Well about 2 months ago I began losing the vision in my left eye. It was not a gradual thing, I just woke up and it was like I had a cloud of cotton balls blocking off about 80% of my vision. I was still able to differentiate light and dark, but only a small part in the center was actually like normal vision. To make matters worse, for whatever reason, if I was around a lot of movement it made me nauseous. Going back to my medic training I started experimenting to see if it was visual or something else that was causing the nausea. Sure enough, it was an after effect of the vision loss. By covering the left eye up, I was fine nausea wise and able to go about my day.
With MS, every day can be a challenge. Sometimes I feel like my life is a Star Trek episode as I boldly wonder what the hell else is gonna go on. I refrain from saying "go wrong" , as well, I am too stubborn to think there is a circumstance I can't adapt to. My wife and kids are very supportive even some of my friends as well. They know stuff is gonna happen and they don't really make a big deal about it. I feel like if they can do it, well by God I can do it too.
I stopped driving for about a month and half, afraid with how to deal with this. My right eye still sees 20/20, and whats left of my left eye does as well, but I have to wear an eye patch. (on a side note parents it is NOT okay for your kids to run around calling someone who has vision loss a pirate over and over and you not correct them. I get that they are small, I do not blame the children. I blame the parents that can;t take 5 seconds to correct their child! I remember my parents firmly "Do not point your finger at people or talk about them openly its very rude!:)
I stopped working for the comic store I help out at a bit because frankly I was scared I would not be able to hold up my previous level of help and my wife is so busy with school and her own job and running the kids around it was next to impossible to toss something extra on. This really knocked me on my butt. I felt like a certain amount of freedom was taken away from me. I felt like even more of my manhood was being taken away.
Folks, sometimes you just got to have your pity party. I think a lot of times we have difficulty as men letting our egos drop out of the picture for a moment. That is why so many old vets become bitter old men. We never learn to adapt like we should and instead feel like no one will understand and burrow down in ourselves, miserable at the the thought that we have lost something and incapable of touching our emotions to deal with it. Sadly, I was in this spot.
The great thing about medical marijuana is its propensity for making one get in their own head. To really reflect. Most people dismiss but it is a very real state depending on the strain. Being a MMJ user means most of the euphoric effects no longer happen to me. Honestly it just reduces my awareness of pain, reduces my spasms and most importantly wipes out the neuropathic spasms in my head also known as icepick headaches. It is was during a particularly bad icepick that went on for about 6 hours (to the uneducated motrin, tylenol advil ,these will not even touch icepick headaches because its actually the damaged nerves spasming sending signals out. Most conventional migraine treatments of the nonnarcotic type will not even work. And well the opiates, they are continuing treadmill in that you have to keep increasing the dose in order for the relief to keep working, leading to many other issues down the road.
Anyway, I digress, It was during this moment of intense self reflection, that I stumbled on my own ego and kicked it to the curb. I am a father, it is my job to show my children that even through the greatest adversity we have to keep trying. How could I possibly give up like this and sit around feeling sorry for myself. Sure, I was hiding it from my children well enough, but at some point it was going to come out. I have seen this happen way too many times in other people. So I took a nice long gimp at 1:00 AM around the block and determined that the Chris that re-entered my home was going to be the Chris who would deal with things.
I have started driving locally again, I have picked back up working for the comic store and I even committed to hosting Lego Club for the school every week instead of every 2 weeks. It is important with any critical illness to still keep goals. I think the human spirit is very much tied to our physical well being. Practice makes perfect is so valid and the only way to pull yourself out of a funk is to practice not being in one. That does NOT mean that you don't deal with your problems. Running away or hiding from things never makes a situation better it always catches up. You just shelf it in a place where you still know its there but where you can keep an eye on it and take it on and off the shelf as you need to. A problem is a problem and needs to be solved ,BUT very few problems can be solved by fixating on them. There is no easy fix, instead there is coping. And isn't that what this world is about after all? Coping and patience?
Sorry its been awhile I tend to write a couple blogs then feel like this or that isn't valid. Just know that if you are out there coping with MS like me, you are not alone. We can be strong together and if anyone ever has questions for me regarding MS I am more then willing to give what I know or just listen if that is what is needed.
Until next time, Keep your chin up
Chris
Monday, January 28, 2013
Saturday, May 12, 2012
My little secret!
I have been hiding a secret for a very long time now. My parents, family, and wife all know, but it is something that I have felt very mixed up about for a while. I am one of those dirty Medical Marijuana users. I feel due to recent events that have entered my life (my town has decided that the local dispensaries are eyesores, even though if you have ever been to my town they are honestly some of the best looking businesses in the town both appearance wise, and well cleanliness wise as well.)
I attended the council meeting where Council members (who have been REAPING tax profit in from at least one of the dispensaries if not all three for 4 years,) have now decided after 4 years has transpired that they don't want to be known as a medical marijuana town. I mean after all, being the proud town with 3 gas stations, one of which is at the east entrance of our town and greets people coming in with iron bars on windows and meth pipes sold as incense burners. Our most recognized spot is a biker bar (which has amazing burgers) and we're known for mine carts and a bargain grocery store that sells dented and expired goods at a low price to people who either don't speak English, or just cant afford to go elsewhere. I digress of course, the point being they said the dispensaries were entered by riff raff and people who do not look sick. The general public was forbidden to speak because it was a work session, but the place was packed with patients that despite being riff raff (thanks Pro Tem Mayor Joe Baker for that lovely term) all somehow looked no difference appearance wise then the people sitting on the council.
Multiple Sclerosis causes several issues. The first and most powerful one is of course, the way it slowly but surely reduces your mobility. You suffer micro spasms, extreme spacisity (feeling stiff like a board like you just got done working out after not doing it for 10 years, fell asleep, and woke up to the muscle fatigue.) and weakness in the limbs as they stop responding to you. Then comes the pain...oh ya called neuropathy it will start as a slight burning, pins and needle feeling, like your leg is asleep with a bad sunburn....and then it gets more and more intense over time. It does not go away. You can hit this sucker with any over the counter pain med you like but most will not even touch it. The usual drug of choice.....morphine! In various different forms morphine or opiate are used to treat severed pain by depressing the CNS system. They are extremely addictive, and have this country in a stranglehold as they are prescribed like candy for just about anything anymore.
