I learned that this heart condition was common with a flexibility mutation common in people that have Chiari. The mutation is called Ehlers-Danlos syndrome. Basically the person have extreme flexibility due to how the muscles are put together. Since I have been able to put both legs behind my head and at one time could bring my leg fully vertical parallel with my face since Jr. High it is likely I have the muscle mutation as well, though I have not been officially tested due to it being a mutation with no treatment.
The final medical condition I have is asthma due to premature birth. My asthma has recently gotten worse and now I am on a COPD medication as well as Symbicort twice a day. The breathing issues may be Chiari/brain related due to my brain can tell parts of my body to do rare/unusual things.
So yea, that is all that is wrong with me. Tomorrow or in a few days I will do another post on how I personally deal with the symptoms.
Thanks for reading
Dustin
Friday, January 18, 2013
It Has Begun
Hello,
Welcome to my blog. This blog will serve a few purposes which I will get into later but I wanted to start off by saying this blog is in no way a cry for attention of sympathy.
The first reason for this blog is to have a set place for me to talk about my brain deformity and provide information about the deformity and about my self for those who are interested.
The second reason for this blog is for me to do a random rant about once week. I use to do those on MySpace a long time ago and people actually enjoyed them.
See You Around!
Welcome to my blog. This blog will serve a few purposes which I will get into later but I wanted to start off by saying this blog is in no way a cry for attention of sympathy.
The first reason for this blog is to have a set place for me to talk about my brain deformity and provide information about the deformity and about my self for those who are interested.
The second reason for this blog is for me to do a random rant about once week. I use to do those on MySpace a long time ago and people actually enjoyed them.
See You Around!
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