I was faced with the choice of how to manage this. I sucked it up for 4 and 1/2 years, but when I couldn't sleep regularly (MS also likes to give you long bouts with insomnia as it activates your bodies immuno system causing endorphins to pump for what it percieves is to help fight an infection. By the way the infection just happens to be your brain and spine its nibbling on) After talking with several doctors about my issues, One suggested that while the VA could not and would not prescribe medical marijuana, there are many doctors that would for MS on the civilian side and it was actually being seen worldwide as a drug of choice for MS patients, for if taken correctly it could actually give energy back, help with spascity and the effects that help with MS related symptoms extend well beyond the duration of the euphoric effects. I talked with my wife about it, and still gave it a few more months.
Finally I went to a Neurologist outside the VA whom confirmed a lot of what I had read, and while he wasnt willing to "prescribe it due to the negative stigma but would gladly give me a script for hydromorphone" Gee, thanks Doc, you rattle off the reasons to do it then offer me liver failure, renal failure and addiction in a bottle. Anyway, I went to another doctor who wrote the presciption up, I sent it off with a request to the state and got my lovely red card authorizing me to pick up medical marijuana. I tryed vaporizing it, which was alright, but I began to have severe craving to smoke, something I fought tooth and nail to quit years ago. I have tryed to avoid smoking it as A) I have children and B) it reeks and finally C) I dont care what anyone says inhaling anything into your lungs besides air is probably a bad idea. Tar is Tar. So on to the edibles route.
I can honestly say, I had never touched a drug besides alcohol and cigarettes in 35 years up to this point. I know a lot of my friends of course had, but I still felt like as a father, I had to be very careful how I approached this. Well, frankly, I treat it like any other medication, it is far removed from being within my kids reach, (I stay away from refrigerated versions of edibles for that reason), and low and behold it works wonders. I would not call it a wonder drug BUT, I can move around again. Often without my cane crutch, (I still have to use my Brace for my right leg because I have foot drop now), but I was actually able to go outside and do things again. The tremors would all but stop, and the pain oh the pain would go to a dull roar. The best part is once I figured out the dose that worked for me, I got sleep...oh my god glorious sleep.
My whole family noticed a big difference in me. Even through relapses, it has helped to shorten the span of the relapse without my having to get a hefty dose of steroids. All in all, I feel like I got the best possible sort of life I could have back for the condition I am in. Worse case scenario, I might eat that leftover sandwich in the fridge, but other then that I sit and watch tv with Wendy, write, read (I must admit books are amazing whilst a little euphoric) or play games. Only on my very worst days do I use the mini vaporizer with Sativa to get a little pick me up for doing outside stuff. My need to nap has waxed and waned but over all I have been much better about not needing to nap as much.
Still I was feeling bad. I was legal in the state of colorado. I went to a legitimate dispensary which looks more like a walgreens then a head shop, and you would be hard pressed to ever know I used it unless I told you. My children know I use it and why, but of course have never seen me do it. I had to be open and honest about it with those close to me, because well, it still is a drug, and even though I can say after almost a year and half using it, I can go days without having to take a nibble on anything edible wise. I don't feel I need it, (not like I use to wake up at 1 in the morning needing a cigarette, realizing I was out and driving to a gas station just for a smoke) It doesn't control me it just gives me a measure of my life back.
So why talk about it here, publically? Because I want to help folks understand that this medicine can be used non recreationally and for good purposes. I won't go on a tangent about the many uses of the Cannabis plant beyond medicine. Leave it safe to say, Its a real shame more people with extreme pain issues and mobility problems don't have access to this. I intend to go in and fight this Monday at the council meeting to ban our dispensaries. My Dispensary, Dacono Meds is a clean, professional environment. Its not a head shop with some stoned out 20 year old behind the counter talking about his bong of choice. This medication in conjunction with Yoga actually works wonders on returning lost flexibility due to MS related problems.
Just remember, love it or hate it, if its helping someone to regain their life, there has to be something positive about it. I am all for regulation, control and keeping the MMJ business clean cut and clear. Please card me, Please verify that I am not over using, Please treat it like any other controlled substance. And finally, Please treat me as a patient and not a criminal. Yes there are people with red cards who don't need them its a fact. but that total is not even a fraction of the people with prescription pills that do not need them and abuse them.
So there ya go, the clean cut boy from brown county has joined the legion of people who have used marijuana in their life. I do not feel bad about the choice I have made any longer. I will fight tooth and nail to keep our dispensary open here in Dacono. Because frankly without it, I will have to search long and hard for another dispensary that is as professional as this one.
Keeping my chin up
Chris
I attended the council meeting where Council members (who have been REAPING tax profit in from at least one of the dispensaries if not all three for 4 years,) have now decided after 4 years has transpired that they don't want to be known as a medical marijuana town. I mean after all, being the proud town with 3 gas stations, one of which is at the east entrance of our town and greets people coming in with iron bars on windows and meth pipes sold as incense burners. Our most recognized spot is a biker bar (which has amazing burgers) and we're known for mine carts and a bargain grocery store that sells dented and expired goods at a low price to people who either don't speak English, or just cant afford to go elsewhere. I digress of course, the point being they said the dispensaries were entered by riff raff and people who do not look sick. The general public was forbidden to speak because it was a work session, but the place was packed with patients that despite being riff raff (thanks Pro Tem Mayor Joe Baker for that lovely term) all somehow looked no difference appearance wise then the people sitting on the council.
Multiple Sclerosis causes several issues. The first and most powerful one is of course, the way it slowly but surely reduces your mobility. You suffer micro spasms, extreme spacisity (feeling stiff like a board like you just got done working out after not doing it for 10 years, fell asleep, and woke up to the muscle fatigue.) and weakness in the limbs as they stop responding to you. Then comes the pain...oh ya called neuropathy it will start as a slight burning, pins and needle feeling, like your leg is asleep with a bad sunburn....and then it gets more and more intense over time. It does not go away. You can hit this sucker with any over the counter pain med you like but most will not even touch it. The usual drug of choice.....morphine! In various different forms morphine or opiate are used to treat severed pain by depressing the CNS system. They are extremely addictive, and have this country in a stranglehold as they are prescribed like candy for just about anything anymore.
I was faced with the choice of how to manage this. I sucked it up for 4 and 1/2 years, but when I couldn't sleep regularly (MS also likes to give you long bouts with insomnia as it activates your bodies immuno system causing endorphins to pump for what it percieves is to help fight an infection. By the way the infection just happens to be your brain and spine its nibbling on) After talking with several doctors about my issues, One suggested that while the VA could not and would not prescribe medical marijuana, there are many doctors that would for MS on the civilian side and it was actually being seen worldwide as a drug of choice for MS patients, for if taken correctly it could actually give energy back, help with spascity and the effects that help with MS related symptoms extend well beyond the duration of the euphoric effects. I talked with my wife about it, and still gave it a few more months.
Finally I went to a Neurologist outside the VA whom confirmed a lot of what I had read, and while he wasnt willing to "prescribe it due to the negative stigma but would gladly give me a script for hydromorphone" Gee, thanks Doc, you rattle off the reasons to do it then offer me liver failure, renal failure and addiction in a bottle. Anyway, I went to another doctor who wrote the presciption up, I sent it off with a request to the state and got my lovely red card authorizing me to pick up medical marijuana. I tryed vaporizing it, which was alright, but I began to have severe craving to smoke, something I fought tooth and nail to quit years ago. I have tryed to avoid smoking it as A) I have children and B) it reeks and finally C) I dont care what anyone says inhaling anything into your lungs besides air is probably a bad idea. Tar is Tar. So on to the edibles route.
I can honestly say, I had never touched a drug besides alcohol and cigarettes in 35 years up to this point. I know a lot of my friends of course had, but I still felt like as a father, I had to be very careful how I approached this. Well, frankly, I treat it like any other medication, it is far removed from being within my kids reach, (I stay away from refrigerated versions of edibles for that reason), and low and behold it works wonders. I would not call it a wonder drug BUT, I can move around again. Often without my cane crutch, (I still have to use my Brace for my right leg because I have foot drop now), but I was actually able to go outside and do things again. The tremors would all but stop, and the pain oh the pain would go to a dull roar. The best part is once I figured out the dose that worked for me, I got sleep...oh my god glorious sleep.
My whole family noticed a big difference in me. Even through relapses, it has helped to shorten the span of the relapse without my having to get a hefty dose of steroids. All in all, I feel like I got the best possible sort of life I could have back for the condition I am in. Worse case scenario, I might eat that leftover sandwich in the fridge, but other then that I sit and watch tv with Wendy, write, read (I must admit books are amazing whilst a little euphoric) or play games. Only on my very worst days do I use the mini vaporizer with Sativa to get a little pick me up for doing outside stuff. My need to nap has waxed and waned but over all I have been much better about not needing to nap as much.
Still I was feeling bad. I was legal in the state of colorado. I went to a legitimate dispensary which looks more like a walgreens then a head shop, and you would be hard pressed to ever know I used it unless I told you. My children know I use it and why, but of course have never seen me do it. I had to be open and honest about it with those close to me, because well, it still is a drug, and even though I can say after almost a year and half using it, I can go days without having to take a nibble on anything edible wise. I don't feel I need it, (not like I use to wake up at 1 in the morning needing a cigarette, realizing I was out and driving to a gas station just for a smoke) It doesn't control me it just gives me a measure of my life back.
So why talk about it here, publically? Because I want to help folks understand that this medicine can be used non recreationally and for good purposes. I won't go on a tangent about the many uses of the Cannabis plant beyond medicine. Leave it safe to say, Its a real shame more people with extreme pain issues and mobility problems don't have access to this. I intend to go in and fight this Monday at the council meeting to ban our dispensaries. My Dispensary, Dacono Meds is a clean, professional environment. Its not a head shop with some stoned out 20 year old behind the counter talking about his bong of choice. This medication in conjunction with Yoga actually works wonders on returning lost flexibility due to MS related problems.
Just remember, love it or hate it, if its helping someone to regain their life, there has to be something positive about it. I am all for regulation, control and keeping the MMJ business clean cut and clear. Please card me, Please verify that I am not over using, Please treat it like any other controlled substance. And finally, Please treat me as a patient and not a criminal. Yes there are people with red cards who don't need them its a fact. but that total is not even a fraction of the people with prescription pills that do not need them and abuse them.
So there ya go, the clean cut boy from brown county has joined the legion of people who have used marijuana in their life. I do not feel bad about the choice I have made any longer. I will fight tooth and nail to keep our dispensary open here in Dacono. Because frankly without it, I will have to search long and hard for another dispensary that is as professional as this one.
Keeping my chin up
Chris
Wednesday, May 2, 2012
The walking bucket list!
It came to my attention about 3 months ago that something was up with my body. Multiple Sclerosis has always been a rather unwanted houseguest in my body, but a good portion of the time, once you adjust to the pains and oddities you can sort of adjust to it. However about 3 months ago, my left side started a numbness and tingling thing. I was of course at first freaked out a little, but then I played it off as just another new symptom. I didn't have chest pain or pressure, I was just tingly like pins and needles all over my left side from my foot to my jaw. I started the usual batch of calls to my doctors, with the "Hey just figured I would update you, etc etc" to be responsible about it.
As is common with the VA, of course it takes months to get the ball rolling on anything, so I am still in the middle of getting my MRI scheduled on my spine and brain, just so I can see what new lesions I've acquired. (I am secretly hoping to one day have a lesion that looks like Elvis or Jesus, after all wouldn't that be a conversation piece!) Of course such an urgent MRI was given the uptmost importance of being booked in July (sarcasm on) But after spending a pleasant amount of time explaining to the obviously well trained phone rep at the VA (Federal employees are almost as nice as state DMV employees!) that in the cases of brain and spine issues time is tissue, and lets just skip the whole my calling my doctor my doctor calling them and yelling bit and actually get the MRI done within the next 30 days. It worked, sort of, though I am pretty sure they probably spit on my records or something.
Anyway, having spent as much time in the medical field as I had, having worked with some incredible doctors in my military days, I have truly made it my business to learn the ins and outs of my disease. It has helped me SO many times. As such, I know that while I am still walking right now, if my legs keep getting worse (I have to wear a brace permanently on my right foot to keep it from catching and now neither foot can feel anything) I will have to make some choices. Essentially I have accepted that a wheelchair is in my future. I was ,like anyone I think, scared at first about this. Losing the ability to walk is sort of like losing some of your freedom. I even cryed a few times about it. The big tattoo guy balled like a baby because hell, it is scary. You really take into account your own frailty the first few dozen times you fall down your own stairs or into something.
However, soon I decided I would make a walking bucket list. Why wait to do things before your gonna die. I want to do things before I cant do them on my own two feet. I won't go into the whole list but there are a few things some might find odd. So I will list off the top ten things on my walking bucket list.
1) Walk with my mother somewhere outside near my old home
The flora and fauna of Brown County and along Spearsville Road and Bittersweet is so unique I want to smell the dew and the flowers, fight off the dog sized mosquitos and smell the Wagler's Cow Farms. I love walking past the Wagler's farms, they have always been just decent hard working salt of the earth kind of people. I know it lowers my mom's stress which is constant due to having to take care of my ailing grandmother day in and day out 6 hours or more a day. The woman is a saint and deservds whatever break she can get.
2) Make the long walk down to Tim Parker's grave.
I have visited Tim's grave a few dozen times as a grown man. I like to let him know he is missed, that I know what an incredible man he would have been had he been given the chance, and that I am thankful for all the joy I have had and how I still think of him from time to time and thank god for the chance to have known him.
3) Cut grass on the old homestead
I don't know why but I love cutting grass in Indiana. Probably because its not burnt and shriveled scrub grass like we have here in the plains of Colorado. That and the urge to drive the riding mower fast and threaten to spray one of my mom's flower beds is just to tempting to pass up!
4) Walk around Nashville but not tourist style.
I want to walk around Nashville like I own it again. Take all the side streets, get some ice cream my diabetic butt shouldn't have (hey im on vacation people) and stop by one of the fine eaterys. I get a bit choked up going back because there are so many magical memories there. First kisses, chilly nights and the light mist that happens from all the moisture.
5) Go to the park and take photo's
I really want to take as much of brown county home with me as I can. So its time to grab a camera and go to town this time!
6) Take the kids to Mesa Verde in Colorado to see some real history.
My children have a healthy dose of Native American in them thanks to my lovely wife, so I would like to visit some of the reservations we have here in Colorado so they can get some small sense of their history. I have always been very interested in the paleolithic period of native americans on up to the last 200 years or so. Its good to be humbled by history and the Anasazi were some of the coolest people around.
7) Get into school one more time with my kids so I can push kids on the swings
I really enjoy helping my kids school out, and one of my favorite parts is pushing the kids on the swings. They get such a kick out of it, and in some cases I know its one of the few times they get to see an adult taking time out to spend time with them. The state of kids these days can be sad as most get neglected by their overzealous, immature and entitled parents who view their kids as possessions instead children (sorry I soap boxed that one but it is REALLY REALLY blatantly obvious with some of the kids there)
8) Find a cave and get my son into it
I love my daughter so much, but there a few things I know she won't do. Getting knee deep in mud in a cave is probably not one of them. I love spelunking, and I want to do it one more time. A cool environment is the best place for a person with MS to do a little over exertion.
9) Take my kids to Dinosaur National Monument and con my wife into coming
I really want the kids to see a neat Dino Dig and its on the way to Utah which means we could possibly visit her cousins. I really like her cousins Breezy and Heather. They were a lot of fun and my wife lights up and actually talks (if you know Wendy you know what I mean) with them.
10) Dance with my Daughter while I can
I really want to Dance with Alanna before its too late. She is so important to me and she loves to dance. I may not get to dance with her later so maybe I can dance with her now. Besides since I won't let he date till she is 30 it may be awhile for as well
I know its a simple list, but every one of these things means something to me. I also see a chance to make a memory out of them all. And frankly, isn't that what its all about. I want my kids to talk about the silly things daddy did when I am gone and with any luck, pass a few on to their kids (you know when Alanna adopts at 50 and Aris clones himself)
Well, I will draw my blog to a close this time but I have already started writing the next one up. Just the aspect of writing this stuff down can be so cleansing to the soul. It is great to get back in touch with your more positive self to remind you of the good things. Besides, I am totally gonna pimp my wheelchair out when I get one!!
Keeping my chin up!
Chris
Thursday, September 1, 2011
A little bit of chaos goes a long way
You know, its always odd to me, how often our life can completely confound us some times. I would never term myself as being OCD, however I do have certain ticks my darling wife has had to learned to deal with over time. For instance, DVD's and Blu Rays. I CANNOT endure them not being in some kind of alphebetical order. If any of you have children, you understand what a daunting task this can be. I have to have them in order. I dont make anyone else organize them, I dont flip out but if it isnt in place I HAVE to put it back in order. My comic books are the same way. I LOVE organizing them. I can remember days spent working at Mcdonald's IGA, and I loved looking down a row of can's all faced, dusted and in the right positions. Now I am not this way about everything. I dont care about clothes on the floor ( to a point, never more then a day's worth), books dont have to be in order other then by type or author. My garage while neat is by no means spotless. I like to organize and I am not really sure where this comes from. My parents were neat and clean people, but certainly not OCD about it. The military might play a small part, but I was never the role model Airmen about my barracks room, it was up to inspection standards but nothing amazing. What is worse is I see my son picking up alot of these same habits. In fact having a tattooed star wars fan, comic book collecting and roleplaying dad probably has not heightened his chances of a rock star like childhood. I have been molding myself a little me, though not intentionally.
Last time I saw my psychiatrist for MS related depression checks (and yes im still bubbly and loveable) I asked her about this. She told me that my need to organize those things around me that are important to me might be a form of control over my environment. Since my disease randomly takes certain aspects of my life away from me, I try to control those things that are less likely to change. I think this is quite a insight into my psyche but it makes me recall another experience in my life, which I will now relate/torture you with. It was my third year in the Air Force as a medic. I was sent to help out on the onocology ward because they were shorthanded and the ICU was light that day. Of course we had mostly veterans and retirees in the ICU and Onocology ward, not active duty, so it was a very civilian like atmosphere patient wise. I had a younger med tech who was in training and latched on to me because...well quite frankly I was a little more sane then Buckner the other med tech who normally worked the floor. Dont get me wrong, Buckner was an awesome guy, but I often suspected some times he would tweek his spine the wrong way and a little acid would leak out briefly from his youth. So, anyway, it was the blind leading the blind here. The new med tech followed me from room to room as I got vitals, checked bed pans, lowered/raised people's feet, checked compression hose, etc etc. We came to the last room which was a isolation room. We had to gown glove and mask up to enter. Inside after all this fuss was the tiniest shell of a lady, probably 40 something at best, though she looked to be 100 years old from the chemo's effect. This lady was super sweet but very needy (and understandibly so). She would call you in to reposition the tv, to raise or lower the shades a fraction of a centimeter depening on time of day, to move blankets up or down her legs. Alot of the medical staff was very annoyed with her. When we came to the door, the med tech in training said (oh I have heard about her, she is rough)
I paused a moment and looked the med tech in the eyes and told him "She is slowly losing everything. Even the simplest things like reaching down to move a blanket are taken from her. The only control she has over her life is through us, So, button the lip and let's go in and make her feel at ease" He stared at me in awe but didnt say anything. We stayed in that room for about an hour. After about 20 minutes of seeing to her needs, we spent the rest in conversation. After I did the lunch rounds I went back in and talked with her for probably another good hour. I came down to see her on my lunch breaks and stuff for the next couple weeks then she moved to another hospital as her condition worsened beyond what we could provide her. Could it be that in a way I predicted what has been happening to me. Am I trying to exert control over everything in my life. There are many (MANY) times I will catch myself asking the kids to do something for me, and ill stop as the thought of "Hey lazy ass get up and do it yourself) comes into my head. Worse yet am I making my children my servants. There is a fine line between normal chores and indentured servitude. Yes, I make my kids work for what they want to get. Nothing in life is free, and at a young age this has been instilled into them. I have no shame from doing that either. I know it will benefit them.
I do worry however that in the case of my son, maybe my more mature approach is making him grow up a little to fast. He can be VERY serious for his age. He has a very hard time making friends, and that worries me too. I do not want him to have a miserable childhood due to other kids picking on him for being different. While I was never really picked on, I also was not the prom king either. I managed to pass through high school some what low on the radar. And I know I was a huge nerd. Luckily I was also a country boy and made to work from a very young age so that beefed me up enough to not be easy prey either. I see the pain in his eyes when other kids ignore him asking them to play. It tears me apart. I dont really want to point it out or make it obvious to him yet because my hope is right now the naivete is protecting him a bit.
I never realize how much I could worry about small things until I had children. Now my head spins worrying about this dance practice, or Aris's homework, or volunteering enough at their school. My daughter is cute as a button, and very extroverted so I have little to no fear on her social life in school. Not that I dont watch out for her, It is just easier. My son is a very handsome young man and in really good shape. I thank god for that everyday. A part of me knows he will come into his own. Another part of me wants to shelter him from all the evils of the world but I know that I cant. Sometimes the hardest words to hear are "Daddy why do they tell me no when I want to play soccer". I just want to make it better for him without coddling him. I hope that as his male role model, He isnt picking up my odd habits. I already know he is very schedule oriented (another one of my bad habits) and has a hard time with doing things that arent in the rulebook. He is not a fly by the seat of his pants kind of kid. I know many of these traits will serve him well as an adult but its his childhood I want him to enjoy now. So I guess my question is, As I see my son becoming a little mini me how much is the right amount of influence. Because even when you think your not teaching you are!
Thanks for reading folks
Chris
Monday, March 21, 2011
Analyzing the Superman/Batman mythos
OK, I admit, I look at some silly things from time to time. But my son, clever boy that he is, proposed the infallibility of every one's boy in blue and red. Of course, he logically came to the conclusion that superman is not real. But, in his rationalization of the subject, he endeavored to understand why there would even be a batman if there was a superman. I found this idea pretty intriguing, so now you all get to suffer through a blog on it.
We all know superman. Fly faster then the speed of sound. Can pick up staggering objects such as buildings, chunks of earth and planes. Can run at super speeds, Blow freezing air out of his mouth, suck in with a hurricane like force, and shoot beams of energy that are equivalent to solar flares from his eyes. Oh ya and he bounces conventional weapons off his chest for fun too. Pretty amazing list of abilities. Now lets not forget his xray vision, his super hearing, and his super quick mind.
Batman on the other hand, Well lets see. Orphaned at a young age, serious trauma PTSD issues from watching his parents get killed. Rich beyond all means, a fine tuned physique the product of a regiment that would practically allow little else but time spent exercising. Martial arts experience in just about every known form. Gadgets that are extremely lightweight, durable and cutting edge. A keen knowledge of laws and their application. The almost unending need to travel the night fighting bad guys, meaning he never sleeps normal hours, yet still manages to pull off running a multi-billion dollar company.
Both of these are some pretty astounding feats. Batman's are of course more realistic, in that he is just a man, he can be hurt (and has). Superman has been hurt as well, but it always ends up being some form of universe ending thing that does it. Could either truly stand up to their tasks at hand.
Superman, raised by Midwest culture driven, ideological, assumed devout christian parents. Now we plunge his naive rear into a world filled with megalomaniacs, radicals, and even just the common hoodlum. He can hear EVERYTHING, he can see just about anything he wants. In other words he cant hide from the worlds evils. In truth for all his power, he cant fix the source of the real problem in the world which is mankind's own dissatisfaction with his current position and willingness to sacrifice others to increase that station. Would it even be possible, knowing superman's upbringing for him to forgive and pardon that many people. Or would having his beliefs destroyed be enough to push him over the edge. You have all this power, and yet none of the ability to stem the tide of evil at its source. In recent years they have sort of limited superman's intelligence down to being on a more normal scale. In fact, at one point superman comes into Gotham during a crisis and trys to "fix it" and this very point is proven to him by batman. "You are not a god nor do you have the right to pretend to be one" Despite his otherworldly origins we have to assume that he is still a product of his environment. Capable of only rationalizing most things as a "human" not as a kryptonian. I don't think someone in his position could do it without being driven insane at their inability to actually solve the worlds woes and protect it from itself.
Batman on the other hand, Well, Batman lives in the dark coils of humanities excess and greed. He was born understanding wealth, and quickly was taught that having everything doesn't protect you from losing what is most important. One could argue that with his parent's deaths, a portion of Batman's humanity died as well. Unlike Superman, I don't think he had any ideals to be lost. He has never had the ability to feel like he could solve all the problems of the world. To him it has always been a single driven purpose of one criminal at a time. Could someone like this exist? I am quite sure they do in one form or another. Police officers, DA's, even judges I think having spent time with the seedy underbelly eventually build up a tolerance and a understanding of what is needed and what battles can be won. Batman, to me is a all to realistic product of what society could truly create.
I understand the point of all this is discussing a moot point. Superman and Batman are both works of fiction. Neither exist in the world. But, I wont discourage my son from wanting them to exist. In this age where, kids quickly forget the core values of truth, justice, and the American way (A way which i pray one day we find again) I think a little hope of one day being the scourge of crime in Dacono is just fine for a boy age 7. Sure, like myself, he will grow up and change his mind several times before deciding what he wants to be. But maybe just maybe, he will carry a little bit of that boy inside him who wants a better world, one way or the other. And maybe that little boy will drive him to make it happen. I can only hope to be half the inspiration to him that my father was to me. And my father always let me dream. Even if it broke a few shovels (those who know me know the graveyard of broken shovel handles my youth left behind.)
Trying to quiet my overactive brain
Keep your chin up
Chris
We all know superman. Fly faster then the speed of sound. Can pick up staggering objects such as buildings, chunks of earth and planes. Can run at super speeds, Blow freezing air out of his mouth, suck in with a hurricane like force, and shoot beams of energy that are equivalent to solar flares from his eyes. Oh ya and he bounces conventional weapons off his chest for fun too. Pretty amazing list of abilities. Now lets not forget his xray vision, his super hearing, and his super quick mind.
Batman on the other hand, Well lets see. Orphaned at a young age, serious trauma PTSD issues from watching his parents get killed. Rich beyond all means, a fine tuned physique the product of a regiment that would practically allow little else but time spent exercising. Martial arts experience in just about every known form. Gadgets that are extremely lightweight, durable and cutting edge. A keen knowledge of laws and their application. The almost unending need to travel the night fighting bad guys, meaning he never sleeps normal hours, yet still manages to pull off running a multi-billion dollar company.
Both of these are some pretty astounding feats. Batman's are of course more realistic, in that he is just a man, he can be hurt (and has). Superman has been hurt as well, but it always ends up being some form of universe ending thing that does it. Could either truly stand up to their tasks at hand.
Superman, raised by Midwest culture driven, ideological, assumed devout christian parents. Now we plunge his naive rear into a world filled with megalomaniacs, radicals, and even just the common hoodlum. He can hear EVERYTHING, he can see just about anything he wants. In other words he cant hide from the worlds evils. In truth for all his power, he cant fix the source of the real problem in the world which is mankind's own dissatisfaction with his current position and willingness to sacrifice others to increase that station. Would it even be possible, knowing superman's upbringing for him to forgive and pardon that many people. Or would having his beliefs destroyed be enough to push him over the edge. You have all this power, and yet none of the ability to stem the tide of evil at its source. In recent years they have sort of limited superman's intelligence down to being on a more normal scale. In fact, at one point superman comes into Gotham during a crisis and trys to "fix it" and this very point is proven to him by batman. "You are not a god nor do you have the right to pretend to be one" Despite his otherworldly origins we have to assume that he is still a product of his environment. Capable of only rationalizing most things as a "human" not as a kryptonian. I don't think someone in his position could do it without being driven insane at their inability to actually solve the worlds woes and protect it from itself.
Batman on the other hand, Well, Batman lives in the dark coils of humanities excess and greed. He was born understanding wealth, and quickly was taught that having everything doesn't protect you from losing what is most important. One could argue that with his parent's deaths, a portion of Batman's humanity died as well. Unlike Superman, I don't think he had any ideals to be lost. He has never had the ability to feel like he could solve all the problems of the world. To him it has always been a single driven purpose of one criminal at a time. Could someone like this exist? I am quite sure they do in one form or another. Police officers, DA's, even judges I think having spent time with the seedy underbelly eventually build up a tolerance and a understanding of what is needed and what battles can be won. Batman, to me is a all to realistic product of what society could truly create.
I understand the point of all this is discussing a moot point. Superman and Batman are both works of fiction. Neither exist in the world. But, I wont discourage my son from wanting them to exist. In this age where, kids quickly forget the core values of truth, justice, and the American way (A way which i pray one day we find again) I think a little hope of one day being the scourge of crime in Dacono is just fine for a boy age 7. Sure, like myself, he will grow up and change his mind several times before deciding what he wants to be. But maybe just maybe, he will carry a little bit of that boy inside him who wants a better world, one way or the other. And maybe that little boy will drive him to make it happen. I can only hope to be half the inspiration to him that my father was to me. And my father always let me dream. Even if it broke a few shovels (those who know me know the graveyard of broken shovel handles my youth left behind.)
Trying to quiet my overactive brain
Keep your chin up
Chris
Wednesday, March 16, 2011
Rituxamib Round 1
Well, as those close to me know, I recently had to stop my regiment of Tysabri. Turns out I am JC virus positive, which is not as scary as it sounds. The virus is very common in the general population, infecting 70 to 90 percent of humans; most people acquire JCV in childhood or adolescence. By itself it is not a huge deal. However when taking immuno suppressants (drugs that lower your white blood cell making abilities) there is the possibility that it can cause you to have progressive multifocal leukoencephalopathy.
My neurologists suggested I try Rituxamib out as it has a much lower risk factor for PML. I gave it a shot, and I must say that round 1 REALLY sucked. On top of having rapid onset symptoms of the flu, and not just any flu, like the worst flu you have ever had, it also made me feel like it was hard to breath. I spiked a temperature of 100.1 during transfusion and was not able to finish the full first dose. Not a huge confidence builder in my opinion. My neuropathic pain has been 10 times worse since taking it however 3 days afterward most of the nasty symptoms have gone away, and I am left just with the pain. My sleep schedule is still all over the place as well.
I am so tired of all these different drugs. I am just beginning to feel like the drugs are worse then the disease. My headache has still not gone away. I still feel like my arms are just lit up with electrical pain and my legs are the same way. I have regained my balance back, and my strength seems to have mostly returned but I just don't like where this has left me. I am calling my Neurologist now about it, but every time I do I feel guilty about it. That is what this disease leaves you with sometimes. Alot of guilt. Guilt at not feeling like the man you should be for your wife. Guilt at not being the father you should be for your kids. I hear my kids fighting and I feel terrible that I'm yelling from a bed to get their attention. That is not good parenting. I feel bad that I'm not taking advantage of the great weather and getting outside and doing things.
I know I am just ones of millions effected by this disease. I am sure that I am better off then most. I feel like I am losing my mind some days. Its hard not to get selfish and see yourself first in times like this. I catch myself buying things I don't need at the grocery store, and not knowing why I do it. Every time I get an MRI and see more of my brain tissue gone I just cry. I am not ashamed to admit it. It becomes a game of what am I going to lose this week. I shouldn't vent, but then again hell, I am entitled to vent a little. I called the Doctor and of course no one can get back to me till Thursday. So tired of the bullshit some days.
Having trouble keeping my chin up today!
Chris
My neurologists suggested I try Rituxamib out as it has a much lower risk factor for PML. I gave it a shot, and I must say that round 1 REALLY sucked. On top of having rapid onset symptoms of the flu, and not just any flu, like the worst flu you have ever had, it also made me feel like it was hard to breath. I spiked a temperature of 100.1 during transfusion and was not able to finish the full first dose. Not a huge confidence builder in my opinion. My neuropathic pain has been 10 times worse since taking it however 3 days afterward most of the nasty symptoms have gone away, and I am left just with the pain. My sleep schedule is still all over the place as well.
I am so tired of all these different drugs. I am just beginning to feel like the drugs are worse then the disease. My headache has still not gone away. I still feel like my arms are just lit up with electrical pain and my legs are the same way. I have regained my balance back, and my strength seems to have mostly returned but I just don't like where this has left me. I am calling my Neurologist now about it, but every time I do I feel guilty about it. That is what this disease leaves you with sometimes. Alot of guilt. Guilt at not feeling like the man you should be for your wife. Guilt at not being the father you should be for your kids. I hear my kids fighting and I feel terrible that I'm yelling from a bed to get their attention. That is not good parenting. I feel bad that I'm not taking advantage of the great weather and getting outside and doing things.
I know I am just ones of millions effected by this disease. I am sure that I am better off then most. I feel like I am losing my mind some days. Its hard not to get selfish and see yourself first in times like this. I catch myself buying things I don't need at the grocery store, and not knowing why I do it. Every time I get an MRI and see more of my brain tissue gone I just cry. I am not ashamed to admit it. It becomes a game of what am I going to lose this week. I shouldn't vent, but then again hell, I am entitled to vent a little. I called the Doctor and of course no one can get back to me till Thursday. So tired of the bullshit some days.
Having trouble keeping my chin up today!
Chris
Thursday, March 3, 2011
Its been awhile
I know I know. Its been awhile. I don't know why I haven't written much. I think to some extent I've been a little down in the dumps. I had been doing really well, practicing Yoga, regaining some of my muscle strength. I shed about 40 pounds got off all my diabetes meds, and half my blood pressure stuff. Then, around November, it all slid into reverse. Now anyone who knows anything about Multiple Sclerosis, knows this is very much the trend for the disease. I should have known that I had the possibility of this occurring. Yet I think its only natural to live in a bit of denial. Its also natural to dwell in self pity when something happens as well. I felt a lot of doom and gloom during this period that has only started lifting around February. Yet as I examine it, I am the only one who put myself in this state. Inactivity through self pity can be as much of a disease as the diseases we have labels for.
So this is me putting pen to paper (or keys to monitor?) to help myself realize what I do have. I do have a beautiful and wonderful wife. I have two healthy and vibrant children who are very smart. I have a house that much like me is a work in progress. I have some pretty darn good friends who act as a back up support group. Heck, I even have people who aren't related to me in any fashion ,beyond blood relation to my stepson, that act like family to me. So I guess my first step in all this is to realize I am not alone, as evidenced by the prior statements. OK good, round one goes to happiness. (for the record I really hate the term stepson. To me that somehow reduces the importance of my son to me. He is no less or more important then my daughter is to me. I don't know why the term even exists, because to me at least it adds a qualifier to something that shouldn't be there. It down plays a very important bond that can be built, as if it grants some reason to love something a little less. Nothing could be farther from the truth where Aris and I are concerned)
I have reconciled a lot of my past within myself. No, I haven't committed any crimes, robbed any banks, or did any evils to my fellow man (OK OK a little gas here and there Wendy but is that really evil). I have been guilty of judging folks a little harshly, but I think everyone does that from time to time. We judge the important part is in the judging process do we also look inward and play our own devil's advocate. As anyone who knows me will say, I probably over analyze even simple things to give them a fair shake. Some of that reconciling has been here in this blog. I have had the privilege of jotting my thoughts down, getting a few opinions and moving on. But this is a important resource that have a available to me. Not only do I have a inner monologue, but I have the pressure of rereading it, analyzing my thoughts, and then having others look upon them as well. Really makes you think about WHAT you think sometimes.
I have had some rough and tumble times with the medicines for treatment for Multiple Sclerosis. Doctors and Scientists alike will tell you that medicines are suppose to work a certain way. Sadly there is absolutely no way in a human being we can conjecture with 100% certainty from day to day just how a medicine will work. In my case Tysabri wiped out my immune system ( Every little snotty nose I came in contact with I got some present), caused festering boils on my skin, and raging headaches as well as stomach upset. Of course we talk to the doctors and we get the well meaning but not completely factual statement of "Well it hasn't done this in other patients" Thankfully at least the Doctors in the VA stopped the medication (not that I gave them much choice) It did teach me that I need to trust and listen to my own body more. We have become far to reliant on a magic pill to cure all things. The fact of the matter is, despite what scientists and doctors may think they know common sense does dictate certain cliches stand true. Our body will adapt to things over time. And through adaptation comes change.
I am living proof that medical science cant be completely viewed as factual. I "should" be in a wheelchair. Yet I have managed through late night yoga and better eating to retrain my brain function a bit. I should be on pills and insulin shots, but instead I did the next to impossible and despite every med they had me on having the side effect of weight gain, peeled weight off. The fact of the matter is we just don't know. I have opted to do one more medication trial of rituximab. I am walkin into this extremely leery. I have decided this is the last chance for modern medicine and me. If I have even half of what I suffered under Tysabri occur with Rituximab, I'm done with it. I will go the holistic route perhaps eastern medicine route for treatment from there on out. Ive been using more and more holistic treatment anyway and have felt 20 times better from that then any of the "fixes" I've been offered.
I guess what I am saying in all this is. Ive learned some things in the last year.
1)
2)
4)
I realize this has been a very mixed bag of things. But I didn't write this for other readers, I wrote it for me. To help me realize some very important stuff. I invite you to do the same with yourself. You don't have to publish it like I do. Just sit down and write it out, even more then just thinking about stuff writing spurs you into a lot of self reflection. As you struggle to pin down that next sentence, you will find the flurry of activity your brain engages in will move you farther then you might think.
Keep your chin up folks
So this is me putting pen to paper (or keys to monitor?) to help myself realize what I do have. I do have a beautiful and wonderful wife. I have two healthy and vibrant children who are very smart. I have a house that much like me is a work in progress. I have some pretty darn good friends who act as a back up support group. Heck, I even have people who aren't related to me in any fashion ,beyond blood relation to my stepson, that act like family to me. So I guess my first step in all this is to realize I am not alone, as evidenced by the prior statements. OK good, round one goes to happiness. (for the record I really hate the term stepson. To me that somehow reduces the importance of my son to me. He is no less or more important then my daughter is to me. I don't know why the term even exists, because to me at least it adds a qualifier to something that shouldn't be there. It down plays a very important bond that can be built, as if it grants some reason to love something a little less. Nothing could be farther from the truth where Aris and I are concerned)
I have reconciled a lot of my past within myself. No, I haven't committed any crimes, robbed any banks, or did any evils to my fellow man (OK OK a little gas here and there Wendy but is that really evil). I have been guilty of judging folks a little harshly, but I think everyone does that from time to time. We judge the important part is in the judging process do we also look inward and play our own devil's advocate. As anyone who knows me will say, I probably over analyze even simple things to give them a fair shake. Some of that reconciling has been here in this blog. I have had the privilege of jotting my thoughts down, getting a few opinions and moving on. But this is a important resource that have a available to me. Not only do I have a inner monologue, but I have the pressure of rereading it, analyzing my thoughts, and then having others look upon them as well. Really makes you think about WHAT you think sometimes.
I have had some rough and tumble times with the medicines for treatment for Multiple Sclerosis. Doctors and Scientists alike will tell you that medicines are suppose to work a certain way. Sadly there is absolutely no way in a human being we can conjecture with 100% certainty from day to day just how a medicine will work. In my case Tysabri wiped out my immune system ( Every little snotty nose I came in contact with I got some present), caused festering boils on my skin, and raging headaches as well as stomach upset. Of course we talk to the doctors and we get the well meaning but not completely factual statement of "Well it hasn't done this in other patients" Thankfully at least the Doctors in the VA stopped the medication (not that I gave them much choice) It did teach me that I need to trust and listen to my own body more. We have become far to reliant on a magic pill to cure all things. The fact of the matter is, despite what scientists and doctors may think they know common sense does dictate certain cliches stand true. Our body will adapt to things over time. And through adaptation comes change.
I am living proof that medical science cant be completely viewed as factual. I "should" be in a wheelchair. Yet I have managed through late night yoga and better eating to retrain my brain function a bit. I should be on pills and insulin shots, but instead I did the next to impossible and despite every med they had me on having the side effect of weight gain, peeled weight off. The fact of the matter is we just don't know. I have opted to do one more medication trial of rituximab. I am walkin into this extremely leery. I have decided this is the last chance for modern medicine and me. If I have even half of what I suffered under Tysabri occur with Rituximab, I'm done with it. I will go the holistic route perhaps eastern medicine route for treatment from there on out. Ive been using more and more holistic treatment anyway and have felt 20 times better from that then any of the "fixes" I've been offered.
I guess what I am saying in all this is. Ive learned some things in the last year.
1)
Listen to your body-- It tells you the truth of things
2)
Use the positive in your life to help heal your ills3)
We really are what we eat. All this processed garbage we eat really does have a negative effect. Don't believe me, Try organic for a month. I mean REALLY try it. Shop around you can find organic cheaper then you think. I dropped my blood sugar almost 100 points by simply changing the quality of the food I eat. Not only that, but it also caused me to reduce portion sizes because I was feeling more satisfied by what I eat.
4)
Most important of all, Inactivity does not lead to progress. You will not find motivation unless you move. Plain and simple. One step will lead to the next but sitting on the couch is guaranteed to lead you nowhere.
I realize this has been a very mixed bag of things. But I didn't write this for other readers, I wrote it for me. To help me realize some very important stuff. I invite you to do the same with yourself. You don't have to publish it like I do. Just sit down and write it out, even more then just thinking about stuff writing spurs you into a lot of self reflection. As you struggle to pin down that next sentence, you will find the flurry of activity your brain engages in will move you farther then you might think.
Keep your chin up folks
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